I've dealt with fibromyalgia for over 20 years. I've been shunned, labeled as lazy, a procrastinator , crazy, liar, drama queen... etc. No one cared to understand me or to take any time to research fibromyalgia and educate themselves about it. I stay to myself most times. I'm not able to handle loud noises, crowds of people ,fast motion or vibration. I hurt continuously. I only go places if I absolutely have. By the time I get home I'm completely wiped out. Fibromyalgia is no laughing matter. Be kind to everyone you meet. You never know what a person is silently going through.
Ive had a diagnosis for 15 years so I know how you feel. You just have to have the attitude that it's their problem if they don't understand. Always stress that you have a disability and there is no cure. I can personally recommend Amitriptyline, at 25mg have had a toning down on muscle spasms etc. Yoga helps a little. Good luck.
I know how you feel. When asked what part of you is affected and you say every part you get a blank look. I even had to educate my husband about it when we started dating. Even now I think he still struggles to understand.
I go thru all these and have for too many years. Just try to smile thru the pain, if you can, if not talk to a real good friend, or cry with someone who cares.
Im wiped out before I leave the house :D I do the trip by sticking a matchstick into each eye to hold them open so I can kick my adrenals into gear , by the time I get to where Im going Ive had plenty of time to give myself a pep talk, resolve my "performance" anxiety before acting like Im a living , breathing normal person. I Its ok, it only takes a couple of months to recharge my batteries back up to their normal 3% .
The emotional rejection from not being believed when none of my physical pain was unexplainable has hurt me the most. I am 73 and have had this pain for 35 years. I rarely tell anyone I have it.
When I felt that something was wrong with me (I was 13-14 at the time) my mum took me to a bunch of doctors to find out what was wrong with me. I remember the first doctor I went (He was a orthopedist), I told him " When I go to the dancing lessons, I'm in pain the most" and he said: then stop dancing. I was so frustrated. As soon as I went out of the office I told my mum I refuse to give up dancing ,lets find another doctor. I went to another doctor, and another and I spend so much money in physiotherapy, pills and doctors and nothing helped. Once another doctor said: its probably all in your head.(imagine saying that to a 15 year old that's in pain and feels helpless). Thank God, when I was 18-19 I found this physiotherapist and after I went for a couple of sessions to at least ease my pain, he told me : I'm almost sure you have fibromyalgia ,you should see a neurologist. And let me tell you that was the day everything fall in to place. Anyway long story short (really did not intend to write this huge comment) , seeing this symptoms that others have makes me feel like I'm not crazy, its not in my head, they do exist!!!!
Lol I wish we had access to more than a few doctors... I was showing signs clear back in grade school. Running was hard for .e because I could never build stamina. It burned so bad. I was apparently just being lazy. I tended towards reading, drawing, videogames. Depression took all those this away from me as housework began to pile up and I just couldn't keep up. I'm a very high energy person, and adore dancing, too, though I picked it up as a hobby in the middle of my depression because the moves were fun and wide moves didn't hurt like small ones did. My body complains loudly with stiffness despite the being a daily thing now since January. I also want to add that I was bullied by teachers and students relentlessly for this and my weirdness. I may be autistic, too, but i'm making efforts to utilize the intensive focus and patterned thinking. Right now, though, my biggest concern is my son. He shows signs of autism, but it reminds me of how my fibromyalgia hits. He had a very traumatic birth (no one's fault) and was in the hospital for a long time in severe pain as a infant. The way he reacted to the cooling blanket they had him on at one point, and how strange all the doctors admitted his reaction was...plus the fact he prefers reading and building and playing videogames to running and playing with more than coasting vehicles...i would not be surprised to find out he is dealing with fibromyalgia as well as his autism, too. Me getting a diagnosis would help a lot in getting help for my son, I feel, as I have the will to fight for him and protect him if any bully tries targets him as 'lazy'. And i've had plenty of time to learn to fight around a disability i've had all my life. I'm scarily efficient 😈.
Same dear. Many of the doctors even not aware of this. In teen age, hearing this,its in your head ,stop dancing ,how frustrating. Thank God ..God gives atleast later some solutions for everything. Pray God give complete cure posible !! Atleast in future for sure !
Hi Mari the NIH says women with fibromyalgia have a prevalence of a perineural cyst 42%. Don't believe it. That 42% was 8% couple years ago. I believe all of us have Tarlov cyst's on our spines 100%. Don't freakout it's very treatable.
@@trashcatlinol I’ve had symptoms since childhood, and my mom has had almost whole adult life. When my kids were in HS, we moved and had a neighbor who had a non-verbal autistic son. Since we homeschooled we were around to help her when the alarm system went off cause he would break out of the house and just run. Eventually he was able to communicate through assisted typing. I recall thinking before and after he was able to communicate, that many of the symptoms he was having seemed heightened even from Fibromyalgia. The heighten reaction to stimuli. I remember having a graduation party for my son in backyard and Josh didn’t want to come over with his mom, so he sat up on his old play set peering over the fence observing everything from his yard. From 30 feet away, with all the noise of the guests, I started whispering to him about what was going on, the musical items we had out on display, etc. I told him when he was ready, he was welcome to come over and look. Within a few minutes some of the people left, and so our party got quieter for a bit, and Josh started to climb down and bang on his gate. His mom thought he was attempting to run again, but instead he lead her to our yard where he made his rounds quickly, looking at photos and giving each of the instruments a quick once over. Then he wanted to retreat to his perch on the play set and was again content to watch from his yard while his mom visited in ours. His reaction always seemed to me like he was overloaded with stimuli that was uncomfortable, just like I would want to get away from things when having a flare. Unfortunately he could communicate for the first 17 years of his life, so his support system had no way of effectively helping him, but just guessing. Unfortunately because to many people in his life had always assumed because he didn’t talk, that nothing was going on inside, and so he basically had to teach himself everything by observing others when things in his environment were calm for him and his body was not screaming at him as well.
I’ve had so many people say they get tired too … it’s not tiredness we experience, it is overwhelming debilitating exhaustion to the point you can’t function. I know what tired feels like and Fibro is very different. Sending gentle hugs to you all.
I feel you. I don't even have fibromyalgia (I think) but I have this crippling exhaustion when I can't even maintain a sitting position for long. My body is weak and limp for no apparent reason. I love lifting weights and my physique is not that terrible, but surprisingly gym doesn't help me with this issue. If anything, I'm often unable to function for several days after a workout, so I can't do it as often as I want. I've quit smoking and drinking, it didn't make any difference either. I don't know what to do. Doctors always shrug and tell me I seem healthy. Most perceive me as a slob and a malingerer. I feel like I don't belong to this planet. I wish people would understand how painful, shameful and depressing it can get.
I wish I could remember what healthy tiredness feels like. Even though I can’t remember it, I know that what happens to me now isn’t that. It is exactly what you described. Debilitating and depressing! There were so many things in this video that I didn’t even realise were attributable to Fibromyalgia. I felt very emotional watching it. Your hugs cheered me up! ❤
Lol....I still can't finish one sentence without forgetting a word or 2....People definately think I'm crazy or have early dementia....getting used to it now...🤭
@@elizabethloyd3713 right. Eve though, Fibro goes back a few generations. My great grandfather, my Grandmother’s brothers and one aunt all had it too. My mother always just said it was whining.
Sorry Darling I also had to break a long term relationship which meant everything to me ( it wasn't romantic) only because it was extremely hard for the involved parties to understand and I was tired of explaining myself every now and then. Iam dealing with the after effects of coping with out them but am more than grateful my environment is a little more peaceful and I don't regret removing myself from there company
Having a flare-up at work, didn't celebrate my birthday this week because I just couldn't do anything. Watching this made me tear 😢 up. Hugs and healing to all of you with invisible chronic pain and still trying to make life work. 💜💜💜
I know how you feel and what this invisible condition can do , being so many different symptoms it's virtually impossible for anyway to really understand how debilitating it is and you feel so alone 😢 just trying to get a diagnosis takes years and many tests ,you know there has to be something wrong and you are not being a hypochondriac and when you tell everyone even then they look confused because you look ok they can't understand only the ones who have it can . Sending hugs and all things good 💜💛
and Happy belated birthday mine is in ten days and pray I am able to enjoy it but been in a bad flare up for a few weeks now so not holding my breath, gentle hugs
This is so true. I wish people understood this illness more, just like having any other illnesses. Our symptoms are very similar to lupus. Fibro patients matter too💜💜💜
I am a single parent to an autistic child who has not been to school in the last year. I also have endometriosis and arthritis in my neck and hands. Life is pretty difficult to say the least. Sending love to all other sufferers of pain x
Every single one I can relate to. I managed to mow the lawn earlier, and I'm now laid on my bed in absolute agony, and it's only 18:11. It will affect my tomorrow too, I'll be lucky if I can walk. It's so hard pacing when things need to get done, and there is no one else to do it for you.
Hello,@Ethericrose, I have been trying to find you to reply back to you. My computer is touchy so it kept deleting my comment. I wanted to say how sorry i am that your parents didn't believe you as a child when you said you were in pain. My mother didn't believe me either. I used to cry and roll around on the floor and she would tell me it was just growing pains. She was later diagnosed with fibro in her later years before she passed and my Dr. doesn't believe me either so i go through every day and night in constant pain with no relief except gabapentin for my diabetic neuropathy. I just don't understand how the doctors now adays don't know a thing about it. I hope you are okay and managing your pain better. I feel for you and i understand. Hope you have a good day when you find this message. Sending love and healing vives your way. 🙏🙏❤❤☮☮
@SunshineDawn7 Hi, thank you for finding the time to comment back. 🤗 I was offered Gabapentin, but I only tried it for a week. It gave me chronic water retention, so I told the Gp I would not be taking it. I've always been slim, and gaining that amount of water/ weight on only 100mg per day in one week would affect my mental health. The doctor stated he would be increasing my dosage over a few weeks up, too, 6300mg a day. I declined! Can you only imagine how much weight gain I'd aquire at that high dosage? I just take each day as it comes. It's all we can do, yet please know you are not alone, I'm sending healing energy to you, Sunshine, and a huge loving hug. 🤗💐💚
@@Ethericrose I am so glad to hear back from you 🥰I hear you about gabapentin 😞I didn't start gaing weight right away with the Gabapentin but suddenly started gaining weight out of the blue between the gabapentin and the amitriptyline. I am supposed to be taking 600 mg. of the gab but have been getting bye with 400 I do take hydrochlorothiazide for water retention but i have gained about 50 lbs in the last year and i haven't change my diet much. I eat chicken breast and vegetables almost every night. I don't know if it it is worth it. I really think the weight gain was mostly from the amitriptyline but probably the gab. too. I had gone off the amitriptyline years ago but then my Dad, Aunt, Cousin etc.passed away. I lost like 11 loved ones in two years. Now maybe i should go back off it again because the weight gain is making me depressed. Isn't that a kicker? Depression medicine making me depressed. It is supposed to help with pain also but i don't think it helps. I really hate the gab. it makes me dizzy and hurts my stomach but i couldn't walk without it from the neuropathy. It is so hard to know what to do with these situations. Sorry about writing a book here. I was surprised when you mentioned the weight gain with the gab. I think i might need a new Dr. I hope this finds you feeling better. Thank you so much for your kind words and please know i am thing of you and hoping you feel better with every passing day ❤❤🌻🌻🤗🤗🌞🌞
I had anxiety to the point I was wetting myself multiple times a day because of how tense the pain was making me. I caught a cold and hoo boy. My doctor probably thinks i'm a hypochondriac looking for attention after her 'that's normal' comment when I brought it up. This is all before I found out I have fibromyalgia. I still have to bring it up to my doctor, and it is incredibly worrying I won't be taken seriously. People walking past me physically hurts. That is not normal. If i'm told it is, i'm burning the hospital down. And no it's not just anxiety.
Change doctors. No one needs to be patronized like that! Find a female practitioner who understands the syndrome, a rheumatologist if you can find one.
burn the hospital down for me too .... bloody useless.... pain management/embrace the pain.... when they found out later....I was still not down the gym at least twice a week.... they said I was not engaging with the programme....
Now I know why I sweat so much, I thought I was the only weird person in the world,when it’s not even that hot ,I’m sweating like a race horse most of the time n it can be very embarrassing,blessings to everyone ❤️💛💚✌️🙏🏻🇦🇺
My excess sweating was from hormonal imbalance. But at other times it was the FM. Makes it hard to sort out certain FM symptoms when they can be so complex😒💖🇦🇺
I have to wear a headband no because of the 80's when I grocery shop man I start sweating then the other day nothing but I sweat. Body odor.thanks I never said that before. I thought it was only me ITS NOT.
Sweating is the worst for me. The pain is always there but the sweating creates problems. I can’t wear makeup any more because I sweat it off. I take a shower and dry my hair. Immediately I am sweating and my hair is wet and droopy and my clothes are wet. My clothes are ALWAYS damp and it is uncomfortable and embarrassing. I’ve been to a hyperhydrosis specialist for years. No good options to help. Creams and lotions are too complicated and time consuming to do much good. Too old to take oral meds as they would dehydrate me even more than I already am and could cause problems with my heart. I have dry mouth which causes problems with tooth decay. I’m dehydrated all the time. And this is just one of the many problems fibromyalgia causes. It’s a very very difficult condition to live with that leads to depression.
Oh my word. I did NOT know the body temp thing was fibro! I've complained of that so often! Like, the other day, I was so HOT when it was 73 degrees in our house. The next day, I was so COLD when it was 80!
I just shared this to my f/b news feed, as well as other articles about fibromyalgia. If just one other person reads an article and says "that's me!", I would be happy. I was diagnosed years ago when only 5 symptoms were recognized. I will be 78 y/o soon. I struggle everyday, hoping I will have enough energy to get out to do one errand. It is a linely and frustrating life, but by GOD's grace and goodness, I am still going on my journey through life. 😊😊😊
I find the sweating difficult and suffer with sensory overload sometimes my sense of smell is so acute I feel dirty even if I have just had a shower because I can smell myself. It makes me fearful as can other people smelliest ?
I have lived with Fibromyalgia for 15yrs. No one really understands it until they have it themselves. Ever symptom in this video I have suffered over the years including relentless bouts of insomnia. Fibromyalgia is very real. I wish more people understood that.
This is so true. I’ve had fibromyalgia for over 20 years, now Lupus and some days are too challenging. Had surgery, and my tissue is swelling all the time, told it’ll be probably 3 extra months to heal. I’m not young any longer, but still feel the pain of not having the ability to plan better, or cook and clean, etc. I cherish the good days though!! 😊
I am diagnosed. It's annoying to make people understand as they think i am lying. It hurts a lot. May Allah ease the aches and pains of all who are suffering with the same. Aameen!
@Ashara Saleem. I am so sorry you have this condition, I have it too. It is so painful, but people don't believe that we have this illness. It cannot be seen so that means they doubt us, which is very unfair. What we have is very real. And it's hard to live with too. But God is good and sends us the strength to get through all our troubles. Thank you for your lovely blessing for all of us suffering with painful invisible disorders. May God bless you and all of those you love. May peace and joy be yours today and always. In Jesus name. Amen.
@JL-527 Thank you for sharing your experience. Mines are different day by day now. Has your these medicines worked out? My Thyroid level is normal but I'm taking VitaD 50,000 once a week.
That pretty much sums up how I feel about my exact same symptoms . They just can't grasp it because they can't feel it themselves . I gave up trying to explain it . On the really bad days , I stay away from people . Tired of the looks too . Mostly though , I'm tired of constantly battling the symptoms when I'm around people . Both family and friends . Constantly trying to hide the pain , fatigue , and mental fog , only makes my bad days worse .
I hate when I have to pee every 5-10 minutes. When I first became sick with Fibro, or atleast when it got to the point I could no longer function, that was one of the main symptoms that I never duscussed with anyone. The doctor who finally diagnosed me brought it up and that's when I knew she'd hit the nail on the head. The pain and fatigue could be explained by other things.
That sounds like your Sympathetic Nervous System is stuck on the 'on' position...that's what problems with the Autonomic Nervous System will do...also being under a lot of stress..especially emotional stress..can cause that response (think Narcissistic Abuse Victim Syndrome!) Apart from FM..have you been checked out for Diabetes and hormonal issues?...they can both contribute to frequent urination..it's a symptom that drives me nuts as well! Have total empathy for your suffering.
@@jo-annahicks3324 was diagnosed with diabetes last year but have had Fibro for more than 10 years. Irritable Bladder is a fibro symptom. I agree with your prognosis- have had a life full of trauma and stress and CNS is on over load.
@@volpeverde6441 it drives me mad. It makes sleeping, or trying to go to sleep, very difficult. It only happens every few weeks, usually when the rest of my fibro symptoms are also bad.
@legoqueen2445 I sleep 1 or 2 hours at most.... twice, three times a night or cat-napping all day/fibro fog....not had a proper night's sleep since 1997.... sometimes you wake up and feel like you've been ran over by a bus....I thought sleep was meant to be refreshing....
Yes to all of it, I feel your pain- literally and emotionally. For me, it’s people thinking I’m lazy hurts the most as I’ve always been an extremely busy person, In fact taking on too much. I sometimes wonder if that was the cause for me. My ex husband used to call me lazy even though I got up at 5.30 am and never sat down again until 11 pm. I’m sure he was the instigator of my health problems.
@@jo-annahicks3324 yes, I agree, even though I don’t know what that is, he was definitely very controlling and he used my insecurities to make me feel guilty for being lazy, even though I definitely wasn’t! He still tries to manipulate me through how he treats our two sons, who are adults now, he does the same to them.
I don’t know how I came across this,but not only one of the papers you showed is me,ALL of them are. I was blown away. And just a few days ago,I broke out with a rash on my neck, that I couldn’t explain ! Over 30 years with Fibro and I can’t get over this video. Thank you SO much. I’m in tears here ,just knowing I’m not crazy after all !
Just because we're not in a wheelchair doesn't mean we are not sick. We definitely don't feel well most of our awakened hours and even during our sleep. I even have dreams that I'm in the hospital; so, yeah... I sleep and am still hurting!!😢
I was diagnosed about 12 years ago. I’m married with 5 kids and nobody in my family understands or wants to. I struggle so much and feel so alone sometimes. Reading your post brought tears to my eyes because I know now I’m not. People go think you’re doing it for attention or you’re lazy and for years, before my diagnosis, I believed it. When I was told I had fybro I cried because I wasn’t crazy. I wish more people understood. It affects so much of your life and nobody knows. ❤❤❤
I understand the struggle. If Jesus isn't already your Savior, please accept Him now. We are close to the rapture. No more pain for eternity. The tribulation is close and no one wants to be here for that. If He is already your Savior, you can be very encouraged. We're close to leaving this world.
One of the hardest things I find, is when I begin questioning myself. I think that also comes from when I see doubt reflected in the eyes of others. I start to wonder if maybe it’s not as bad as I think it is and maybe I’m just overreacting to the pain and becoming a suck. It’s awful when you start to doubt yourself! I know I don’t overreact to pain. I’ve been getting hurt since I was a really little kid and it was always such a traumatic thing for my parents when they had to take me to the ER. I wasn’t very old when I started hiding my injuries from them. I developed a “Crutches and Stitches” rule.. if I couldn’t stop the bleeding myself and needed stitches or I couldn’t walk and needed crutches I would tell my parents. Otherwise, I kept it to myself! I broke my nose at school when I was maybe 8 and I stopped my nosebleed myself, cleaned myself up and went back out and played the rest of recess. Never said a word to my parents. I just have to keep reminding myself of the many many times(and I do it almost daily now) that I’ve survived incredible pain. Pain that I’m certain would’ve made my critics and doubters lose their minds! So Please! Please! Don’t doubt yourselves!! It doesn’t matter how others think about your pain. It’s how it feels to you feel that matters. Pain is relevant to the person who is experiencing it. When another person can feel you pain for you? That’s when they can start judging you about it. Hugs to all of you!♥️
I've not been diagnosed with fibromyalgia but I can relate to some of the symptoms on your list. I suffer from Lyme and MCS which I'm told are related to fibromyalgia. I also lose my balance and it looks like I'm drunk when I don't drink alcohol.
@Patricia Herlevi, I was recently diagnosed with Fibromyalgia. One of the many symptoms I have is loss of balance. I lose my footing very easy, especially if I try to turn around on the spot. I hope you don't have Fibromyalgia because the list of symptoms is long unpleasant, and includes every area of the body, inside and out. God bless you and all of those you know and love.
Patricia, and all here, I have chronic late lyme and fibro for years, and yes they absolutely are related my doctor say. For me one can trigger the other. The vertigo and leg buckling are just the worst feeling hang in there ❤
@Katrina That's a great question. I don't have a long list myself but I tend to have the same issues depending on the day. Once in awhile a new symptom pops up so I don't doubt they can change depending on your fibro sensitivities.
For the people who have fibro & have the terrible pain & burning in their toes, feet & ankles like I do, I found something that really sooths the pain and that's Vicks Vapor Rub. Massage it into your feet & ankles then put on some cotton socks. It especially helps at bedtime during the night..hope this helps someone......
Thanks, am going to try that tonight, maybe the menthol "confuses" the nerves. Those sudden stabbing, gripping pains are horrible, they get super bad as soon as I stop moving.
Not so common it seems with fibro. But is very real for me, is continual bladder problems with frequency of urinating, especially at nights so hardly any sleep, then that ruins the days too.
Besides excruciating pain in my legs my worst symptom is the sweats it just pours out of my head down my face and drops off my chin! I don’t like going out in summer because that makes it worse than ever My hair flops and drips clothes are soaked in sweat it is truly depressing 😢
Thank you, even my adult children, don’t have an idea what has been going on with me for 23 years. The big “ F”. All you said, are what I have. Fibro fog, my grandkids think, grandma just forgetful. My husband get frustrated, with I’m talking longer to process his questions! I’ll send this out to all of them!
I have some of those symptoms. My lower extremities (my legs )🦵 get hot at bedtime. I'm been having the brain fog at work. Forgetting how to do procedures. Lots of neck tension that never goes away even w medication. I work 15 years at a physical job 45 hours a week on my feet standing in one spot. (Picture an Amazon worker) . The job has caused so much trauma to my body. It's like my body has shut down. I can no longer do the job. It's like my body has quit. Good pay, good benefits, but my physical health is declining. I need to get checked out.
If you haven’t been diagnosed you should do this asap and then apply for disability while you still can. It will be a big cut in pay but at least it would be something. I waited to long to apply and can’t get anything.
Thank you for posting this video. I'm 55 and can't believe how this makes me feel. Some people, especially family don't believe what you are going through. There's days I just want to lay in bed and cry.
I believe you too! I hate when people say "you don't look sick" or say it's all in my head. I have had fibro since a car accident over 30 years ago. The fatigue and brain fog drive me nuts and some people think I'm just lazy and stupid. I also have migraines which can give brain fog so I get a double dose of it at times. I really don't know many people who have fibro so it's comforting to hear from others.
@@st2rg2zer I am 70 and on the spectrum of autism. My family does believe me. And most people suggest that I don't look/appear to be. So I tell them I am here to educate people about it. The proper response from people should be to ask them what is their experience. So I offer understanding to others because I get what I need from Jesus spirit in me. Jesus knows ❤😇❤
I was diagnosed in 1995 by my GP, and now I see a rheumatologist. Not all rheumatologists are equal! The one I have now is amazing. I’ve gone on two different meds and I see her every quarter. I moved 60 miles away, but it’s worth a half a vacation day to take off to drive down and see her.
I have RA. I don’t believe that even my family really understands what it’s like- even tho they’ve seen me in the midst of a terrible flare. I’m so sorry you’re going through this & can both empathize & sympathize. I wish you well. ❤
Yippee! My doctor changed my 43 year old diagnosis from Atypical Reactive Arthritis to Fibromyalgia. 43 years misdiagnosed. I took some pretty nasty medicine during that time, some of which might be responsible for my being diagnosed with Multiple Sclerosis 12 years ago. So now it’s MS AND Fibromyalgia. Oh joy! What else is there to say?
Sorry to hear. I can relate, RA has been my baggage for 45 years and Fybromyalgia for about 5. I don't talk to people about it because there's no point.
Thank you so much. I didn't know that some of the symptoms you listed was part of it. The pain is always there. Some days worse than others. Get so fatigued I cant move. Brain fog gets me to where I get confused and not sure what someone is saying to me. I get super hot for no reason. Legs and muscles jump around a lot. Theres more but it can make life miserable most days. Its really upsetting because you are in pain, so tired you feel you cant function, cant think straight and people think you are just saying this stuff. Get up. Lets go. You cant be that tired. And so on. Hopefully someday people that dont have it will understand what people with it go thru. Its no joke. Thank you again for the information. It helped me to understand a little more about it. I was diagnosed 12 yrs ago. I also break out with lots of rashes. Itchy all the time. Wonder if this could be a symptom too?
@Laura Esthers, Yes, rashes are definitely part of Fibromyalgia. The sweating and feeling uncomfortably hot off and on or sometimes for days on end, is too. Tinnitus is another symptom. Dry eyes and mouth. Pain in the jaw, head, neck, and all of the body's joints and muscles, Spasms. Incessant itching. Excessive dryness of the skin, restless legs at night, body aches more when the weather is cold or raining. Difficulty sleeping. Constant headaches, or migraines. Sensitivity to light, sound and smell. Loss of balance and coordination. Brain fog and memory loss. Food intolerances, severe period cramps. IBS. Fingers and toes pain and tightness, weakening of the hands. Trouble with bowel and bladder. Loss of libido. Vision impairment. And the constant overwhelming tiredness and chronic pain all over the body. And that's not all of the things included in this condition. Those are just the main ones. As I learn more about this condition, I am hearing of more and more. And it's all invisible stuff, so no one believes us. It's a miserable.condition, but I am doing my best to stay positive. I exercise gently daily as much as I am able, and swim, and eat healthily, plus I'm considering doing yoga very gently. I have started taking TURMERIC CURCUMIN, BLACK PEPPER, & GINGER in tablet form because that combination of spices is very good for muscle and joint pain. I hope this information is of some use to you. God bless you on your journey with this condition. May God give you strength and endurance, and peace, today and always. Just know, you are not alone
@@carlycharlesworth1497 thank you so much. Ive only known 2 people w fibromyalgia. Its an everyday battle. I get very bad rashes and my body has put me thru it. I dont know what its like to wake up one morning and not be in pain or starting another rash. Hopefully one day I will know what that's like.
I agree with you. I know many others agree too. One day we will wake up and be out of pain. Feel like going somewhere and actually enjoying it. Or not worrying what rash Im getting that swells my face up, and or body. I look like a bright red lobster and swells up horrible. Painful also. Someday soon would be great for anyone that suffers from it.
I was diagnosed with FM a few months ago, but in retrospect I now realize I`ve had it for years. My MD recommended hydrotherapy (pool) and that was what made me say "thanks but no thanks". The first therapy was actually pleasant and I was able to do all the exercises. The Therapist advised me that I would be very sore after the first time and also that I would urinate a lot, but did not say how long this would last. The pain and soreness lasted for ten days, and complete loss of bladder control lasted for two and one-half days. When all that finally settled down I had two days that were almost pain free---then I had a flare-up that lasted a week. I feel like I`ve been run over by a truck. I was supposed to have five more hydro sessions that had already been scheduled, but today I called the PT facility and cancelled all of them.
All of these are SO true. I went into a fog at a family gathering...didn't hear someone say "hi" to me multiple times. Now I'm labeled worse than "rude" 🥺☹️😳😣
OMG! My doc and I have just begun to look into fibromyalgia as the cause of a lot of my medical problems, and I have almost every single symptom that is listed here. The brain fog, the being "that person," walking funny if I'm able to walk at all, not being able to bend, the strange and sudden "jerking" movements, and the GI symptoms are so concerning. But my personal "favorite" is being labeled as "lazy," It's just maddening that no matter how you try to explain your pain, and why you're so debilitated, the people who label you "lazy" have absolutely no compassion or empathy for you. They all think you're exaggerating or outright lying about your pain. My daughter's fiancée (he/him) almost came to blows over it, with him insisting I was faking most of my pain just to get out of having to work. It's terribly difficult.
I feel badly that so many FM sufferers ARE suffering. I got a great doc who told me a few things “this might be”, sent me for treatments that didn’t work, and the following year I was diagnosed. He was the best doc I had ever had, and sat in my car and cried after he told me he was leaving the practice. The docs I’ve seen since haven’t been half as good as my original doc. I keep with the original plan and have more good days than bad.
I have everything you listed too. I feel people judge me too and it comes down to them not understanding fibromyalgia. I have to tell myself that. It's so comforting to see this video cause , yes, it makes me feel validated it's supportive. Thank you for your kindness in sharing this
Could that also be a symptom of Systemic Candidiasis? Sometimes I feel like my ears are full of water, and get 'white snot' in my nose, from yeast. I am constantly getting ear swabs, at the doctor's...and most of the time,....it's Candida (thrush). Could this also be part of your symptoms?
At last I've read what happens to me all the time, sweating copiously which is so so uncomfortable etc etc it is atleast comforting that I'm not the only one!
I to am a fibro suffer. At 70 I now realize how young I was when it started. I hid most of my aches and pains from my parents but when it was more then I could stand I'd mention to my parents how I felt and got told it was all in my head and that I was trying to get out of doing something. Aah.....those were the days huh! Being silent because of this affliction because of peer pressure of any kind...parents, siblings, friends, school.....should never happen. The world should be aware just how strong we are to endure this crappy excuse for a disease!
I hear you. I keep telling my Dr something is wrong and they keep telling me there is nothing wrong with me. I've lost all faith in our medical system.
What is there to dislike . I suffer so much pain and many stiffness, while tavelling a kind of dizziness, nausea, a kind of head ache , some allergy type of side effects on any medicine used any time ..all due to fibro. The kind of fatigue after any activities unexplainable. Yes ! I still live in positiveness and active ! May H God bless to cure this . Soon get a solution
Yes,totally agree,some of my kids think it’s all in my mind,so I’ve stopped talking how I feel,most of the time I suffer in silence ,finally seeing a specialist, beginning of next year to be finally diagnose with what I already know is fibromyalgia,stay positive n blessings to everyone ❤️💛💚✌️🙏🏻🇦🇺
@@geethanair5803 I am sorry that is terrible. I am thankful to have someone that believes me and can see the pain I am in all the time. I can only hope that you can someone will believe you and start to understand.
OMG. THANK YOU. I’ve been dealing with this for years along with Angalosing Spondelitis. It’s extremely frustrating to suffer through due to the symptoms. No one can see or understand things they can’t see..
You are amazing! As a child who already suffered from fibromyalgia in the early nineties (today I am also diagnosed with Sjogren's syndrome), I know how much suffering it is that no one believes about the symptoms you mentioned in the clip. Thank you from the bottom of my heart. And for everyone who suffers from this terrible disease, which unfortunately to this day even family members find it hard to believe it's real - I believe you!!!!
Yep me too. It was so difficult to get diagnosed with anything from the time they labelled me with Fibromyalgia 10 years ago. I had 9/10 symptoms of Sjogrens syndrome. It took my teeth rotting , nearly going blind with ulcers in my eyelids, a heart attack and multiple TIA's before they eventually diagnosed Sjogren's. Hope you had better luck. Cheers from Australia.
@@kathyw3466 omg....All my teeth rotted....🫢Is that from Sjogrens? I had beautiful, strong teeth with onlyb3 fillings when my fibromylgia hit at 37 full blast...and then all my teeth started to go, one by one, infections, splitting into pieces, it was horrific!!!
I'm having a flare up now and it's almost unbearable painful! My legs, I experience the same things you do and also have restless legs. All the other symptoms you describes too! Skin issues and dry mouth etc too. It quite terrible but thankfully I have a kind husband.
I as diagnosed with Fibromyalgia 30 years ago…I worked 12 hour night shifts in a printing company… I pushed myself at work but otherwise couldn’t stay awake in my “off hours”…. Worked this following 30 years until I went blind…I’m 71 years old and still suffer…but I push myself hard to get things done…life is too short to not…I don’t take medication of any kind…I’ve survived this long…hopefully I will for a few more years
I was diagnosed almost twenty years ago and this video is the first time ever that it made me feel not alone with it all THANK YOU, this made me bawl like a baby realizing I truly am not alone in it all
I hear you. Many people associate Fibro Myalgia with pain, but they don't understand that there are other symptoms too. I am more sensitive to heat at times, and I lived in Yuma Arizona for 8 years. That is not a good place for sensitivity to heat. For me, the degree of fatigue I have is just as bad, or worse than the pain. One doctor prescribed Gabapentin and a muscle relaxant. I was a high school math teacher, and all I wanted to do was sleep! Brain fog is terrible also. I had covid almost a year ago, and particularly my fatigue and brain fog are now worse.
Thank you for posting this. I've been battling Fibromyalgia for 15 years. So many doctors; so many failed attempts at pharmaceutical medications. I've been completely isolated and alone except for my immediate family who help to support me. I'm relieved to know I'm not as alone as I've thought. What friends I had and my family of origin left me in the dust years ago. They got busy with their normal lives and forgot about me, I guess. I can't keep up with anyone anyway. I am tired of and embarrassed to tell new people about my illness. They just look at me with a blank face and say something like, "Well, hang in there!" Yup....
Stop eating plants! High lectin foods are destroying your health. You can regain your health. I did. I no longer have fibromyalgia. But it take time to heal. Plants are toxic. I now eat no plants whatsoever. Best health since childhood. Know that there is life after fibro. Good luck.
I have IT too and all this Symptoms and all the laughter from other people and my oen Anger that once IT has been all "normal", but now life has Changed and i can't change IT. I'm German, and We have -as far ad i know - only one capacity here for that illness. Most Off the Docs don't even believe that fibro does exsist... BUT even the way to this doc IS more than i can do by myself. So i Just try to live ON, day by day, AS Long AS i can... Greetings to all , that suffer Off the Same ❣️❣️🌻🌻🌻
Great clip. I’ve had fibro 35 years. At 62 I have to question brain fog or early Alzheimer’s when I forget a word. But I keep on fighting and educating people. Good thoughts and prayers for all.
Ive been living with Fibro for almost 30 years but became disabled about 8 yrs ago. There's many more symptoms that each person can experience...swollen lymph glands, pain so bad you cant even let the sheets touch your skin, laying your head on the softest, fluffiest pillow but it feels like a brick instead. Each person with Fibro must deal with all of these painful situations and its hard to do for so many years. Some days may not be too bad, others make you not want to exist anymore but we still must go on. One of the hardest things is when your partner doesnt really understand what you go through. They may try and have a little sympathy but eventually they become resentful that their spouse cannot be active along with them. Thats the worst feeling...and so you make a great effort to participate and regret it for weeks. Yet, in their selfishness, they still dont get it. Its rough 😊❤❤❤
Fibromyalgia has been noticed since days of Socrates. The story of “The Princess in the Pea” is about the sensitivity of a fibromyalgia suffer. But they didn’t have a name for it back then.
@celestecatcurren1089 Right...I think they just gave it a name because they still don't know what it is, or what causes it. There's about 5 totally different theories floating around out there ❤️
I was diagnosed over 20 years ago when dr.s called it a "garbage pail" diagnosis. I now know I also have Ehlers Danlose because my daughter was diagnosed at 20. I had symptoms at 12. I had a gym excuse from 7th through 12th grade. Never thought much avout it. Anyway, went on disability at 53 working full time. I was exhausted. I'm 65 now. My jounts, cervical and lumbar spine are shot, gastric illnesses, barely leave the house. Sending love, gentle hugs and prayers to you all.
I had a rheumatologist tell me it was just fibromyalgia & lupus (SLE) and ED was so rare. Didn’t do Brighton scale or ask how flexible I was when younger. My niece and sister have it. I think there may be more types or degrees of it than known. Interestingly I went into unheard of remission from auto immune after a neurological chiropractor elocution my reversed cervical column in place nearly 5 years ago! Labs don’t show auto antibodies! I had several TIA I was told was just lupus as well as chronic brain inflammation found on MRI in addition to some pre marker for MS. I was able to move more, get off all lupus meds, knock down fibro med, lose 40# effortlessly and return to work after staying home 23 of 26 years with children. The more I love the less the fibro pain is. My job is very physical. I worry how long I will be able to work though. I see my special chiropractor every week and she uses an integrator tool and drop table. So much goes out. Like 5 ribs in front recently. Ankles, knees, hips, femur, entire spine, ribs, shoulder, jaw, clavicle, ociput all need regular adjustments. Now I can have stronger muscles to help hold stuff in place. But the guilt I feel for not doing enough. I was diagnosed with ADHD last year and trying to find the correct meds for over 12 months now. Maybe just fibro fog? Idk. But I had ADHD symptoms since a child and my daughters have it. So sad how especially women are brushed off even by female MDs! Gets depressing not having enough energy to do stuff and being beyond exhausted from a PT job. Came home and had to sleep 12.5 hrs the other day after 10 hr shift! Air hugs and prayers of perseverance.
@@warriormamma8098 I'm so sorry for what you've gone through and are stillgoing through. My daughter was diagnosed due to loose joints. When she was a baby and I held her on my hip, her hip would pop. Drs thought it was hip displaysia..scary. It wasn't. I always worked in offices. I had knee surgery at 19 so it's good I did. I could never have been on my feet all day. When I finally went on disability, I was sleeping until 3pm on my days off from exhaustion. 40 hour week. Sending soft hugs, love and prayers to you.
This is very accurate, I'm 57 and have been suffering from fibromyalgia for years now. I'm homesteading because I can't keep a job (brain fog too severe) and gives me more time to make all my foods so I can fonction better and hoping to one day contribute to our income. I really noticed a huge improvement following an ant-inflammatory diet (no dairy, no grains and low carb). I'll be making more videos with recipes in near future. I already have "vegan cheese sauce " and sour cream/yogurt substitute that I made last year. I just need more confidence at making more lol.
Sorry to hear of your symptoms. I'm taking Thiamine B1 for the brain fog, dizziness and anxiety and neurobion for three months now and it really helps. I just wish I could get something for the muscle pain and weakness. I would like to know if dairy free makes a difference.
@@79birdsong it sure does and your worst enemy is sugar, I'm lucky I guess that I don't have a sweet tooth. For me the biggest challenge was cheese, had a severe addiction lol.
Wow, I really needed to see this today! Thank you!❤ I know people think I'm a hypochondriac because of my Fibromyalgia and all the pain that goes with it. Amongst other things others don't really understand. I get headaches often and fatigue. One of the only people that finally understood this after a decade was my sister, she just suddenly passed away 2 months ago and I really feel lonely. 💔
I've had fibromyalgia for over ten years and everything in this video is my daily life. Thank you for sharing this it's good to know that I'm not alone.
Until seeing this video I had no idea how debilitating Fibromyalgia is. Thank you for enlightening me and gentle hugs to all who have to endure this terrible affliction
*To anyone suffering...* I did for over 20 years. *I strongly encourage you to get off all sugar and gluten!* It lessened my symptoms by 90%! Nowadays, if I eat sugar or gluten, I get an immediate flare up. I wished I had listened to people warning of sugar and gluten when I first had fibro. It would have saved me so much physical pain and brain fog. Also, try to get in at least 30 minutes of brisk walking each day! Those two tips alone will make a huge difference. *I am sorry to everyone who suffers. I know your pain.*
Im undergoing process of elimination tests through a Rheumatologist at the moment so i haven't had a diagnosis yet but I struggle with every one of those symptoms you mentioned. The pain, fatigue and brain fog are deliberating at times and even a good day isn't anywhere close to my old normal. I'm having to give up doing so much and I hate it.
I have every symptom of fibromyalgia and the excessive sweating too I didn’t know that was caused by it to I read one of someone’s comments and now I understand that too I’m just sitting down and my armpits are the only things sweating I mean dripping sweat down even just watching a move I have to keep putting deodorant on I take showers every day and still happens just excessive sweating in the armpits and i feel disgusted in my body for so long now living with this we have spent so much money on new shirts constantly because I don’t stink and I take showers every day and deodorant every day and I still sweat and it makes my shirts with sweat stains and didn’t know why and it makes my shirts smell so bad can’t even wear those shirts no more so done can’t do anything and can’t have anything because it gets ruined or just everything it’s so dumb my story is a living hell of pain and torture
I dealt with the same for years as a kid, even profusely sweating in freezing temps (I’d still shiver, feel cold, etc) until I grow out my body hair and quit aluminum anti-perspirants (due to boils and rashes and increased stink), these all natural deodorants (aluminum free) cause rashes and/or general pain and increased stink as well. Dove’s aluminum free doesn’t cause any of it, and lasts 8-12 hours. My pit hair holds onto it too so it doesn’t slide off my skin. Other than that, cotton tops, getting ventilation via a folding fan or lifting my arms nonchalantly occasionally helps. And also drinking the recommended amount of water according to sex, weight, age, activity level etc. Some say to stay away from certain foods to reduce stink, but some of those particular foods are anti-inflammatory and anti-parasitic (garlic, onion) so I don’t follow it personally lol
The only places I don’t sweat are my underarms, my hands, and my feet. My hair is always wet and my clothes are always damp. I’m lucky tho, at least I don’t smell. At least my family says I don’t. I’m just wet, ALL THE TIME. It is the most uncomfortable feeling. Sometimes it bothers me more than the pain which is also 24/7.
I tried soaking my clothes in sard soaker for 2days. (before soaking I rub the shirts with sard soap on the stained areas) this seems to save my clothes. Hope you can save some shirts. Use gloves if you have sensitive skin as I do. 💐💐💐
I’ve had Fibromyalgia for 14 years. It’s been somewhat quite for the last two years and I’ve been in the best shape of my adult life. I stopped researching and going to the doctor during that time frame because I was over feeling like an alien. 2 months ago I went to the doctor for what I thought was carpal tunnel, it wasn’t... My fine motor skills are going nuts and I’m getting weakness in my right forearm, hand and shoulders and now it’s traveling to the left side too. I came home today and for the first time in awhile I looked up Fibromyalgia to see what’s new and found your video. It’s reminded me that “ we” are not imperfect and that pain, sweating and all our little quirks make us unique. But you found a creative outlet to get you above the clouds. Great job!
I was diagnosed in early 2020, as you said some people believe you're just lazy and using covid as an excuse. Thank you for posting this, hopefully enough people will see this to make a difference
This is so true! My own mother, who has her own health problems, doesn't understand how one day I'm fine and the next I'm completely exhausted. I've tried to educate her about my illness, but people who have never experienced it just don't get it! My children, thankfully, have educated themselves about my illness and completely understand my limitations. My solace in this depressive state is my faith in Yehowah and His Glorious Son! May Yehowa's Kingdom come soon to end all our suffering!!! All Praise, Honour, and Glory to Yehowa in the name of His Glorious Son, Yehowshowa HaMashiach!!!
So after watching the video, as always I jumped into the comments. Oh my - there is a lot of people dealing with the same things I am, and as I read on - I'm realizing that I should have been diagnosed by age 10 years. I was diagonsed about 10 years ago. For 55 years i was told it was all in my head, theres nothing wrong with me, my complaints are inconcestant and Im making it up as I go..... I'll be 65 later this year and it has been a long haul to get this far in life with very little to mostly no help at all. I agree doctors need to learn more and to truly listen to their patients - Not Everyone is a Liar. Thank you to All of you for sharing your situations it is muchly appreciated. (Sorry for bad spelling as for some reason my spell checker doesnt work on youtube).......
If it’s any help to anyone here : this is how I’ve coped for 25 years Always keep warm it relaxes the muscles and nerves : even summer can get chilly so keep even temperatures where possible. A hot water bottle or similar very comforting Avoid sugar Drink warm /hot/rooibos tea When in pain a bit of apple cider vinegar in glass of water Don’t try and explain this to anyone: unless they have FM they will never understand Take a couple of natural anxiety homeapathic remedies to keep stress levels under control Be kind to yourself and don’t ever feel “guilty” about not being able to do stuff ❤️ I’m 72 and I’m active and stamp on this FM when it rears it’s ugly head 🤣 Love to you fellow sufferers xx
I have had FM for over thirty years now, so glad to see I'm not alone in those mentioned symptoms. No doctors available here and they didn't know about those symptoms, I guess, back when I was diagnosed.
I'm a long covid sufferer for over three years and it brought in fibromyalgia. My abilities are around zero and the everyday pains are unbearable. Thank you for this clip 🙏🏼
had FIBROMYALGIA since 1997.... DON'T see it as part of YOU.... view it as a separate ENEMY then you can distance yourself.... DON'T let FIBRO or stupid people get to you....
All these are so very true. And most doctors don't know or understand and now most of the time I don't even talk to anyone about this. It's a disease that needs to be talked about.
I have Fibro and ME, both developed in the past 5yrs.....I'm 54 now, and sadly even my own family are often unkind....None of us asked for these conditions, but we should all be proud that we try every day.....
Currently struggling with sharp shooting pain out of nowhere. Stabbing pains in my back all over my spine. I have ddd and my doc suspects fibro. Also suffer from a form of autoimmune gi dysautonomia, and an arachnoid brain cyst which effects my mood and migraines, and other nerve issues. Very hard days.
Im sorry your going through the shooting Pain and DDD I struggled with this and cleaned up my diet. Look into low inflammatory. It helped I no longer have Those shooting pains. I hope this helps to know you won’t always feel that way
Fibromyalgia causes me bad headaches when reading got to 0:41 and could not finish reading all the notes. Also affects spelling and writing memory sorry if anything is wrong.
I have found many difficulties with my eyes, 4 conditions, some days much worse than others - hard to cope with the iPad, better with computer. Also start to read something and just cannot continue. I also get much itching and burning, not only all over body but head as well. My skin burns, especially the back and neck. So many years now, forgotten what it was like to feel normal, if I ever did. It all started from taking a polio voral vaccine as a schoolgirl, when I first became I’ll. then later given a beta-blocker for b.p, which finished my legs and caused such disability. My husband had to become my carer. Now I’ve lost him.
At the moment, the itching is the most unmanageable thing for me. I do all manner of techniques gor my other symptoms, which on the whole help me. No amount of cream, antihistamines or natural remedies help. Ive been diagnosed for 15 years, but had symptoms a lot longer. Thanks everyone for sharing, it does help from time to time to see what we go through. ❤ 1:36
We should not relate to it as embarrassing just because its invisible. If we wore a plaster cast on a limb or used a wheelchair people would treat things very differently. People with forms of lupus are vey similar.. Its those judging who should feel embarrassed.
I attend a fibro clinic where I live when I need to and its the only clinic in the southern hemisphere. Its a 3week program and I've learnt so much and benefitted from the amazing treatments and education. One day I went from a massage to a class on neurophysiology!
I always think that I’ll be better tomorrow but it never happens. Every day is torturous. I have to take constant daily pain killers. If anybody thinks this illness is not reel. Then think again.
Thank you for the video - It is brilliant. I have saved the link on my phone so I can give it to anyone that asks and they can get a bit of insight in to what we go through. I get the twitching in my hands which is frustrating when it happens while carrying something - broken my fair share of things when they go flying out of my hand :). I was diagnosed 12 years ago along with Ankylosing spondylitis. Something that really gets on my nerves is when people ask "Are you feeling any better" - Why is it people cannot understand the meaning of the word "chronic"!
I have fibromyalgia too and can relate to all the symptoms you described. I have been taking Amitriptyline 50mg which helps with the physical pain symptoms, I hope it will help you and others too
I’m not ashamed to say that this made me cry a little. I’m a type A and I’m a planner and doer but sometimes it’s just so hard. And it’s difficult to ask for help without it becoming an argument. These autoimmune disorders behave so differently I never know if what I’m experiencing is normal or not.
After years of being in pain I told my doctor that even my skin hurts along with other symptoms.He told me that I probably had FM but it was expensive to diagnose.He prescribed Lyrica and I ran into the walls and acted like a drunk but after a while it got better then my insurance quit paying for it and I developed a movement disorder.I jerked my arm and neck till I thought I couldn't take it anymore.I caved into Gabapentin even though I was told it was the devil by my doctor and that you can never stop taking itor the side effects are unbearable.I am doing much better now and as long as I take it my pain is down a knotch but If I forget all my nerves start screaming 😱 I didn't know these other symptoms were because of FB I thought it was the Gabapentin.What is the cause,is it poison in our food or the poison in the air?
With you on everyone of those that you mentioned. It's utterly dreadful and debilitating at times. I have pain every single day nonstop. I'm exhausted with it.
I've been struggling with Fibromyalgia since 1999 and it's a beast. My brother, God rest him, said that Fibromyalgia brings all the joy of AIDS, but you don't get to die. We lost him to AIDS shortly after my diagnosis. I have every one of those symptoms shown in the video, but some I didn't connect to Fibromyalgia before now. I also have been diagnosed with Adult Onset Still's Disease, which is a nightmare! Between the two of those, my life is pretty small on most days, but I have learned to find happiness where I can. I am blessed with the love and unfailing support of a really amazing husband. He has learned how to help me get through the bad days and how to celebrate good days with me. I don't know how I'd manage without him. He's my rock. One day, all these trying, pain-filled days will be only a bad memory and, until then, I do the best I can to live a little better today than yesterday. To all you out there who share my diagnosis, be brave. There is a brighter day just over the horizon! This won't last forever.❤
I just found out today that I have fibro. My kids couldnt stand to listen to me before. Said i had to go walk and do things. My brother in law thought i was lazy. I am not happy i have it..i am happy to know im not crazy and i hurt for a reason.
I've dealt with fibromyalgia for over 20 years. I've been shunned, labeled as lazy, a procrastinator , crazy, liar, drama queen... etc. No one cared to understand me or to take any time to research fibromyalgia and educate themselves about it. I stay to myself most times. I'm not able to handle loud noises, crowds of people ,fast motion or vibration. I hurt continuously. I only go places if I absolutely have. By the time I get home I'm completely wiped out. Fibromyalgia is no laughing matter. Be kind to everyone you meet. You never know what a person is silently going through.
Ive had a diagnosis for 15 years so I know how you feel. You just have to have the attitude that it's their problem if they don't understand. Always stress that you have a disability and there is no cure. I can personally recommend Amitriptyline, at 25mg have had a toning down on muscle spasms etc. Yoga helps a little. Good luck.
I was recently diagnosed with it last year. Do you wake up feeling stiff?
I know how you feel. When asked what part of you is affected and you say every part you get a blank look. I even had to educate my husband about it when we started dating. Even now I think he still struggles to understand.
I go thru all these and have for too many years. Just try to smile thru the pain, if you can, if not talk to a real good friend, or cry with someone who cares.
Im wiped out before I leave the house :D I do the trip by sticking a matchstick into each eye to hold them open so I can kick my adrenals into gear , by the time I get to where Im going Ive had plenty of time to give myself a pep talk, resolve my "performance" anxiety before acting like Im a living , breathing normal person. I
Its ok, it only takes a couple of months to recharge my batteries back up to their normal 3% .
The emotional rejection from not being believed when none of my physical pain was unexplainable has hurt me the most. I am 73 and have had this pain for 35 years. I rarely tell anyone I have it.
I’ve had it since 2009 and no one believes me,not even family. I just do the best I can.
Same here. People think I just need to “ push through” I wish it were that simple.
I was diagnosed in 1980's when they act like your crazy. It was my neurologist.
🙏🏽🙏🏽🙏🏽🙏🏽
I don't get why people don't believe us, it's so hurtful and insulting. We aren't liers and we aren't lazy!!
When I felt that something was wrong with me (I was 13-14 at the time) my mum took me to a bunch of doctors to find out what was wrong with me. I remember the first doctor I went (He was a orthopedist), I told him " When I go to the dancing lessons, I'm in pain the most" and he said: then stop dancing. I was so frustrated. As soon as I went out of the office I told my mum I refuse to give up dancing ,lets find another doctor. I went to another doctor, and another and I spend so much money in physiotherapy, pills and doctors and nothing helped. Once another doctor said: its probably all in your head.(imagine saying that to a 15 year old that's in pain and feels helpless). Thank God, when I was 18-19 I found this physiotherapist and after I went for a couple of sessions to at least ease my pain, he told me : I'm almost sure you have fibromyalgia ,you should see a neurologist. And let me tell you that was the day everything fall in to place. Anyway long story short (really did not intend to write this huge comment) , seeing this symptoms that others have makes me feel like I'm not crazy, its not in my head, they do exist!!!!
Lol I wish we had access to more than a few doctors... I was showing signs clear back in grade school. Running was hard for .e because I could never build stamina. It burned so bad. I was apparently just being lazy. I tended towards reading, drawing, videogames. Depression took all those this away from me as housework began to pile up and I just couldn't keep up. I'm a very high energy person, and adore dancing, too, though I picked it up as a hobby in the middle of my depression because the moves were fun and wide moves didn't hurt like small ones did. My body complains loudly with stiffness despite the being a daily thing now since January.
I also want to add that I was bullied by teachers and students relentlessly for this and my weirdness. I may be autistic, too, but i'm making efforts to utilize the intensive focus and patterned thinking.
Right now, though, my biggest concern is my son. He shows signs of autism, but it reminds me of how my fibromyalgia hits. He had a very traumatic birth (no one's fault) and was in the hospital for a long time in severe pain as a infant. The way he reacted to the cooling blanket they had him on at one point, and how strange all the doctors admitted his reaction was...plus the fact he prefers reading and building and playing videogames to running and playing with more than coasting vehicles...i would not be surprised to find out he is dealing with fibromyalgia as well as his autism, too.
Me getting a diagnosis would help a lot in getting help for my son, I feel, as I have the will to fight for him and protect him if any bully tries targets him as 'lazy'. And i've had plenty of time to learn to fight around a disability i've had all my life. I'm scarily efficient 😈.
Same dear. Many of the doctors even not aware of this. In teen age, hearing this,its in your head ,stop dancing ,how frustrating. Thank God ..God gives atleast later some solutions for everything. Pray God give complete cure posible !! Atleast in future for sure !
Hi Mari the NIH says women with fibromyalgia have a prevalence of a perineural cyst 42%. Don't believe it. That 42% was 8% couple years ago. I believe all of us have Tarlov cyst's on our spines 100%. Don't freakout it's very treatable.
@@trashcatlinol I’ve had symptoms since childhood, and my mom has had almost whole adult life. When my kids were in HS, we moved and had a neighbor who had a non-verbal autistic son. Since we homeschooled we were around to help her when the alarm system went off cause he would break out of the house and just run. Eventually he was able to communicate through assisted typing.
I recall thinking before and after he was able to communicate, that many of the symptoms he was having seemed heightened even from Fibromyalgia. The heighten reaction to stimuli. I remember having a graduation party for my son in backyard and Josh didn’t want to come over with his mom, so he sat up on his old play set peering over the fence observing everything from his yard. From 30 feet away, with all the noise of the guests, I started whispering to him about what was going on, the musical items we had out on display, etc. I told him when he was ready, he was welcome to come over and look. Within a few minutes some of the people left, and so our party got quieter for a bit, and Josh started to climb down and bang on his gate. His mom thought he was attempting to run again, but instead he lead her to our yard where he made his rounds quickly, looking at photos and giving each of the instruments a quick once over. Then he wanted to retreat to his perch on the play set and was again content to watch from his yard while his mom visited in ours.
His reaction always seemed to me like he was overloaded with stimuli that was uncomfortable, just like I would want to get away from things when having a flare. Unfortunately he could communicate for the first 17 years of his life, so his support system had no way of effectively helping him, but just guessing. Unfortunately because to many people in his life had always assumed because he didn’t talk, that nothing was going on inside, and so he basically had to teach himself everything by observing others when things in his environment were calm for him and his body was not screaming at him as well.
It took a rheumatologist to diagnose mine. Fibro is sometimes one of the most frustrating and ridiculous things!
I’ve had so many people say they get tired too … it’s not tiredness we experience, it is overwhelming debilitating exhaustion to the point you can’t function. I know what tired feels like and Fibro is very different. Sending gentle hugs to you all.
Exactly! This exhaustion (and pain) is on an entirely different level than “tired”. Hugs to you, too.
I feel you. I don't even have fibromyalgia (I think) but I have this crippling exhaustion when I can't even maintain a sitting position for long. My body is weak and limp for no apparent reason. I love lifting weights and my physique is not that terrible, but surprisingly gym doesn't help me with this issue. If anything, I'm often unable to function for several days after a workout, so I can't do it as often as I want. I've quit smoking and drinking, it didn't make any difference either. I don't know what to do.
Doctors always shrug and tell me I seem healthy. Most perceive me as a slob and a malingerer. I feel like I don't belong to this planet. I wish people would understand how painful, shameful and depressing it can get.
I really needed to read that at this moment.
It felt like someone had my back!
Thank you dear stranger 🙂
I hug you too Claire ❤
I wish I could remember what healthy tiredness feels like. Even though I can’t remember it, I know that what happens to me now isn’t that. It is exactly what you described. Debilitating and depressing!
There were so many things in this video that I didn’t even realise were attributable to Fibromyalgia. I felt very emotional watching it. Your hugs cheered me up! ❤
The brain fog makes people think I'm stupid. I'm not, it just takes a minute to process things. Didn't know it was a symptom until now.
I know. How about when they think you’re lazy or nervous (psychologically not physically)
Lol....I still can't finish one sentence without forgetting a word or 2....People definately think I'm crazy or have early dementia....getting used to it now...🤭
Even family.
@@elizabethloyd3713 right. Eve though, Fibro goes back a few generations. My great grandfather, my Grandmother’s brothers and one aunt all had it too. My mother always just said it was whining.
I can definitely relate to this.
The emotional pain from the constant lack of understanding from my partner (no matter how many times I explain) is degrading to my soul.
🙏🙏❤❤
get a FIBRO parnter and CARE for each other....
Sorry Darling I also had to break a long term relationship which meant everything to me ( it wasn't romantic) only because it was extremely hard for the involved parties to understand and I was tired of explaining myself every now and then.
Iam dealing with the after effects of coping with out them but am more than grateful my environment is a little more peaceful and I don't regret removing myself from there company
Having a flare-up at work, didn't celebrate my birthday this week because I just couldn't do anything. Watching this made me tear 😢 up. Hugs and healing to all of you with invisible chronic pain and still trying to make life work. 💜💜💜
Happy Belated Birthday! So sorry Definitely Can Relate
Here, too. Happy belated birthday. 💐🎉🎂💐🎉🧁💐🎉🎁 🤗😚
I know how you feel and what this invisible condition can do , being so many different symptoms it's virtually impossible for anyway to really understand how debilitating it is and you feel so alone 😢 just trying to get a diagnosis takes years and many tests ,you know there has to be something wrong and you are not being a hypochondriac and when you tell everyone even then they look confused because you look ok they can't understand only the ones who have it can .
Sending hugs and all things good 💜💛
@@janbasterfield8200 so very true and gentle hugs from another sufferer
and Happy belated birthday mine is in ten days and pray I am able to enjoy it but been in a bad flare up for a few weeks now so not holding my breath, gentle hugs
This is so true. I wish people understood this illness more, just like having any other illnesses. Our symptoms are very similar to lupus. Fibro patients matter too💜💜💜
Doctors don't even understand it. I was diagnosed 11 years ago, and all my Dr could tell me was it's "nerve pain".
read "medical medium", I take monolaurin w\zinc, he suggests supplements to help with MS\lupus.
I am a single parent to an autistic child who has not been to school in the last year. I also have endometriosis and arthritis in my neck and hands. Life is pretty difficult to say the least. Sending love to all other sufferers of pain x
Every single one I can relate to. I managed to mow the lawn earlier, and I'm now laid on my bed in absolute agony, and it's only 18:11. It will affect my tomorrow too, I'll be lucky if I can walk. It's so hard pacing when things need to get done, and there is no one else to do it for you.
Hello,@Ethericrose, I have been trying to find you to reply back to you. My computer is touchy so it kept deleting my comment. I wanted to say how sorry i am that your parents didn't believe you as a child when you said you were in pain. My mother didn't believe me either. I used to cry and roll around on the floor and she would tell me it was just growing pains. She was later diagnosed with fibro in her later years before she passed and my Dr. doesn't believe me either so i go through every day and night in constant pain with no relief except gabapentin for my diabetic neuropathy. I just don't understand how the doctors now adays don't know a thing about it. I hope you are okay and managing your pain better. I feel for you and i understand. Hope you have a good day when you find this message. Sending love and healing vives your way. 🙏🙏❤❤☮☮
@SunshineDawn7 Hi, thank you for finding the time to comment back. 🤗
I was offered Gabapentin, but I only tried it for a week. It gave me chronic water retention, so I told the Gp I would not be taking it. I've always been slim, and gaining that amount of water/ weight on only 100mg per day in one week would affect my mental health. The doctor stated he would be increasing my dosage over a few weeks up, too, 6300mg a day. I declined! Can you only imagine how much weight gain I'd aquire at that high dosage? I just take each day as it comes. It's all we can do, yet please know you are not alone, I'm sending healing energy to you, Sunshine, and a huge loving hug. 🤗💐💚
@@Ethericrose I am so glad to hear back from you 🥰I hear you about gabapentin 😞I didn't start gaing weight right away with the Gabapentin but suddenly started gaining weight out of the blue between the gabapentin and the amitriptyline. I am supposed to be taking 600 mg. of the gab but have been getting bye with 400 I do take hydrochlorothiazide for water retention but i have gained about 50 lbs in the last year and i haven't change my diet much. I eat chicken breast and vegetables almost every night. I don't know if it it is worth it. I really think the weight gain was mostly from the amitriptyline but probably the gab. too. I had gone off the amitriptyline years ago but then my Dad, Aunt, Cousin etc.passed away. I lost like 11 loved ones in two years. Now maybe i should go back off it again because the weight gain is making me depressed. Isn't that a kicker? Depression medicine making me depressed. It is supposed to help with pain also but i don't think it helps. I really hate the gab. it makes me dizzy and hurts my stomach but i couldn't walk without it from the neuropathy. It is so hard to know what to do with these situations. Sorry about writing a book here. I was surprised when you mentioned the weight gain with the gab. I think i might need a new Dr. I hope this finds you feeling better. Thank you so much for your kind words and please know i am thing of you and hoping you feel better with every passing day ❤❤🌻🌻🤗🤗🌞🌞
I had anxiety to the point I was wetting myself multiple times a day because of how tense the pain was making me. I caught a cold and hoo boy. My doctor probably thinks i'm a hypochondriac looking for attention after her 'that's normal' comment when I brought it up. This is all before I found out I have fibromyalgia. I still have to bring it up to my doctor, and it is incredibly worrying I won't be taken seriously.
People walking past me physically hurts. That is not normal. If i'm told it is, i'm burning the hospital down.
And no it's not just anxiety.
Change doctors. No one needs to be patronized like that! Find a female practitioner who understands the syndrome, a rheumatologist if you can find one.
burn the hospital down for me too ....
bloody useless....
pain management/embrace the pain....
when they found out later....I was still not down the gym at least twice a week....
they said I was not engaging with the programme....
My heart goes out to anyone suffering from this nasty disorder.
Now I know why I sweat so much, I thought I was the only weird person in the world,when it’s not even that hot ,I’m sweating like a race horse most of the time n it can be very embarrassing,blessings to everyone ❤️💛💚✌️🙏🏻🇦🇺
I’d love to know what the no sweating is all about I’m so sick of all the different symptoms I have all the time
My excess sweating was from hormonal imbalance. But at other times it was the FM. Makes it hard to sort out certain FM symptoms when they can be so complex😒💖🇦🇺
I have to wear a headband no because of the 80's when I grocery shop man I start sweating then the other day nothing but I sweat. Body odor.thanks I never said that before. I thought it was only me ITS NOT.
And it comes out of nowhere! Just fine one minute and soaked the next!
Sweating is the worst for me. The pain is always there but the sweating creates problems. I can’t wear makeup any more because I sweat it off. I take a shower and dry my hair. Immediately I am sweating and my hair is wet and droopy and my clothes are wet. My clothes are ALWAYS damp and it is uncomfortable and embarrassing. I’ve been to a hyperhydrosis specialist for years. No good options to help. Creams and lotions are too complicated and time consuming to do much good. Too old to take oral meds as they would dehydrate me even more than I already am and could cause problems with my heart. I have dry mouth which causes problems with tooth decay. I’m dehydrated all the time. And this is just one of the many problems fibromyalgia causes. It’s a very very difficult condition to live with that leads to depression.
Don't forget the depression that accompanies or is a product of fibro symptoms and their affects
Oh my word. I did NOT know the body temp thing was fibro! I've complained of that so often! Like, the other day, I was so HOT when it was 73 degrees in our house. The next day, I was so COLD when it was 80!
I just shared this to my f/b news feed, as well as other articles about fibromyalgia. If just one other person reads an article and says "that's me!", I would be happy. I was diagnosed years ago when only 5 symptoms were recognized. I will be 78 y/o soon. I struggle everyday, hoping I will have enough energy to get out to do one errand. It is a linely and frustrating life, but by GOD's grace and goodness, I am still going on my journey through life. 😊😊😊
I find the sweating difficult and suffer with sensory overload sometimes my sense of smell is so acute I feel dirty even if I have just had a shower because I can smell myself. It makes me fearful as can other people smelliest ?
You are not alone
Not being able to recall short term memory. Not remembering words or what I just did EX: did I just take my medication a min ago
I do the same thing!
I have lived with Fibromyalgia for 15yrs. No one really understands it until they have it themselves. Ever symptom in this video I have suffered over the years including relentless bouts of insomnia. Fibromyalgia is very real. I wish more people understood that.
We do talk about these things, just within our fibro support groups online and offline because these are the people who truly understand...
This is so true. I’ve had fibromyalgia for over 20 years, now Lupus and some days are too challenging. Had surgery, and my tissue is swelling all the time, told it’ll be probably 3 extra months to heal. I’m not young any longer, but still feel the pain of not having the ability to plan better, or cook and clean, etc. I cherish the good days though!! 😊
I am diagnosed. It's annoying to make people understand as they think i am lying. It hurts a lot. May Allah ease the aches and pains of all who are suffering with the same. Aameen!
@Ashara Saleem. I am so sorry you have this condition, I have it too. It is so painful, but people don't believe that we have this illness. It cannot be seen so that means they doubt us, which is very unfair. What we have is very real. And it's hard to live with too. But God is good and sends us the strength to get through all our troubles. Thank you for your lovely blessing for all of us suffering with painful invisible disorders. May God bless you and all of those you love. May peace and joy be yours today and always. In Jesus name. Amen.
@@carlycharlesworth1497 Aameen!
@JL-527 Thank you for sharing your experience. Mines are different day by day now. Has your these medicines worked out? My Thyroid level is normal but I'm taking VitaD 50,000 once a week.
@JL-527 Once again Thank you so much. All the best & Take care of yourself. May Allah bless you always ✨️. Aameen!
That pretty much sums up how I feel about my exact same symptoms . They just can't grasp it because they can't feel it themselves . I gave up trying to explain it . On the really bad days , I stay away from people . Tired of the looks too . Mostly though , I'm tired of constantly battling the symptoms when I'm around people . Both family and friends . Constantly trying to hide the pain , fatigue , and mental fog , only makes my bad days worse .
I hate when I have to pee every 5-10 minutes. When I first became sick with Fibro, or atleast when it got to the point I could no longer function, that was one of the main symptoms that I never duscussed with anyone. The doctor who finally diagnosed me brought it up and that's when I knew she'd hit the nail on the head. The pain and fatigue could be explained by other things.
That sounds like your Sympathetic Nervous System is stuck on the 'on' position...that's what problems with the Autonomic Nervous System will do...also being under a lot of stress..especially emotional stress..can cause that response (think Narcissistic Abuse Victim Syndrome!)
Apart from FM..have you been checked out for Diabetes and hormonal issues?...they can both contribute to frequent urination..it's a symptom that drives me nuts as well!
Have total empathy for your suffering.
@@jo-annahicks3324 was diagnosed with diabetes last year but have had Fibro for more than 10 years. Irritable Bladder is a fibro symptom. I agree with your prognosis- have had a life full of trauma and stress and CNS is on over load.
when you've had a pee ....
you still want one....
drive you mad if you don't learn to switch off....
@@volpeverde6441 it drives me mad. It makes sleeping, or trying to go to sleep, very difficult. It only happens every few weeks, usually when the rest of my fibro symptoms are also bad.
@legoqueen2445
I sleep 1 or 2 hours at most....
twice, three times a night or cat-napping all day/fibro fog....not had a proper night's sleep since 1997....
sometimes you wake up and feel like you've been ran over by a bus....I thought sleep was meant to be refreshing....
Yes to all of it, I feel your pain- literally and emotionally. For me, it’s people thinking I’m lazy hurts the most as I’ve always been an extremely busy person, In fact taking on too much. I sometimes wonder if that was the cause for me. My ex husband used to call me lazy even though I got up at 5.30 am and never sat down again until 11 pm. I’m sure he was the instigator of my health problems.
Sounds like you may have been suffering through Narcissistic Abuse Victim Syndrome as well!
So sorry you have endured such hell.
@@jo-annahicks3324 yes, I agree, even though I don’t know what that is, he was definitely very controlling and he used my insecurities to make me feel guilty for being lazy, even though I definitely wasn’t! He still tries to manipulate me through how he treats our two sons, who are adults now, he does the same to them.
@annesuffolk640 yes I would say he is definitely a narcissist and will have caused your fibromyalgia. I went through the same . K
I don’t know how I came across this,but not only one of the papers you showed is me,ALL of them are. I was blown away. And just a few days ago,I broke out with a rash on my neck, that I couldn’t explain ! Over 30 years with Fibro and I can’t get over this video. Thank you SO much. I’m in tears here ,just knowing I’m not crazy after all !
Just because we're not in a wheelchair doesn't mean we are not sick. We definitely don't feel well most of our awakened hours and even during our sleep. I even have dreams that I'm in the hospital; so, yeah... I sleep and am still hurting!!😢
I was diagnosed about 12 years ago. I’m married with 5 kids and nobody in my family understands or wants to. I struggle so much and feel so alone sometimes. Reading your post brought tears to my eyes because I know now I’m not. People go think you’re doing it for attention or you’re lazy and for years, before my diagnosis, I believed it. When I was told I had fybro I cried because I wasn’t crazy. I wish more people understood. It affects so much of your life and nobody knows. ❤❤❤
I understand the struggle. If Jesus isn't already your Savior, please accept Him now. We are close to the rapture. No more pain for eternity. The tribulation is close and no one wants to be here for that. If He is already your Savior, you can be very encouraged. We're close to leaving this world.
@@SusanHarrell530that’s uncalled for.
One of the hardest things I find, is when I begin questioning myself. I think that also comes from when I see doubt reflected in the eyes of others. I start to wonder if maybe it’s not as bad as I think it is and maybe I’m just overreacting to the pain and becoming a suck. It’s awful when you start to doubt yourself! I know I don’t overreact to pain. I’ve been getting hurt since I was a really little kid and it was always such a traumatic thing for my parents when they had to take me to the ER. I wasn’t very old when I started hiding my injuries from them. I developed a “Crutches and Stitches” rule.. if I couldn’t stop the bleeding myself and needed stitches or I couldn’t walk and needed crutches I would tell my parents. Otherwise, I kept it to myself! I broke my nose at school when I was maybe 8 and I stopped my nosebleed myself, cleaned myself up and went back out and played the rest of recess. Never said a word to my parents. I just have to keep reminding myself of the many many times(and I do it almost daily now) that I’ve survived incredible pain. Pain that I’m certain would’ve made my critics and doubters lose their minds! So Please! Please! Don’t doubt yourselves!! It doesn’t matter how others think about your pain. It’s how it feels to you feel that matters. Pain is relevant to the person who is experiencing it. When another person can feel you pain for you? That’s when they can start judging you about it. Hugs to all of you!♥️
Got told just yesterday that fibromyalgia isn't real and that I need to go to the doctor to find out what's really going on with me......Thanks Mom.
I've not been diagnosed with fibromyalgia but I can relate to some of the symptoms on your list. I suffer from Lyme and MCS which I'm told are related to fibromyalgia. I also lose my balance and it looks like I'm drunk when I don't drink alcohol.
@Patricia Herlevi, I was recently diagnosed with Fibromyalgia. One of the many symptoms I have is loss of balance. I lose my footing very easy, especially if I try to turn around on the spot. I hope you don't have Fibromyalgia because the list of symptoms is long unpleasant, and includes every area of the body, inside and out. God bless you and all of those you know and love.
Yesterday I could hardly walk due to the nasty vertigo.
Patricia, and all here, I have chronic late lyme and fibro for years, and yes they absolutely are related my doctor say. For me one can trigger the other. The vertigo and leg buckling are just the worst feeling hang in there ❤
Does everyone with FM have a long list? Can some people with FM have a short list that sometimes changes?
@Katrina That's a great question. I don't have a long list myself but I tend to have the same issues depending on the day. Once in awhile a new symptom pops up so I don't doubt they can change depending on your fibro sensitivities.
For the people who have fibro & have the terrible pain & burning in their toes, feet & ankles like I do, I found something that really sooths the pain and that's Vicks Vapor Rub. Massage it into your feet & ankles then put on some cotton socks. It especially helps at bedtime during the night..hope this helps someone......
Tiger Balm works for me in the same way.
shit no....!
my feet are on fire with FIBROMYALGIA and diabetes....
Thanks, am going to try that tonight, maybe the menthol "confuses" the nerves. Those sudden stabbing, gripping pains are horrible, they get super bad as soon as I stop moving.
Not so common it seems with fibro. But is very real for me, is continual bladder problems with frequency of urinating, especially at nights so hardly any sleep, then that ruins the days too.
Besides excruciating pain in my legs my worst symptom is the sweats it just pours out of my head down my face and drops off my chin! I don’t like going out in summer because that makes it worse than ever
My hair flops and drips clothes are soaked in sweat it is truly depressing 😢
Thank you, even my adult children, don’t have an idea what has been going on with me for 23 years. The big “ F”. All you said, are what I have. Fibro fog, my grandkids think, grandma just forgetful. My husband get frustrated, with I’m talking longer to process his questions! I’ll send this out to all of them!
That's what I just did
Amen!
I have some of those symptoms. My lower extremities (my legs )🦵 get hot at bedtime. I'm been having the brain fog at work. Forgetting how to do procedures. Lots of neck tension that never goes away even w medication. I work 15 years at a physical job 45 hours a week on my feet standing in one spot. (Picture an Amazon worker) . The job has caused so much trauma to my body. It's like my body has shut down. I can no longer do the job. It's like my body has quit. Good pay, good benefits, but my physical health is declining. I need to get checked out.
If you haven’t been diagnosed you should do this asap and then apply for disability while you still can. It will be a big cut in pay but at least it would be something. I waited to long to apply and can’t get anything.
Dead on! I have no life! Bc of fibromyalgia! I'm depressed thinking bout it!
Thank you for posting this video. I'm 55 and can't believe how this makes me feel. Some people, especially family don't believe what you are going through. There's days I just want to lay in bed and cry.
I believe you. ❤🌻
I believe you too! I hate when people say "you don't look sick" or say it's all in my head. I have had fibro since a car accident over 30 years ago. The fatigue and brain fog drive me nuts and some people think I'm just lazy and stupid. I also have migraines which can give brain fog so I get a double dose of it at times. I really don't know many people who have fibro so it's comforting to hear from others.
@@st2rg2zer I am 70 and on the spectrum of autism. My family does believe me. And most people suggest that I don't look/appear to be. So I tell them I am here to educate people about it. The proper response from people should be to ask them what is their experience. So I offer understanding to others because I get what I need from Jesus spirit in me. Jesus knows ❤😇❤
💗💗💗💗💗
@@lekat525 Amen. Born again since April 25,2004. Best day of my life 🙏
I was diagnosed in 1995 by my GP, and now I see a rheumatologist. Not all rheumatologists are equal! The one I have now is amazing. I’ve gone on two different meds and I see her every quarter. I moved 60 miles away, but it’s worth a half a vacation day to take off to drive down and see her.
I have RA. I don’t believe that even my family really understands what it’s like- even tho they’ve seen me in the midst of a terrible flare. I’m so sorry you’re going through this & can both empathize & sympathize. I wish you well. ❤
Yippee! My doctor changed my 43 year old diagnosis from Atypical Reactive Arthritis to Fibromyalgia. 43 years misdiagnosed. I took some pretty nasty medicine during that time, some of which might be responsible for my being diagnosed with Multiple Sclerosis 12 years ago. So now it’s MS AND Fibromyalgia. Oh joy! What else is there to say?
You could have polymyalgia too?
Sorry to hear. I can relate, RA has been my baggage for 45 years and Fybromyalgia for about 5. I don't talk to people about it because there's no point.
Thank you so much. I didn't know that some of the symptoms you listed was part of it. The pain is always there. Some days worse than others. Get so fatigued I cant move. Brain fog gets me to where I get confused and not sure what someone is saying to me. I get super hot for no reason. Legs and muscles jump around a lot. Theres more but it can make life miserable most days. Its really upsetting because you are in pain, so tired you feel you cant function, cant think straight and people think you are just saying this stuff. Get up. Lets go. You cant be that tired. And so on. Hopefully someday people that dont have it will understand what people with it go thru. Its no joke. Thank you again for the information. It helped me to understand a little more about it. I was diagnosed 12 yrs ago. I also break out with lots of rashes. Itchy all the time. Wonder if this could be a symptom too?
@Laura Esthers, Yes, rashes are definitely part of Fibromyalgia. The sweating and feeling uncomfortably hot off and on or sometimes for days on end, is too. Tinnitus is another symptom. Dry eyes and mouth. Pain in the jaw, head, neck, and all of the body's joints and muscles, Spasms. Incessant itching. Excessive dryness of the skin, restless legs at night, body aches more when the weather is cold or raining. Difficulty sleeping. Constant headaches, or migraines. Sensitivity to light, sound and smell. Loss of balance and coordination. Brain fog and memory loss. Food intolerances, severe period cramps. IBS. Fingers and toes pain and tightness, weakening of the hands. Trouble with bowel and bladder. Loss of libido. Vision impairment. And the constant overwhelming tiredness and chronic pain all over the body. And that's not all of the things included in this condition. Those are just the main ones. As I learn more about this condition, I am hearing of more and more. And it's all invisible stuff, so no one believes us. It's a miserable.condition, but I am doing my best to stay positive.
I exercise gently daily as much as I am able, and swim, and eat healthily, plus I'm considering doing yoga very gently. I have started taking TURMERIC CURCUMIN, BLACK PEPPER, & GINGER in tablet form because that combination of spices is very good for muscle and joint pain. I hope this information is of some use to you. God bless you on your journey with this condition. May God give you strength and endurance, and peace, today and always. Just know, you are not alone
@@carlycharlesworth1497 thank you so much. Ive only known 2 people w fibromyalgia. Its an everyday battle. I get very bad rashes and my body has put me thru it. I dont know what its like to wake up one morning and not be in pain or starting another rash. Hopefully one day I will know what that's like.
❤
My pain medication makes me itch like crazy sometimes, to the point I don't realise I've cause a wound by scratching so hard.
I agree with you. I know many others agree too. One day we will wake up and be out of pain. Feel like going somewhere and actually enjoying it. Or not worrying what rash Im getting that swells my face up, and or body. I look like a bright red lobster and swells up horrible. Painful also. Someday soon would be great for anyone that suffers from it.
I was diagnosed with FM a few months ago, but in retrospect I now realize I`ve had it for years. My MD recommended hydrotherapy (pool) and that was what made me say "thanks but no thanks". The first therapy was actually pleasant and I was able to do all the exercises. The Therapist advised me that I would be very sore after the first time and also that I would urinate a lot, but did not say how long this would last. The pain and soreness lasted for ten days, and complete loss of bladder control lasted for two and one-half days. When all that finally settled down I had two days that were almost pain free---then I had a flare-up that lasted a week. I feel like I`ve been run over by a truck. I was supposed to have five more hydro sessions that had already been scheduled, but today I called the PT facility and cancelled all of them.
I sit in the hot tub for 45
minutes. Then so lie on a marble bench in the steam room.
That is hydrotherapy ❤.
All of these are SO true. I went into a fog at a family gathering...didn't hear someone say "hi" to me multiple times. Now I'm labeled worse than "rude" 🥺☹️😳😣
OMG! My doc and I have just begun to look into fibromyalgia as the cause of a lot of my medical problems, and I have almost every single symptom that is listed here. The brain fog, the being "that person," walking funny if I'm able to walk at all, not being able to bend, the strange and sudden "jerking" movements, and the GI symptoms are so concerning. But my personal "favorite" is being labeled as "lazy," It's just maddening that no matter how you try to explain your pain, and why you're so debilitated, the people who label you "lazy" have absolutely no compassion or empathy for you. They all think you're exaggerating or outright lying about your pain. My daughter's fiancée (he/him) almost came to blows over it, with him insisting I was faking most of my pain just to get out of having to work. It's terribly difficult.
I feel badly that so many FM sufferers ARE suffering. I got a great doc who told me a few things “this might be”, sent me for treatments that didn’t work, and the following year I was diagnosed. He was the best doc I had ever had, and sat in my car and cried after he told me he was leaving the practice. The docs I’ve seen since haven’t been half as good as my original doc. I keep with the original plan and have more good days than bad.
I have everything you listed too. I feel people judge me too and it comes down to them not understanding fibromyalgia. I have to tell myself that. It's so comforting to see this video cause , yes, it makes me feel validated it's supportive. Thank you for your kindness in sharing this
And we could add excessive mucus coming from everywhere to that list. Good video thanks.❤
Could that also be a symptom of Systemic Candidiasis?
Sometimes I feel like my ears are full of water, and get 'white snot' in my nose, from yeast.
I am constantly getting ear swabs, at the doctor's...and most of the time,....it's Candida (thrush).
Could this also be part of your symptoms?
At last I've read what happens to me all the time, sweating copiously which is so so uncomfortable etc etc it is atleast comforting that I'm not the only one!
Amen. Stay positive fibro peeps! ❤
I to am a fibro suffer. At 70 I now realize how young I was when it started. I hid most of my aches and pains from my parents but when it was more then I could stand I'd mention to my parents how I felt and got told it was all in my head and that I was trying to get out of doing something. Aah.....those were the days huh! Being silent because of this affliction because of peer pressure of any kind...parents, siblings, friends, school.....should never happen. The world should be aware just how strong we are to endure this crappy excuse for a disease!
I have many more than all these symptoms.. ppl dont believe i am suffering pain. Ppl feel i am simply acting
I hear you. I keep telling my Dr something is wrong and they keep telling me there is nothing wrong with me. I've lost all faith in our medical system.
What is there to dislike . I suffer so much pain and many stiffness, while tavelling a kind of dizziness, nausea, a kind of head ache , some allergy type of side effects on any medicine used any time ..all due to fibro. The kind of fatigue after any activities unexplainable. Yes ! I still live in positiveness and active ! May H
God bless to cure this . Soon get a solution
Yes,totally agree,some of my kids think it’s all in my mind,so I’ve stopped talking how I feel,most of the time I suffer in silence ,finally seeing a specialist, beginning of next year to be finally diagnose with what I already know is fibromyalgia,stay positive n blessings to everyone ❤️💛💚✌️🙏🏻🇦🇺
@@sbcluriana3388
Even family .. own loving ppl dont believe
@@geethanair5803 I am sorry that is terrible. I am thankful to have someone that believes me and can see the pain I am in all the time. I can only hope that you can someone will believe you and start to understand.
OMG. THANK YOU. I’ve been dealing with this for years along with Angalosing Spondelitis. It’s extremely frustrating to suffer through due to the symptoms. No one can see or understand things they can’t see..
You are amazing! As a child who already suffered from fibromyalgia in the early nineties (today I am also diagnosed with Sjogren's syndrome), I know how much suffering it is that no one believes about the symptoms you mentioned in the clip. Thank you from the bottom of my heart. And for everyone who suffers from this terrible disease, which unfortunately to this day even family members find it hard to believe it's real - I believe you!!!!
Yep me too. It was so difficult to get diagnosed with anything from the time they labelled me with Fibromyalgia 10 years ago. I had 9/10 symptoms of Sjogrens syndrome. It took my teeth rotting , nearly going blind with ulcers in my eyelids, a heart attack and multiple TIA's before they eventually diagnosed Sjogren's. Hope you had better luck. Cheers from Australia.
I just quit trying when my wife left. It takes too much of an investment to get the same old sayings and to see the doubt in their eyes.
😇🥰💕
@@davidcochran6291 😔🫂💜
@@kathyw3466 omg....All my teeth rotted....🫢Is that from Sjogrens? I had beautiful, strong teeth with onlyb3 fillings when my fibromylgia hit at 37 full blast...and then all my teeth started to go, one by one, infections, splitting into pieces, it was horrific!!!
I'm having a flare up now and it's almost unbearable painful! My legs, I experience the same things you do and also have restless legs. All the other symptoms you describes too! Skin issues and dry mouth etc too. It quite terrible but thankfully I have a kind husband.
Restless leg syndrome can be aggrevated by some anti-depressants- especially, SSRIs. Check w/a pharmacist who told me.
@barbararobinson9434 Thank you so very much. Good to know!
I as diagnosed with Fibromyalgia 30 years ago…I worked 12 hour night shifts in a printing company… I pushed myself at work but otherwise couldn’t stay awake in my “off hours”…. Worked this following 30 years until I went blind…I’m 71 years old and still suffer…but I push myself hard to get things done…life is too short to not…I don’t take medication of any kind…I’ve survived this long…hopefully I will for a few more years
I was diagnosed almost twenty years ago and this video is the first time ever that it made me feel not alone with it all THANK YOU, this made me bawl like a baby realizing I truly am not alone in it all
I hear you. Many people associate Fibro Myalgia with pain, but they don't understand that there are other symptoms too. I am more sensitive to heat at times, and I lived in Yuma Arizona for 8 years. That is not a good place for sensitivity to heat. For me, the degree of fatigue I have is just as bad, or worse than the pain. One doctor prescribed Gabapentin and a muscle relaxant. I was a high school math teacher, and all I wanted to do was sleep! Brain fog is terrible also. I had covid almost a year ago, and particularly my fatigue and brain fog are now worse.
Thank you for posting this. I've been battling Fibromyalgia for 15 years. So many doctors; so many failed attempts at pharmaceutical medications.
I've been completely isolated and alone except for my immediate family who help to support me. I'm relieved to know I'm not as alone as I've thought. What friends I had and my family of origin left me in the dust years ago. They got busy with their normal lives and forgot about me, I guess. I can't keep up with anyone anyway. I am tired of and embarrassed to tell new people about my illness. They just look at me with a blank face and say something like, "Well, hang in there!" Yup....
Stop eating plants! High lectin foods are destroying your health. You can regain your health. I did. I no longer have fibromyalgia. But it take time to heal. Plants are toxic. I now eat no plants whatsoever. Best health since childhood. Know that there is life after fibro. Good luck.
I have IT too and all this Symptoms and all the laughter from other people and my oen Anger that once IT has been all "normal", but now life has Changed and i can't change IT. I'm German, and We have -as far ad i know - only one capacity here for that illness. Most Off the Docs don't even believe that fibro does exsist... BUT even the way to this doc IS more than i can do by myself. So i Just try to live ON, day by day, AS Long AS i can... Greetings to all , that suffer Off the Same ❣️❣️🌻🌻🌻
Great clip. I’ve had fibro 35 years. At 62 I have to question brain fog or early Alzheimer’s when I forget a word. But I keep on fighting and educating people. Good thoughts and prayers for all.
Ive been living with Fibro for almost 30 years but became disabled about 8 yrs ago. There's many more symptoms that each person can experience...swollen lymph glands, pain so bad you cant even let the sheets touch your skin, laying your head on the softest, fluffiest pillow but it feels like a brick instead. Each person with Fibro must deal with all of these painful situations and its hard to do for so many years. Some days may not be too bad, others make you not want to exist anymore but we still must go on. One of the hardest things is when your partner doesnt really understand what you go through. They may try and have a little sympathy but eventually they become resentful that their spouse cannot be active along with them. Thats the worst feeling...and so you make a great effort to participate and regret it for weeks. Yet, in their selfishness, they still dont get it. Its rough 😊❤❤❤
Well described....
Fibromyalgia has been noticed since days of Socrates.
The story of “The Princess in the Pea” is about the sensitivity of a fibromyalgia suffer. But they didn’t have a name for it back then.
@celestecatcurren1089 Right...I think they just gave it a name because they still don't know what it is, or what causes it. There's about 5 totally different theories floating around out there ❤️
I was diagnosed over 20 years ago when dr.s called it a "garbage pail" diagnosis. I now know I also have Ehlers Danlose because my daughter was diagnosed at 20. I had symptoms at 12. I had a gym excuse from 7th through 12th grade. Never thought much avout it. Anyway, went on disability at 53 working full time. I was exhausted. I'm 65 now. My jounts, cervical and lumbar spine are shot, gastric illnesses, barely leave the house. Sending love, gentle hugs and prayers to you all.
I had a rheumatologist tell me it was just fibromyalgia & lupus (SLE) and ED was so rare. Didn’t do Brighton scale or ask how flexible I was when younger. My niece and sister have it. I think there may be more types or degrees of it than known. Interestingly I went into unheard of remission from auto immune after a neurological chiropractor elocution my reversed cervical column in place nearly 5 years ago! Labs don’t show auto antibodies! I had several TIA I was told was just lupus as well as chronic brain inflammation found on MRI in addition to some pre marker for MS. I was able to move more, get off all lupus meds, knock down fibro med, lose 40# effortlessly and return to work after staying home 23 of 26 years with children. The more I love the less the fibro pain is. My job is very physical. I worry how long I will be able to work though. I see my special chiropractor every week and she uses an integrator tool and drop table. So much goes out. Like 5 ribs in front recently. Ankles, knees, hips, femur, entire spine, ribs, shoulder, jaw, clavicle, ociput all need regular adjustments. Now I can have stronger muscles to help hold stuff in place. But the guilt I feel for not doing enough. I was diagnosed with ADHD last year and trying to find the correct meds for over 12 months now. Maybe just fibro fog? Idk. But I had ADHD symptoms since a child and my daughters have it. So sad how especially women are brushed off even by female MDs! Gets depressing not having enough energy to do stuff and being beyond exhausted from a PT job. Came home and had to sleep 12.5 hrs the other day after 10 hr shift! Air hugs and prayers of perseverance.
@@warriormamma8098 I'm so sorry for what you've gone through and are stillgoing through. My daughter was diagnosed due to loose joints. When she was a baby and I held her on my hip, her hip would pop. Drs thought it was hip displaysia..scary. It wasn't. I always worked in offices. I had knee surgery at 19 so it's good I did. I could never have been on my feet all day. When I finally went on disability, I was sleeping until 3pm on my days off from exhaustion. 40 hour week. Sending soft hugs, love and prayers to you.
This is very accurate, I'm 57 and have been suffering from fibromyalgia for years now. I'm homesteading because I can't keep a job (brain fog too severe) and gives me more time to make all my foods so I can fonction better and hoping to one day contribute to our income. I really noticed a huge improvement following an ant-inflammatory diet (no dairy, no grains and low carb). I'll be making more videos with recipes in near future. I already have "vegan cheese sauce " and sour cream/yogurt substitute that I made last year. I just need more confidence at making more lol.
Sorry to hear of your symptoms. I'm taking Thiamine B1 for the brain fog, dizziness and anxiety and neurobion for three months now and it really helps. I just wish I could get something for the muscle pain and weakness. I would like to know if dairy free makes a difference.
@@79birdsong it sure does and your worst enemy is sugar, I'm lucky I guess that I don't have a sweet tooth. For me the biggest challenge was cheese, had a severe addiction lol.
@@mistymounthomestead8594 thanks for your reply, I trust your health will improve and I'm going to cut down on that sugar and dairy.
Wow, I really needed to see this today! Thank you!❤ I know people think I'm a hypochondriac because of my Fibromyalgia and all the pain that goes with it. Amongst other things others don't really understand. I get headaches often and fatigue. One of the only people that finally understood this after a decade was my sister, she just suddenly passed away 2 months ago and I really feel lonely. 💔
I can relate to every single one, thankyou for making and sharing this
I can’t read it all my brain doesn’t work that fast anymore.
I've had fibromyalgia for over ten years and everything in this video is my daily life. Thank you for sharing this it's good to know that I'm not alone.
Until seeing this video I had no idea how debilitating Fibromyalgia is. Thank you for enlightening me and gentle hugs to all who have to endure this terrible affliction
*To anyone suffering...* I did for over 20 years. *I strongly encourage you to get off all sugar and gluten!* It lessened my symptoms by 90%! Nowadays, if I eat sugar or gluten, I get an immediate flare up. I wished I had listened to people warning of sugar and gluten when I first had fibro. It would have saved me so much physical pain and brain fog. Also, try to get in at least 30 minutes of brisk walking each day! Those two tips alone will make a huge difference. *I am sorry to everyone who suffers. I know your pain.*
Im undergoing process of elimination tests through a Rheumatologist at the moment so i haven't had a diagnosis yet but I struggle with every one of those symptoms you mentioned. The pain, fatigue and brain fog are deliberating at times and even a good day isn't anywhere close to my old normal. I'm having to give up doing so much and I hate it.
I have every symptom of fibromyalgia and the excessive sweating too I didn’t know that was caused by it to I read one of someone’s comments and now I understand that too I’m just sitting down and my armpits are the only things sweating I mean dripping sweat down even just watching a move I have to keep putting deodorant on I take showers every day and still happens just excessive sweating in the armpits and i feel disgusted in my body for so long now living with this we have spent so much money on new shirts constantly because I don’t stink and I take showers every day and deodorant every day and I still sweat and it makes my shirts with sweat stains and didn’t know why and it makes my shirts smell so bad can’t even wear those shirts no more so done can’t do anything and can’t have anything because it gets ruined or just everything it’s so dumb my story is a living hell of pain and torture
I dealt with the same for years as a kid, even profusely sweating in freezing temps (I’d still shiver, feel cold, etc) until I grow out my body hair and quit aluminum anti-perspirants (due to boils and rashes and increased stink), these all natural deodorants (aluminum free) cause rashes and/or general pain and increased stink as well.
Dove’s aluminum free doesn’t cause any of it, and lasts 8-12 hours. My pit hair holds onto it too so it doesn’t slide off my skin. Other than that, cotton tops, getting ventilation via a folding fan or lifting my arms nonchalantly occasionally helps. And also drinking the recommended amount of water according to sex, weight, age, activity level etc.
Some say to stay away from certain foods to reduce stink, but some of those particular foods are anti-inflammatory and anti-parasitic (garlic, onion) so I don’t follow it personally lol
I drip from my head and get soaking wet all over my face and down my neck when doing something like a bit of vacuuming
It's awful and embarrassing
@@wendyackroyd8382 Me too. When shopping. I wear a headband it catches the sweat.
The only places I don’t sweat are my underarms, my hands, and my feet. My hair is always wet and my clothes are always damp. I’m lucky tho, at least I don’t smell. At least my family says I don’t. I’m just wet, ALL THE TIME. It is the most uncomfortable feeling. Sometimes it bothers me more than the pain which is also 24/7.
I tried soaking my clothes in sard soaker for 2days. (before soaking I rub the shirts with sard soap on the stained areas) this seems to save my clothes. Hope you can save some shirts. Use gloves if you have sensitive skin as I do. 💐💐💐
I’ve had Fibromyalgia for 14 years. It’s been somewhat quite for the last two years and I’ve been in the best shape of my adult life. I stopped researching and going to the doctor during that time frame because I was over feeling like an alien. 2 months ago I went to the doctor for what I thought was carpal tunnel, it wasn’t... My fine motor skills are going nuts and I’m getting weakness in my right forearm, hand and shoulders and now it’s traveling to the left side too. I came home today and for the first time in awhile I looked up Fibromyalgia to see what’s new and found your video. It’s reminded me that “ we” are not imperfect and that pain, sweating and all our little quirks make us unique. But you found a creative outlet to get you above the clouds. Great job!
I was diagnosed in early 2020, as you said some people believe you're just lazy and using covid as an excuse. Thank you for posting this, hopefully enough people will see this to make a difference
This is so true! My own mother, who has her own health problems, doesn't understand how one day I'm fine and the next I'm completely exhausted. I've tried to educate her about my illness, but people who have never experienced it just don't get it!
My children, thankfully, have educated themselves about my illness and completely understand my limitations.
My solace in this depressive state is my faith in Yehowah and His Glorious Son!
May Yehowa's Kingdom come soon to end all our suffering!!!
All Praise, Honour, and Glory to Yehowa in the name of His Glorious Son, Yehowshowa HaMashiach!!!
So after watching the video, as always I jumped into the comments. Oh my - there is a lot of people dealing with the same things I am, and as I read on - I'm realizing that I should have been diagnosed by age 10 years. I was diagonsed about 10 years ago. For 55 years i was told it was all in my head, theres nothing wrong with me, my complaints are inconcestant and Im making it up as I go..... I'll be 65 later this year and it has been a long haul to get this far in life with very little to mostly no help at all. I agree doctors need to learn more and to truly listen to their patients - Not Everyone is a Liar. Thank you to All of you for sharing your situations it is muchly appreciated. (Sorry for bad spelling as for some reason my spell checker doesnt work on youtube).......
I'm going through a bad flare up right now. It hurts so badly. Pain, nausea diarreah,😢😢😢
If it’s any help to anyone here : this is how I’ve coped for 25 years
Always keep warm it relaxes the muscles and nerves : even summer can get chilly so keep even temperatures where possible. A hot water bottle or similar very comforting
Avoid sugar
Drink warm /hot/rooibos tea
When in pain a bit of apple cider vinegar in glass of water
Don’t try and explain this to anyone: unless they have FM they will never understand
Take a couple of natural anxiety homeapathic remedies to keep stress levels under control
Be kind to yourself and don’t ever feel “guilty” about not being able to do stuff ❤️
I’m 72 and I’m active and stamp on this FM when it rears it’s ugly head 🤣
Love to you fellow sufferers xx
I have had FM for over thirty years now, so glad to see I'm not alone in those mentioned symptoms. No doctors available here and they didn't know about those symptoms, I guess, back when I was diagnosed.
I can relate to the symptoms! It's frustrating everyday. You don't know when it's a good day until you try to get out of bed!
I'm a long covid sufferer for over three years and it brought in fibromyalgia. My abilities are around zero and the everyday pains are unbearable. Thank you for this clip 🙏🏼
I have long covid also. It's debilitating. So sorry. 🙏
had FIBROMYALGIA since 1997....
DON'T see it as part of YOU....
view it as a separate ENEMY then you can distance yourself....
DON'T let FIBRO or stupid people get to you....
I also recently learned that being itchy is a symptom as well.. I always get really itchy at night, especially on my back or soles of my feet..
All these are so very true. And most doctors don't know or understand and now most of the time I don't even talk to anyone about this. It's a disease that needs to be talked about.
I have Fibro and ME, both developed in the past 5yrs.....I'm 54 now, and sadly even my own family are often unkind....None of us asked for these conditions, but we should all be proud that we try every day.....
Currently struggling with sharp shooting pain out of nowhere. Stabbing pains in my back all over my spine. I have ddd and my doc suspects fibro. Also suffer from a form of autoimmune gi dysautonomia, and an arachnoid brain cyst which effects my mood and migraines, and other nerve issues. Very hard days.
Im sorry your going through the shooting Pain and DDD I struggled with this and cleaned up my diet. Look into low inflammatory. It helped I no longer have Those shooting pains. I hope this helps to know you won’t always feel that way
❤❤
I just share this video so people I know how I feel. So many more symptoms. Just when I think I have a grip on it, something new pops up. ☹😩💜💜💜
Fibromyalgia causes me bad headaches when reading got to 0:41 and could not finish reading all the notes. Also affects spelling and writing memory sorry if anything is wrong.
Your not alone. I'm been dealing with it for a while.
I have found many difficulties with my eyes, 4 conditions, some days much worse than others - hard to cope with the iPad, better with computer. Also start to read something and just cannot continue. I also get much itching and burning, not only all over body but head as well.
My skin burns, especially the back and neck. So many years now, forgotten what it was like to feel normal, if I ever did. It all started from taking a polio voral vaccine as a schoolgirl, when I first became I’ll. then later given a beta-blocker for b.p, which finished my legs and caused such disability. My husband had to become my carer. Now I’ve lost him.
At the moment, the itching is the most unmanageable thing for me. I do all manner of techniques gor my other symptoms, which on the whole help me. No amount of cream, antihistamines or natural remedies help. Ive been diagnosed for 15 years, but had symptoms a lot longer. Thanks everyone for sharing, it does help from time to time to see what we go through. ❤ 1:36
We should not relate to it as embarrassing just because its invisible. If we wore a plaster cast on a limb or used a wheelchair people would treat things very differently. People with forms of lupus are vey similar.. Its those judging who should feel embarrassed.
I attend a fibro clinic where I live when I need to and its the only clinic in the southern hemisphere. Its a 3week program and I've learnt so much and benefitted from the amazing treatments and education. One day I went from a massage to a class on neurophysiology!
I always think that I’ll be better tomorrow but it never happens. Every day is torturous. I have to take constant daily pain killers. If anybody thinks this illness is not reel. Then think again.
Thank you. It says exactly what I feel.
This is a good video
Thank you for the video - It is brilliant. I have saved the link on my phone so I can give it to anyone that asks and they can get a bit of insight in to what we go through. I get the twitching in my hands which is frustrating when it happens while carrying something - broken my fair share of things when they go flying out of my hand :). I was diagnosed 12 years ago along with Ankylosing spondylitis. Something that really gets on my nerves is when people ask "Are you feeling any better" - Why is it people cannot understand the meaning of the word "chronic"!
I have fibromyalgia too and can relate to all the symptoms you described. I have been taking Amitriptyline 50mg which helps with the physical pain symptoms, I hope it will help you and others too
I’m not ashamed to say that this made me cry a little. I’m a type A and I’m a planner and doer but sometimes it’s just so hard. And it’s difficult to ask for help without it becoming an argument. These autoimmune disorders behave so differently I never know if what I’m experiencing is normal or not.
After years of being in pain I told my doctor that even my skin hurts along with other symptoms.He told me that I probably had FM but it was expensive to diagnose.He prescribed Lyrica and I ran into the walls and acted like a drunk but after a while it got better then my insurance quit paying for it and I developed a movement disorder.I jerked my arm and neck till I thought I couldn't take it anymore.I caved into Gabapentin even though I was told it was the devil by my doctor and that you can never stop taking itor the side effects are unbearable.I am doing much better now and as long as I take it my pain is down a knotch but If I forget all my nerves start screaming 😱 I didn't know these other symptoms were because of FB I thought it was the Gabapentin.What is the cause,is it poison in our food or the poison in the air?
With you on everyone of those that you mentioned. It's utterly dreadful and debilitating at times. I have pain every single day nonstop. I'm exhausted with it.
This made me cry. I wish my family truly understood
I've been struggling with Fibromyalgia since 1999 and it's a beast. My brother, God rest him, said that Fibromyalgia brings all the joy of AIDS, but you don't get to die. We lost him to AIDS shortly after my diagnosis.
I have every one of those symptoms shown in the video, but some I didn't connect to Fibromyalgia before now.
I also have been diagnosed with Adult Onset Still's Disease, which is a nightmare! Between the two of those, my life is pretty small on most days, but I have learned to find happiness where I can. I am blessed with the love and unfailing support of a really amazing husband. He has learned how to help me get through the bad days and how to celebrate good days with me. I don't know how I'd manage without him. He's my rock.
One day, all these trying, pain-filled days will be only a bad memory and, until then, I do the best I can to live a little better today than yesterday.
To all you out there who share my diagnosis, be brave. There is a brighter day just over the horizon! This won't last forever.❤
I just found out today that I have fibro. My kids couldnt stand to listen to me before. Said i had to go walk and do things. My brother in law thought i was lazy. I am not happy i have it..i am happy to know im not crazy and i hurt for a reason.