Instagram yvesym?hl=en Twitter / _yvesym_ Snapchat: yvonnemadden Crying from back pain, trigger point pain, painful cramps, knots, headache and worst of all: Fatigue.
I just saw this today and I so relate to everything you said..It’s such a messed up situation because there a price for every ounce of energy we use, it has to be paid back double or triple in rest, increased pain etc.. Then there’s the medications that don’t seem to work. I now just hide from the world. I don’t mean to be a bummer. This disease has worn me out. You are not alone in your feelings, we all just stop talking about it.
Easy yoga this is one of the most useful comments I think I have EVER got. You couldnt have described it better. You really couldn’t have said it better....this is a real help for me when I try to describe fibromyalgia to somebody else.i don’t really have a default answer if you get me.i find myself getting tongue-tied. I’ll remember what you said here because it sums things up perfectly. The repercussions and suffering following periods of the REAL living we might be able to ‘pull out of the bag’. Always followed by suffering...Thanks for your help. Take care xxx
That’s for your reply. Only another person with Fibromyalgia understands us. When I get up in the morning it takes 3 hours before I can move around. It’s so isolating. Doctors don’t know what we go through and don’t understand the muscle pain is real. Even if I do yoga I’m hurting the next 2 days. My thought are with you.
I don't think these kinds of videos are "not helpful to anyone". Seeing someone else vocalize the frustration and sadness I feel myself is therapeutic, because it makes me feel less alone and isolated. And even if you know you're better than before, you're still allowed to be sad about the pain you feel now. It's good to not be negative and it's good to be grateful for what you have, but you also have to be allowed to grieve and be sad and frustrated.
This is the first vlog I have ever seen with real, raw emotion. This hit me deeply today because after I woke up this morning I cried for 30 minutes because of the pain, frustration, and exhaustion of dealing with fibro. Just watching you be truly honest about your struggle made me feel less alone which helps a lot since I don't have family and my friends don't understand. I sincerely hope that you have gotten to a place of less frustration and pain. Thank you for sharing.
Please be assured, I and others who care, don't look at this video as being negative -- it just tells us what you're going through, and people who care about you won't judge. Naturally I wish I could say some brilliant words that would solve the medical problem once and for all, so that you could put more energy into your goals rather than dealing with what's getting in the way of your goals. But I can only try to be supportive in some way. You've conquered so much! I hope that support makes you focus on the things you have achieved and can directly control and make it (somewhat) easier to bear what you can't control. You deserve praise and admiration for sharing what this far-from-perfect and far-from-fair world has thrown at you.
I'm with you. And I am glad you spoke. It's hard to process this pain and exhaustion, let alone communicate how you feel. I get so fatigued that sharing anything regarding my health sends me into silence. I am one of many who can relate with you.
I understand you deeply because I have fibromyalgia and ibs with chronic fatigue. You are representing thousands of people . Sweety, pace yourself and listen to your body.💜
I absolutely know how you feel. Fibromyalgia is just crushing at times. It's so hard to see everyone else around you have no problem getting through their days while you struggle to just do simple tasks. I am still trying to work through these issues myself so I can't offer much advice, but it is comforting to me to know other people feel the way I do so maybe that will be comforting to you as well. It is so hard but you are not alone.
isnt it crazy how many sufferers there are?it blows my mind...it is so goddam frustrating to know how pain control is poor...im sorry youre in a similar position Ali :( Thank you for commenting btw
I've had a stroke. The right side is damaged, typing left handed. Had heart surgery and this mean menacing pain 1Corinthians 10:13 no were not alone. I can't cry anymore, no more tears. I refuse opioid because people are dropping like flies. I wanna live even if it hurts.
Oh my goodness you are feeling exactly what I feel only I have not had the strength to say it out loud! You are my hero!!! I have days where I feel like I just cannot go on. The pain and fatigue are crushing! I was just diagnosed last week after what seems like a lifetime of fatigue and strange symptoms that no one could explain . I was told it was just anxiety and depression . YES I was depressed because my body had become this horrible, uncomfortable, painful, anxious alien. I felt like a prisoner in my home and could not enjoy the full life I was used to. I was scared and NOBODY would take me seriously not even my husband who just became burned out on all my physical problems ! I had one friend tell me " no one could possibly have all the physical problems you have". I stopped talking to friends about my health because they didn't understand and they got tired of hearing me say how bad I felt and how scared I was. I feel alone and isolated, I hardly ever leave my house because things like shopping with my daughter or riding in a car for too long to go on a trip left me feeling like crap. I would have pain for days afterwards. I cannot exercise or drive a car because it leaves my body in pain. I can really relate to what you are dealing with!! I also struggle with peripheral neuropathy which sometimes accompanies fibro...it is awful ! The burning, pins and needles and shooting nerve pain is sometimes so difficult to deal with. I am only taking a small dose of gabapentin because I am afraid to take too much medicine...my body always has terrible side effects from drugs. My new neurologist prescribed Effexor XR for my pain and depression at a very low dose. I have yet to start it because I worry about it making me feel even worse than I already do! I know there are so many people out there who suffer from other diseases that are so much worse than I am and I feel VERY guilty for complaining about my situation. Sometimes it just helps to know that there is someone out there listening who TRULY understands and who can offer a little encouragement and strength. I see a therapist but she has not really been as helpful as I had hoped and the cost is getting prohibitive. So, thank you for being honest and for posting your many informative, caring and helpful videos! You will never know how much this video helped me . I feel like you have gotten into my mind and expressed exactly how I feel!! I would like to know how you avoid weight gain from all the meds when you cannot partake in a regular exercise routine. I worry that all these meds I may have to take will make me gain too much weight which can put me at risk for even more pain and other health problems. I think living with this illness is two sided, the docs say exercise but they have no clue how much pain that will create. Thanks again for all you do for us fibro sufferers. I wish for you many better days ahead and a sense of hope for the future!!
It is so messed up that people had a hard time believing you. I had a period where this happened,at my WORST. My parents and GP believed me. But in the beginning (when it was off the scale bad) I had a consultant who told me it was because of my weight and that if I gained weight I wouldnt have pain etc etc. IT NEARLY DROVE ME CRAZY. Eventually I was taken seriously. But the stress of not being taken seriously gave me such a complex and made me feel so isolated. To this day I am suspicious that people dont believe me and that was one reason why I never really talked about fibro to people in my day to day life for fear of not being believed. I couldn't cope with that stress again. It was close to a nightmare. So having your husband question you must have been horrendous. Meds: I rarely look at leaflets or Google things when I'm trialing them. I feel if side-effects are bad enough I would know from my body and not be looking out for symptoms if you get me.(omg my shoulders and neck writing this are aching!!).Weight gain is similar. The only way these drugs can make you gain weight is if your appetite is increased and you eat more. Practical measures are most important and thats why my weight hasn't really responded to medications that could increase appetite. Portion control, pre-planning etc is what I'm more about, you know?
Cara Gunnels please see a doctor for pain meds so you can feel more comfortable at least part of the time. I got sent to one and have been working hard with him to find the right extended relief pill and break thru pain pill which I need to take right now because I won't make it to the extended relief pain pill time yet. I have a few hours to wait to take it yet and I'm hurting. Back of neck shoulders my arms and hands and fingers. Even the bottom of my feet and my hips hurt. Sometimes it's like fire through my whole body. It's definitely fire throughout my body without even touching that area when I had nothing to take for it so I took Ibuprofen years ago and so much my ears rang and my stomach hurt like it had an ulcer from Ibuprofen and I would even get hangover headaches from the Ibuprofen so the doctor started me on some smaller pain med and as this disease gets worse I know from having it many years now, he sent me to a pain specialist. Finally I had some better days and my stomach ulcer healed up. Anti-inflammatory meds help too but then you have to take a pill for your stomach first like omeprazole to keep from getting a painfully sore stomach that could bleed.
Cara Gunnels I know exactly how you feel I deal with it every day the pain is so cruciate in you alright what you said about the medication nothing really works I'm under the pain specialist at The Walton Centre in Liverpool but there are only there to help you deal with the pain not to take it away I'm in a wheelchair now because I can't walk far at all you feel all alone and isolated with the pain I've had fibromyalgia now for 3 years I only hope you find a cure for this horrible disease living with this pain just drags you down every day so I know what you're going through as I'm writing this I have tears in my eyes because of the pain it's just nice to know that there's somebody out there that suffers the same condition as you and it's just nice to talk to somebody because it's only people like us know what it's like going through pain every day god bless you
My prayers for you all. My wife deals with it as well. Anything to lower stress level helps a lot. I pray for a cure for you all, and until then comfort.
My thoughts and prayers go out to all of you, and Yvonne, making this video was such a blessing to all the people who have watched it. My story is in another comment below, and I pray for all of you that they soon find a cure, or at least treatment that can truly ease your suffering. Good bless you all.
When I got diagnosed my whole world changed. I no longer wished to "work hard until retirement" I won't be able to enjoy it. I drove myself across the country to have a 'last major grand adventure' before I'm literally stuck at home again. It wrecked my marriage sanity and hope for a decent future. All I can do is catch the waves of pain and wait for a decent day to make moves. At this point I feel like the fibro will ultimately kill me. Unless I'm misdiagnosed but even then, Regardless, we all die anyways, I just wanna enjoy the time I have left even if it's through poverty. Thank you for sharing your heartbreak, I certainly feel it too. Running out of spoons when your mind can finally push through the fog is disappointing to say the least. This shit is NOT easy! You are definitely not alone either.
This was really helpful for me, too. I feel so alone sometimes and...there are times where I can't imagine carrying on like this anymore. Everything you said, the times you teared up, I could relate so much to it. I can imagine the emotional toll it must've take on you to be so open about what you deal with, but I really hope you continue to makes vids on this topic. I haven't seen any other youtuber who's fibro story spoke to my heart the way your's did. Thank you.
First of all, you have every right to complain. Secondly, your videos have helped me so much. I was diagnosed was fibromyalgia in 1994. I've had seven spine surgeries, and I kept thinking that all of this pain was because of my spine. Now I realize that it's both. At the most, I get out of the house once a month for a little while. I haven't been able to read a book, and I kept thinking it was because of my spine pain. When I listen to you, I understand so much more about myself. I have a seven children, and nine grandchildren. I can't do anything with them, It's actually in bed and talk with them. I'm really happy that we have a lot of giggle time... That always boosts my mood and my pain level. After 25 years, I still feel guilty that I can participate in family activities. All the parties come to our house, because I have to lay down so much... Then I feel terrible because I haven't cleaned the house. I used to be here really giving person, now I feel like I am nothing to give... I did talk to my adult kids about this, and they told me that just listening to them and the grandkids help them a lot, in the past, I was always too busy to be a good listener. My teenage granddaughter told me that I did the best advice when it comes to relationships. I always pray that God will put somebody in my life, that I can help, and it's usually somebody online. I will keep you in my prayers. I've been disabled since 1988, really happy to have my iPad. Again, thank you for doing your videos, you have helped me so much! So much would you say is as if you were talking right to me, Or about me. Thank you, you have touched my life
Exactly what I needed. I was diagnosed with ME and fibromyalgia last week. Although I know I’m lucky since it only took a year to get diagnosis, it’s still the pits that these are life long conditions in which everyone has to find out what works for them and include major lifestyle changes. To complicate matters, since I’ve had to greatly reduce my exercising, it’s effected my mental health, my gastroparesis and my eating disorders are resurfacing. I watch your videos because they are informative, helpful, friendly, relatable and now I know that it is okay to cry and be upset. Everyone needs mini meltdown days, it’s how we cope. Thanks for your honest videos.
Thank you so much for your reply! Today is turning out to be one of those days where I cannot seem to find any hope. My neuropathy symptoms seem to be getting worse as it is moving up into my legs not just in my feet. The pain is bearable but this type of discomfort always makes me feel terrified that I am going to become disabled and I wallow in a state of fear and depression. I am supposed to go to a family function tonight but really just don't want to, not because of the pain but because I find myself feeling so envious of their good health and the active, satisfying lives they enjoy! I know this is the worst thing I can do for my mental health but I cannot seem to help myself. I struggle with trying to act "normal" when I actually feel like an outsider and so very different from everyone I know. I am an older woman(64) and this recent diagnosis and the accompanying symptoms have left me feeling useless and that my life is over. I cannot travel or shop or enjoy social gathering or exercise....you name it , I probably can't do it!! My life has been totally squelched! I hate being so negative and depressing but I see no long term solutions, no light at the end of the tunnel and little hope for regaining a productive life!! I feel guilty saying all of this and will probably regret posting this because it sounds so bad....I guess I am having a day like the one you posted about(above). Thanks for your suggestions about walking, I was able to walk 3 miles a day before this happened . Now I am lucky to do 10-20 minutes every once in a while! There are days when I feel like there is no use in trying, no hope! Thanks for letting me rant and vent. I apologise for the blatant negativity ! Maybe tomorrow will be better! By the way- I love your accent and you ARE helping other people ! You have helped me just by allowing me the chance to be honest...even if it isn't pretty!
Hey Becky. You don't need to be sorry for being negative -these feelings are reality for many of us and it can hit harder at times. my mum has a lot of nerve pain and degeneratie disease in her spine etc.i know what chronic pain does to her, though she generally puts up her brightside. all i can say is that you hvae to start from scratch.with the walking etc and working on keeping the rest of your body healthy. SO important. that envy you describe,again, is so understandable. from time to time i feel like such an outsider looking at girls my age have such active lives and being able to keep up day after day after day without suffering consequences. i think you owe it to yourself to practice self-compassion as much as possible. and to talk about these feelings with your family/friends or someone special. chronic pain has huge pyschological implications and to be honest i feel im only REALLY learning these past few years. there are so many constraints.and our behaviour and thoughts are so linked...its important we pick things apart as much as we can and keep working on understanding ourselves and our needs. falling in to that negative mode is so tempting and when the pain DOES become unbearable i dont think its a bad thing we indulge in our darkest thoughts.but NOT ofr too long, you know? but we're only human.and we're allowed to feel bound by disability, we're allowed to feel dark about things because it IS dark. had a tough day yesterday. was low on energy,pain was high, and i found it so difficult to stay watching a football game with my boyfriend. i hardly squirmed because i didnt want him to be conscious of my pain -i wanted him to enjoy the game in the pub with a few drinks and have HIM feel no constraints. by the end of the game i was in so much pain, quiet and I just thought: what would my life be like without pain. IMAGINE what I could do! Who I could be! Where I could go! I have this huge sense of spirit and freedom, especially going through a really bad eating disorder in the past. And have so many desires and wants. On the better days I allow myself get carried away. Because on the worse days all my hopes and aspirations are entirely quenched by the reality of having no healthy vessel to explore in. Some days it just kills me,kills my spirit. And one of the worst parts is nobody knowing and being spurred on,on better days,by friends and people who dont know my situation well. I build my hopes up,despite KNOWING many of these can't be fulfilled in the way I want to fulfill them and theres no point in being realistic all the time because reality is a hard thing to face 24 hours a day! We need to maximise the slightly better days.. If you could get back walking it would be BRILLIANT. Even 10 mins a day,despite aggravating your pain. It will do good for the rest of your body that suffers inactivity,poor strength etc from neuropathy.. GOD I rambled here! Sorry! I really hope you're not alone -never! There are millions like us. And many of us look and appear 100% normal! Sending you ALL the best and a big giant hug :) Yvonne xx
YvesyM You are so wise Yvonne! I only wish I had someone in my life that I could talk to that I could be honest with. My friends don't seem to want to talk about it, and they cannot understand since they have no idea how this feels. As I said my husband would just rather not hear it. You are so right about the psychological toll this has on a person....my depression and anxiety have increased greatly over the last year. I have taken your great advice and started trying to walk some every day. It doesn't always go as I would like but I feel it can hopefully at least help my depression some and maybe boost my self esteem a little too. Thank you again for taking the time to respond to my posts and for CARING! It means so much to me!
Early 50s and male. Was diagnosed this summer with fibromyalgia. My Mom has suffered with it for decades. I’m have days where it can’t imagine, and frankly don’t want to, live with this pain, fatigue and fog for years. Thank you for you honesty. You’re a lovely young lady and that accent is awesome.
its good to get representation from the male side so thanks for commenting. god its so tough..my mum has it too, along with other chronic pain conditions. i have been better overall over the past couple of years. not pain-free but muuuch better. i feel like thats possible for everyone if its been like that for me. so dont lose hope altogether, though i know the toll it takes mentally...sending best wishes to you and to your mom too
My Heart Goes Out To You! I am going through everything you are but I am 58 years old. I have lived with this for many years. However, my research told me that it usually hits in 40's and 50's. I had no idea it could attack someone so young. Your video made me cry. As, obviously, I can relate. But again, I can't relate. I lived my life, married, had a child, etc. So I can't even imagine feeling that way at your age. I can however offer advise on what has helped me. Most people may not afford to, but going to a warm climate and an environment controlled by you where you are travelling alone so that you can do what you want, when you want, and how you want without worrying about the feelings of companion travellers. It is soooo cheap these days. If you go on airbnb and find a nice studio apt (especially in Mexico) you can stay a month, including flight/rent/food/etc for $1200 CANADIAN!!! Just get away sweetheart. You cannot imagine how simply floating in wonderful salt waters of the Caribbean can do for your body. The daily sunlight is also a necessity for our minds and bodies. Another very helpful remedy I have found is Marijuana. I went through my whole life never touching it. Now, is another miracle for me. If you do the research, there are "day time" strains of marijuana that actually help you get out of be and "Do Things". But after "doing things" we pay with pain later. But that's okay, because we also have "night time" strains that truly help with pain, sleep, anxiety, and I could go on. Did I mention that You can't get cancer from smoking marijuana. Or you could try CBD which is low in "the high" thc content and works only on pain. I hope you take my advise. Or at least consider it. I CAN SAY THIS WITH %100 TRUE KNOWLEDGE FROM ALL MY RESEARCH AND EXPERIENCE WE TEND TO THINK OF OTHERS AND HOW IT EFFECTS THEM AND FORGET HOW TO TAKE CARE OF OURSELVES. So take care of yourself my dear. And God Bless.
I hear you explaining "me" i hate feeling alone and so worthless, diagnosed 30+ yrs ago with fibro, lupus, 4 otger autoimmune diseases/ syndroms + 2 hianal hernias, heart attack, pancrase disease and . . . I am so F-ing tired of Always have to adjust over and over to these diseases, not to mention trying to explain to people really well how it feels, thank god for you and others who make videos so i can share with family and friends, in the words that i cant come up with myself while trying to get people to " see" and "hear" me, you and so so way to many others. Im so tired of sitting here wanting from the depth of my soul to get up and be productive, but always seem to spend most of my days now crying, even 3yrs ago i could manage mind over pain @ 50% of the time working through the pain, yes paying for it latter, however i felt ok woth that knowing " i did . . . " and feeling good about myself, if even for a short time. Bit now, showering is out of reach most days, tring to get ready for well anything is crazy crazy lots of planning, rest, mental and physical struggles, and stopping to cry or lay down in pain every 15mins for 30mins so i can get up and continue for an9ther 10 or 15 mins before i break down again, becomes so toxic to my selfworth and mental state. I think it was Pinochio that said " i just want to be a real boy" i use a version of tjis ALOT " i just wanna be a real person. So Sweetie i understand and youre not alone, and because of the videos you and others make, im not alone and knowing this does help ! Thank you and you will be in my prayers. .
I’ve been binge watching your videos and my goodness! It’s like having a twin in my health, feelings, and emotions! You’ve voiced what I’ve been feeling and experiencing since I was diagnosed with fibromyalgia, although I don’t think I could ever say it as eloquently as you did. ❤️ Please know that you’re not alone and that there are many people out there who know what you are experiencing. Your videos have been so very helpful to me and I look forward to watching more! 👍
Me, too. I drove 45 min to get to my rheumatologist appointment and cried the entire way. I have some other symptoms that don’t seem to be from fibromyalgia. I have been seeing doctor after doctor and having test after test and everything comes up negative. Some days I want to just stop searching and fighting for answers. But I guess we are warriors. We get knocked down but we rise up again with the encouragement and support from friends, family, other warriors and the hope that just maybe we will find relief or an answer. Thank you for being honest and transparent with us. It is helpful to others when we are. If you are always “together” and I am not, I will think that I am such a failure at this thing and feel worse about myself. You are such a dear and this old warrior appreciates you.
Thank you for opening up and sharing how you are feeling and what you are going through. As someone who has suffered for years with chronic pain, and has recently been diagnosed with fibromyalgia, I have empathy for what you are going through. I also feel understood. It’s hard to explain the feeling to someone who does not have chronic pain and watching your video made me feel understood.
This was a tough watch. I was diagnosed with M.E and fibromyalgia ten years ago. I know exactly what you are going through and the frustration you feel. I was a fit and healthy 46yr old before I was struck down , always on the go. I can just about look after myself now and that's all. I no longer recognise myself from the person I used to be. It has stolen my life and all but broken me at times. I now feel almost useless but totally powerless as my body just feels broken , nothing works properly. I feel time is running out for me as regards the medical profession finding a cure but I pray to God they will find a cure for future generations and younger people like yourself. With long covid now a thing and fibro and M.E being very similar illnesses I think there is every chance the medical profession will be given more funding to find a possible cure. We can only hope. Try to stay strong , you come across as a lovely genuine person who deserves a full life.
I think this is good to vent and express yourself. Having chronic pain and illnesses can be devastating to your mental stability. It's good to talk about this to everyone and it's easier to talk with people you don't know because sometimes it's easier to talk to strangers. You are brave and you are strong. It's tough but just take time and breathe literally. I have been dealing with chronic pain for 6 months now I have not been diagnosed with Fibro because all test have come back normal so my doc thinks it's sleep apnea etc...I have learned it takes years for people to realize what it is. I have a lot of symptoms that are common with fibro it;s frustrating I want to give up but I keep moving. Your a lovely person...
Thankyou for being so vulnerable. You deserve to express yourself. It helps me to here you when dealing with this diseases. I need to here I'm not alone so Thank you.
I’ve lived w/ fibromyalgia for 28 years now. First it was a few bad days and now life is a few good days. Only recently I’ve learned that there is a link between fibro and lack of level 4 sleep. Not surprising - I can’t remember when I enjoyed that kind of deep sleep. Now, at 80 years young I’m waiting for my CPAP machine and wandering if it will give me some relief. Thank you for sharing what many of us can’t put into words.
im sorry you're feeling alone hon.i have had times,very recently, where I feel very alone too. enduring suffering, in silence, is a lonely AND isolating thing.all I can offer to you is that you are not alone and that so many people are suffering and fighting alongside. xxx
sending a tonne of gentle hugs your way. this day last summer was just rock-bottom with the exhaustion and pain. it is incredible what we ACTUALLY endure and I think all we can do is focus on the wealth of strength we have for what we put up with💪🏼
I am right here with you. I pray a lot. I think we have to cry and feel sorry for ourselves every now and then. This disease is truly from the devil.....he knows we are warriors, wants to hinder us.
I am really pleased you are using this platform to let it all out. Yes it sucks, we all have this days and I can only admire your courage to voice it all out. I am crying with you feeling the same pain. Be strong, your soul is so pure and able to see through it. A massive hug to you and praying for you and others who are going through the same struggle ❤🤗
I very rarely comment on videos, but I think you should know your video is so incredibly helpful for other people going through the same thing. I feel the exact same way myself, and I wish with all my heart that you didn't have to.
Thank you,so much Fiona for the love. I'm sorry you know what it's like -it sucks so badly and it's so hard to explain to somebody who hasn't suffered prolonged pain &fatigue. I'm here if you ever Wana message me😘Xxx take care
I feel the same frustrations, exhaustion and pains. It's hard not be abble to do what we want because of our body. Sometimes things have to be tell and you do the good choice. You say things that many of us don't have the courage to say because we feel ashamed or misunderstood or we don't want to be negative or weak. Thanks you. You're not alone, you're strong, you're beautifull and very positive. (sorry if i made mistakes, i'm french and i don't speak english as well as i want, i hope you understand the message). You're doing an amazing job. Bye
I'm sorry for what you are going through. I know exactly how you feel. You want to give of your self and want to give so much but the pain gets in the way. I see many people around me talking about their jobs and I want to be able to do the same thing but I can't. I know that if I go out there and work it will only add to the pain and problems I already have. Some don't even know the extent because they are not in our shoes. We are not looking for anyone to feel sorry for us but just want people to understand and know how we feel. To have sympathy and empathy as to how we feel. Keep going you have gotten this far, I know it's hard but don't give up.
I'm glad I came across this video because it truly captures the frustration and the hopelessness of fibromyalgia. It was not depressing at all. Just like you my activities have all but ground to a halt and I spend most of free time lying in bed. Christmas into New Year this year I got the cold and it was the worst pain I ever experienced in my life. I hope you continue to make more videos for fellow warriors.
It's very good that you have support . Fibromyalgia started when i was hit in a car accident. You are not alone , with research they've found truth and knowledge as doctors themselves have become affected with Fibromyalgia some unable to work . Much more happiness and love to come our way.
I’m so sorry sweetie that you are suffering. I can so relate. It’s alright to feel the way you do. Sometimes we just need to vent and that’s okay. Sending prayers, hugs and love your way.
I feel that as a suffer of this condition, we all understand as it is much harder for most people who can't feel our pain to truly understand. I am going on 11 years, and it has only gotten worse, but I will not let it take me down. I will say this: through the day the good lord brings me home, I will cherish that I will no longer fight the pain and will finally have the rest I have prayed for, and he is my reason I refuse to give up.
I am hoping that you are doing better now. I also have Fibromyalgia and feel the same frustration about having the exhausting pain so much and every day. It is hard and sounds like you have great support don’t forget that and use that so you don’t have to take it on by yourself..it’s to much for one person to take.. best of luck and keep fighting!
Thoughts and Prayers to ya, I was diagnosed with Fibromyalgia in 2010. The struggle is real, right now just watching the video on my iPhone my wrist and elbows are killing me, keep your head up!! Cognitive behavioral good thoughts from now on Hun, remember, the more we’re down, the more we hurt, God Bless!! 🙏🏻❤️
Yvonne, thank you for sharing. I know what you mean by not wanting to share with people close to you. I tend to bottle up everything too but it's good at least here online some of us understand. My lupus symptoms, when they were the most severe for 2 years were similar to severe fibromyalgia, except maybe my fatigue was worst than the pain, you might be the other way around? I don't know. But similar, I couldn't write or use a computer mouse more then ten minutes or my wrist would be intensely painful. Constant neck pain was a killer two and all my joints and leg muscles burned. It's hard because you can't escape your own body. I couldn't stand for more than a few minutes... I don't know how many times I had to sit on the floor in random places just because my body was aching. You are truly a hero Yvonne. Thank you for talking about these things and spreading more awareness because it affects a lot of other fibromyalgia sufferers and even other people with other illnesses with severe chronic pain can relate also. I don't mind you using this platform to share :) whatever helps you best. Don't know what else to stay, I wish I knew the answer and though it's frustrating that life isn't how it could be right now, you are still Yvonne and that is who people love, not what you do or what you achieve. Though we all know if it wasn't for your body and health you would be doing so much more but you never know what could happen over the next months or year, have you heard any stories of people getting better for a while? Like go in remission for a period of time? Lots of hugs to you, better days are ahead for you I believe :) xx
Dani! First off I want to thank you to bits for the time &care you took to write this .it sounds like you really have a good idea of how bad Fibro can get and how the constantness of fatigue/pain wears you down emotionally and physically...it's strange but I have met other people with Fibromyalgia who have a past history of eating disorder...I wonder if there's a link... The fatigue is often as disabling as the pain. I find with pain I move through it, I don't respond to it for as long as I can possibly get away with because I know my muscles aren't inflamed and there isn't a disease pathology....so a lot of the time it is mind over matter with me. Which of course has downsides 😕 I am more sore today but far less fatigued and coping better again (thank god)! Messages on here really helped. Honestly thank you for the lovely message and good wishes. It has reminded me of all the wonderful GOOD people there are in this world 🙂 and we totally need to work on 'offloading' on people close to us....👊🏼👊🏼👊🏼
+YvesyM It's interesting and I would not be surprised that an eating disorder could cause so much damage to the body that someone could possibly develop fibromyalgia, who knows! My autoimmune disease started a year after I was fully weight restored, but it still could have played a part in me developing Lupus. Sincerely hope you will have more good days than bad this week 😊 xx
Crazily Dani believe it or not it is proven that people who have suffered trauma often acquire Fibromyalgia afterwards. Totally physiologically speaking. The region of the brain that interprets pain is in the same area that regulates emotions etc. Under extreme stress that part of the brain becomes hyper-sensitive and I have been told that this sensitivity never switches off as it should do. The brain consequently has false interpretations of pain therefore. That's why it is classified as a Central Nervous System Disorder..Interesting indeed. Lupus and Fibro can come hand in hand..Thank goodness neither of us have both! It could always be worse I guess!!! Listen, have a good rest of the week yourself and talk again soon :) Xx
Crazily Dani I also love what you said. Yes, Yvonne, you really did us a big favor in your videos to explain it so well and exact so now for ppl who message. I can just send your talk to them and say to them that this is how I feel and not have to tire myself out or get interrupted repeatedly for each single person. It's tiresome to type as well after a while.
Crazily Dani I also love what you said. Yes, Yvonne, you really did us a big favor in your videos to explain it so well and exact so now for ppl who message. I can just send your talk to them and say to them that this is how I feel and not have to tire myself out or get interrupted repeatedly for each single person. It's tiresome to type as well after a while. It's good for them to hear someone else has the same thing and I'm not making it up.
i really feel for you. I relate so much. It's so disheartening for even the tiniest things that should be mundane and taken for granted to be so exhausting and effortful in every way. And being exhausted and in pain all the time makes everything mentally harder as well. It feels so unfair to have made such an effort and a change with your eating disorder only for your body to feel like shite still. I so so relate. And also to feeling bursting to do so many things and my body is just like lol no. I wish i knew what to say that would be comforting. Just know you're not alone and hold onto hope because we really never do know what is around the next corner. And don't ever feel bad for venting on here.
Thank you Yvesy. I can totally relate. Negative or not, it's what it is. Your honesty is helpful today while I struggle with the pain and utter exhaustion. Seeing your video, I don't feel as alone as I felt before watching. God bless you Yvesy. Thank you.
I find these videos really inspiring and informative and makes me understand it more. It also makes me realise what I am going through every day is real and I am not making it up. It’s not so called “stress” it’s real physical condition.
Although I do not suffer with Fibro, I do live in constant pain every minute of my awake life. Thank you for this video. It is exactly how all of us in chronic pain feel. I have ended up being by myself completely because I feel I have taken so much from others. Please know that I feel it and I love you. You are special and we need you with us.
Never stop talking and don’t you dare feel bad about it. This needs to be talked about. We need to talk this. You are not alone. We need each other to listen, and to prop each other up on the days we feel like we just can’t go on. And those days are many. Gentle hugs to you my friend. I hear you and will be thinking about you every day from here on. We are here!! Xoxo
Hope you feel better , my girlfriend goes through these same feelings of being tired and you helped me to understand her pain so I pray for you to , too feel better
Wow Yvonne I'm a male and watching this made me have a 😥 you are for a start very brave to talk about your pain because I think most people don't know how to describe it I for 1 don't know how to, there is so many different pains around the body, so many different feelings cessations etc glad I've came on here it's like a ray of light for me and probably so many others thanks Yvonne hope you're feeling ok today thanks mark 👍🏻🙂
I will be 70 in a couple of mo.s and I have always had this to some degree, but never had much energy even as a child. People just think you are lazy. There is so much to say but I'll give the short version. Everything you have said here is exactly how I feel, missing out on things, not being able to plan things, and travel is hell on me. I had a hysterectomy it just really set things off for me and I feel like a dagger has been plunged thru my private parts, unbelievable pain, doctors have been useless, except pain doctor. I finally found out what is at the bottom of most of my pain, I had to diagnose myself, but it has taken yrs to do that. This condition that I have, which I am going to tell you about might help some people. I have hyper mobility in most of my joints (double jointed) puts extreme pressure on your ligaments which are weak, causing inflammation. My Rheumatologist (sp?) told me they have found that people that have hyper mobility can cause fibro. I went on to find that the cause is a connective tissue disorder Ehlers-Danlos. Finding this out made sense of all my problems which are many, severe memory problems, brain fog. My memory has always been bad but as I've gotten older is really bad. This condition is a genetic disorder and most doctors don't have a clue. I've been in pain mgnt for almost 20 yrs It is a bad time to need pain meds with all the problems that are going on with pain meds. I have to say the meds saved me with my job, couldn't have worked without them. I have flat feet which kills me to stand any length of time. I started my search with my blood type being RH negative, which I believe is connected to a lot of my problems. I am also ADD and take a medication for that it gives me some energy, and the pain meds can also help with the lack of energy. Please be brutally honest with a pain doc let the tears fall. You need to explain to him/her your pain as the worst day you have experienced. You are young you need to get some help, and you most likely are going to have to do a lot of your own research. It took me 20 yrs to figure out what was wrong with me, and there is a lot more symptoms, and problems but I've already been talking enough. You are wrong about this video not being helpful, It is helpful to many. The support from my internet friends kept me going and I learned a lot from the people that had the same problems. Just keep on trying to learn about your condition, keep records of your pain and other symptoms, and when you go to the doctors appts keep your records from any labs, put them in a notebook. Take care and I'll check back in to see if you've gotten help. I think if you reply to this it will notify me. Best to all that suffer with this.
anyone who has Fibro knows our struggle and the way your feeling, Fibro is a horrible thing to have and its not easy that's why we are called fighters and warriors, sometimes we all feel defeated but that's ok so long as we get back up when we can and fight some more, never feel bad for feeling sorry for yourself some times cause sometimes we do have them days were we think why me what did I do to deserve this and its ok, because its so hard to live with believe me I know I'm in my lounge chair atm in so much pain throughout my body that I want to cry, but I have to keep fighting and eventually it will ease a little it wont go away but it will ease, I hope you get some relief and not so many bad days ahead xo
I don't know if it helps, but I'm sending so much love to you. I hope your fibromyalgia is better than it was on this day - it's a horrible illness, and of course, because it's invisible, and because you are young and pretty - people don't get how much you struggle. Sending so much love and so many gentle hugs xxxxxxxxxxxx
YvesyM, Hello sweet lady..........I’m much older than you, but I know how you feel, I truly do. All us fellow fibromyalgia/chronic fatigue syndrome and thyroid sufferers or whatever illness you have know what you are going through. It’s so cruel & the tiredness & fatigue & pain take us to a place where we feel so low. But you will find this inner strength that will carry you through. You are beautiful & I want you to try to stay strong. It’s not easy, it’s agony when we miss out on so much & can never truly do what we want, but know that we are watching & listening to you & are wishing you the very best & much love🧚🏻♀️x
I feel the same here, you described everything I'm going through, I am just so tired of dealing with this, I really feel so depress everyday, I try to be positive but it's really hard. I don't have the strength to fight the pain, missing my active lifestyle, now I just lay in bed and cry, can't even hold a glass of water and takes a lot just to brush my teeth. I just want to close my eyes and not wake up anymore. Btw thanks for the video, it's brave of you to talk about this.
So sorry 😞 I know what this is like and I can relate to how you are feeling. Hopefully, you can get through this hard day and come out on the other side with a more positive outlook. I know that it feels impossible sometimes! Try keeping a gratitude journal and write down what you are grateful for each day. On your worst days go back and read your entries. Big hugs
This video is so valuable to help advocate and support those of us in the same position and also for educating others that are not in our position. Sending all the love and empathy in the world💙
Sweetie..I just came across your video...not much makes me cry anymore but you did. I sooo felt your pain and am sooo sorry you are going through this. I am old enough to be your mother... but I wasn't diagnosed with Fibro until my mid- 50's. Let me say..I was healthy when your age, I couldn't imagine living with this back when I was your age.. I have noticed that the ladies I have seen on the Fibro videos all have the same look, beautiful but super stressed, it can be seen in the eyes. I can say this...the only time I was this sick and distressed was when I went through chemo years ago. I thought the cancer had come back once again. It took doctor after doctor, tests after test to finally have a diagnosis. It brought some relief and then not so much. My mother had Fibro and I didn't really understand how much she hurt until then. Love you and hang in there
Oh wow, your own experiences and what you've managed to come through is no small feat! thank you. this video makes me cry if i watch it again. that day i was just so TIRED and fed up.its amazing how one day you just CANNOT deal. interesting you say about being pretty and super stressed. stress plays a huge factor in pain regulation. but its funny because the ongoing pain causes stress and tiredness AND acute stress can actually cause Fibro! (This has been proven time&time again). An awful lot of people I have spoken to have been through some truama before the onset of Fibro. In my case, it's suspected that the Fibro came about after an intense bout of a rare strain of Virus ( Flu)... Off I am on a tangent now! Thanks so much Jessie for this lovely comment and for listening to the video at all. It means a lot! Yvonne x0x0x0x
I am so sorry you are struggling with these things. I understand where you are coming from. I have Fibromyalgia and M.E. as well as several other health issues and I feel just as you do. The ups and downs of pain and fatigue are exhausting and crushing. I am lucky if I can get through the day and do one thing, errand, chore etc. along side my part-time job. I come home from work everyday and take a 2 hour nap, minimum, because I am so exhausted. The catch 22 of these illnesses is you will improve, but you don't know for how long it will last so you can never truly move forward. It can be absolutely heartbreaking. Just know that you have people who love and and people who want to listen to and support you. I know you don't know me, but my name is Emily, and I'd be happy to chat any time. Even if you just want to trade complaints.
Hey Emily, thanks for your comment hon. You're right about the 'getting better' part because its true! And yet random. Pain never fully gone of course, but I go through weeks at a time that can be at least 30% worse than others and there is literally NO pattern I can find. That's the worst...and the best too because those are the days you live for and gain hope from🙂
It’s debilitating and ongoing. Stay strong because I too suffer with chronic pain and fatigue. You are strong and will persevere. It’s a conundrum because exercise hurts but helps. Rest is good but fatigue doesn’t go away. Find peace and support. We are out there. 👍🙏
Just half way through your vlog and I just wanted to say I know how you feel. I’ve had fibromyalgia since I was 30...That’s 21 years now living with constant pain!! It’s a right pain in the butt!! It’s a very rare day that I’m pain free and when it happens I’m overjoyed but not for long with this shitty illness...I feel for you and I hope that one day we will find a cure for it and we can live our lives with joy and energy...❤️❤️❤️❤️
I’m so sorry you’re going through all this! I know how hard and lonely it is. On top of all of the fibromyalgia and arthritis and depression, my husband left and we’re divorced now, my kids are adults and they don’t get it and don’t want to try. It’s easier if they act as if I don’t exist. Which triggers all of the other stuff and makes it worse! I say the same thing all the time, “I’m so tired of all this “. So I really do understand! The only thing that helps me at all is praying. You’ll be in my prayers. I wish there was more I could do! Just know you’re not alone 💜🙏
I absolutely,absolutely have the same as you are describing. I am a 54 year old woman who feels all what you describe. I have arthritis,spondylolisthes and menopausal. I hold so so tight onto that little seed of strength in me! But like you at this moment that you are as you are filming I too get like this! Honestly. We really do struggle. It’s such a cruel life we survive daily!!! ❤ look to the sun and the sea and take a deep breath,xx.
The aching, burning, stiffness and tightness is very pathological. There Has to be an organism responsible for this. Crippled and bedbound for 20 years. I’m 63 and so is my husband. He does everything!!!!!! I’m so very fortunate.
First time I hear this from someone else, feel so related... But my family doesn't get it. They just judge me like I'm lazy. So its nice to hear that this "normal" with fibro.
I have the same illness I go through the same feelings every single day kind of nervous of how my life with this is going to look like in the future but I’m trying to keep strong and hopeful stay strong and think of other ways that you can help others. I wish you all the best my friend
I think that only people that have fibromyalgia can actually understand and relate to this. I feel for you, its so painful, exhausting and discouraging. Im so sorry 💛 and your not alone.
Hearing you putting in to words how we feel and what we have to deal with brought tears to my eyes too. However it felt partly as a relief that there are people who can understand. I felt such compassion flooding inside me for you and all the beautiful people that have to deal with chronic pain. If it's any consolation your videos your personality and voice are a real consolation. Therre should be a huge spa with massage therapists and puppies and lots of pillows and pain killers for us to have parties and chill. Lol. lots of love and healing hugs from greece
Thanks for sharing you speak for so many of us if I take a trip I hurt for a week afterwards just from the drive anything I do I hurt and I get chronic fatigue I hate it but we all have to keep the faith and know that God says In Heaven There Is No More Pain suffering or tears and we're to rejoice in all things I will keep you in my prayers God bless
I have it too, so fed up with it too, not sure I'll ever accept it. A good cry sometimes gives some relief to just let it out. I'm in bed right now, glad to hear your story. We're all in it together ❤
I feel your pain just taking a shower feels like you worked a 40 hr job with little rest. Hoping things are getting better or you're finding better ways to cope. Thanks for sharing
Hello. I wish I ahd seen this back when you posted it so that I could let you know that you are not alone. You are so right, the truth is that this struggle is REAL. It's so hard to want to do things that our bodies won't allow us to do. I recently lost my relationship with my exhusband, who has been the love of my life since we were 15. Fibromyalgia and Chronic Lyme Disease has robbed me of who I once was. He was patient for a long time, but unfortunately the struggles with my health broke him in January. I am trying to find a new normal, trying to heal emotionally, and trying to treat what my doctors believe is the root cause of my Fibro, which is Chronic Lyme Disease. Please don't ever feel badly about posting videos that are real and raw. You are sharing your reality, which helps others to know they are not alone. You helped me this morning! Thankyou for this!! I pray that you are managing the best ways that you can, and have also found a new normal. I hope you can find joy in this life. Thinking of you today!!
From Sunrise To Sunset You can only get Lyme Disease from a tick bite right? I'm having pretty much all the symptoms of Fibromyalgia.. but I haven't been diagnosed with anything yet.. I'm trying to figure out what's going on.
Snooze Z z z My heart goes out to you! I started out the same way, without a diagnosis, having no idea why I hurt so badly all over all of the time. I finally had a diagnosis at Mayo Clinic in 2012. In 2013 i found a good dr to treat it. Then in 2015 and 2016 I felt I was just feeling worse over time, and a friend suggested testing for lyme. I found a Lyme literate MD/ND and he ordered testing for all kinds of things, including lyme. The testing has a 70% false negative rate though. You can Google 'problems with lyme testing'. My tests revealed quite a few things...chronic Lyme disease, eppstein barr, several other viruses, and he thinks I have Babesia too (a tick borne coinfection). Often ticks carry more than just lyme, unfortunately. Lots of people don't recall a tick bite in their lives. I sure do though! I definitely don't want to leas you in the wrong direction, this has just been a brief description of my journey. I love this dr who has a wealth of info on his site, and maybe it will help educate ya a little on both fibro and lyme. He does sell supplements, but you can ignore that info. He went through fibro and lyme himself. I hope this helps! Message me anytime! rawlsmd.com/health-conditions
From Sunrise To Sunset Thanks for the info.. this is so hard for me. I cry all the time. It just came out of nowhere all of a sudden. Symptom after symptom after symptom.. I'm always scared, and I always feel alone.. i feel like I can't keep up with my family, friends, job etc. Doctors are having a hard time understanding my symptoms because I look normal and all of my tests have been normal so far. They're trying to push this anxiety thing on me when I know it's more to it than just that.. I know my body and I can just feel that something is wrong.
I completely understand everything your saying as I have suffered and was diagnosed in 2012 each day is a battle 😢 and I'm so over it and just want to be normal again😌Big hugs to you❤
Today is 25 of October 2018 when I’m watching this video and I’m laying in my bed because I’m in agony with pain and fed up with this stupid condition called fibromyalgia. I feel exactly like you and I understand you perfectly. It’s such a burden!
I know exactly how you feel, same here , and I’m opening my own hair dressing salon : I might just be crazy. 2 years ago I was so much worse that what I am today, but like you I crash and today I had to cancel someone and reschedule them as my fatigue just consumes me,, but we will defeat this somehow , I cried with you , not a bad thing either made me feel not so alone , keep strong and don’t be too hard on urself xxxxx
Yes I am completely with you. Venting helps a lot. I cannot get my body to keep up with either. I feel guilty turning friends and family down. Sucks. Nothing helps the fatigue or pain. But hope and love gets you through. Chin up!
I'm feeling a bit like this today.I have fibro and RA and I'm just admitting that I'm pissed about it today.I'm angry at how it has me so tired and the pain and how it interferes with my life. I'm tired of putting on the friendly face no matter what. I'll get past this moment but right now I'm so tired and I'm angry about it.I just want to cry and I haven't cried about it yet. I give myself permission to do so now. I love that you speak on just how frustrated you are.Rarely see that.This actually helped me so thank you and I hope today you are doing better as I know this vid was awhile ago.
You're so sweet to say that at the end of your message...god I really feel for you... especially putting up the brave face no matter what.its insane what you can hide until the pain is literally ROARING. I'm doing better than before but there are times I feel powerless because of the pain. Those days are much less at least, but I still have pain every day.. sending loads of love. I know how it is and sometimes it feels like you're in another world to everyone else. But people like us exist all around the world, you're not alone
@@YvesyM thank you. I hope all of us who know exactly what this is like have many more good days and know or come to know it's okay to say how we're really feeling when we need to.ROARING-that's a good word to describe it.
I feel so sorry for you, dear that you have to deal with fibro at such a young age, or ever for that matter. My wife has it, along with arthritis, degenerative bone disease, and diabetes. She is on all the normal medicines, and now is trying Humira. She works as an RN 3 12 Hour shifts a week, and she has to sleep almost the entire time she isn't working, and she is in constant pain. The thing that seems to help her as much as anything is her anxiety medicine. If you are not on it you should try. I've also heard that canabinol is good for it. She can't use it because of her profession, because of the risk of positive thc test. Other than that, we can only wish you days without pain, and pray for you, dear. Our hearts go out to you. Believe me, Mary knows your struggle, and she personally knows it is real. God bless you, child. ❤😕🥀 PS I just noticed you're in the Nederlanse. I have a friend who lives in Ede. Oh how I wish I could help. My heart breaks for you..
I've got Fibromyalgia with chronic pain syndrome and scoliosis with a cervical kyphosis also carpel tunnel so im with you on the pain hope your having a low pain day x
Please do not say sorry. I am glad that you shared your bad day. I am currently having one as well it was so nice to hear you speak the words I just couldn't put together. I don't want you to have bad days I wish, hope and pray that all your days are good ones. I fully understand not wanting to call any one, I post on a closed fibo group on facebook , so that my family wont worry about me. Some times you just need to vent and there is nothing wrong with that.
I saw this just now and my heart breaks for you and me. It feels good to know I’m not alone though! I hope you’ve been able to find some peace and better health too! I will look to see if you’ve made more videos. Thank you for sharing what was in your heart! It helped me so much too!!!
Thankyou for sharing, I am sorry you are at the point of enough all ready i know how that feels and its not nice ive not even has fibro a year and i have had enough. its a awful condition and nobody can help i get sick of popping pills to help with the pain. i wish u better hunx
Thank you thank you thank you for this video. You express what I am mostly unable to express, what I keep inside of. Me, what I do not let other people see... Mainly because I feel that if, only for once I would let go of pretending to be strong all the time, I would loose might fight against fibro.
I just saw this today and I so relate to everything you said..It’s such a messed up situation because there a price for every ounce of energy we use, it has to be paid back double or triple in rest, increased pain etc..
Then there’s the medications that don’t seem to work. I now just hide from the world.
I don’t mean to be a bummer. This disease has worn me out.
You are not alone in your feelings, we all just stop talking about it.
Easy yoga this is one of the most useful comments I think I have EVER got. You couldnt have described it better. You really couldn’t have said it better....this is a real help for me when I try to describe fibromyalgia to somebody else.i don’t really have a default answer if you get me.i find myself getting tongue-tied. I’ll remember what you said here because it sums things up perfectly. The repercussions and suffering following periods of the REAL living we might be able to ‘pull out of the bag’. Always followed by suffering...Thanks for your help. Take care xxx
That’s for your reply. Only another person with Fibromyalgia understands us. When I get up in the morning it takes 3 hours before I can move around. It’s so isolating. Doctors don’t know what we go through and don’t understand the muscle pain is real.
Even if I do yoga I’m hurting the next 2 days.
My thought are with you.
disagree with you on the Doctor thing. The majority Doctors DO believe the pain is real. Xx
I can relate in 100%
YvesyM you have every right to your own personal feelings
I don't think these kinds of videos are "not helpful to anyone". Seeing someone else vocalize the frustration and sadness I feel myself is therapeutic, because it makes me feel less alone and isolated. And even if you know you're better than before, you're still allowed to be sad about the pain you feel now. It's good to not be negative and it's good to be grateful for what you have, but you also have to be allowed to grieve and be sad and frustrated.
This is the first vlog I have ever seen with real, raw emotion. This hit me deeply today because after I woke up this morning I cried for 30 minutes because of the pain, frustration, and exhaustion of dealing with fibro. Just watching you be truly honest about your struggle made me feel less alone which helps a lot since I don't have family and my friends don't understand. I sincerely hope that you have gotten to a place of less frustration and pain. Thank you for sharing.
Currently having a really, REALLY, rough time with my fibro and this is exactly how I feel all the time
This means so much to me because now i dont feel alone with my pain 💙
Please be assured, I and others who care, don't look at this video as being negative -- it just tells us what you're going through, and people who care about you won't judge. Naturally I wish I could say some brilliant words that would solve the medical problem once and for all, so that you could put more energy into your goals rather than dealing with what's getting in the way of your goals. But I can only try to be supportive in some way. You've conquered so much! I hope that support makes you focus on the things you have achieved and can directly control and make it (somewhat) easier to bear what you can't control. You deserve praise and admiration for sharing what this far-from-perfect and far-from-fair world has thrown at you.
Aww such a comforting message you are so sweet ❤️
Took the words right out of my mouth.... I struggle daily with fibromyalgia and cfs.... it's so difficult to explain 💜
Thank you for sharing. I was in tears the whole video because of how much I can relate. Us fibro warriors must keep up the fight 👊💖
Shan P that’s right honey xxx 💕
I'm with you.
And I am glad you spoke.
It's hard to process this pain and exhaustion, let alone communicate how you feel.
I get so fatigued that sharing anything regarding my health sends me into silence.
I am one of many who can relate
with you.
I understand you deeply because I have fibromyalgia and ibs with chronic fatigue. You are representing thousands of people . Sweety, pace yourself and listen to your body.💜
I absolutely know how you feel. Fibromyalgia is just crushing at times. It's so hard to see everyone else around you have no problem getting through their days while you struggle to just do simple tasks. I am still trying to work through these issues myself so I can't offer much advice, but it is comforting to me to know other people feel the way I do so maybe that will be comforting to you as well. It is so hard but you are not alone.
isnt it crazy how many sufferers there are?it blows my mind...it is so goddam frustrating to know how pain control is poor...im sorry youre in a similar position Ali :( Thank you for commenting btw
I've had a stroke. The right side is damaged, typing left handed. Had heart surgery and this mean menacing pain 1Corinthians 10:13 no were not alone. I can't cry anymore, no more tears. I refuse opioid because people are dropping like flies. I wanna live even if it hurts.
Oh my goodness you are feeling exactly what I feel only I have not had the strength to say it out loud! You are my hero!!! I have days where I feel like I just cannot go on. The pain and fatigue are crushing! I was just diagnosed last week after what seems like a lifetime of fatigue and strange symptoms that no one could explain . I was told it was just anxiety and depression . YES I was depressed because my body had become this horrible, uncomfortable, painful, anxious alien. I felt like a prisoner in my home and could not enjoy the full life I was used to. I was scared and NOBODY would take me seriously not even my husband who just became burned out on all my physical problems ! I had one friend tell me " no one could possibly have all the physical problems you have". I stopped talking to friends about my health because they didn't understand and they got tired of hearing me say how bad I felt and how scared I was. I feel alone and isolated, I hardly ever leave my house because things like shopping with my daughter or riding in a car for too long to go on a trip left me feeling like crap. I would have pain for days afterwards. I cannot exercise or drive a car because it leaves my body in pain. I can really relate to what you are dealing with!! I also struggle with peripheral neuropathy which sometimes accompanies fibro...it is awful ! The burning, pins and needles and shooting nerve pain is sometimes so difficult to deal with. I am only taking a small dose of gabapentin because I am afraid to take too much medicine...my body always has terrible side effects from drugs. My new neurologist prescribed Effexor XR for my pain and depression at a very low dose. I have yet to start it because I worry about it making me feel even worse than I already do! I know there are so many people out there who suffer from other diseases that are so much worse than I am and I feel VERY guilty for complaining about my situation. Sometimes it just helps to know that there is someone out there listening who TRULY understands and who can offer a little encouragement and strength. I see a therapist but she has not really been as helpful as I had hoped and the cost is getting prohibitive. So, thank you for being honest and for posting your many informative, caring and helpful videos! You will never know how much this video helped me . I feel like you have gotten into my mind and expressed exactly how I feel!! I would like to know how you avoid weight gain from all the meds when you cannot partake in a regular exercise routine. I worry that all these meds I may have to take will make me gain too much weight which can put me at risk for even more pain and other health problems. I think living with this illness is two sided, the docs say exercise but they have no clue how much pain that will create. Thanks again for all you do for us fibro sufferers. I wish for you many better days ahead and a sense of hope for the future!!
It is so messed up that people had a hard time believing you. I had a period where this happened,at my WORST. My parents and GP believed me. But in the beginning (when it was off the scale bad) I had a consultant who told me it was because of my weight and that if I gained weight I wouldnt have pain etc etc. IT NEARLY DROVE ME CRAZY. Eventually I was taken seriously. But the stress of not being taken seriously gave me such a complex and made me feel so isolated. To this day I am suspicious that people dont believe me and that was one reason why I never really talked about fibro to people in my day to day life for fear of not being believed. I couldn't cope with that stress again. It was close to a nightmare. So having your husband question you must have been horrendous. Meds: I rarely look at leaflets or Google things when I'm trialing them. I feel if side-effects are bad enough I would know from my body and not be looking out for symptoms if you get me.(omg my shoulders and neck writing this are aching!!).Weight gain is similar. The only way these drugs can make you gain weight is if your appetite is increased and you eat more. Practical measures are most important and thats why my weight hasn't really responded to medications that could increase appetite. Portion control, pre-planning etc is what I'm more about, you know?
@Albert Jackson dude you have NO idea...stfu!
hi I feel your pain I have this ghastly condition and I struggle with it too everyday x I hope you find relief one day 😢 ☺️
I have this horrible thing too,it can't be seen so you must be making it up.The fatigue really bad for me atm
Don't cry I have the same condition it's hard no one understand the pain just try to take each step at time bless u
I'm laying here in tears dealing with it myself😞 indescribable pain
Cara Gunnels please see a doctor for pain meds so you can feel more comfortable at least part of the time. I got sent to one and have been working hard with him to find the right extended relief pill and break thru pain pill which I need to take right now because I won't make it to the extended relief pain pill time yet. I have a few hours to wait to take it yet and I'm hurting. Back of neck shoulders my arms and hands and fingers. Even the bottom of my feet and my hips hurt. Sometimes it's like fire through my whole body. It's definitely fire throughout my body without even touching that area when I had nothing to take for it so I took Ibuprofen years ago and so much my ears rang and my stomach hurt like it had an ulcer from Ibuprofen and I would even get hangover headaches from the Ibuprofen so the doctor started me on some smaller pain med and as this disease gets worse I know from having it many years now, he sent me to a pain specialist. Finally I had some better days and my stomach ulcer healed up. Anti-inflammatory meds help too but then you have to take a pill for your stomach first like omeprazole to keep from getting a painfully sore stomach that could bleed.
Cara Gunnels I know exactly how you feel I deal with it every day the pain is so cruciate in you alright what you said about the medication nothing really works I'm under the pain specialist at The Walton Centre in Liverpool but there are only there to help you deal with the pain not to take it away I'm in a wheelchair now because I can't walk far at all you feel all alone and isolated with the pain I've had fibromyalgia now for 3 years I only hope you find a cure for this horrible disease living with this pain just drags you down every day so I know what you're going through as I'm writing this I have tears in my eyes because of the pain it's just nice to know that there's somebody out there that suffers the same condition as you and it's just nice to talk to somebody because it's only people like us know what it's like going through pain every day god bless you
Me too
My prayers for you all. My wife deals with it as well. Anything to lower stress level helps a lot. I pray for a cure for you all, and until then comfort.
My thoughts and prayers go out to all of you, and Yvonne, making this video was such a blessing to all the people who have watched it. My story is in another comment below, and I pray for all of you that they soon find a cure, or at least treatment that can truly ease your suffering. Good bless you all.
When I got diagnosed my whole world changed. I no longer wished to "work hard until retirement" I won't be able to enjoy it. I drove myself across the country to have a 'last major grand adventure' before I'm literally stuck at home again. It wrecked my marriage sanity and hope for a decent future. All I can do is catch the waves of pain and wait for a decent day to make moves. At this point I feel like the fibro will ultimately kill me. Unless I'm misdiagnosed but even then, Regardless, we all die anyways, I just wanna enjoy the time I have left even if it's through poverty. Thank you for sharing your heartbreak, I certainly feel it too. Running out of spoons when your mind can finally push through the fog is disappointing to say the least. This shit is NOT easy! You are definitely not alone either.
This was really helpful for me, too. I feel so alone sometimes and...there are times where I can't imagine carrying on like this anymore. Everything you said, the times you teared up, I could relate so much to it. I can imagine the emotional toll it must've take on you to be so open about what you deal with, but I really hope you continue to makes vids on this topic. I haven't seen any other youtuber who's fibro story spoke to my heart the way your's did. Thank you.
First of all, you have every right to complain. Secondly, your videos have helped me so much. I was diagnosed was fibromyalgia in 1994. I've had seven spine surgeries, and I kept thinking that all of this pain was because of my spine. Now I realize that it's both. At the most, I get out of the house once a month for a little while. I haven't been able to read a book, and I kept thinking it was because of my spine pain. When I listen to you, I understand so much more about myself. I have a seven children, and nine grandchildren. I can't do anything with them, It's actually in bed and talk with them. I'm really happy that we have a lot of giggle time... That always boosts my mood and my pain level. After 25 years, I still feel guilty that I can participate in family activities. All the parties come to our house, because I have to lay down so much... Then I feel terrible because I haven't cleaned the house. I used to be here really giving person, now I feel like I am nothing to give... I did talk to my adult kids about this, and they told me that just listening to them and the grandkids help them a lot, in the past, I was always too busy to be a good listener. My teenage granddaughter told me that I did the best advice when it comes to relationships. I always pray that God will put somebody in my life, that I can help, and it's usually somebody online. I will keep you in my prayers. I've been disabled since 1988, really happy to have my iPad. Again, thank you for doing your videos, you have helped me so much! So much would you say is as if you were talking right to me, Or about me. Thank you, you have touched my life
Exactly what I needed. I was diagnosed with ME and fibromyalgia last week. Although I know I’m lucky since it only took a year to get diagnosis, it’s still the pits that these are life long conditions in which everyone has to find out what works for them and include major lifestyle changes. To complicate matters, since I’ve had to greatly reduce my exercising, it’s effected my mental health, my gastroparesis and my eating disorders are resurfacing. I watch your videos because they are informative, helpful, friendly, relatable and now I know that it is okay to cry and be upset. Everyone needs mini meltdown days, it’s how we cope. Thanks for your honest videos.
Thank you so much for your reply! Today is turning out to be one of those days where I cannot seem to find any hope. My neuropathy symptoms seem to be getting worse as it is moving up into my legs not just in my feet. The pain is bearable but this type of discomfort always makes me feel terrified that I am going to become disabled and I wallow in a state of fear and depression. I am supposed to go to a family function tonight but really just don't want to, not because of the pain but because I find myself feeling so envious of their good health and the active, satisfying lives they enjoy! I know this is the worst thing I can do for my mental health but I cannot seem to help myself. I struggle with trying to act "normal" when I actually feel like an outsider and so very different from everyone I know. I am an older woman(64) and this recent diagnosis and the accompanying symptoms have left me feeling useless and that my life is over. I cannot travel or shop or enjoy social gathering or exercise....you name it , I probably can't do it!! My life has been totally squelched! I hate being so negative and depressing but I see no long term solutions, no light at the end of the tunnel and little hope for regaining a productive life!! I feel guilty saying all of this and will probably regret posting this because it sounds so bad....I guess I am having a day like the one you posted about(above). Thanks for your suggestions about walking, I was able to walk 3 miles a day before this happened . Now I am lucky to do 10-20 minutes every once in a while! There are days when I feel like there is no use in trying, no hope! Thanks for letting me rant and vent. I apologise for the blatant negativity ! Maybe tomorrow will be better! By the way- I love your accent and you ARE helping other people ! You have helped me just by allowing me the chance to be honest...even if it isn't pretty!
Hey Becky. You don't need to be sorry for being negative -these feelings are reality for many of us and it can hit harder at times. my mum has a lot of nerve pain and degeneratie disease in her spine etc.i know what chronic pain does to her, though she generally puts up her brightside. all i can say is that you hvae to start from scratch.with the walking etc and working on keeping the rest of your body healthy. SO important. that envy you describe,again, is so understandable. from time to time i feel like such an outsider looking at girls my age have such active lives and being able to keep up day after day after day without suffering consequences. i think you owe it to yourself to practice self-compassion as much as possible. and to talk about these feelings with your family/friends or someone special. chronic pain has huge pyschological implications and to be honest i feel im only REALLY learning these past few years. there are so many constraints.and our behaviour and thoughts are so linked...its important we pick things apart as much as we can and keep working on understanding ourselves and our needs. falling in to that negative mode is so tempting and when the pain DOES become unbearable i dont think its a bad thing we indulge in our darkest thoughts.but NOT ofr too long, you know? but we're only human.and we're allowed to feel bound by disability, we're allowed to feel dark about things because it IS dark. had a tough day yesterday. was low on energy,pain was high, and i found it so difficult to stay watching a football game with my boyfriend. i hardly squirmed because i didnt want him to be conscious of my pain -i wanted him to enjoy the game in the pub with a few drinks and have HIM feel no constraints. by the end of the game i was in so much pain, quiet and I just thought: what would my life be like without pain. IMAGINE what I could do! Who I could be! Where I could go!
I have this huge sense of spirit and freedom, especially going through a really bad eating disorder in the past. And have so many desires and wants. On the better days I allow myself get carried away. Because on the worse days all my hopes and aspirations are entirely quenched by the reality of having no healthy vessel to explore in. Some days it just kills me,kills my spirit. And one of the worst parts is nobody knowing and being spurred on,on better days,by friends and people who dont know my situation well. I build my hopes up,despite KNOWING many of these can't be fulfilled in the way I want to fulfill them and theres no point in being realistic all the time because reality is a hard thing to face 24 hours a day!
We need to maximise the slightly better days.. If you could get back walking it would be BRILLIANT. Even 10 mins a day,despite aggravating your pain. It will do good for the rest of your body that suffers inactivity,poor strength etc from neuropathy..
GOD I rambled here! Sorry! I really hope you're not alone -never! There are millions like us. And many of us look and appear 100% normal! Sending you ALL the best and a big giant hug :) Yvonne xx
YvesyM You are so wise Yvonne! I only wish I had someone in my life that I could talk to that I could be honest with. My friends don't seem to want to talk about it, and they cannot understand since they have no idea how this feels. As I said my husband would just rather not hear it. You are so right about the psychological toll this has on a person....my depression and anxiety have increased greatly over the last year. I have taken your great advice and started trying to walk some every day. It doesn't always go as I would like but I feel it can hopefully at least help my depression some and maybe boost my self esteem a little too. Thank you again for taking the time to respond to my posts and for CARING! It means so much to me!
Becky Kueng 💘, ❤
Early 50s and male. Was diagnosed this summer with fibromyalgia. My Mom has suffered with it for decades. I’m have days where it can’t imagine, and frankly don’t want to, live with this pain, fatigue and fog for years. Thank you for you honesty. You’re a lovely young lady and that accent is awesome.
its good to get representation from the male side so thanks for commenting. god its so tough..my mum has it too, along with other chronic pain conditions. i have been better overall over the past couple of years. not pain-free but muuuch better. i feel like thats possible for everyone if its been like that for me. so dont lose hope altogether, though i know the toll it takes mentally...sending best wishes to you and to your mom too
My Heart Goes Out To You! I am going through everything you are but I am 58 years old. I have lived with this for many years. However, my research told me that it usually hits in 40's and 50's. I had no idea it could attack someone so young. Your video made me cry. As, obviously, I can relate. But again, I can't relate. I lived my life, married, had a child, etc. So I can't even imagine feeling that way at your age. I can however offer advise on what has helped me. Most people may not afford to, but going to a warm climate and an environment controlled by you
where you are travelling alone so that you can do what you want, when you want, and how you want without worrying about the feelings of companion travellers. It is soooo cheap these days. If you go on airbnb and find a nice studio apt (especially in Mexico) you can stay a month, including flight/rent/food/etc for $1200 CANADIAN!!! Just get away sweetheart. You cannot imagine how simply floating in wonderful salt waters of the Caribbean can do for your body. The daily sunlight is also a necessity for our minds and bodies. Another very helpful remedy I have found is Marijuana. I went through my whole life never touching it. Now, is another miracle for me. If you do the research, there are "day time" strains of marijuana that actually help you get out of be and "Do Things". But after "doing things" we pay with pain later. But that's okay, because we also have "night time" strains that truly help with pain, sleep, anxiety, and I could go on. Did I mention that You can't get cancer from smoking marijuana. Or you could try CBD which is low in "the high" thc content and works only on pain. I hope you take my advise. Or at least consider it.
I CAN SAY THIS WITH %100 TRUE KNOWLEDGE FROM ALL MY RESEARCH AND EXPERIENCE WE TEND TO THINK OF OTHERS AND HOW IT EFFECTS THEM AND FORGET HOW TO TAKE CARE OF OURSELVES. So take care of yourself my dear. And God Bless.
I hear you explaining "me" i hate feeling alone and so worthless, diagnosed 30+ yrs ago with fibro, lupus, 4 otger autoimmune diseases/ syndroms + 2 hianal hernias, heart attack, pancrase disease and . . . I am so F-ing tired of Always have to adjust over and over to these diseases, not to mention trying to explain to people really well how it feels, thank god for you and others who make videos so i can share with family and friends, in the words that i cant come up with myself while trying to get people to " see" and "hear" me, you and so so way to many others. Im so tired of sitting here wanting from the depth of my soul to get up and be productive, but always seem to spend most of my days now crying, even 3yrs ago i could manage mind over pain @ 50% of the time working through the pain, yes paying for it latter, however i felt ok woth that knowing " i did . . . " and feeling good about myself, if even for a short time. Bit now, showering is out of reach most days, tring to get ready for well anything is crazy crazy lots of planning, rest, mental and physical struggles, and stopping to cry or lay down in pain every 15mins for 30mins so i can get up and continue for an9ther 10 or 15 mins before i break down again, becomes so toxic to my selfworth and mental state. I think it was Pinochio that said " i just want to be a real boy" i use a version of tjis ALOT " i just wanna be a real person.
So Sweetie i understand and youre not alone, and because of the videos you and others make, im not alone and knowing this does help ! Thank you and you will be in my prayers. .
I’ve been binge watching your videos and my goodness! It’s like having a twin in my health, feelings, and emotions! You’ve voiced what I’ve been feeling and experiencing since I was diagnosed with fibromyalgia, although I don’t think I could ever say it as eloquently as you did. ❤️
Please know that you’re not alone and that there are many people out there who know what you are experiencing. Your videos have been so very helpful to me and I look forward to watching more! 👍
Me, too. I drove 45 min to get to my rheumatologist appointment and cried the entire way. I have some other symptoms that don’t seem to be from fibromyalgia. I have been seeing doctor after doctor and having test after test and everything comes up negative. Some days I want to just stop searching and fighting for answers. But I guess we are warriors. We get knocked down but we rise up again with the encouragement and support from friends, family, other warriors and the hope that just maybe we will find relief or an answer.
Thank you for being honest and transparent with us. It is helpful to others when we are. If you are always “together” and I am not, I will think that I am such a failure at this thing and feel worse about myself. You are such a dear and this old warrior appreciates you.
Thank you for opening up and sharing how you are feeling and what you are going through. As someone who has suffered for years with chronic pain, and has recently been diagnosed with fibromyalgia, I have empathy for what you are going through. I also feel understood. It’s hard to explain the feeling to someone who does not have chronic pain and watching your video made me feel understood.
This was a tough watch. I was diagnosed with M.E and fibromyalgia ten years ago. I know exactly what you are going through and the frustration you feel. I was a fit and healthy 46yr old before I was struck down , always on the go. I can just about look after myself now and that's all. I no longer recognise myself from the person I used to be. It has stolen my life and all but broken me at times. I now feel almost useless but totally powerless as my body just feels broken , nothing works properly. I feel time is running out for me as regards the medical profession finding a cure but I pray to God they will find a cure for future generations and younger people like yourself. With long covid now a thing and fibro and M.E being very similar illnesses I think there is every chance the medical profession will be given more funding to find a possible cure. We can only hope. Try to stay strong , you come across as a lovely genuine person who deserves a full life.
I think this is good to vent and express yourself. Having chronic pain and illnesses can be devastating to your mental stability. It's good to talk about this to everyone and it's easier to talk with people you don't know because sometimes it's easier to talk to strangers. You are brave and you are strong. It's tough but just take time and breathe literally. I have been dealing with chronic pain for 6 months now I have not been diagnosed with Fibro because all test have come back normal so my doc thinks it's sleep apnea etc...I have learned it takes years for people to realize what it is. I have a lot of symptoms that are common with fibro it;s frustrating I want to give up but I keep moving. Your a lovely person...
hopefully you wont be waiting as long for a diagnosis as other people.keep fighting for yourself ;)
Thankyou for being so vulnerable. You deserve to express yourself. It helps me to here you when dealing with this diseases. I need to here I'm not alone so Thank you.
I’ve lived w/ fibromyalgia for 28 years now. First it was a few bad days and now life is a few good days. Only recently I’ve learned that there is a link between fibro and lack of level 4 sleep. Not surprising - I can’t remember when I enjoyed that kind of deep sleep. Now, at 80 years young I’m waiting for my CPAP machine and wandering if it will give me some relief. Thank you for sharing what many of us can’t put into words.
i hope the c-pap helps with fatigue and your sleep quality. fingers crossed!
I feel like I'm alone inside myself with mine
im sorry you're feeling alone hon.i have had times,very recently, where I feel very alone too. enduring suffering, in silence, is a lonely AND isolating thing.all I can offer to you is that you are not alone and that so many people are suffering and fighting alongside. xxx
thanku so much it makes me feel good to see someone speak out about ot
sending a tonne of gentle hugs your way. this day last summer was just rock-bottom with the exhaustion and pain. it is incredible what we ACTUALLY endure and I think all we can do is focus on the wealth of strength we have for what we put up with💪🏼
yes ty
Blue Sky yep.
I am right here with you. I pray a lot. I think we have to cry and feel sorry for ourselves every now and then. This disease is truly from the devil.....he knows we are warriors, wants to hinder us.
bless you xx
I am really pleased you are using this platform to let it all out. Yes it sucks, we all have this days and I can only admire your courage to voice it all out. I am crying with you feeling the same pain. Be strong, your soul is so pure and able to see through it. A massive hug to you and praying for you and others who are going through the same struggle ❤🤗
Aw wow this is the sweetest message🫶 I really feel for you. Drop me a msg any time X
Thank you for being so honest. Exactly how I feel. You are great...
I very rarely comment on videos, but I think you should know your video is so incredibly helpful for other people going through the same thing. I feel the exact same way myself, and I wish with all my heart that you didn't have to.
Thank you,so much Fiona for the love. I'm sorry you know what it's like -it sucks so badly and it's so hard to explain to somebody who hasn't suffered prolonged pain &fatigue. I'm here if you ever Wana message me😘Xxx take care
I feel the same frustrations, exhaustion and pains. It's hard not be abble to do what we want because of our body. Sometimes things have to be tell and you do the good choice. You say things that many of us don't have the courage to say because we feel ashamed or misunderstood or we don't want to be negative or weak. Thanks you. You're not alone, you're strong, you're beautifull and very positive. (sorry if i made mistakes, i'm french and i don't speak english as well as i want, i hope you understand the message). You're doing an amazing job. Bye
I'm sorry for what you are going through. I know exactly how you feel. You want to give of your self and want to give so much but the pain gets in the way. I see many people around me talking about their jobs and I want to be able to do the same thing but I can't. I know that if I go out there and work it will only add to the pain and problems I already have. Some don't even know the extent because they are not in our shoes. We are not looking for anyone to feel sorry for us but just want people to understand and know how we feel. To have sympathy and empathy as to how we feel. Keep going you have gotten this far, I know it's hard but don't give up.
I'm glad I came across this video because it truly captures the frustration and the hopelessness of fibromyalgia. It was not depressing at all. Just like you my activities have all but ground to a halt and I spend most of free time lying in bed. Christmas into New Year this year I got the cold and it was the worst pain I ever experienced in my life. I hope you continue to make more videos for fellow warriors.
Thank you so much for your honesty. We need to be more vocal and more honest about our condition so that people will take us more seriously.
It's very good that you have support . Fibromyalgia started when i was hit in a car accident. You are not alone , with research they've found truth and knowledge as doctors themselves have become affected with Fibromyalgia some unable to work . Much more happiness and love to come our way.
I’m so sorry sweetie that you are suffering. I can so relate. It’s alright to feel the way you do. Sometimes we just need to vent and that’s okay. Sending prayers, hugs and love your way.
I could feel your pain and fatigue in this video. You emoted all of my feelings, even the tears. I want my life back.
sending you a shit tonne of love
I feel that as a suffer of this condition, we all understand as it is much harder for most people who can't feel our pain to truly understand. I am going on 11 years, and it has only gotten worse, but I will not let it take me down. I will say this: through the day the good lord brings me home, I will cherish that I will no longer fight the pain and will finally have the rest I have prayed for, and he is my reason I refuse to give up.
I am hoping that you are doing better now. I also have Fibromyalgia and feel the same frustration about having the exhausting pain so much and every day. It is hard and sounds like you have great support don’t forget that and use that so you don’t have to take it on by yourself..it’s to much for one person to take.. best of luck and keep fighting!
Thoughts and Prayers to ya, I was diagnosed with Fibromyalgia in 2010.
The struggle is real, right now just watching the video on my iPhone my wrist and elbows are killing me, keep your head up!!
Cognitive behavioral good thoughts from now on Hun, remember, the more we’re down, the more we hurt, God Bless!! 🙏🏻❤️
Yvonne, thank you for sharing. I know what you mean by not wanting to share with people close to you. I tend to bottle up everything too but it's good at least here online some of us understand. My lupus symptoms, when they were the most severe for 2 years were similar to severe fibromyalgia, except maybe my fatigue was worst than the pain, you might be the other way around? I don't know. But similar, I couldn't write or use a computer mouse more then ten minutes or my wrist would be intensely painful. Constant neck pain was a killer two and all my joints and leg muscles burned. It's hard because you can't escape your own body. I couldn't stand for more than a few minutes... I don't know how many times I had to sit on the floor in random places just because my body was aching. You are truly a hero Yvonne. Thank you for talking about these things and spreading more awareness because it affects a lot of other fibromyalgia sufferers and even other people with other illnesses with severe chronic pain can relate also. I don't mind you using this platform to share :) whatever helps you best. Don't know what else to stay, I wish I knew the answer and though it's frustrating that life isn't how it could be right now, you are still Yvonne and that is who people love, not what you do or what you achieve. Though we all know if it wasn't for your body and health you would be doing so much more but you never know what could happen over the next months or year, have you heard any stories of people getting better for a while? Like go in remission for a period of time? Lots of hugs to you, better days are ahead for you I believe :) xx
Dani! First off I want to thank you to bits for the time &care you took to write this .it sounds like you really have a good idea of how bad Fibro can get and how the constantness of fatigue/pain wears you down emotionally and physically...it's strange but I have met other people with Fibromyalgia who have a past history of eating disorder...I wonder if there's a link...
The fatigue is often as disabling as the pain. I find with pain I move through it, I don't respond to it for as long as I can possibly get away with because I know my muscles aren't inflamed and there isn't a disease pathology....so a lot of the time it is mind over matter with me. Which of course has downsides 😕 I am more sore today but far less fatigued and coping better again (thank god)! Messages on here really helped. Honestly thank you for the lovely message and good wishes. It has reminded me of all the wonderful GOOD people there are in this world 🙂 and we totally need to work on 'offloading' on people close to us....👊🏼👊🏼👊🏼
+YvesyM It's interesting and I would not be surprised that an eating disorder could cause so much damage to the body that someone could possibly develop fibromyalgia, who knows! My autoimmune disease started a year after I was fully weight restored, but it still could have played a part in me developing Lupus. Sincerely hope you will have more good days than bad this week 😊 xx
Crazily Dani believe it or not it is proven that people who have suffered trauma often acquire Fibromyalgia afterwards. Totally physiologically speaking. The region of the brain that interprets pain is in the same area that regulates emotions etc. Under extreme stress that part of the brain becomes hyper-sensitive and I have been told that this sensitivity never switches off as it should do. The brain consequently has false interpretations of pain therefore. That's why it is classified as a Central Nervous System Disorder..Interesting indeed. Lupus and Fibro can come hand in hand..Thank goodness neither of us have both! It could always be worse I guess!!! Listen, have a good rest of the week yourself and talk again soon :) Xx
Crazily Dani I also love what you said. Yes, Yvonne, you really did us a big favor in your videos to explain it so well and exact so now for ppl who message. I can just send your talk to them and say to them that this is how I feel and not have to tire myself out or get interrupted repeatedly for each single person. It's tiresome to type as well after a while.
Crazily Dani I also love what you said. Yes, Yvonne, you really did us a big favor in your videos to explain it so well and exact so now for ppl who message. I can just send your talk to them and say to them that this is how I feel and not have to tire myself out or get interrupted repeatedly for each single person. It's tiresome to type as well after a while. It's good for them to hear someone else has the same thing and I'm not making it up.
i really feel for you. I relate so much. It's so disheartening for even the tiniest things that should be mundane and taken for granted to be so exhausting and effortful in every way. And being exhausted and in pain all the time makes everything mentally harder as well. It feels so unfair to have made such an effort and a change with your eating disorder only for your body to feel like shite still. I so so relate. And also to feeling bursting to do so many things and my body is just like lol no. I wish i knew what to say that would be comforting. Just know you're not alone and hold onto hope because we really never do know what is around the next corner. And don't ever feel bad for venting on here.
Thank you Yvesy. I can totally relate. Negative or not, it's what it is. Your honesty is helpful today while I struggle with the pain and utter exhaustion. Seeing your video, I don't feel as alone as I felt before watching. God bless you Yvesy. Thank you.
And God Bless *you* XxXx
I’m dealing with this all today. I’m very thankful for your video
Jessica G i hope you have brighter days soon hon xxx
I find these videos really inspiring and informative and makes me understand it more. It also makes me realise what I am going through every day is real and I am not making it up. It’s not so called “stress” it’s real physical condition.
it's as real as you and me! xx
Thank you thank you thank you thank you thank you thank you thank you for posting. Thank you for sharing.
Shoot. Now I am not sure what account is mine or my sons. But anyway hang in there.
ha ha, all good Robert (hope its robert!). Thank you for this lovely comment!! :) :) Hope your son wont die knowing youre in his account :P
Although I do not suffer with Fibro, I do live in constant pain every minute of my awake life. Thank you for this video. It is exactly how all of us in chronic pain feel. I have ended up being by myself completely because I feel I have taken so much from others. Please know that I feel it and I love you. You are special and we need you with us.
Never stop talking and don’t you dare feel bad about it. This needs to be talked about. We need to talk this. You are not alone. We need each other to listen, and to prop each other up on the days we feel like we just can’t go on. And those days are many. Gentle hugs to you my friend. I hear you and will be thinking about you every day from here on. We are here!! Xoxo
I'm so sorry that you are suffering. I can relate and I know it's painful and frustrating. Praying for you 🙏🏼
Hope you feel better , my girlfriend goes through these same feelings of being tired and you helped me to understand her pain so I pray for you to , too feel better
Wow Yvonne I'm a male and watching this made me have a 😥 you are for a start very brave to talk about your pain because I think most people don't know how to describe it I for 1 don't know how to, there is so many different pains around the body, so many different feelings cessations etc glad I've came on here it's like a ray of light for me and probably so many others thanks Yvonne hope you're feeling ok today thanks mark 👍🏻🙂
I will be 70 in a couple of mo.s and I have always had this to some degree, but never had much energy even as a child. People just think you are lazy. There is so much to say but I'll give the short version. Everything you have said here is exactly how I feel, missing out on things, not being able to plan things, and travel is hell on me. I had a hysterectomy it just really set things off for me and I feel like a dagger has been plunged thru my private parts, unbelievable pain, doctors have been useless, except pain doctor. I finally found out what is at the bottom of most of my pain, I had to diagnose myself, but it has taken yrs to do that. This condition that I have, which I am going to tell you about might help some people. I have hyper mobility in most of my joints (double jointed) puts extreme pressure on your ligaments which are weak, causing inflammation. My Rheumatologist (sp?) told me they have found that people that have hyper mobility can cause fibro. I went on to find that the cause is a connective tissue disorder Ehlers-Danlos. Finding this out made sense of all my problems which are many, severe memory problems, brain fog. My memory has always been bad but as I've gotten older is really bad. This condition is a genetic disorder and most doctors don't have a clue. I've been in pain mgnt for almost 20 yrs It is a bad time to need pain meds with all the problems that are going on with pain meds. I have to say the meds saved me with my job, couldn't have worked without them. I have flat feet which kills me to stand any length of time. I started my search with my blood type being RH negative, which I believe is connected to a lot of my problems. I am also ADD and take a medication for that it gives me some energy, and the pain meds can also help with the lack of energy. Please be brutally honest with a pain doc let the tears fall. You need to explain to him/her your pain as the worst day you have experienced. You are young you need to get some help, and you most likely are going to have to do a lot of your own research. It took me 20 yrs to figure out what was wrong with me, and there is a lot more symptoms, and problems but I've already been talking enough. You are wrong about this video not being helpful, It is helpful to many. The support from my internet friends kept me going and I learned a lot from the people that had the same problems. Just keep on trying to learn about your condition, keep records of your pain and other symptoms, and when you go to the doctors appts keep your records from any labs, put them in a notebook. Take care and I'll check back in to see if you've gotten help. I think if you reply to this it will notify me. Best to all that suffer with this.
I am keeping you in my prayers sweetheart. Sending some love your way ❤️❤️❤️. It breaks my heart to see you in pain feeling sad.
anyone who has Fibro knows our struggle and the way your feeling, Fibro is a horrible thing to have and its not easy that's why we are called fighters and warriors, sometimes we all feel defeated but that's ok so long as we get back up when we can and fight some more, never feel bad for feeling sorry for yourself some times cause sometimes we do have them days were we think why me what did I do to deserve this and its ok, because its so hard to live with believe me I know I'm in my lounge chair atm in so much pain throughout my body that I want to cry, but I have to keep fighting and eventually it will ease a little it wont go away but it will ease, I hope you get some relief and not so many bad days ahead xo
I don't know if it helps, but I'm sending so much love to you. I hope your fibromyalgia is better than it was on this day - it's a horrible illness, and of course, because it's invisible, and because you are young and pretty - people don't get how much you struggle. Sending so much love and so many gentle hugs xxxxxxxxxxxx
YvesyM, Hello sweet lady..........I’m much older than you, but I know how you feel, I truly do. All us fellow fibromyalgia/chronic fatigue syndrome and thyroid sufferers or whatever illness you have know what you are going through. It’s so cruel & the tiredness & fatigue & pain take us to a place where we feel so low. But you will find this inner strength that will carry you through. You are beautiful & I want you to try to stay strong. It’s not easy, it’s agony when we miss out on so much & can never truly do what we want, but know that we are watching & listening to you & are wishing you the very best & much love🧚🏻♀️x
I feel the same here, you described everything I'm going through, I am just so tired of dealing with this, I really feel so depress everyday, I try to be positive but it's really hard. I don't have the strength to fight the pain, missing my active lifestyle, now I just lay in bed and cry, can't even hold a glass of water and takes a lot just to brush my teeth. I just want to close my eyes and not wake up anymore. Btw thanks for the video, it's brave of you to talk about this.
sending love
So sorry 😞 I know what this is like and I can relate to how you are feeling. Hopefully, you can get through this hard day and come out on the other side with a more positive outlook. I know that it feels impossible sometimes! Try keeping a gratitude journal and write down what you are grateful for each day. On your worst days go back and read your entries. Big hugs
Bless your heart. I feel you every pain.
This video is so valuable to help advocate and support those of us in the same position and also for educating others that are not in our position. Sending all the love and empathy in the world💙
Right back at you Nico💕
Sweetie..I just came across your video...not much makes me cry anymore but you did. I sooo felt your pain and am sooo sorry you are going through this. I am old enough to be your mother... but I wasn't diagnosed with Fibro until my mid- 50's. Let me say..I was healthy when your age, I couldn't imagine living with this back when I was your age.. I have noticed that the ladies I have seen on the Fibro videos all have the same look, beautiful but super stressed, it can be seen in the eyes. I can say this...the only time I was this sick and distressed was when I went through chemo years ago. I thought the cancer had come back once again. It took doctor after doctor, tests after test to finally have a diagnosis. It brought some relief and then not so much. My mother had Fibro and I didn't really understand how much she hurt until then. Love you and hang in there
Oh wow, your own experiences and what you've managed to come through is no small feat! thank you. this video makes me cry if i watch it again. that day i was just so TIRED and fed up.its amazing how one day you just CANNOT deal. interesting you say about being pretty and super stressed. stress plays a huge factor in pain regulation. but its funny because the ongoing pain causes stress and tiredness AND acute stress can actually cause Fibro! (This has been proven time&time again). An awful lot of people I have spoken to have been through some truama before the onset of Fibro. In my case, it's suspected that the Fibro came about after an intense bout of a rare strain of Virus ( Flu)... Off I am on a tangent now! Thanks so much Jessie for this lovely comment and for listening to the video at all. It means a lot! Yvonne x0x0x0x
I am so sorry you are struggling with these things. I understand where you are coming from. I have Fibromyalgia and M.E. as well as several other health issues and I feel just as you do. The ups and downs of pain and fatigue are exhausting and crushing. I am lucky if I can get through the day and do one thing, errand, chore etc. along side my part-time job. I come home from work everyday and take a 2 hour nap, minimum, because I am so exhausted. The catch 22 of these illnesses is you will improve, but you don't know for how long it will last so you can never truly move forward. It can be absolutely heartbreaking. Just know that you have people who love and and people who want to listen to and support you. I know you don't know me, but my name is Emily, and I'd be happy to chat any time. Even if you just want to trade complaints.
Hey Emily, thanks for your comment hon. You're right about the 'getting better' part because its true! And yet random. Pain never fully gone of course, but I go through weeks at a time that can be at least 30% worse than others and there is literally NO pattern I can find. That's the worst...and the best too because those are the days you live for and gain hope from🙂
It’s debilitating and ongoing. Stay strong because I too suffer with chronic pain and fatigue. You are strong and will persevere. It’s a conundrum because exercise hurts but helps. Rest is good but fatigue doesn’t go away. Find peace and support. We are out there. 👍🙏
Just half way through your vlog and I just wanted to say I know how you feel. I’ve had fibromyalgia since I was 30...That’s 21 years now living with constant pain!! It’s a right pain in the butt!! It’s a very rare day that I’m pain free and when it happens I’m overjoyed but not for long with this shitty illness...I feel for you and I hope that one day we will find a cure for it and we can live our lives with joy and energy...❤️❤️❤️❤️
I’m so sorry you’re going through all this! I know how hard and lonely it is. On top of all of the fibromyalgia and arthritis and depression, my husband left and we’re divorced now, my kids are adults and they don’t get it and don’t want to try. It’s easier if they act as if I don’t exist. Which triggers all of the other stuff and makes it worse! I say the same thing all the time, “I’m so tired of all this “. So I really do understand! The only thing that helps me at all is praying. You’ll be in my prayers. I wish there was more I could do! Just know you’re not alone 💜🙏
I absolutely,absolutely have the same as you are describing. I am a 54 year old woman who feels all what you describe. I have arthritis,spondylolisthes and menopausal. I hold so so tight onto that little seed of strength in me! But like you at this moment that you are as you are filming I too get like this! Honestly. We really do struggle. It’s such a cruel life we survive daily!!! ❤ look to the sun and the sea and take a deep breath,xx.
thanks for your beautiful comment.we really are hidden warriors💗
The aching, burning, stiffness and tightness is very pathological. There Has to be an organism responsible for this. Crippled and bedbound for 20 years. I’m 63 and so is my husband.
He does everything!!!!!! I’m so very fortunate.
First time I hear this from someone else, feel so related... But my family doesn't get it. They just judge me like I'm lazy. So its nice to hear that this "normal" with fibro.
Yea it’s such a bad condition to have :(
I have the same illness I go through the same feelings every single day kind of nervous of how my life with this is going to look like in the future but I’m trying to keep strong and hopeful stay strong and think of other ways that you can help others. I wish you all the best my friend
I think that only people that have fibromyalgia can actually understand and relate to this. I feel for you, its so painful, exhausting and discouraging. Im so sorry 💛 and your not alone.
Thank you for your honesty. I also have fibro. Your feelings are perfectly legitimate and we all feel like that at times. Be well x
aw! same to you! xx
Not depressing or sad at all. Everything you said, I can relate to. Makes me not feel so alone. Hope you’re doing well today 💕
Hearing you putting in to words how we feel and what we have to deal with brought tears to my eyes too. However it felt partly as a relief that there are people who can understand. I felt such compassion flooding inside me for you and all the beautiful people that have to deal with chronic pain. If it's any consolation your videos your personality and voice are a real consolation. Therre should be a huge spa with massage therapists and puppies and lots of pillows and pain killers for us to have parties and chill. Lol. lots of love and healing hugs from greece
Thank you for making this, I feel the same as you I need to know is not just me❤️
Thanks for sharing you speak for so many of us if I take a trip I hurt for a week afterwards just from the drive anything I do I hurt and I get chronic fatigue I hate it but we all have to keep the faith and know that God says In Heaven There Is No More Pain suffering or tears and we're to rejoice in all things I will keep you in my prayers God bless
I so relate with my fibo .Evan having conversations with people .is too much sometimes is well.know exactly how you feel.
I have it too, so fed up with it too, not sure I'll ever accept it. A good cry sometimes gives some relief to just let it out. I'm in bed right now, glad to hear your story. We're all in it together ❤
You're right about having a good cry..we need that after putting up our best front day in day out...
I feel your pain just taking a shower feels like you worked a 40 hr job with little rest. Hoping things are getting better or you're finding better ways to cope. Thanks for sharing
Hello. I wish I ahd seen this back when you posted it so that I could let you know that you are not alone. You are so right, the truth is that this struggle is REAL. It's so hard to want to do things that our bodies won't allow us to do. I recently lost my relationship with my exhusband, who has been the love of my life since we were 15. Fibromyalgia and Chronic Lyme Disease has robbed me of who I once was. He was patient for a long time, but unfortunately the struggles with my health broke him in January. I am trying to find a new normal, trying to heal emotionally, and trying to treat what my doctors believe is the root cause of my Fibro, which is Chronic Lyme Disease. Please don't ever feel badly about posting videos that are real and raw. You are sharing your reality, which helps others to know they are not alone. You helped me this morning! Thankyou for this!! I pray that you are managing the best ways that you can, and have also found a new normal. I hope you can find joy in this life. Thinking of you today!!
From Sunrise To Sunset You can only get Lyme Disease from a tick bite right? I'm having pretty much all the symptoms of Fibromyalgia.. but I haven't been diagnosed with anything yet.. I'm trying to figure out what's going on.
Snooze Z z z My heart goes out to you! I started out the same way, without a diagnosis, having no idea why I hurt so badly all over all of the time. I finally had a diagnosis at Mayo Clinic in 2012. In 2013 i found a good dr to treat it. Then in 2015 and 2016 I felt I was just feeling worse over time, and a friend suggested testing for lyme. I found a Lyme literate MD/ND and he ordered testing for all kinds of things, including lyme. The testing has a 70% false negative rate though. You can Google 'problems with lyme testing'. My tests revealed quite a few things...chronic Lyme disease, eppstein barr, several other viruses, and he thinks I have Babesia too (a tick borne coinfection). Often ticks carry more than just lyme, unfortunately. Lots of people don't recall a tick bite in their lives. I sure do though! I definitely don't want to leas you in the wrong direction, this has just been a brief description of my journey. I love this dr who has a wealth of info on his site, and maybe it will help educate ya a little on both fibro and lyme. He does sell supplements, but you can ignore that info. He went through fibro and lyme himself. I hope this helps! Message me anytime! rawlsmd.com/health-conditions
From Sunrise To Sunset Thanks for the info.. this is so hard for me. I cry all the time. It just came out of nowhere all of a sudden. Symptom after symptom after symptom.. I'm always scared, and I always feel alone.. i feel like I can't keep up with my family, friends, job etc. Doctors are having a hard time understanding my symptoms because I look normal and all of my tests have been normal so far. They're trying to push this anxiety thing on me when I know it's more to it than just that.. I know my body and I can just feel that something is wrong.
This video makes us feel normal for feeling the same most days. Gentle hug
I completely understand everything your saying as I have suffered and was diagnosed in 2012 each day is a battle 😢 and I'm so over it and just want to be normal again😌Big hugs to you❤
Today is 25 of October 2018 when I’m watching this video and I’m laying in my bed because I’m in agony with pain and fed up with this stupid condition called fibromyalgia. I feel exactly like you and I understand you perfectly. It’s such a burden!
hope better days are around the corner for you. take care xx
I know exactly how you feel, same here , and I’m opening my own hair dressing salon : I might just be crazy. 2 years ago I was so much worse that what I am today, but like you I crash and today I had to cancel someone and reschedule them as my fatigue just consumes me,, but we will defeat this somehow , I cried with you , not a bad thing either made me feel not so alone , keep strong and don’t be too hard on urself xxxxx
Yes I am completely with you. Venting helps a lot. I cannot get my body to keep up with either. I feel guilty turning friends and family down. Sucks. Nothing helps the fatigue or pain. But hope and love gets you through. Chin up!
I'm feeling a bit like this today.I have fibro and RA and I'm just admitting that I'm pissed about it today.I'm angry at how it has me so tired and the pain and how it interferes with my life. I'm tired of putting on the friendly face no matter what. I'll get past this moment but right now I'm so tired and I'm angry about it.I just want to cry and I haven't cried about it yet. I give myself permission to do so now. I love that you speak on just how frustrated you are.Rarely see that.This actually helped me so thank you and I hope today you are doing better as I know this vid was awhile ago.
You're so sweet to say that at the end of your message...god I really feel for you... especially putting up the brave face no matter what.its insane what you can hide until the pain is literally ROARING.
I'm doing better than before but there are times I feel powerless because of the pain. Those days are much less at least, but I still have pain every day.. sending loads of love. I know how it is and sometimes it feels like you're in another world to everyone else. But people like us exist all around the world, you're not alone
@@YvesyM thank you. I hope all of us who know exactly what this is like have many more good days and know or come to know it's okay to say how we're really feeling when we need to.ROARING-that's a good word to describe it.
I feel so sorry for you, dear that you have to deal with fibro at such a young age, or ever for that matter. My wife has it, along with arthritis, degenerative bone disease, and diabetes. She is on all the normal medicines, and now is trying Humira. She works as an RN 3 12 Hour shifts a week, and she has to sleep almost the entire time she isn't working, and she is in constant pain. The thing that seems to help her as much as anything is her anxiety medicine. If you are not on it you should try. I've also heard that canabinol is good for it. She can't use it because of her profession, because of the risk of positive thc test. Other than that, we can only wish you days without pain, and pray for you, dear. Our hearts go out to you. Believe me, Mary knows your struggle, and she personally knows it is real. God bless you, child. ❤😕🥀
PS I just noticed you're in the Nederlanse. I have a friend who lives in Ede. Oh how I wish I could help. My heart breaks for you..
I've got Fibromyalgia with chronic pain syndrome and scoliosis with a cervical kyphosis also carpel tunnel so im with you on the pain hope your having a low pain day x
There is good medication. Baclofen. This may help you. Good luck
You have chronic Lyme! Look up Ellie Lobel on CZcams. Bee venom therapy
Please do not say sorry. I am glad that you shared your bad day. I am currently having one as well it was so nice to hear you speak the words I just couldn't put together. I don't want you to have bad days I wish, hope and pray that all your days are good ones. I fully understand not wanting to call any one, I post on a closed fibo group on facebook , so that my family wont worry about me. Some times you just need to vent and there is nothing wrong with that.
I saw this just now and my heart breaks for you and me. It feels good to know I’m not alone though! I hope you’ve been able to find some peace and better health too! I will look to see if you’ve made more videos. Thank you for sharing what was in your heart! It helped me so much too!!!
You are not selfish....You are simply lovely....I am in your position, and understand as best I can xx
Thank you! This is me. I'm not alone.
Get well soon girl 🍀
Thankyou for sharing, I am sorry you are at the point of enough all ready i know how that feels and its not nice ive not even has fibro a year and i have had enough. its a awful condition and nobody can help i get sick of popping pills to help with the pain. i wish u better hunx
Thank you thank you thank you for this video. You express what I am mostly unable to express, what I keep inside of. Me, what I do not let other people see... Mainly because I feel that if, only for once I would let go of pretending to be strong all the time, I would loose might fight against fibro.
Thinking of you and "hope"you are well Yvonne xxx 💕
hey there! i am feeling a good bit better (in spirit) than what i did yesterday. thanks for all of your kindness :* Xxx
No worries honey big hugs xxxx