A Week Of Fibromyalgia Symptoms
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- čas přidán 9. 04. 2020
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In this video I describe what the last week was like in terms of symptoms for me - weeks like this are a reality for a lot of us, and I wanted to bring light to that.
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"You're wearing really uncomfortable clothes but you can't take them off since it's your skin" ... hadn't thought of that description but that's a good one to help explain to others. I like that you talk about the pain moving and changing. I find that I go through long cycles of symptoms and the minute there's improvement a new different cycle begins. And previous cycles of symptoms like to pop in for visits so they are never forgotten!
I totally agree, sometimes you'll experience one kind of pain for a while and then it will switch to something else, and it's just this on a loop. I am sorry it took me so long to reply, your comment was in the spam folder for some reason. I hope you are doing okay and glad you enjoyed my video :)
I understand...this is the list of symptoms I have, blurring vision at night time mistly, costchondritis and tietze..pain in ribs and chest, knifing pain in right knee. Ear pain, jaw pain, bee stings everywhere, deep aches everywhere, severe fatigue, back aches, mid, upper, lower, numbness in upper thighs, mostly right side, tingling and bee stings going off like fireworks within the numbness. Back of head aches and sore to touch near neck. Horrible slerp, irratable bowel, indigestion. Right buttock sever tight muscle pain. Cold feet at bed time, takes hours to warm them with heating pad, occasionally nausea go no reason. Low grade fever sone days..very dry hair, pale skin when fatigued. Bad anxiety flare ups worsened allergies and now asthma with it. Bladder pressure at night.,feel like i have to pee every half hour. Tire easily and stress makes everything worse. Dizziness and tinnitus just horrible.Dry eyes, corners almost constantly watering. Legs and sometimes arms feel weak or heavy. Forget suddenly something simple and always known for years like how to click on a certain link on my computer..draw a blank suddenly but then sometimes hours later I remember no problem and good w that rest of week until next time something different is forgotten in same way. Hear palpitations mostly in bed. Sometimes get shortens of breath just going up 6 stairs, more sensitive to noise and even light touch during flare ups. Feeling detached from my body at times. Low thyroid..on meds and previously had endometriosis. Had many life traumas and stressors likely cause of my fibromyalgia. Anywhere in body that has had previous injury, surgery, or scars or anything will suddenly hurt badly during flare ups, Just Brutal living this way..no energy to do much. Need to nap EVERY day due to really poor sleep. Wake up at 2 or 3 am and can't get back to sleep...even happens times I tried for weeks and I don't allow naps , doesn't improvemy sleep at all.,.back to naps just to function daily at all. Does anyone else share all or some of these other symptoms?
I don’t have every single one of these, but yes, most of them sound very familiar. I'm sorry it's been so hard on you
Thank you for your reply Olga...I wish you well! 💖
Reading this 2 years later from your post but omg its me😢❤
Thank you for this video. I am having a really bad week myself and feel comforted that someone can relate to some of my symptoms and that it's not all in my head. The cramping hands, blurry vision, knee pain, lower back pain and shoulder pain. I've also experienced soreness and tenderness in my stomach (like I coughed too much) which makes it difficult to stand, sit, lay down in bed or turn over. My energy level is about a 3 out of 10. I have consistent pain but this is the worst flare-up I've had in a while. I've been watching CZcams for awhile and never thought to look up fibromyalgia. I'm glad I found you. Thank you
I'm glad it helps. I hope the flare eases soon!
I totally get you..I too am like, nice, only a mild headache and joint pain and stiffness..its a good day..lol
When a person without chronic conditions would be " I feel horrible" ..definitely our chronic conditions have distorted our perception of good and bad days.
Yes, absolutely. When I say something hurts, it's because it hurts more than usual
You make me feel so much better about what I struggle with. I have a 1 yr old son and my almost 3 yr old daughter. And if anyone knows or has kids that young, they hang on their parents. I love my kids, but it’s so hard to plan to go outside or do things with them because it’s so difficult balancing my pain and illness and 2 young kids. Thank you for your videos
You're so welcome! Kids is something I think about so much, because I want to but am scared of how hard it will be. I'm happy you have a supportive family to help you :)
Thank you for this video ❤ I know how hard it is to tell your pain story over and over to people who probably wont understand
Thank you Lauren, it means so much to be appreciated :)
The shortness of breathe is what stuck out the most for me in this video. That's pretty much an everyday thing for me although it does vary in intensity, just like my other fibro symptoms. My upper back, sides around my ribcage and chest feel extremely tight most of the time so it makes it hard to breathe. Anxiety doesn't help either. Anyway, thank you for these uploads. They're very helpful.
oh my god thank you for sharing this. this is almost exactly like what i experience, its just so hard to deal with and nobody understands. ive been dealing with daily pain for over a year without being able to access any care. i just have my heating pad and tylenol PM to get me through the day. thanks for sharing! sending you all the solidarity
Aw that sounds tough. Gentle hugs!
Nice to meet you
Good Luck on your Journey
Informative
Thank you so much!
Thanks for sharing. At least I know I’m not the only one with changing pain daily!! Stay safe and I hope your pain levels are good today xxxx
Thank you! Today I'm doing okay, I've already made pancakes and did a little bit of herb gardening :) I hope you have a low pain level day as well :)
Sending hugs your way my friend❤️
Thank you 💖
I love your vintage style. Its adorable. I wish I could pull it off.
Thank you :) I am sure you can! It's all about how you pair things, and just starting.
Hi ther. I couldn't of put any better myself .you have just described everything I suffer with in one vlog. Wow just thought I was listening to my self for a min . I have watch hundreds of vlogs and there all good but it's always bits and pieces of information only one particular area .all very informative .but my god I just can't believe how just said all that and I related to right down to the pain in your hands you pin pointed the.exsact spot .I really cannot believe what I just listened to it was spot on .thank you for doing this am not imagining all this phew!!
I have suffered for 10 yrs but it's got so bad past 3yrs .am so glad I discovered your vlog.
I will subscribe and press the bell so informative brilliant.💜
I’m so glad you found this informative and relatable! It’s definitely hard sometimes cause you feel like you must be imagining things, so being able to know that others are experiencing the same is very helpful. Thank you for your comment, it means so much to me 💖
Good insightful video. Guess it differs a little bit for everyone. Chronic fatigue is the absolute worse for me next to the pain. Hoping to get past this flare up soon.
Yes, it can be very individual. I hope your flare eases soon!
Hi Olga. I am thinking of starting using the spoon theory. Do you use it to plan your days? I have IBS-C. This week has been so painful with that. Plus, my fibro flared from my cycle. It’s been a bad week. My legs feel like huge bricks. They ache so bad. Oh my the blurry vision can be so scary. Especially when you work on a computer all day. I can totally relate to your week. I am sorry you have to deal with fibro as well. You’re so right...it’s unpredictable. I was telling my counselor I feel I’m going to surrender because I feel I have no control over it. But then I know I can’t give in. I have to fight. Your video was great! Thx for sharing. 💜🤓
You're welcome, I'm glad it helped. I used to use the Spoon Theory when I first got diagnosed, I found I had a lot less energy and needed to have a way of explaining it to other people better. As my energy levels improved, and I got better at handling the illness I didn't really use it as much, but still find it a very helpful resource! It's a good idea if you struggle to understand where your energy goes.
I hope the week ahead is less painful for you :)
I'm newly diagnosed with fibro myself but chronic migraines have been part of my life for as long as I can remember. I didn't even think of the sleep issues being connected to fibro rather than just straight insomnia
Well, it can be straight insomnia, but if it showed up at the same time as fibro, they're likely related. Insomnia is one of the most common symptoms of fibro, so I find it a little odd your doctor didn't ask you about your sleep when you got diagnosed, cause that is usually one of the main things. Also, sorry to hear you have been diagnosed with Fibro, but also glad you do have a diagnosis and can now work on treating and understanding what is happening in your body :)
I've always had sleep problems (ADHD) but significant increase with Fibro. About year and a half ago my bio-clock made a switch- rigidly stuck which means I can't go to sleep until my normal time to get up or later and go to work plus shorter sleep time. I exist on constant sleep deprivation. At it's worst, I began dreaming while awake!
Fatigue, extreame stiffness in joints and joint pain in the morning and at night, skin sensitivity to touch, sweating randomly, weakness when walking up the stairs and lifing things, muscle cramping in my legs, twitching, itching with no rash, tingling, and hard time sleeping are among some of my symptoms. I started some autoimmune testing and so far I tested ANA positive titer 1:320 homeogeneous. Hope to find out what's wrong with me so I can start some sort of treatment. My heart goes out to everyone suffering from fibro and any other condition/ disease ❤
hi lovely, I have fibro and have had it for around 4 years now. Not been diagnosed. I have costochrondritis, ibs, tachycardia. I've had pain in various parts of my body even my earlobe of all places, it wasn't pleasant. My sleep is terrible. I find your videos very helpful and informative and I love your sense of humour :) this is a journey take care x
Hi there, thank you for your comment! I'm happy my videos help :) i've had earlobe pain too, it's a pretty weird one haha. I hope you get a diagnosis soon, it can help. Hope you have a low symptom day !
bless you thank you, and you too! They are like gold dust!
I give you a soft hug. I hate that it floats and ssssssoooo unpredictable.
Gentle hugs to you too !
I feel you. I was dx'd in '97. The pain has gotten worse as time goes by.
As far as your stomach pain after eating, I recently found out I have Celiac Disease. Just another tentacle added to the FM Octopus of life.
Hope today is better than yesterday, but not as great as tomorrow could be.
I'd never heard of that analogy but it's a great one! I don't think celiac is my problem because any food causes stomach pain :) But I'm glad you found out that that was your trigger, that way you can avoid it and hopefully find some relief.
Thank you for your comment, it really made me smile. I hope you have a low pain day :)
Total ly, agree...........hugs were tough!!!!!!!!!!!no understanding....!!!!
Im sorry! Im sending you virtual hugs 🤗
My symptoms are close to yours for fibromyalgia I had 2 failed back surgeries, I have lower back pain everyday, I’ve been diagnosed with chronic migraines, depression, anxiety I always wake up in pain and I have to take 3 naps a day. My knees give out constantly but it changes day to day. I’m exhausted
Hi Olga, I have had fibro since 2014 so I know how you feel. I remember you saying you had burning feet. Do you find wearing socks are shoes uncomfortable? I stick to flip flops even during winter
Hi! I do have burning feet but mostly in the summer, so i wear only open shoes in the summer (like sandals and flip flops) and I might wear closed shoes when absolutely necessary (like to work out). In the winter I tend to have freezing feet, so I wear socks and shoes with no problem, and sometimes actually have to wear multiple pairs of socks!
Have any of you tried upper cervical chiropractic? It healed me from post concussion syndrome and my chiro says it can help with fibromyalgia.
i have not. to be honest,i am kind of scared to go to a chiropractor at all
@@olgachronics3273 I hear you traditional chiropractors crack and pop your neck and back but this is totally different they just take x rays and figure out if the top bone of your neck the atlas is out of position. Then they lightly tap it back in place and it improves blood flow and nerve flow and gets your brain and body to communicate again. Worth looking into.
What exactly is the widespread pain like daily or during a flare? How does it differ to muscle aching?
From what I gather, Fibro sufferers typically report like 7/8 noticeable symptoms (i.e. IBS, Neck/Back Pain, Leg Tremors/Spasms, Severe Fatigue, Migraines/Headaches, Insomnia (& over time subsequent cognitive problems), Sinus related problems...). On any given day you may only exhibit 2/3 of these and the symptoms not only randomly fluctuate, but the extent to them varies too. I think the simplest way to describe something like Fibromyalgia in layman's terms is simply chronic Flu-like symptoms, but without the high fever.
Having said this, how does one draw the line between this and something like severe depression or CFS i.e.?
I feel like I may have the condition - over the last 7 months I've had the symptoms described above. I have literally paid thousands of pounds for many private consultants and tests - I've had a: upper abdominal ultrasound, Chest X-Ray, MRCP scan, Head MRI, blood/stool tests looking at my: Liver, Kidneys, Thyroid, Anaemia, GI Infections... but they are all normal. I'm due for a whole spine MRI soon too, but I'm so lost right now 😧. I have had TMJ on my left jaw for a few years which brought about frequent headaches & could've triggered Fibro but I'm so unsure 😭
The widespread pain daily is like a lower level of pain than during a flare. So I am currently flaring, so my pain levels are around 8-9/10, and my normal daily level is 4-6/10 this time of year. There are literally hundreds of symptoms of fibro, but like you said there is a main cluster of symptoms we have more often. The thing is it's more than flu-like, because there's more symptoms than when you have the flu.
If you do have the condition, it is totally normal that all your tests come back normal, fibromyalgia does not show up on any of the tests widely available. There are some interesting studies into ways to diagnose, but those methods are still very expensive and not publicly available.
I do hope you find an answer soon, and that you have a low pain day :)
@@olgachronics3273 Best wishes through your flare - sorry to hear you're going through one right now, just take it a day at a time. But yeh, it's a beyond vague condition which affects people so randomly, a lot of people who believe they have it could easily be misdiagnosed - there's definitely varying tiers to this.
In any case, what forms of therapy have helped you? (i.e. Physio, Chiropractor, Acupuncture, Yoga/Meditation...) if you have a video covering this could you please direct me towards it? I know you've mentioned that relaxing in water helps.
I'm considering going to a chiropractor as the right hand side of my upper & lower back is constantly aching, but I'm kinda hesitant as I've heard that it can make certain Fibro symptoms worse & whenever I try to do simple back stretches/exercises at home, I ache a lot & have a delayed recovery.
Also, I know you said you manage the condition by taking supplements and hardly any medication, may I ask which you take & would recommend?
If it helps, for me, I've started taking Serrapeptase 1 a day for about a week now and it noticeably helps with the muscle aching.
Thank you. What I found most helpful was Water Aerobics - it's a form of exercise in water, and it was very difficult for the first few months, but with time I say results, and now that the pool is closed due to the pandemic, I am missing it a lot. I find gentle exercise to be the best therapy. I have a video series on this topic. I want to try a chiropractor too, but have the same concerns, plus with covid, I am not going to be risking it now. The delayed recovery will always be present, no matter what you do, but it gets better with time.
What I manage with supplements is my IBS, but I am going to be making a video on that soon :)
Fibro sucks, much love 💜💜💜💜
Thank you ☺️
Nice to see you here fibro mom I am subscribed to your channel
Sleep does absolutely nothing for me. Naps tend to make things worse
oh that sucks!
I over here wondering if I really have fibro or something else affecting me why I feel like I have fibro its just hard to believe your body just ache for ache sake 😩
I feel it in my head and breasts the most sometimes in my tummy my throat at one point i swore my teeth are rotting to how I started feeling it there. Do you feel pain in your breasts or under your armpits and the lining of your breasts. My knees back EVERYWHERE hurts I been doing constant testing to rule out everything else like cancer and stuff like that. Its NOT LUPUS thank God.
Hi Noelle, I'm sorry to hear you're struggling to figure out what is happening, and yes, it sucks that our bodies hurt for no apparent reason! I do have chest pain and it extends to my breasts too. It is exactly like you described, it hurts everywhere..
I hope you find a diagnosis soon, cause it can really help to come to terms with what you're experiencing and understanding it better.
@@olgachronics3273 sigh did some more blood tests today will do my CT Scan very soon going to see if I can request an ultrasound for stomach or a Scan. The earlier we figure out what's up the more aggressive we can attack it and try to heal
Olga, any advice for convincing my Doctor I have Fibromyalgia? I've done every blood test under the sun, and of course all negative. I keep telling my Doctor that it's Fibromyalgia but her response was "I don't want to diagnose you with something that's untreatable".
I hate that response. Have you tried asking her to formally write in your chart that she refuses to give you a diagnosis? or maybe a different doctor? I would also try to correct her that fibromyalgia isn’t untreatable, it's incurable, and there is a difference. I (and many others) have found "treatments" to help us slowly improve our quality of life. Medication, life-style changes, pacing, gentle exercise and managing your symptoms with specialist’s help can all help you feel better - you will likely always have symptoms, but it is possible to get to a place where they aren’t as intense. Fibromyalgia being incurable shouldn’t be a reason to gate-keep you from a diagnosis.
I hope this helps! If you need, reach out via the DM's on instagram and I'd be happy to help more! Stay strong :)
Thank you SO much for responding, I will take your advice and move onto a different Doctor. I feel like my current Doctor has thrown in the towel with my case anyways....
I’m sorry they weren’t more helpful, but your health and well-being has to be more important than their ego. You will find a better one, and you will find a diagnosis and you will try things that won’t help until you find the thing that does. You deserve to improve your quality of life. Lots of gentle hugs and good luck! 🤗
I finally got the diagnosis of Fibromyalgia AND me/cfs, thank you for the advice, and this wonderful channel!
You're so welcome! Congratulations on the diagnosis! I hope it helps with getting the right help in the future :)
I tell my mom when im getting foggy so she knows im gonna be out of commission for a while. For some reason she always asks why and i dont understand it.
I'm dizzy.
Why?
I dOnT kNoW, tHaTs ThE pRoBleM mOM
hahah I totally get you! I hate when people ask me why im flaring