Hello, I joined this group only recently and have been reading my way through previous posts but also anything else that I have been able to lay my hands on about fibromyalgia. I'll try and keep this post as succinct as possible - not sure I'll succeed.
I've been plagued with a range of debilitating symptoms for a few years now and have been in the care of an excellent GP and consultant. But both do say that I baffle them. There is a suspicion that I may have a rather unusual rare condition but so far the biochemical evidence is not corroborating that suspicion. As part of a process of excluding other conditions my consultant has been referring me to various other specialists and a huge range of conditions and illnesses have been ruled out. Last week I saw a rheumatologist who diagnosed me with fibromyalgia. Reading up on it there are some things that ring true, but there are also a lot of others that do not. There's one very specific question on my mind right now and I wonder whether others might be willing to comment.
I have always been a very active person - daily four to six mile walks with the dog and in the holidays doing long distance treks across the Alps carrying my own tent/luggage - and the likes. And also weekly Yoga and Pilates classes. Over the last six years I noticed that I appeared to be getting weaker. Initially I put it down to getting middle-aged and tried very hard to get on top of what I perceived to be my lack of fitness. Eventually I realised that the more I exercised the more I a) ended up in considerable pain afterwards and b) was loosing muscle strength, especially in my thighs and also my upper arms. I still go out with the dog on a daily basis (mainly to throw balls for him so he gets enough exercise), but cannot walk any distance at all and have to sit down a lot to rest my muscles.
I see that exercise is recommended for fibromyalgia patients and there is nothing I would love more than to get back to climbing hills or trekking across remote areas for days on end. But with me it is that the more exercise I do, the more I loose in muscle strength. I am now needing to use a stick to get out and about and cannot manage things like stairs unaided. The pain I experience is AFTER exercise and can last for hours, but it is on the whole not before or during. So here my question: can fibromyalgia lead to loss of muscle tone/strength despite working hard on maintaining exercise and trying to stay as fit as possible?
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Hekkla
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One possible explanation for your interpretation of "losing muscle strength" could be that pain sets in so you can no longer continue the activity you were on. Muscle strength is a complex physiological process and unless you have some rare form of genetic disorder that leads to rapid muscle atrophy it shouldn't happen so quickly. One reason you don't feel pain "during" exercise is that our brain releases "feeling good molecules" as we get moving. If you keep up to the pre-fibromyalgia level of intensity it is definitely going to hurt afterwards, because your brain signals pain much more quickly and readily with greater magnitude. The recommendation of keeping up with activity is to "not" become completely sedentary as some of us can be, when in pain and depressed, and lose the remaining muscular tone. Maybe you could try to find a happy middle by slowly building up your exercise time and see if you can find a sweet level and duration that energizes you without making you pay back with more pain?
Understand your frustration, I have the same problem. I cannot compete with you treks across the Alps but I used to enjoy swimming, walking and cycling and was very fit at the age of 70. I have never been officially diagnosed with fibro, my GP is not interested but I find that any sort of activity now leads to constant pain, sleepless nights, pounding headaches and chronic rib pain which is driving me crazy and making me very bad tempered. I tend to confine any activity to the mornings when I am at my best and then put my feet up in the afternoons, very boring but it does help. I go to bed early but have very disturbed sleep. I struggle to continue with a voluntary job which I love but even this is getting me down and I am seriously thinking of packing it in although it would leave me very isolated. Don't really have an answer but you are very lucky that you have medical professionals who are engaged.
What you describe is fairly similar to me. I actually originally joined this forum to ask the question as to whether can you increase muscle mass with fibromyalgia. I do a lot of intense exercise and a lot of fairly moderate exercise and have two young children so don't get to sit down very much. The majority of pain is in my legs. Despite doing HIT/cardio most days and kung fu in the evenings going up stairs is always crippling. I saw a physio for a few months, which I paid for, he said he thought I did have reduced muscle mass in the legs, especially compared to my upper body. He put this down to me limiting movement due to pain. Albeit in a way I didn't notice while taking part in an active life. I can be in a lot of pain on the way to the gym, especially if I'm going everyday, but after the warm up I'm good for a while, sometimes hours, and then the pain sets in and going up stairs and getting in and out chairs is difficult.
Muscle weakness means a loss of muscle strength. Fibromyalgia can cause generalized weakness, affecting all your muscles at once, or weakness in a particular muscle. Your muscles may be easily exhausted and respond by trembling or twitching.What happens if you exercise too much with fibromyalgia?
According to Jones, overdoing it can lead to worsened fibromyalgia symptoms three to five days after exertion. Even worse, "You can end up having a flare," says Hoffman. "You may try to make up for lost time, but you don't need to train hard. Honor your body, and train for good health instead."How do you strengthen your muscles with fibromyalgia?
Your choices include mall walking, swimming, water aerobics, using a kickboard in a pool, yoga, tai chi, or biking. Start slow and increase the time and intensity as you can. Again, your goal is to work up to 30 minutes a day, 5 days of the week. OK THE ABOVE IS WHAT THE 'EXPERTS SAY' . NOW HERES MY TAKE ON IT. Whatever i do tires me out. They say keep active,but at the same time they tell you to rest too. I also had to use a stick in the beginning but i now use 2, do you get 'trembles, and like vibrations' thru body, all thru or sometimes just arms or legs? Somedays i can wake up from a 10minute nap and feel like im needing a fix or something Feel all shakey, ive even asked if folk can see me shaking. Like its all in my head or something. Sometimes they can see it, sometimes they cant. I noticed up there ^^^^ water aerobics...... not the same i suppose but i loved HYDROTHERAPY POOL. But only allowed about 8 sessions i think it is? Oh i felt sooooo good in that pool and i could move around, exercise all in the warm pool, i was in heaven. But come to get out of pool , i went down on my knees, i were like jelly, and the rest of the day wasnt much better, felt like id been run into the ground. Next day was a bit better and 3rd i were just my regular fibro self. They say after a batch of hydro, go out a do regular pool exercise/swimming. So i tried it.... OMG... i thought i were going pass out have heart attack or something. To me the water was so cold i started to spasm in the water and i couldnt breathe, felt like i were getting crushed. I tried again about a month later, but this time a friend took me, i dont drive, it started to happen again but he lifted the length of my chest out the water and kept lowering bit by bit. It didnt warm the water any but it did ease the panic or whatever it was. I stayed in the pool for awhile ling enough to do leg exercises i learned in hydro pool But it was to cold i was 'cold' hurting so had to get out. So whatever 'is good for you' exercise i tried, just hurt me, tired me out. With all my heart i want to do stuff, but knowing the pain it puts me thru, my body just isnt willing. Bit like picking up a hot pan and burning hand, you rnt to willing do it again ru? Im like fighting with myself. EVERYONE is different tho, what works for one doesnt necessarily work for another. That just isnt drugs, foods ect its 'actions' too. They say the more u do the more u get used to it, but i just couldnt do it, i was getting stressful and tensed up, making muscles hurt even more.
Thank you for your response. If I may, could I ask some questions in response? The loss of muscle strength for me is very specific - upper arms and thighs only, everything else is fine - but the more I do to strengthen them the weaker they get. I still am as active as possible and am out 'walking' for about an hour every day. I put it in inverted commas because it is all very slow motion because my thigh muscles are quite clear that I cannot put any demand on them. I fear it's not the lack of exercise, but the doing of exercise that makes the muscle strength worse - would that be typical for fibromyalgia?
Then there was something in your response that caught my attention. If I understood it rightly then you experienced at one point being immersed in water as very uncomfortable, even painful, while being in warm water was quite pleasant. I am constantly too hot it's as though somebody has turned up my inner thermostat and there is no longer a dial to turn it down. Immersing myself in cold water or standing in the cold is bliss for me, while I nearly passed out recently in a place that was at perfectly normal room temperature - would that ring true for fibromyalgia.
My apologies for all these questions. I am trying to get my head round the fact that a consultant who saw me for the sum total of 10 minutes threw this into the room with a confidence that I found quite startling. There are some things about fibromyalgia that ring true for me and then there are others that just don't and don't want to loose sight of what all those other symptoms and ailments I have which are likely to be endocrine related. Thank you for reading.
Dont think i have any answers that can help you really. I was told where my body is weaker to strengthen the muscles above below to take the strain, As for upper arms and legs being your only problem. Mine is full arms/legs to the point ive gone down on my knees on the odd occasion Ive tried strengthen lower legs to help with knees but it doesnt seem to make a difference for me. Arms, i cant hold arms up for any length of time eg, holding a fone for a long chat. Washing hair, holding a shelf up while the other end is getting fixed i keep changing arms which is hopeless because everytime i moved so did the shelf, so im useless in that sense. Exercise causing weakness..... i can honestly say i dont know how to answer that 1? I get really tired and ''legless'' when ive been walking or on my feet doing other stuff, i get tired body quickly. Ive got one of those cycle motion things. Sit in a chair feet on pedals and cycle, but i cant do it for any length of time before i need to rest. WATER when panic sets in i feel like im getting crushed and cant breathe, Well same happened when i dropped self in pool it was that cold it must have put me in shock.once the initial shock was over my whole body was racked in pain, so i had to get out but needed help get to changing rooms cuz i were like jelly.... i never give it a thought and a few months later i went swimming with sister n kids i sat on side of pool and slid in, felt like a 1000 daggers coming at me, then it all come back to me what happened before, you do all your exercise in a warm pool then get told to keep it up at local baths. The water was just to cold, and the baths we went to are the warmest in my vicinity only by about a couple of degrees. But to me it felt like ice and caused me a lot of pain. What you describe as your hot/cold/pain isnt like what i go thru have you spoken to your doctor about that ? Try keeping a diary of all the symptoms you get, maybe also note down time of day, what you were doing, the weather eg rain damp, sunny hot, humid,cold ect and how you felt hot/cold/clammy/fine In time you might notice a pattern of certain pain with weather/doing and feeling is the same everytime it starts? Not saying its going to work but its worth a try if you can eliminate doing certain things in certain temperature ect, note down new foods too, apparently foods can effect us in different ways too. I have a book called FOODS THAT HARM FOODS THAT HEAL. maybe there is a link or site that you can look over for some ideas if theres any particular foods u should steer clear off or any that will help with symptoms, Im so sorry i cant be of any help, when you say you get really hot and you need be cold to bring temp down, would that be 'hormones, the change'? because i think fibro can affect those too?
You maybe right,look on the bright side, if you cant tolerate heat, think of the money you can save not using your heating , when everything starts building up on you like this, you got to try laugh once in awhile or you drive yourself mad with test after test and worry about results. Whats the other issue they are investigating, whats it called?
Hello, and thank you for your response. I hardly dare say it because life has been so hard for many people but I actually had some money left over from the government grant for utility bills. I only put the heating on occasionally because I don't want the house to get damp or when visitors are coming, that's how hot my own personal microclimate has become!
I was diagnosed last summer but feel I have had fibromyalgia for many years. I do get a lot of muscle pain in my thighs and upper arms. I think someone else mentions that sometimes they feel like they are trembling inside. Unfortunately with fibro I think it’s do what you can when you can. I try to do stretches every morning even when I feel really feel bad as I am terrified of not being able to move. As you will see from this forum we all have very common traits but we are also very different. Good luck.
The weakness was actually one of the first symptoms I had. It would happen suddenly, I would be walking and all of a sudden this totally fatigued feeling would happen. It feels like someone literally pulls the plug on me and I suddenly go all wobbly. It happened a couple of years ago that I suddenly fell on my shoulder in public. I sort of felt my legs give way and it caused an extremely painful rotator cuff tear 😢
Since then I have used a walking stick which helps a bit. My legs have no muscles now, my legs from knees down have gone so thin and my feet feel broken especially my toes
Walking lunges strengthen the leg muscles as well as the core, hips, and glutes and can be made more challenging by adding weights. Stand upright, feet together, and take a big lunge forward with your right leg, lowering your hips toward the floor. Bend both knees to 90-degree angles.
Why is my muscle weak in my lower leg?
Leg weakness can result from sciatica, spine conditions, neuromuscular disease, and certain medications. HAVE SPINE ISSUES
How do you treat lower leg weakness?
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Here are some of the treatment options for conditions that cause muscle weakness:
Physical therapy. Physical therapists can suggest exercises to improve your quality of life if you have conditions such as MS or ALS. ...
Occupational therapy. ...
Medication. ...
Dietary changes. ...
Surgery.
What is the best vitamin for weak legs?
Vitamin D helps your body use calcium. But when you're deficient in this vitamin, your legs may feel weak, sore and heavy. A vitamin E deficiency may be another reason your legs feel heavy after a run. If you're running to lose weight, you need to watch your diet.
oh my this frightens me a bit as my leg always feel quite weak and I have fallen a couple of times as well. I use a stick now too but I am so scared of loosing any more power in my legs.
I found pain restricted my movement, especially walking therefore I became deconditioned and felt weaker. I am gradually building up what I can do. You have to start from scratch, literally. Build up very slowly, don't expect to get to where you were before, just very gradually build up; to what you can do now. Doing too much can badly rebound on you!
Hi, reading your post makes me think “Chronic Fatigue Syndrome”, often abbreviated to CFS/ME. The “ME” stands for Myalgic Encephalomyelitis.
I have both Fibromyalgia and CFS/ME, the two conditions are separate but very often coexist.
If you feel up to it please read up about the condition as I feel you may well find it ticks a lot of boxes as you start to understand what it involves.
I’m not attaching any links here as there is a huge amount of information online but obviously please read only from reputable sources; as always online there is a lot of nonsense too
Good luck with every attempt you make to regain fitness but also do be kind to yourself and listen to your body. I wish you well always. 🙏😄
Thank you for directing me that way. My medics have been very supportive and diligent and I cannot fault them in any way. It may well be that I have two conditions (just what I wanted or needed!) that interact with each other and in a way pulling me in two different directions as far as exercise/movement is concerned. There's a strong suspicion that I may have a very rare form of Cushing's Disease with fibromyalgia thrown in for good measure and I am now trying to unravel what belongs where and how best to live with each.
I’m so glad my reply was of use. You are lucky to have a good doctor to investigate the conditions you may have.
There is a real overlap between CFS/ME and Fibromyalgia. It’s often very difficult to know what is causing which kind of pain/issue.
The main difference is in the exercise ability. I now can’t walk any distance at all without a sit down or use a mobility buggy or wheelchair due to my absolute exhaustion on doing any moving around.
It would be so much easier to diagnose if there were a test for these illnesses but it always has to be a diagnosis by exclusion, just ruling out other conditions one by one. Lots of specialists, lots of tests, so that finally the medics say “ Well, by your symptoms it must be this or that”.
You are on the same journey as everyone of us here. It’s frustratingly annoying not to be able to do as much as you once could but, honestly, the only way to deal with it is acceptance of new limitations and being kind to yourself.
Resting and pacing yourself won’t heal you but it makes everyday life much easier to cope with.
Crashing and burning after doing too much day after day, will only make you feel much worse and take you longer to recover
It’s a lot to deal with but having support from family and friends is good so tell them all about it so they can understand the new you ;))
Hi. I was a gym goer for years and a machine technician for a bakeware company in included machine maintenance, setting of tooling which weighed anything from 80kg to 3 tonnes. A lot my job involved pushing tools onto a press bed from off of a truck/forklift, and a lot of running around, using spanners to bolt tools to the ram and the bed etc. It was very heavy, tiring work. We had to work in pairs also as it was required by Health & Safety in case of accidents etc.
I had done that job since I was 19 and by the time I was in my late 30s, I had developed many useful techniques to make the job a lot easier. I was fine until the company I worked for went into administration, and I was then re-employed as the only machine technician by a company that took everything over. They had bought all the tooling and equipment from my old employer, and I was to help oversee the stripping, removal and transport of the presses etc from the old premises to the new, planning and set-up of the new press shop floor as well.
Originally, my new employer said that they were only going to run a few machines, and there was to be a few products to be produced on some of the smaller presses etc, so they said they only needed me to do the job and noone else. This was fine by me at the time as it was lighter work than i did for the company before. Gradually though, things got busier, more presses got set up and tooling brought back into production and the shop floor production expanded into a full size factory set up, yet I was still the only technician and did all the work, practically on my own.
I did my best to keep my employer happy and worked my ass off, but i also tried to communicate over the next couple years to my Employer that I needed someone else to work with me as I shouldn't be and couldn't cope doing it all on my own, and as I was on my own, that I was starting to feel overwhelmed mentally and it was starting to take a toll on me physically too. They always replied that they would get me help but it never came. Finally, after I had mostly worked on my own for at least 3 years, I started being late, having time off due to exhaustion and illness, and they decided I needed help. It was too little too late though. My shoulders, wrists, knees, back, hips and feet had all been pushed to their limits.
I had had spinal injections for crushed disks/degenerative disc disease, the maximum amount of cortisone injections for shoulder impingement syndrome and knee joint pain, carpal tunnel syndrome in both wrists, and I still was trying to do what I could at work while my manager kept giving me shit for time off and lateness. I was completely knackered, and I also started noticing that when i was going to the gym after work, that I suddenly couldn't do reps like I had before and that my muscle fatigued very very quickly.
It was around this time then that I went to the docs, had all the tests and investigations while still going to work and getting worse, and I was told it was a lack of vit D. I was put on the intense dosage for 7 days and told to take over the counter ones for life. This didnt help the muscle fatigue at all and I kept on at my Doctor to have more tests etc. I was referred to the musculoskeletal department at my local hospital and the consultant there had me have more tests etc and I eventually was diagnosed with FM/CFS in 2020. I didnt go back to work and I was dismissed from my machine technician job in July 2022 after the consulting of, and assessment by their occupational health therapist.
The thing is, I haven't worked since 2020, and I have gotten worse. The muscle fatigue is there when I vac up the house or even while doing something as simple as folding clothes or washing dishes. I was a strong guy and I am well built, I could lift 100+ kilograms in one go, but if you gave me something to hold around 1 kilogram for even a few seconds, my muscle strength drains in seconds and my arms/hands get cramped up. Even after ive told my consultant/GP this, I am told that it is a symptom of fibromyalgia and will not get better. I think there is something more at play here, and I have stressed this to my consultant during the last phone conversation we had. He has referred me for full blood count tests again and also for more MRI and CT scans and X-rays as well. He says that he hopes to find a cause and that this will show something up and enable him to give me some answers.
Just to say thank you - I found it really helpful to read your story as it resonated with me in so many ways. I deliberately didn't say (wanted people not to be distracted by this) that I have been under an endocrinologist consultant for a few years now and the possible diagnosis of fibromyalgia by a rheumatologist who saw me once for no more than ten minutes just doesn't quite ring true for me. Keep pushing for more investigations! It's exhausting and can be dispiriting, but it's you and your health that is at stake.
Hekkla some specialists know more than others. Probably dealt with more patients? Probably researched til they eat, drink, sleep the knowledge. The more they come across in patients the more they learn to the point where they know exactly what to look for and where. Diagnosed me in a matter of minutes after me going thru years and years of tests and negatives, and arthritis clinic was getting fed up of seeing me just for negative results. Not nice being made out a liar. ANYWAYS, this specialist that had come from outa town, read all my notes, LISTENED to what i was saying, then asked me stand up and started gently pressing, what i now know are tender/trigger points. Think im 2 short of the whole lot, ticked all the boxes barr 2 of them. He asked if i were ok, i nodded So he bent my arms (as if i were going go choo chooooo) He gently touched my elbows and i went thru the roof and came down crying my eyes out i was in a world of pain. He sat me down saying i know the name of your pain but theres no cure, but can be treated with light exercise and the right drugs. SO YOUR 10minute examination is totally believable. He wanted to give me leaflets to look at and read on the condition saying i have probably had it a good 15 yrs previous, (which sounded about right) i was always out in all weathers on motorbikes and camping. So all those yrs i put it down to the cold,damp weather and bikes. Never said anything afraid folks would stop my biker life. When all along it was the start of something so much bigger.
I very much understand what you are saying and that kind of pain sounds debilitatingly awful. Unfortunately my experience was somewhat different. She did take me through some movements and also put pressure on some parts of my body, but I was fine, there was no pain, no wincing, just fine. Originally I was meant to see another consultant and he was off ill, so she may well have been landed with all his patients at short notice and was trying to clear through a backlog, so may have felt she had to keep an eye on the clock for the sake of other patients. The areas that really trouble me (thighs and upper arms) she never looked at or inquired about which is why I feel I hadn't been fully listened to by her. I am under investigation for Cyclical Cushing's Disease (a very rare form for an already rare illness) and my main consultant is wanting to rule out all kinds of other conditions in order to be sure that his path of investigation is correct which is how I ended up being sent to a rheumatologist. I don't want to discount the possibility of having two illness somehow colliding in my body (not that I would want that, but I have to be realistic), yet there are just too many things that don't quite fit a fibromyalgia diagnosis which is why I want to find out more about it.
Hi, I had something very similar regards exersize. I uesd to go to the gym two or three times per week plus going running. I found myself getting increasingly fatigued along with an increasing pain level. After going the usual route of doctors and consultants I was diagnosed with Fibro. I can no longer do the type of exersize I used to. But, instead I walk as much as possible and do yoga style stretches to prevent muscle cramps
It does help. But you need to pace yourself, taking rests before you get tired not after otherwise the pain kicks in, plus exhaustion. That applies to everday tasks not just exersize. Its frustrating, but the only way to avoid 'crashes'.
Unfortunately, it does sound like Fibro. I have found myself losing fitness for some years now, and no matter how you try it won't come back.
Like you, I was a very active and sporty person, also a dancer. Pushing yourself to try to regain fitness doesn't work, I have found from trying. You can try to keep the fitness you have, but I doubt you can regain the loss of your previous abilities.
Having said that, it is important to keep active, even if walking to the shops is all you can do.
I don't know your age, but if you are in your late 40's it will be time to consider the menopause, and start to check with your doctor about vitamin and mineral supplements, particularly Vitamin D, which is essential for bone strength as you age. Weak bones can increase the pain you feel, as well as causing osteoporosis.
I deliberately did not mention in my original post that there's a strong suspicion that I might have a very rare endocrine disorder (Cyclical Cushing's Disease). If I have fibromyalgia on top of it then the two would in some sense be pulling in different directions as far as exercise and muscle strength is concerned, and so I am trying at the moment to work out what belongs where and how best to deal with it all.
I will get pain and fatigue on the cellular level. This I’m thinking is related to thyroid (in my case lack of) where you are not getting enough T3 in my case. Body not converting enough T4 to T3 (thyroid hormones). Fibromyalgia loves to invite other health conditions to the body which all go into making your once healthy body into one of pain, fatigue, brain fog and other woes. It is very common to have other health conditions join in with the fibromyalgia.
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Another great wonder of life !
MY GP IS SO WONDERFUL :)
Wondering if anyone can offer me some help and/or advice?
Hiya, I was wondering if anyone is on gabapentin?
