Pain is not one of my usual ME/CFS symptoms. When I overexert myself physically and subsequently have post-exertional malaise, my muscles (especially those which I used the most) feel leaden, sore, but not stiff, and they burn. I can relate to the often used description of feeling “poisoned”. This kind of burn is very similar, if not identical, to the one I would get from doing as many repetitions as possible of a bodyweight, dumbbell or barbell exercise, for example a bicep curl. I personally call it a “lactic acid burn”. However, I don’t consider my muscles to be particularly painful when they burn. Moving hurts because they feel sore, but it doesn’t make me let out a “ouch” as though I were pressing on a cut, a burn or a broken arm with a finger. Is this kind of “lactic” burn considered as myalgia and/or pain? (In other words, I don’t know if I should say I have pain or not when my muscles burn.)
That is the myalgia of myalgic encephalomyelitis. I feel as if there is acid in my muscles and bones constantly and it is one kind of pain. Without my painkillers I can't think for it. There are other dimensions to the pain though with the muscles feeling sore to the touch and aching with random nerve pains like electric shocks run through them. Swollen lymph glands in my neck (and under my arms) feel sore but also distort the muscles so they hurt as if I have slept wrong.
I can't answer this either, I just wanted to say that I have this too. However, in my case this doesn't happen when I do something on an "OK" day. I only experience this kind of muscle burn when I overexert myself on an already bad day. This is how I'm sure this can't be the result of deconditioning or similar. I can do the same thing on an "OK" day and feel no such burn, then a few days later do it on a bad day and end up with it, and it is really painful and goes on for days. I always thought maybe it is because my muscles/energy production function is considerably worse on bad days and my muscles may have to work harder to do the same thing on these days. (I also definitely feel physically slower and my limbs/body feel heavier etc on these days to begin with, so it would make sense.) But I'm just guessing. Otherwise, I'm one of the painless types (I do have headaches, painful lymph nodes and this muscle burn though). So usually I say I'm painless because none of the types of pain I feel are similar to say fibromyalgia. But I often wonder about this too, just like you.
And me. Thought I always have it in my quad (thigh) muscles, no matter what I do or don't do. As soon as the muscle is relaxed completely, the burning starts. If I tense them to stand up, 90% of the pain goes away until I relax them again. This means sleep without painkillers is essentially impossible. I also have it in my intercostal muscles, the ones between the ribs that are used for breathing. I didn't realise this for years, though, because I don't tend to stop breathing for very long! I only really feel the pain—which is significant—when I touch them with my hands or catch my ribcage against something. The fact that severe pain only happens, at least to me, when the muscles are relaxed is one of the reasons I'm puzzled that no-one can work it out. If you understand physiology, surely that must tell you something. Apart from painkillers, the only way to relieve it is pressure. I can't lie face down for more than about 30 seconds because it hurts my neck so much, but for those few seconds it does reduce the leg pain quite a bit. Edited to clarify... Although the pain stops as soon as I tense my leg muscles, it would come back if I kept them working in order to walk for more than a few metres. I can't do this anyway, which is why I describe the pain as stopping when the muscles are tensed—I just don't reach the stage of burning pain during use.
I get exactly the same thing and always have for many years. My calves through to under shin bones have always been the most regular for the totally inflamed muscle, shoulders/neck potentially too (although that could be other things, where the calves was so distinctive when it first started as as an athlete before it was an 'unachievable' level with exercise level of muscle ache given what I had done before and was so 'fit' from such a small by comparison e.g. driving for a bit exertion). These are 'ouch' and affect how you can move or lie or sit etc. In my arms it is almost like they are dead weight achy and a bit different, but I get what feels like poison (lactic acid but in a way others wouldn't know it) down shoulder shooting pain which seems cumulative as well as 'reaction to one exertion'. At the same time my arms are such I can tend not to even be able to 'hold them' myself and have to use pillows under them to support their own weight however I am sat or lying. In other areas like feet, ankles, hands, wrists it feels like everything is inflamed and stiff inside and I get more clickiness round joints (such as move thumb back and wrist or elbow clicks) and the need to chase round for cool bed sheets for any kind of relief on front of ankle and wrist. But these are less obvious related to just one exertion and happen for lots of things.
If it's a muscle and it is hurting - that is myalgia. There's no limitation on the type of pain, nor on the cause. What may be interesting is to tease out if possible, whether it is simply muscle or if other types of connective tissue (tendon, ligament, cartilage, skin etc) that are involved. This is very much an unresolved area, in practical terms I think it's enough to know that connective tissue pain comes with ME/CFS and each individual likely has their own suite of pain and discomfort, mediated by individual pathophysiology and individual perception. FWIW my individual experience is that what I associate with "lactate burn" is present somewhere in the main muscle masses most of the time irrespective of any activity, as is an RSI type pain around joints. I'm also prone to what I interpret as "muscle tears" which are extremely painful, of the sort that involve involuntary yelps (actually a lot of swearing) if moving in the wrong way until the particular tear settles down or repairs itself or whatever - the muscles of the upper back are particularly prone and force me into a good reprise of Charles Laughton's Quasimodo.
You’ll get part of the explanation via Dr. Myhill’s wiki. https://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure. In the paragraph entitled: “Every cell in the body can be affected”, you will learn: “If the body is very short of ATP, it can make a very small amount of ATP directly from glucose by converting it into lactic acid. This is exactly what many CFS sufferers do and indeed we know that CFS sufferers readily switch to anaerobic metabolism. However, this results in serious problems - lactic acid quickly builds up especially in muscles to cause pain, heaviness, aching, and soreness (lactic acid burn and lactic acid in the heart gives the symptom of angina). When mitochondria function well, as the person rests following exertion, lactic acid is quickly converted back to glucose (via pyruvate) and the lactic burn disappears. But this is an energy-requiring process! Glucose to lactic acid produces two molecules of ATP for the body to use, but the reverse process requires six molecules of ATP. If there is no ATP available, and this is of course what happens as mitochondria fail, then the lactic acid may persist for many minutes, or indeed hours causing great pain. (for the biochemists, this reverse process takes place in the liver and is called the Cori cycle).”. I take Levocanil, D Ribose & Baclofen to fight it off. The more you go on overstepping your limits the closer to cramps you will get. You should move from burns to contracture to cramps and it is myalgia.
I also have this when I overdo. The burning I can handle but it always comes with the feeling of draining. As if my muscles are..pouring out or something. It's an ugly, nasty feeling.
I don't always get it with PEM, but have been the last few times I've overexerted. It's also followed by my skin burning (strongest in the muscles I've used most, but my skin is hot to touch all over). As a kid I would get burning skin so that I could not have my hand on my arm because it hurt so much, never figured out what it was and I did outgrow it, though it did come back during my migraines.
Scientists have shown that it is not merely lactic acid concentration that causes this muscle pain, but instead the stimulation of a combination of receptors in muscle afferents: https://physoc.onlinelibrary.wiley.com/doi/abs/10.1113/expphysiol.2013.075812
Thank you @Snow Leopard for this resource. I am plagued by a recent and ongoing decrease in thigh muscle function (heaviness, burning, aching) during my walks in nature. My pain drugs and over the counter treatments: capsaicin cream (hot peppers), tizanidine, hot packs, hot bath friction massage of thigh muscles, occasional fractional dose of a benzo (clonazepam), I used to take low-dose methadone, which really didn't solve the pain, but did knock me out. I am contemplating medical marijuana or asking for an opioid like tramodol (and being made to feel like a criminal--a drug contract and frequent office visits). Maybe I need to move closer to the park and embark on experimenting with the drugs on hand. But I am stumped with this new symptom. I apply capsaicin cream to my thigh muscles (and all other FM spots in my back) before a walk, which tones down the sensation of burning but does not relieve the heaviness. And at home, there is burning at rest. I could try D-ribose, I used it 15 yrs ago, with a small effect. What else perhaps? I have to drive to take my desired walk in nature (small hills, tiny really). So I can't take a drowsy med beforehand. If I could walk to the park, I would take tizanidine beforehand. Any pointers or other research gratefully appreciated.
I had no pain for the first 10 years. When I became severe, overnight, from two very big consecutive crashes, I also started getting pain. My pain is exactly how you describe it: a burning sensation in the muscles. During PEM I get bad muscle pain all over my body, but the thighs and arms are the worst. When I don’t have PEM the pain levels are low.
I have the same symptom and question. I don’t know what the correct answer is either. I also liken it to the lactic acid burn of max reps during weight lifting, it’s just now it can happen after trivial activity (such as holding a book to read) and can last for a long time (days on end or more after the exertion). It feels a little different in that I get less of the soreness I would get from exercise, and more of just the burning sensation. And it seems to compound when I have a period of doing more, rather than going away as the muscles build fitness. Whether this is right or not, I don’t categorize it under pain because the feeling is “burn” and not “hurt.” There is a distinction in my mind. I notice if I touch the affected muscle, it doesn’t hurt, it’s just the burning sensation is there, if that makes sense.
@shak8, I’m assuming from your avatar that you are in the United States. if you have Insurance coverage or cost isn’t an deterrent, you might try finding a neuro-muscular specialist at a university teaching medical school. they will be familiar with all sorts of obscure neuromuscular dysfunctions and even genetic testing. the likelihood you are diagnosed are low, but it is an avenue worth exploring. here is a thread here on S4ME about "FSHD", which is a obscure muscular dystrophy. https://www.s4me.info/threads/facioscapulohumeral-dystrophy-fshd.28858/page-2
Well searching on the University of California at San Francisco Medical School, I would have to call them, and it's not warranted I think. My muscle burning at age 73 is probably just a worsening due to many factors associated with FM and aging. It's hard to accept less function as you age when you already have less function. But there it I will do more micro pacing: shorter, slower walks. Massage muscles afterward, ice them, rest days as necessary for recovery. Assess muscle use. Time the walks, find what works on which type of day (good/bad). Thank you for the good advice. I learned something.
That's the key for me. I have ME rather than FM, but the burning is the result of exertion and the best thing for it is rest. Unfortunately I can't rest it away entirely, it comes back. It's just not as bad on rested muscles as on ones that have been used on consecutive days. If it's worse in the summer and you drink tea/coffee, it's always worth trying more hydration and no caffeine. Might even be worth trying hydration and nothing else for a day or two if you can manage it, just to see if it's part of the underlying issue. I'm fond of a caffeinated drink, so I did that—I realised it contributed a bit more than I'd previously admitted to myself. Now, if my muscles are a bit burny but I need a glass of cola to wake my brain up, I always have the same amount of water after it.
@Kitty: I'm a coffee freak (light roast, single origin, currently Ethiopian) and I am forever drinking and refilling my glass of water, so I discount dehydration in my muscles as a cause for burning and heaviness. I am extra hydrated on hot days and take cooling measures. I have knee osteoarthritis and that means that if I don't walk, I will have some pain because the synovial fluid in the knee gets circulated and lubes the joint when walking. So resting is a relative thing. It could be that I am just rebelling at this new lower level of muscle function, a delightful combo of FM and aging. It's an easy reflex to balk at any new aging sign or symptom: "this just cannot be; why can't I do this? I can't believe this, I refuse to believe this." I did get relief yesterday with a fraction of a clonazepam pill (1/16 of a 1.0mg pill). I will try it again, as needed.
I did the same, and even though I don't even have a lot of caffeine, there it was when I stopped. It takes two or three days to feel the full benefit, because there seems to be a bit of a hangover from previous consumption. For me, the biggest impact is on muscle burning at rest, not during use. If I have no caffeine at all during the day, I'll be much more comfortable when I go to bed—the muscles will relax more fully—than if I have a bit of caffeine but mitigate it with extra water. It was a useful finding, because if I have a wildlife survey (which is always going to end with my bloody legs on fire!), I can really help myself by sticking to water all day. For me, complete abstinence, specially if I can keep it up for two or three days, is as effective on that kind of pain-at-rest as tramadol. I stick to water during holidays away from home, and although it doesn't mean my muscles won't burn at all after a day out seeing wildlife, it reduces the it the way a painkiller does. Doesn't mean it will help everyone, of course, but I was surprised. I'd convinced myself for years that I didn't drink enough to make any difference.
Re: Burning thigh muscles after walking: Today @Kitty I walked in the park for 20 min, with some resting, and just standing to interrupt the step, step, step use of the same muscles. Some slow walking as well. Also stood, mostly, for an enjoyable extended conversation x15 min. At home, the heavy, burning legs. Took tizanidine 1.0 mg (muscle relaxant) but it didn't relieve the symptoms in the thighs. What worked for me: Put legs up against door or wall about 70 degree angle while lying flat for a good 20 minutes. To drain any extra fluid, or something that aggravates my already FM-aggravated sensory nerves in legs. Then a heated rice hull sack to tops of thighs while sitting with legs extended and supported x 20 min. Hot bath, very hot, soaking and scrubbing harshly backs of thighs, thigh muscles, shins, calves, tops of feet, using soap that aides the process. SUCCESS! Symptoms relieved.