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Burning pain/muscle weakness

Hello. Been suffering from a weakness that progressed over years from mild to disabling. The weakness is like the muscles just don't get enough nutrients/fuel to keep working like normal muscles should- they run out of stamina very quickly now, and I have to rest for a couple hours in order to get enough energy to take me until bedtime. Things that shouldn't hurt, like typing this out, cause a muscle burning pain that is like lactic acid burn where you overwork muscles and the burning pain will start and won't let up till you stop and rest those muscles. I have several,other symptoms which I'll list:
1: brain fog

2: trouble concentrating

3: heat cold intolerance (ill,discuss this below)

4: jaw muscles get weak and cramp when trying to chew (but only at certain times when I'm really run down)

5: neck will hurt so bad I have to lay head back on couch to take pressure off the muscles- again, a burning pain

6: forearms, calf muscles most affected besides the neck- the muscles fatigue extremely quickly (like jusy brushing teeth will cause them to burn/pain)

7: extremely exhausted all the time. I sleep 9 hours at night, th3n 4-5 hours in after noon just to make it to bedtime at night again.

8: peripheral neuropathy

9: my temperature regulator is broken (I'm cold most of the time, even in summer, but will overheat all of a sudden and get very weak and sick to stomach, and shaky)

Whatever is going on causes me to become run down so badly that it takes me a few days to recover back to my usual crappy feeling self. It's like having the flue 24/7 in regards to the weakness, exhaustion, fatiguability, and muscle pain/weakness. Chores exhaust me.

I've always had my left eyelid droop when my condition worsened for whatever reason. Phots as a kid show the lid drooping.

Docs have me down as having some kind of myopathy, and chronic fatigue with possible fibromyalgia, but I have my doubts. I have none of the trigger points or tender points for those conditions. I've been trying for 25 years to find out what was going on, only to,be frustrated with all tests being in the normal range. Even the electrode in muscle tests.

I thought that my issue was a breakdown in how the muscles use the fuel from food that is supplied, and that I would run out of adequate fuel to keep the muscles going, but now I'm not so sure as again, tests always show everything working as it should. I didn't realize that MG would,cause muscle pain because of,nerve issue, and think that maybe this might explain the pain better especially where my tests usually come back normal?

I have a real,hard time with heat coupled with humidity- I get very weak and shaky, and have a hard time breathing, and just feel really off, like something is just really wrong. As a younger person I handled heat, hu idity and cold just fine- working outside in heat humidity was never a problem- then this muscle issue hit and since then just sitting around in heat and humidity is enough to make me feel really awful.

Does any of this sound like it could be MG (I know the droop eyelid and cramping jaw muscles when chewing do, but those could be related to other conditions too like fibro, if infact I do have that)

Thanks in advance, Nazareth

  1. Your symptoms sound a lot like mine and I was recently diagnosed with seronegative generalized MG. I had an EMG and nerve conduction studies and it was the nerve conduction studies that finally pointed toward an MG diagnosis. I'd spent a decade going to several neurologists, rheumatologist, and had many different scans and tons of blood work before it was finally diagnosed. In my case the trick was to go to the right doctor. He's a neuromuscular specialist at USF department of neurology in Tampa Florida. Good luck and I hope you feel better soon!

    1. True- or they can rule it out too- and id be more confident that it must be something else-

    2. Thankyou soo much

  2. It all sounds very much like my experience with MG. People with Myasthenia have trouble clearing muscle metabolites. I've found mushrooms like Cordyceps Militaris to be very helpful for that, as well as making sure to balance my electrolytes and drinking plenty of water. Ashwagandha is my best help for the constant pain of MG.

    1. I know it’s awful energy then nothing muscles don’t want to cooperate I feel you some days are better than others I can’t hardly move when I get in bed or my leg thighs back sides arms lock up terrible cramps painful I feel tortured sometimes

    2. yes it is awful, especially when life comes to a screeching halt at. Fairly young age (I was 30 when. It began). People can't see anything wrong with us, so they make statements like "he's fine, he just doesn't want to work" or "look at him, mowing g the lawn, but can't hold a job" (little do they onow, or care, that for 2-3 days after doing things like mowing the lawn, our bodies suffer and have to recouperate). I try to tell folks that it is like,having the flu 24/7, some days will be better, some not so good. I was just at the docs yesterday znd he mentioned that what is happening might be because of I flamation due to my crohn's disease, and that there are new drugs now that aren't as harsh and could help tame that inflammation and muscle weakness caused by the inflamatio. If that is what it is. I won't see my gastro doc till next month, but am I terested in getting on the meds to see if it helps the sy proms I listed in my original post. If it does, then I will have gone 30 years in pain, exhaustion etc needlessly as I couldmhave been on meds all along (provided it is what is causing symptoms of course)z- maybe I'm on the right track now... I hope. It's been not very pleasant living with the symptoms, and very frustrating not knowing what is causing it. It will be pretty hard to take though if the meds don't help because it wasn't what is causing the symptoms.


  3. Hello- thanks for responding- Yes- i know- i wasn't lookign for a diagnosis- was just wondering if any of the symptoms sound liek maybe they would lean towards MG or not- not sure im going in the right direction- something is definitely affecting my muscles badly-


    thnak you for the l inks, i will check those out

    1. Hi , sorry to hear you are experiencing these symptoms. We are not medical professionals, therefore we cannot offer medical advice via the internet. Hopefully others in our community will chime in with their experiences that may be helpful. Seeking a second opinion could be an option as well. I included an article on the topic - https://myasthenia-gravis.com/living/getting-second-opinion. I also included some more general information on MG - https://myasthenia-gravis.com/basics and https://myasthenia-gravis.com/symptoms and https://myasthenia-gravis.com/doctor. I hope you can get to the root cause of your symptoms. Sending lots of positive vibes your way. Kindly, Jessica, MG Team Member

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