Need some advice with neuromuscular problems

[JS834]

Since around 2016, I've been experiencing a nonstop torrent of neuromuscular problems. Every day I wake up with worn down/tired muscles and what can only be described as weird nerve problems all over my body; it usually recovers or improves somewhat by the end of the day, but then it regresses to the same parlous condition by the time I wake up. It's been affecting my stomach and bowel function as well, plus there's been tingling, chills, a sore throat, overly sensitive skin (including sensations lingering after touch or contact), acid reflux, worsening brain fog, anxiety, and much more besides. It feels like I fell into some kind of permanent post-exertional malaise hole. Before 2016, my muscles tired easily, but they usually recovered reasonably well after a workout. Since then, they constantly feel strained, weak, and ready to cramp up. This seems to be a genuinely new progression in my condition. All this began after a workout, and my muscles have since never recovered properly. Some days I have trouble walking long distances or standing for long periods of time; I was at one point diagnosed with mild ataxia.

It occurred to me that these symptoms sound a lot like multiple sclerosis; however, I had an MRI done in 2018, which fortunately came back negative. In 2019 I was diagnosed with a Vitamin D deficiency (everything else they checked came back normal). I began taking supplements, my condition radically improved, and I thought the mystery was solved, but since reaching a peak in early 2021 my condition has been all over the place, sometimes improving but often regressing. At this point I am not sure what to even think, except that sleep seems to play a major role in the cycle of symptoms. Unlike, say, MS, my condition doesn't feel degenerative. I can even feel when it's improving, because the weird neurological discomfort starts to clear up. Sometimes my limbs are freezing cold, almost feeling hypothermic (like a biting sensation), early in the day but then start to retain more warmth later on. Does anyone have an idea about what might be happening? It seems absolutely bizarre and perplexing to me. I was thinking along the lines of an autonomic nervous system problem, but then why the extreme muscle issues?

 

[hapl808]

I may be biased because I have something similar - but I pushed through a few aggressive workouts and injuries and got much worse.

My ME/CFS started after an illness in SE Asia in the 90's, but was mostly fatigue and GI and other stuff.

Then around 10 years ago, started getting muscular problems which worsened significantly in 2014 after a workout. Then improved until a minor injury in 2015. Took a year to recover, then pushed myself too hard and basically declined since then.

Any PEM crashes (which happen almost daily) seem to trigger awful acid reflux. Constant brain fog. If I get 'cold', can easily start to feel a weird stomach tightness and shaking as if I'd gotten incredibly chilled, but usually just if heat is set too low. Always heavy and tired legs, difficulty going up stairs, etc. After 2016, started having to use crutches, etc.

I'd say for me it's likely the long term damaging effects from an enterovirus picked up in SE Asia. People don't realize you can get long term damage that only starts being apparent years later. Look up 'Post Polio' and see if the symptoms ring true. The usual onset is supposedly 15-40 years after the initial infection - my guess is that other enteroviruses might cause the same damage.

 

[linusbert]

I began taking supplements, my condition radically improved, and I thought the mystery was solved, but since reaching a peak in early 2021 my condition has been all over the place, sometimes improving but often regressing.

can you tell what you did take?
if things work for some time but then do not anymore, it might be cofactors which have run out.

did you try one of those refeeding protocols? thiamine? b12?
your symptoms look a lot like b1 deficiency.

Since then, they constantly feel strained, weak, and ready to cramp up. This seems to be a genuinely new progression in my condition. All this began after a workout, and my muscles have since never recovered properly. Some days I have trouble walking long distances or standing for long periods of time; I was at one point diagnosed with mild ataxia.

this looks like my story, also happend around 2015/2016.
what helped me a lot (at first) was sugar or whey protein, it solved all muscle problems in minutes and made me more powerful again... also after food it improved, i had to eat like all 2-3 hours.
i can just suggest to you very strongly to never overexert again, never push it! and dont do anything which leaves you knowingly worse after a few days. do not listen to any doctor who says to push through, no matter how much you might believe him in the moment. i did and i had 3 crashes after every doctor visit , crippling me from beeing able to walk 2x 20 minutes a day, do stuff on my computer to housebound, lying on couch/bed most of the day.

also let doctor check your CK and LDH(-5) values. those suggest muscle damage or even a myopathy going on. i ended up with a progressive metabolic myopathy diagnosis.

 

[Wishful]

ME affects various neural functions, unique to the individual, so this could simply be one of those "this is how your ME works" situations. My ME gives me aches/pains in specific parts of my body without any physical reason for them, and the aches are blocked by LDN (more effective sublingual), so I assume that specific brain cells are responsible.

linusbert's suggestions of checking for muscle problems is good, since that is a possibility, but if no problems are found, ME neurological problems are a likely answer.

 

[redsun]

Since around 2016, I've been experiencing a nonstop torrent of neuromuscular problems. Every day I wake up with worn down/tired muscles and what can only be described as weird nerve problems all over my body; it usually recovers or improves somewhat by the end of the day, but then it regresses to the same parlous condition by the time I wake up. It's been affecting my stomach and bowel function as well, plus there's been tingling, chills, a sore throat, overly sensitive skin (including sensations lingering after touch or contact), acid reflux, worsening brain fog, anxiety, and much more besides. It feels like I fell into some kind of permanent post-exertional malaise hole. Before 2016, my muscles tired easily, but they usually recovered reasonably well after a workout. Since then, they constantly feel strained, weak, and ready to cramp up. This seems to be a genuinely new progression in my condition. All this began after a workout, and my muscles have since never recovered properly. Some days I have trouble walking long distances or standing for long periods of time; I was at one point diagnosed with mild ataxia.

It occurred to me that these symptoms sound a lot like multiple sclerosis; however, I had an MRI done in 2018, which fortunately came back negative. In 2019 I was diagnosed with a Vitamin D deficiency (everything else they checked came back normal). I began taking supplements, my condition radically improved, and I thought the mystery was solved, but since reaching a peak in early 2021 my condition has been all over the place, sometimes improving but often regressing. At this point I am not sure what to even think, except that sleep seems to play a major role in the cycle of symptoms. Unlike, say, MS, my condition doesn't feel degenerative. I can even feel when it's improving, because the weird neurological discomfort starts to clear up. Sometimes my limbs are freezing cold, almost feeling hypothermic (like a biting sensation), early in the day but then start to retain more warmth later on. Does anyone have an idea about what might be happening? It seems absolutely bizarre and perplexing to me. I was thinking along the lines of an autonomic nervous system problem, but then why the extreme muscle issues?

Its interesting you mention vitamin D causing radical improvement. Vitamin D can have some beneficial effects on muscle metabolism, but one other thing it does is it will suppress hepcidin which will dramatically increase iron absorption from food. Cold extremities and just being intolerant to cold in general, muscle weakness, anxiety, cognitive dysfunction (brain fog), can be due to iron deficiency without anemia showing on a CBC. The symptoms are caused by reduced iron levels in muscle cells and brain tissue which compromises oxidative metabolism (making ATP using oxygen) even if hemoglobin is normal because iron is needed for multiple enzymes in the krebs cycle and electron transport chain to work. Iron deficiency will reduce levels of these enzymes.

This may make you exercise intolerant generally speaking. But basic things like walking and standing can be difficult because your slow twitch fibers in your legs, back, and abdomen (so you walk and stand upright) which are what you use for this form of movement are very dependent on oxidative metabolism. They will tire easily if something is wrong with oxidative metabolism. Iron deficiency without anemia causes cold extremities due to reduced heat production which depends on iron. The reason you warm up as the day goes on is likely because of eating. But you should not be so unusually cold just becauss you dont eat.

Are you still taking vitamin D? It may be a good idea to get an iron panel done to rule to rule out iron deficiency if you never investigated this angle.

 

[LINE]

Have you tried any magnesium?

What about amino acids such as BCAAs (Branched chain amino acids), or other nutrients?

 

[hapl808]

I realize those were for OP, but I've tried magnesium (glycinate, threonate, malate), vitamin D, iron, benfotaimine, methyl B, and a million other things. Also checked stuff like carnitine panels, CK levels (because I had bloody urine once which is often a sign of rhabdo), etc. Unfortunately nothing really helped me - same muscular issues, strange cold sensitivity, exertion acid reflux, and so forth.

Just putting it in here if other ideas - for me I'm leaning toward irreversible enterovirus damage exacerbated by too much physical exertion.

 

[Atlas]

This seems to be a genuinely new progression in my condition. All this began after a workout, and my muscles have since never recovered properly.

Yeah, to me this just sounds like your version of PEM. Like you said, you're in a PEM hole. To stabilize, you need to pace yourself within your new limits.

Like you said, the quality of sleep affects your symptoms; the reverse is also true. That is, PEM affects your quality of sleep. Indeed, for me a terrible sleep is often the first sign I've exceeded my energy envelope.

Overdoing it too much can cause long term relapse, and in my experience the more severe you get the more symptoms show up.

My rapid slide from mild to moderate to severe was also triggered by intense and exhaustive physical activity (over 2 days).

Waking with tired/sore muscles which can feel a bit better as day goes on — typical with ME.
Chills — I also get when I overdo it. Prob related to POTS/dysautonomia. (Which can be a downstream effect of ME).
Tingling — prob small fiber neuropathy, common with ME. I get temperature dysregulation (cold extremities) but without tingling.
Stomach and bowel function changes — typical with ME.


Only thing I'm not sure if is normal for ME is acid reflux.

I was thinking along the lines of an autonomic nervous system problem

It is. The WHO classifies ME/CFS as a disease of the nervous system. That doesn't mean that it is the root cause, but undoubtedly the ANS is involved.

 

[Judee]

Its interesting you mention vitamin D causing radical improvement. Vitamin D can have some beneficial effects on muscle metabolism, but one other thing it does is it will suppress hepcidin which will dramatically increase iron absorption from food.

Are you saying the same thing as this site?: https://anemiacentral.com/vitamin-d-and-iron/

"In a nutshell, when hepcidin goes up, iron absorption goes down and vice versa. How does Vitamin D fit into this? Vitamin D is one of the few nutrients that can reduce hepcidin levels and allow more iron to be absorbed."

I'm just needing to ask because inverse relationships have the potential to easily and massively confuse me and I do Vitamin D3 and Vitamin C so am trying to figure out iron needs and how all these work together. I also have muscle weakness issues.

Thank you.

 

[redsun]

Are you saying the same thing as this site?: https://anemiacentral.com/vitamin-d-and-iron/

"In a nutshell, when hepcidin goes up, iron absorption goes down and vice versa. How does Vitamin D fit into this? Vitamin D is one of the few nutrients that can reduce hepcidin levels and allow more iron to be absorbed."

I'm just needing to ask because inverse relationships have the potential to easily and massively confuse me and I do Vitamin D3 and Vitamin C so am trying to figure out iron needs and how all these work together. I also have muscle weakness issues.

Thank you.

Yes. Vitamin D will increase iron absorption by reducing hepcidin levels.

 

[Zebra]

i ended up with a progressive metabolic myopathy diagnosis.

Would you be willing to share the name of your metabolic myopathy?

A while back I was tested for Pompe Disease (adult-onset), which seemed like a perfect fit, but genetic test came back negative.

Same story for Fabry's Disease.

 

[linusbert]

Would you be willing to share the name of your metabolic myopathy?

A while back I was tested for Pompe Disease (adult-onset), which seemed like a perfect fit, but genetic test came back negative.

Same story for Fabry's Disease.

sadly i cannot share, because no concrete one was diagnosed, they only suspect it. its "suspected metabolic myopathy". clinic told me to do genetic testing and nothing else. but they did not tell me what genes to test and my doctor doesnt know either. so nothing is tested besides the initial 10 genes for cpt2 etc. which all are negative.

fabry and pompe have been both negative for me.

also my own gene testing with the likes of 23andme or nebulagenomics did not reveal anything.

 

[Gingergrrl]

I was thinking along the lines of an autonomic nervous system problem, but then why the extreme muscle issues?

Have you been tested for any autoantibodies (for autoimmune neuromuscular diseases)? Is your ANA Panel normal?

 

[JS834]

Thanks everyone for the replies. I haven't felt good this week and it might take me awhile to respond.

can you tell what you did take?
if things work for some time but then do not anymore, it might be cofactors which have run out.

did you try one of those refeeding protocols? thiamine? b12?
your symptoms look a lot like b1 deficiency.



this looks like my story, also happend around 2015/2016.
what helped me a lot (at first) was sugar or whey protein, it solved all muscle problems in minutes and made me more powerful again... also after food it improved, i had to eat like all 2-3 hours.
i can just suggest to you very strongly to never overexert again, never push it! and dont do anything which leaves you knowingly worse after a few days. do not listen to any doctor who says to push through, no matter how much you might believe him in the moment. i did and i had 3 crashes after every doctor visit , crippling me from beeing able to walk 2x 20 minutes a day, do stuff on my computer to housebound, lying on couch/bed most of the day.

also let doctor check your CK and LDH(-5) values. those suggest muscle damage or even a myopathy going on. i ended up with a progressive metabolic myopathy diagnosis.

After the deficiency was discovered I only took vitamin D supplements. But lately over the past few weeks I've been taking a supplement formula with lots of different nutrients, including thiamine and B12, and I think it's having a positive effect, which suggests to me that there was something else wrong as well. However, progress is still far from linear. The past few days I've been waking up with extreme soreness in my muscles, and I know I'm in for a bad day. It's not just a matter of overly sensitive muscles which are worsened by my sleeping position, however, because my digestion becomes much worse as well. After a single meal I feel stuffed for the rest of the day, like food isn't moving properly through my system. Neurological problems also become worse (I wish there were words in the English language to describe it - I've tried and failed on multiple occasions to articulate it, which is why it would be useful to understand what's happening physiologically).

I had my CK checked once back in 2019. It was 64 IU/L - a little low but still within standard range. My LDH has never been checked. I should also mention that ibuprofen is the only medication I've found, besides the vitamin D, that really helps. It seems to facilitate muscle recovery during the day.

Have you tried any magnesium?

What about amino acids such as BCAAs (Branched chain amino acids), or other nutrients?

My magnesium seemed normal. As of last October, it was 2 mg/dL. I haven't tried to take individual amino acids yet though.

enerally speaking. But basic things like walking and standing can be difficult because your slow twitch fibers in your legs, back, and abdomen (so you walk and stand upright) which are what you use for this form of movement are very dependent on oxidative metabolism. They will tire easily if something is wrong with oxidative metabolism. Iron deficiency without anemia causes cold extremities due to reduced heat production which depends on iron. The reason you warm up as the day goes on is likely because of eating. But you should not be so unusually cold just becauss you dont eat.

Are you still taking vitamin D? It may be a good idea to get an iron panel done to rule to rule out iron deficiency if you never investigated this angle.

I had my iron levels checked last October. It was 52 ug/dL at that particular time, but my Transferrin Saturation was 16%, apparently slightly slow. I am no longer taking vitamin D supplements, because levels seemed to be a little high.

 

[JS834]

Yeah, to me this just sounds like your version of PEM. Like you said, you're in a PEM hole. To stabilize, you need to pace yourself within your new limits.

Like you said, the quality of sleep affects your symptoms; the reverse is also true. That is, PEM affects your quality of sleep. Indeed, for me a terrible sleep is often the first sign I've exceeded my energy envelope.

Overdoing it too much can cause long term relapse, and in my experience the more severe you get the more symptoms show up.

My rapid slide from mild to moderate to severe was also triggered by intense and exhaustive physical activity (over 2 days).

Waking with tired/sore muscles which can feel a bit better as day goes on — typical with ME.
Chills — I also get when I overdo it. Prob related to POTS/dysautonomia. (Which can be a downstream effect of ME).
Tingling — prob small fiber neuropathy, common with ME. I get temperature dysregulation (cold extremities) but without tingling.
Stomach and bowel function changes — typical with ME.


Only thing I'm not sure if is normal for ME is acid reflux.




It is. The WHO classifies ME/CFS as a disease of the nervous system. That doesn't mean that it is the root cause, but undoubtedly the ANS is involved.

Here is why I think there is something different occurring: I have lived with CFS for more than 10 years previous to this, and though there some similarities from before, it also feels quite different. First, because it seems to be disconnected from my actual activity levels. The really bad periods aren't triggered by exercise; they don't seem to be triggered by anything at all, except it's always during sleep where things really regress. But when things are improving I can exercise to a limited degree with no penalties whatsoever. Second, some of the neurological symptoms are strange and new, and they occur in such a manner that suggests to me that there is a new underlying change in my condition. One of these posts I would really like to articulate some of the unusual patterns and sensations I've noticed, because I've never come across an explanation or anything that quite matches up to it. Finally, the way it progressed between 2016 and 2019 made it feel like some sort of progressive condition - again, why I was very afraid it was MS. The sudden improvements I experienced after taking vitamin D supplements also suggests that that this was at least partially implicated in the problem - but it remains an open question of why things just stopped improving suddenly.

Have you been tested for any autoantibodies (for autoimmune neuromuscular diseases)? Is your ANA Panel normal?

I was apparently tested for 11 different auto-antibodies, including SS-A, SS-B, Sm, RNP, SmRNP, and Scl-70. All came back negative.

 

[linusbert]

food isn't moving properly through my system. Neurological problems also become worse (I wish there were words in the English language to describe it - I've tried and failed on multiple occasions to articulate it, which is why it would be useful to understand what's happening physiologically).

try google translate it works great
https://translate.google.com/

if things go weird with nerves, it could be a cholin or a methylation thing. it could also still be a b1 deficiency.
remember that b1 needs potassium.
i would check out the refeeding and methylation threads in this forum.

 

[Violeta]

@JS834, it might be a neurotransmitter issue. You can get catecholamine levels checked, but I would think you would need a very knowledgeable doctor because sometimes it's not the levels of neurotransmitters but a synaptic problem. Also there can be autoantibodies involved.

 

[Gingergrrl]

I was apparently tested for 11 different auto-antibodies, including SS-A, SS-B, Sm, RNP, SmRNP, and Scl-70. All came back negative.

If they tested you for those 11 autoantibodies, it makes me think that your ANA Titer came back positive which automatically triggered the next step of testing for those autoantibodies (vs. if your ANA Titer had been negative, they would have stopped at that point w/that blood sample). I don't know that for sure but that is often how labs process ANA titers (in the US).

Do you know if your ANA Titer was positive and if so at what level and pattern? It could still be worth testing for other autoantibodies that can affect neuromuscular issues such as paraneoplastic autoantibodies (just to rule this in or out).

 

[cheeseater]

JS834 I do not mean to minimize your symptoms at all, but something to consider is an electrolyte imbalance or deficiency. People often report the feeling of nerves misfiring when they are electrolyte deficient. They also report those sorts of feelings before they pass out. Just a thought. If that was the case, the question would then become why an electrolyte imbalance? Probably a longshot...

 

[Seadragon]

Since around 2016, I've been experiencing a nonstop torrent of neuromuscular problems. Every day I wake up with worn down/tired muscles and what can only be described as weird nerve problems all over my body; it usually recovers or improves somewhat by the end of the day, but then it regresses to the same parlous condition by the time I wake up. It's been affecting my stomach and bowel function as well, plus there's been tingling, chills, a sore throat, overly sensitive skin (including sensations lingering after touch or contact), acid reflux, worsening brain fog, anxiety, and much more besides. It feels like I fell into some kind of permanent post-exertional malaise hole. Before 2016, my muscles tired easily, but they usually recovered reasonably well after a workout. Since then, they constantly feel strained, weak, and ready to cramp up. This seems to be a genuinely new progression in my condition. All this began after a workout, and my muscles have since never recovered properly. Some days I have trouble walking long distances or standing for long periods of time; I was at one point diagnosed with mild ataxia.

It occurred to me that these symptoms sound a lot like multiple sclerosis; however, I had an MRI done in 2018, which fortunately came back negative. In 2019 I was diagnosed with a Vitamin D deficiency (everything else they checked came back normal). I began taking supplements, my condition radically improved, and I thought the mystery was solved, but since reaching a peak in early 2021 my condition has been all over the place, sometimes improving but often regressing. At this point I am not sure what to even think, except that sleep seems to play a major role in the cycle of symptoms. Unlike, say, MS, my condition doesn't feel degenerative. I can even feel when it's improving, because the weird neurological discomfort starts to clear up. Sometimes my limbs are freezing cold, almost feeling hypothermic (like a biting sensation), early in the day but then start to retain more warmth later on. Does anyone have an idea about what might be happening? It seems absolutely bizarre and perplexing to me. I was thinking along the lines of an autonomic nervous system problem, but then why the extreme muscle issues?

I get a lot of these neurological/neuropathic type symptoms you describe. An immunologist/neurologist told me these symptoms are due to misfiring nerve signals due to immune system dysfunction affecting the CNS.