Has anyone else out there experienced this? Rigid muscles - sort of body paralysis.

[Sophiedw]

I am struggling to find anyone in the world that has a similar illness to me. It is related to ME, as I have spent probably thousands of hours on this forum and others looking for treatments that have steadily improved my health, but my illness has little immune involvement.

The most dramatic change in my health happened when every muscle in my body suddenly went rigid one day.

Not so I couldn’t move but they had a feeling of being extremely rigid, painfully so and walking even short distances felt like moving through quicksand. This was not touched by muscle relaxants - benzos baclofen etc. So not a classically mediated neural contraction of the muscle. Rather I believe they stopped producing energy (rigor mortis) or at least entered some sort of dower (sic) state (hibernation type switch) that people like Ron Davis talk about, as if they’d completely stopped producing energy obviously would have necrotised.

has anybody in the world ever had this experience except me? Lol. I can not find a single case.

It’s definitely genetic and has something to do with b12, as it was taking NAC that started me on my journey (anyone familiar with Freddd’s invaluable contributions will know his theories on that) (huge crash, about a year prior to the muscle event) also my dad has a bunch of the same symptoms but in me, by treating my symptoms - taking the b12, other supplements, specifically a probiotic, I pushed my muscles into the instantaneous shift, which I have since (3 years) been able to get myself partially out of (due almost entirely to this forum) but it is still a work in progress.

So thank you for taking the time the write. It has saved my life most likely. If I ever get my brain back I will go after some answers.

 

[halcyon]

Stiff Person Syndrome comes to mind, but it's hard to tell based on your description if that would make sense or not.

 

[heapsreal]

Drugs that block dopamine can do this and also cause restless leg syndrome. So low dopamine levels could be worth considering and not necessarily from meds, just another whacky cfs hormonal neurotransmitter thing.

 

[Alvin2]

Freezing or "off periods" are common in Parkinsons disease, which can be treated with Dopamine agonists. But those drugs have nasty side effects.
You could also have experienced a form of sleep paralysis or a seizure.

 

[Sophiedw]

Indeed. Not stiff person although that scared me for a while as that’s autoimmune right and the weirdest thing about it was, after almost a year of this not being to walk etc, I discovered a neural technique called open focus (on this forum). After trying every supplement under the sun, none of them worked at all - this was the thing that released my muscles - so it has to do with attention and was mediated by my central nervous system. Maybe a protective switch? Relating to nutrition or something.

After that The supplements started working like they should and have had a classical chase of symptoms with supplements like people like freddd and some others describe their ‘CFS/ME’.

so weird and interesting. I think whatever is broken in me might sit at the core of ME.

 

[Sophiedw]

I’d love to speak to anyone in the world who this experience sounds familiar to, but am yet to find anyone.

 

[Sophiedw]

Also as I get my supplements right now they progressively release more muscle groups - when I find something I am low in new muscles relax and this in turn induces deficiencies - all with very robust symptoms that I’ve had to trial and error out but are always the same.

boron - gastroparesis
Copper - muscle inflammation
Selenium - gut inflammation
Folate - slow laboured heart rate
Arginine - liver failing and mouth ulceration and skin ulceration
B2 - red face
B1 - tingling in 1 hand and foot
B12 - tingling in other hand and foot and raynaulds and spastic muscles
Vitamin E - terror and wired and panic

Blah blah blah

(all worked out from this forum when they were extremely severe and then always resolved by the taking of that supplement, like flags to point me to deficiencies)

its the weirdest thing.

 

[Sophiedw]

Choline - sickness and gallbladder pain
Vitamin C - skin peels on my hands, then distractability and then laboured heart

I can spot the symptoms now and supplement accordingly and slowly am getting better.

 

[Alvin2]

I’d love to speak to anyone in the world who this experience sounds familiar to, but am yet to find anyone.

The reason i mentioned Parkinsons off periods is that your first post reminded me of the NIH study where two of their recruits were misdiagnosed with ME/CFS but actually had Parkinsons disease.

 

[Sophiedw]

Dopamine is a viable lead. At some point in the future.

 

[Sophiedw]

The reason i mentioned Parkinsons off periods is that your first post reminded me of the NIH study where two of their recruits were misdiagnosed with ME/CFS but actually had Parkinsons disease.

thank you! Will read up.

 

[Alvin2]

A good Parkinsons neurologist could determine if you actually have that disease.

 

[Sophiedw]

I definitely don’t have Parkinson’s as I’m only 30 and it’s been steadily improving since initial onset 3-4 years ago. Dopamine problems are good consideration though.

 

[Sophiedw]

Thank you

 

[Alvin2]

I definitely don’t have Parkinson’s as I’m only 30 and it’s been steadily improving since initial onset 3-4 years ago. Dopamine problems are good consideration though.

Don't be so sure, early onset Parkinsons is rare but not unheard of. That said it could be seizures, narcolepsy, tumour, who knows?
That said have you seen a neurologist who specializes in diagnosing your symptoms?
Have you had an EEG, sleep study, and brain MRI?

 

[andyguitar]

Not so I couldn’t move but they had a feeling of being extremely rigid, painfully so and walking even short distances felt like moving through quicksand

narcolepsy

Thats the first thing that came to mind when I read your post @Sophiedw

 

[Rufous McKinney]

sounds familiar to, but am yet to find anyone

I would suggest you modify your thread title to include- Body Paralyzed, Rigid Muscles or other appropriate descriptor...so others might find the thread should they be searching.

 

[Shanti1]

From your description, it sounds like you had it somewhat continuously for a year, so not episodic like narcolepsy/seizure would be, and not progressive, like Parkinson's. What about a channelopathy, like a variation of myotonia congenita?
I know you are looking for someone else who has had this, its not me, but I'm glad you have had so much help from this forum, I feel the same way about what I have learned here.

 

[Learner1]

@Sophiedw Have you looked into BH4 deficiency?

https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-01379-8

https://rarediseases.org/rare-disea...articularly sensitive to excess phenylalanine.

 

[Sophiedw]

Don't be so sure, early onset Parkinsons is rare but not unheard of. That said it could be seizures, narcolepsy, tumour, who knows?
That said have you seen a neurologist who specializes in diagnosing your symptoms?
Have you had an EEG, sleep study, and brain MRI?

i have had mri and eeg - both clear. A sleep study would be fantastic but the NHS is not that amenable to fancy stuff. Anyway they didn’t find anything. That was for some sleep phenomena a bit like fits or ‘hypnic jerks’ - although the term hypnic jerks so woefully under exaggerates how terrible it was.

That turned out to be too much glutamate which I think was caused by high ammonia poisoning krebs - that is now broadly under control from taking malic acid and/or waiting it out/limiting my protein intake. Still now if I eat a lot of protein it gives me high glutamate and same symptoms - fits tremor eye rolling.

This is because (I think) as much muscles repair urea cycle has problems (also liver is laboured) and build up of ammonia causes a block in krebs at citrate reducing the amount of oxaloacetate that consumes glutamate to form aspartic acid which is needed in Krebs to consume ammonia . So it gets caught in a deadlock.

The docs called that ‘anxiety’ . Sudden severe bout of anxiety that caused me fits and a different sorts of paralysis. I understand those can be ‘symptoms’ of anxiety but when the word is said it sort of dismisses the fact that anxiety is obviously caused by an underlying brain pathology right.

I would suggest you modify your thread title to include- Body Paralyzed, Rigid Muscles or other appropriate descriptor...so others might find the thread should they be searching.

Good idea! Thank you.

@Sophiedw Have you looked into BH4 deficiency?

https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-01379-8

https://rarediseases.org/rare-diseases/tetrahydrobiopterin-deficiency/#:~:text=Tetrahydrobiopterin deficiency results in abnormally,particularly sensitive to excess phenylalanine.

yes in the past. From your writing when I was trying to get to the the bottom of the fits. I had broadly forgotten about it though. I think I have some in the freezer may give it a go again now the fit stuff has stopped - altho I remember the shelf life isn’t very long.

thanks!