Are my symptoms abnormal? Main problem is that muscles burns out very quick!

ChookityPop

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Confirmed:

-antiphospholipid syndrome autoantibodies
-complement activation
-autoimmun small fiber neuropathy

-Dysautonomia.

Epilepsy. ADPEAF?
Haven't had a seizure in 6 years. A family member has the exact same type. But we arent officially diagnosed. But I put it here as confirmed either way. Had this since a kid during the night only. Manifested with the exact same nightmare everytime fullowed by me waking up to what feels like my brain getting fried. It feels way to hard for my brain so im just waiting for it to short curcuit. I am present during all of it. My family member has the exact same presentation with a nightmare (quite similar to mine which is interesting) followed by the seizure.


Carpal Tunnel if I type too much. Comes fast!

Ive had Bakers cysts but I have gotten rid of them.

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I am a little perplexed as to how well "functioning" I can be without crashing even though my general symptoms are very severe. My days consists of being reclined in my bed using my macbook, driving to the store, going outside and lay in the sun all day if its summer listening to podcasts and music. The sun makes me feel better so Im thinking of moving somewhere sunny one day. Its possible I have forgot something essential in this list. But basically my only? issue is that my muscles burns out very quick even though I can do somethings which should seem impossible like having sex for example.


My symptoms are in a way almost like severe myasthenia gravis ish. Though if I pace perfect I can be pretty "functional". I have pretty decent energy levels on the regular. Though not when I crash as I have right now.

I go to the store and buy food for 1.5 day at a time, watch tv or browsing the web on my mac connected to my tv, drive around town quite normal have sex for up to 45 minutes quite intense though I cant stand so this happens horizontally but having said that my muscles can burn out from grabbing a glass of water in the wrong angle and that can last for days to weeks. have quite normal conversations in terms of length, make my own meals which consists of grass fed burgers etc. I can sit-lay in my bed using my mac with keyboard and mouse connected to my tv all day unless my eyes are burnt, stomach musles are burnt, lower back muscles are burnt, neck is burnt or my arms burns. I can drive for hours on the highway but Im more limited if I have to do a lot of turns etc. I wont be affected cognitively by driving either as others do.
So when I have a good balance with pacing I can almost feel nornal in terms of no inflammation feeling in my body.

That said. I cant do none of these things if one of my muscle groups are burnt out which happens very fast if I do the wrong thing.

-I cant read that much because my eyes burns out.

-Involuntarily falling asleep after physical exertion of the eyes:
If I read too much, it can be 10 minutes on my mobile. So, without warning, I can get so burnt out in the eye muscles that I "acutely" feel absolutely awful all over my body and my body shuts down where I eventually fall asleep involuntarily. Often sleep for 3 hours and wake up still feeling terrible. This happened a lot earlier this year but STOPPED after starting to use my prism glasses though I have to be careful.

-My eyelids can be droopy at my worst

-shortness of breath at times. happens more often if I have burnt out one muscle.

-chewing harder foods.

-Cant play xbox since the small muscle tension you make during gaming is enough to burn my stomach muscles.


-Accommodative spasm, dry eyes, photosensitivity, burning pain in the muscles behind the eyes, sore worn eyes. I sometimes have trouble tracking with my eyes. Very limited mtp reading. At times I can not read at all due to the symptoms mentioned above.

- I cant do anything without full body compression as every body part will burn out making me feel horrible with inflammation feeling, terrible pressure in my calfs from what is most likely blood pooling and burning pains.

-Without compression my arms would burn out a lot quicker from typing, driving, making food.. everything. That being said my function level is still extremely limited but I can do more with compression which is interesting and it keeps the pain away also for the most part.

-If the mattress I lay-sitting on is too hard and I dont have the perfect mix of duvets and pillows in my back it will burn out my stomach muscles to the point I cant "lay - sit"/recline there.


Symptoms:
- Extremely fast / fast muscle exhaustion that can take weeks to recover.
-Have great difficulty walking, standing. Though compression helps a lot.
- Can not carry things (1.5 kg max ish).
-can not sit upright, must lie down or sit reclined with a carefully constructed duvet and pillow construction behind my back. Its also important that I have a somewhat soft mattress.
-quick fatigue in the jaw muscles, prevents me from speaking at times. -and chew food at times
-must drink the food on rare occasions
- abdominal muscles get burned out when I speak.
lower back muscles burn out quickly.
-Eyes quickly burn out which prevents me from reading, watching TV, mobile. Cant have texting on the TV because I will read and that will burn out my eye muscles. But I can watch TV just fine most of the time if I dont have texting etc.
-brain fog if I push myself too far with conversations though its not that often.
-extreme muscle pain throughout the body if I have overdone it. Burning pain.
-muscle cramps and twitching throughout the body thoug magnesium, compression and pacing keeps it in check.





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Here is a very messy list of symptoms I have translated in google translate I thought could be worth adding though I dont have the energy to correct the spelling etc right now as Im in a crash.


Muscles burn out VERY quickly
Keeping my head in the wrong position and looking down at my phone can burn out the muscles in my neck for days to weeks.

Must push me up with the arms of the bed.


I have to live in a place where it's flat. entrance. electric garage. Staying only on the ground floor.

Must eat soft foods (ground meat). On rare occasions I must drink food. Can not chew hard food. Then I burn my jaw muscles and can not speak.

Can not walk in stairs on the regular as this will burn out the muscles in my legs.

When my stomach muscles are burnt I can not laugh so much.

if I stretch at the wrong angle, too high up with the arm, etc., I burn the muscles in the arm / shoulders. Days to weeks

Can not cut my nails on my feet
Cramps in the abdominal muscles if I do as well as my stomach and lower back will burn out

Blood pooling in my legs is a big problem.

Compression has an effect. So much so that I use it every day. whole body.


bedridden
can not sit upright. must sit-lie down.


must sit in the shower and Must be quck when showerin or else my stomach and lower back will burn out.

Sleeps with hearing protection.

talking can be too much due to abdominal muscles is burnt out, jaw muscles and on rarer occasions cognitive.

has happened that I can not walk at all. due to the legs being completely burned out.
the muscles can burn out before I have time to get register it. which makes it very unpredictable.

Though I with real compression and pacing I can have quite good muscle endurance in my legs.

Abdominal cramps if I sit wrong


carpal tunnel coming fast in both arms when typing fast and too much. That also triggers coat hanger pain.

nerve pain in the arms.
fingers stiffen - carpal tunnel if I write too much
very limited on keyboard at times.

harder to drive. abdomen, lower back, legs, arms. I need to lay backwards to not strain my stomach muscles but then my eyes gets burnt so I need to swtich back and forth sometimes.


really sound sensitive on occasions. Though other times i can listen to music loud without any issue at all.


Dysautonomia Symptoms:


Blood accumulation in the legs. Have had swelling but could be caused by my compression, idk.


-Blood accumulation, pressure in the legs if I walk or stand.
-Muscle twitching, twitching, fasculatioms
-great problems with standing straight up and down
-Sit with my legs up in the chair for symptom relief.
heart rate increased 30 beats from horizontal to vertical


Back
Coat hanger pain
Worse when I'm upright. Gets triggered if I try to was a plate for example.

Eyes-
Vision problems
exophoria
accommodative spasm


Exophoria as well as other findings and dysautonomia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6022825/


Unable to empty bladder.

READING
The eye muscles are burned out
pain in the eyes
begins to squint (exophoria)
the eyelids slide down
fall asleep
if I read too much I get very tired and fall asleep Without being able to resist. (PEM).
Can not watch TV with subtitles. Then I read automatically and it burns out my eye muscles.

Eye / Eye symptoms

Accommodative spasm, dry eyes, photosensitivity, burning pain in the muscles behind the eyes, sore worn eyes. I sometimes have trouble tracking with my eyes. Very limited mtp reading. At times I can not read at all due to the symptoms mentioned above.


Compression:
Without compression, I can not do anything. Im not dizzy but without my compression burns out super quick. Then I can hardly walk at all. Then the lower back, abdomen, arms, legs and neck burn out immediately.
Without compression, my level of function will be even worse!
 

ChookityPop

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I've experienced MANY of the symptoms you have described.......... Muscles burning out quickly being one of them. I'm not experiencing that symptom at the level of intensity I once did.
Thats amazing and also reassuring to know that you dont experiencing that level of symptom intensity as you once did! Do you know what has helped you or have any theories?

I felt the best and very robust from august until two weeks ago when I burnt out my lower back muscles very severly. Because of that Im very limited when it comes to walking or standing up and down since my back muscles will start to burn almost immediately after standing up. It almost feels as if I pace perfectly I can get more and more robust.
 

ChookityPop

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Hi, @ChookityPop

Have you had Repetitive Stimulation testing via nerve conduction study?
Hi Zebra,

I have done EMG and nerve conduction study. Both were normal. But I have tested positive for autoimmune small finer neuropathy.

Can I ask why? To rule out Myesthenia gravis?

EMG « Electromyography (EMG) measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities. During the test, one or more small needles (also called electrodes) are inserted through the skin into the muscle.»
 

Zebra

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Can I ask why? To rule out Myesthenia gravis
Hi, @ChookityPop

I have had multiple NCSs and EMGs.

The Repetitive Stimulation test is a special NCS that is done to diagnose myasthenia gravis, and sometimes labert eaton syndrome, although the two dieases have different patterns during repetitive stimulation tests.

If you want to fully rule our myasthenia gravis, you may wish to pursue a Repetitive Stimulation NCS.

If a NCS/EMG is inconclusive, sometimes a Single Fiber NCS can be helpful.

In the US, the Repetitive Stimulation test and the Single Fiber test are considered specialized tests, and they are typically NOT included in a standard NCS/EMG.

If you already know all this, great!

If not, I'm just trying to share what I've learned in hope that it will help you.

Best wishes.
 

ChookityPop

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Hi, @ChookityPop

I have had multiple NCSs and EMGs.

The Repetitive Stimulation test is a special NCS that is done to diagnose myasthenia gravis, and sometimes labert eaton syndrome, although the two dieases have different patterns during repetitive stimulation tests.

If you want to fully rule our myasthenia gravis, you may wish to pursue a Repetitive Stimulation NCS.

If a NCS/EMG is inconclusive, sometimes a Single Fiber NCS can be helpful.

In the US, the Repetitive Stimulation test and the Single Fiber test are considered specialized tests, and they are typically NOT included in a standard NCS/EMG.

If you already know all this, great!

If not, I'm just trying to share what I've learned in hope that it will help you.

Best wishes.
I did not know this, thank you for sharing! This is super useful info. I will for sure pursue this. Very Interesting I love learning new information like this.

That means I most likely only had the standard NCS and EMG tests. Can I ask If you hav had this test done?
 
Last edited:

Zebra

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Hi, @ChookityPop

I so glad you found this information helpful. The only meaning I can find in my years of suffering is being able to share what I've learned with others. So, you have made me very glad!

That means I most likely only had the standard NCD and EMG tests. Can I ask If you hav had this test done?
I have had the Repetitive Stimulation test twice. Both times they did just one hand, which I think is because it's easiest for the technician. So, if you have a specific muscle that you know fatigues easily, I would try to insist they test that as well. (Both of my tests were negative for MG.)

I am returning to a neuromuscular specialist in February, and I plan to inquire about the Single Fiber to try to definitely rule out LEMS.

About once a year some doctor INSISTS that I must have seronegative MG or LEMS, so, for me, I'd just like to finally close the door on both these diagnosis.

However, for you, they seem like very real possible diagnoses. Did you know that Lambert Eaton can cause Dysautonomia as well as muscle weakness and muscle fatigue?

Best of luck to you, @ChookityPop!
 

ChookityPop

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@ChookityPop Have you done comprehensive nutrient testing, like a Genova Diagnostics Metabolomix+ ?

Wondering what your levels of B1, B6, amino acids, minerals, antioxidants and aminos are like as deficiencies can produce many of the symptoms like you describe.
Very interesting! Thanks for bringing it to my attention I have not. I called a company where I live which works with Genova so I can do it easily thrugh them. I will try to see if it is possible to do these tests through my doctor if I can find the right requisition papers. Either way this is something I need get tested for!
 

ChookityPop

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Hi, @ChookityPop

I so glad you found this information helpful. The only meaning I can find in my years of suffering is being able to share what I've learned with others. So, you have made me very glad!



I have had the Repetitive Stimulation test twice. Both times they did just one hand, which I think is because it's easiest for the technician. So, if you have a specific muscle that you know fatigues easily, I would try to insist they test that as well. (Both of my tests were negative for MG.)

I am returning to a neuromuscular specialist in February, and I plan to inquire about the Single Fiber to try to definitely rule out LEMS.

About once a year some doctor INSISTS that I must have seronegative MG or LEMS, so, for me, I'd just like to finally close the door on both these diagnosis.

However, for you, they seem like very real possible diagnoses. Did you know that Lambert Eaton can cause Dysautonomia as well as muscle weakness and muscle fatigue?

Best of luck to you, @ChookityPop!
I have now found out what the repetitive stimulation test is called where I live so I will pursue now pursue it. Again, thank you for bringing this to my attention!

I will remember your tips and ask the technician to test muscles I tend to burn out more often.

I did not know that about LEMS. "The LEMS diagnosis is suspected from typical clinical symptoms; the triad of muscle weakness with a typical distribution, areflexia, and autonomic dysfunction. Presence of VGCC autoantibodies confirms the LEMS diagnosis, due to the very high antibody specificity"

I have negative VGCC, VGKC, P-CASPR2 and P-LGI1. Does that rule out LEMS entirely? I will ask in the LEMS facebook group as well.

Thank you so much, best of luck to you as well @Zebra!
 

Learner1

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Very interesting! Thanks for bringing it to my attention I have not. I called a company where I live which works with Genova so I can do it easily thrugh them. I will try to see if it is possible to do these tests through my doctor if I can find the right requisition papers. Either way this is something I need get tested for!
Good idea! I think you might find some helpful answers. You can contact Genova and ask them for help with the papers and how your doctor can get the kit for the test.