If I use my muscles a tiny bit too much I get PEM.

ChookityPop

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Its so weird. Last year my legs suddenly "stopped" working. I got crazy lactic acid buildup and lots of pain. Walking in general sucks, but stairs and walking downhill is a lot worse. In november I removed snow from my car and "destroyed" my arms and got crazy PEM afterwards. I bought this car btw because I no longer could live a normal life without one..
Then one day I had this muscle "dysfunction" happening in my stomach/abs. The past few days I have had this exact same issue, only in my lowerback muscles and its super bad.
Now its that bad that I cant even sit on my computer chair and I feel it in my side muscles when I drive etc. Anyone else had this?

I have been in quite good shape for a few months before this last PEM. Ive been driving out to nice spots chillin in the sun listening to podcasts getting my vitamin D up.

But one thing I wonder is. Everytime I get these PEMs I get so fatigued that I feel my emotional apparatus is out of wack, sometimes also my gut gets weird. The worse the fatigue is because of the PEM the more emotional frail I get. Not all day through of course.. Im a very stable guy emotionally and psychologically so I think its a little interesting that this happens. I know this happens when people are sleep deprived for example...

Do some of you have these symptoms?
 

Judee

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Are you electrolytes okay? I mean we do all get PEM but yours sounds a bit more than that, almost like you have a mineral imbalance.

Anyway, that's just off the top of my head.

Hopefully someone else will offer you advice that helps. I know that @Hip has posted a thread called PEM Busters here: https://forums.phoenixrising.me/thr...or-prevent-pem-post-exertional-malaise.48438/

Maybe something there will help.

Edit: One more thought: Are you taking any medications that may have this type of reaction as a side effect? The best place I know to find out if others are experiencing a particular side effect with any medication is askapatient.com.

Drugs.com is good too but I like the first site better because I've found that drugs.com will say a side effect is unlikely but then when I do an internet search on that med and side effect it comes up with lots of web pages saying, "yeah...that's a side effect." :(
 

ChookityPop

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Are you electrolytes okay? I mean we do all get PEM but yours sounds a bit more than that, almost like you have a mineral imbalance.

Hopefully someone else will offer you advice that helps. I know that @Hip has posted a thread called PEM Busters here: https://forums.phoenixrising.me/thr...or-prevent-pem-post-exertional-malaise.48438/

Maybe something there will help.
Thanks! What do you mean when you say "yours sounds a bit more than just PEM"? I often feel like the symptoms of others are so much lighter than mine.. I got sick in 2014, but much lighter than now. I would say mild ME with crazy brain fog. I worked out like crazy until I got sick again last year.. Could it be something else you think??
 
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Hi @ChookityPop, I've been having similar problems the last few months.

I woke up five weeks ago completely unable to walk or weight bear, I think because I'd walked too far the day before (maybe 300m?) and had been squatting down in the garden every other day for a couple of weeks. It then took me a few weeks to be able to walk just to the kitchen, but I still get crazy lactic acid and weakness doing that. My quads feel like they've got a thousand shards of glass stuck in them, my calves burn on standing and my arms are ridiculous weak noodles.

I had built a bit of muscle tone last year doing pilates but the muscle tone appeared to vanish overnight, I think in December (before the dysfunction and weakness started).

Surprisingly, I'm less emotional than usual.

Sorry I have no suggestions :( I'm seeing an ME/CFS environmental medicine specialist and having some tests done so will let you know the outcome if there's anything interesting to report.
 

ChookityPop

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I want to add this:

When my muscles get tired like this I get out of breath almost like after running. I was on 2-3 weeks of prednisone last year before all of this shit started. Could it be steroid induced myopathy?
I went to a neuroligist and she said I have too much muscle to have myopathy and she refused to take a muscle biopsy of me.. I eat a nose to tail carnivore diet and feels like this has helped me keep/gain muscle..
 

ChookityPop

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Sorry I have no suggestions :( I'm seeing an ME/CFS environmental medicine specialist and having some tests done so will let you know the outcome if there's anything interesting to report.[/QUOTE]

Good luck! Yes, please do.

Have you tried compression socks, tights etc?

I feel super skinny jeans helps my legs a little bit.....
 
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Have you tried compression socks, tights etc?

I feel super skinny jeans helps my legs a little bit.....[/QUOTE]

I can't tolerate compression tights at the moment due to extraordinary sensitivity to touch, plus there is just no way I could get the buggers on (having trouble enough dressing myself at all due to weak noodle arms and malaise). Also, I've previously found them unhelpful for the neuropathy-type feeling in my lower legs I've been having again since this started. Wonderful for POTS though...

One thing that helped me initially was hydrocobalamin b12 (I can't tolerate methyl b12). My doc thinks I put my myself out of balance by taking other methylation supplements. To be fair, I started walking again the day after my first b12 shot, although still not as much progress as I'd like to see...
 

xebex

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I also have this symptom. It is my worst symptom the muscles in my back fatigue super fast (within minutes of standing and even sitting) and they trigger me to crash, (like fall into a coma sleep where I can’t actually sleep but I feel drugged) have huge mood swings and if I really over do it I’ll get the flu like symptoms too. If it wasn’t for my back muscles I think I’d be around 70/80% recovered but my back doesn’t want to play. If I lie down I am completely cognitively functional, I homeschool my daughter from the sofa. It seems that my only trigger is being upright. I just had two months of being able to stand for much longer (normally it’s not more than 20minutes max, maybe 2x a day but for two months I was standing and walking around the house most of the day) then suddenly my function dropped again. I do find ritalin is helpful to some extent with this and I think it’s to do with vasoconstriction. There was a recent research paper out that a subset of us have vasoconstriction and then the body overcompensates by flooding it with vasodilators such as bradykinin which cause the fatigue and pain. The fact ritalin helps suggest to me that it’s keeping my blood vessels constricted for longer, thus delaying the release of the natural vasodilators. Other things that help are tiger balm rubbed in the muscles, it seems to get blood flow going again and reduces pain, I think tiger balm is a vasodilators which is weird BUT possibly stops the bradykinin being released because the body has recognized the blood vessels have dilated already. Massage also helps but I haven’t found anything to make a permanent improvement it’s only temporary band aids. Pretty much all my other me/cfs symptoms have now gone. I feel like this is the root cause of my illness but really have no idea what’s causing and it if there anything other than Vasoconstrictors (and possibly dilators) to help.
 
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Some of them, yes. Have you figured out something that works for you, any update? I am desperate...
PS. How can you tell it's lactic acid build-up? Maybe you simply mean DOMS, ie. muscle microtears? That's what I get...
 

ChookityPop

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Some of them, yes. Have you figured out something that works for you, any update? I am desperate...
Only compression tights, sleeves and compression tank top. Im going to try mestinon or another vaso constrictor! What does your symptoms look like?
 

ChookityPop

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PS. How can you tell it's lactic acid build-up? Maybe you simply mean DOMS, ie. muscle microtears? That's what I get...
Idk if its lactic acid. I get blood pooling in the calfs. Its very hard to describe symptoms sometimes. But Im pretty sure I have issues with the blood vessels.
 
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Only compression tights, sleeves and compression tank top. Im going to try mestinon or another vaso constrictor! What does your symptoms look like?
When it comes to vasodillation, I get terrible headaches after consuming arginine. Ie. any protein like meat. As even meat contains arginine. I can't supplement arginine so protein supplements or aminoacid mixes are out of the question. Fortunately, after many (!) years of trial and error I came up with my own aminoacid mixture (all aminoacids bought in bulk, all necessary aminoacids, but without arginine). And that was a game changer - I have no headaches at all. Maybe you could try that. Also an increased dose of lysine in this mixture will prevent arginine from being absorbed - also into the brain so you won't have headaches...

My symptoms... these days it all comes down to muscles (I managed to get rid of other symptoms like headaches and brain fog but it took 15 years). My muscles are crampy, it's possibly myotonia, but it's hard for me to get a diagnosis because I can't get an appropriate EMG result (proving that I have myotonia). These cramps, when they occur, lead to DOMS, ie. muscle microtears. I try to get rid both of the cramps and DOMS (using many different supplements). Even though the progress is huge (considering) I still can't get it right.
Even if I have a temporary success then it comes back with a vengeance.

The idea is that if I get rid of cramps, I will get rid of DOMS. But even if I could get rid of DOMS only, that would be something.
During this corona time everything is more difficult... doctors do not want to see you... etc.
 
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Plus, the reason why I need to supplement aminoacids is that I don't digest protein. So for many years I was actually protein deficient (confirmed by lab results that every doctor saw but none deemed important). I've also got my gut messed up badly (confirmed by gastroscopy but kind of healed now)... but that's another story... the problem with gut is that the more it is messed up the more deficiencies you get and the gut is less likely to heal... so it's a beautiful example of a vicious circle...
 

ChookityPop

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Plus, the reason why I need to supplement aminoacids is that I don't digest protein. So for many years I was actually protein deficient (confirmed by lab results that every doctor saw but none deemed important). I've also got my gut messed up badly (confirmed by gastroscopy but kind of healed now)... but that's another story... the problem with gut is that the more it is messed up the more deficiencies you get and the gut is less likely to heal... so it's a beautiful example of a vicious circle...
interesting! What is the name of the test to see if you are protein deficient?
 
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interesting! What is the name of the test to see if you are protein deficient?
It's simply albumin that is performed together with calcium in order to get the so-called corrected calcium (that's how they call it, AFAIR). Because it's just an auxiliary parameter it doesn't get flagged when it's too low. 15 years ago it was around 55, during the worst protein deficiency it was 35, and now it's back to 55.

I'm wondering if compression tights or rather a compression bandage (it's much more convenient as per experience of my father, you must try it if you haven't) could be of use to me. That might result in better circulation. But I don't seem to have problems with swelling in my legs or veins showing up in my legs but... what I've definitely learnt during all these years is that you never know if something works until you try it.

Can you imagine someone having so bad circualtion that he would have muscle breakdown from that? What's your research in this area? Have you come across anyone like that?

Compression bandages are not that expensive and are easy to apply so it may be worth a try...