How to do physical therapy without PEM?

[TJ_Fitz]

How can I modify my PT program so that I don't get PEM/overtraining but still progress in my recovery?

Background: I had a procedure on Dec. 2nd to restore ROM (range of motion) in my shoulder, which had been frozen since March. I've been in PT since, and now I'm mostly out of the "maintain ROM" phase and in the"restore muscle strength" phase.

Between steroid withdrawal symptoms, renewed yeast overgrowth from Christmas treats (sugar, gluten, starch, and dairy), and possible overexertion during therapy, it's hard to be sure just what's happening, but I think my program is too intense and I'm dealing with PEM. I've gotten myself back on the Wahls Paleo program I was following before the holidays, so hopefully the yeast and gut problems will clear up soon.

 

[Creekside]

My theory on why physical exertion triggers PEM is that the exertion damages muscle cells (microtears), which activates the immune cells to clean up the damage, which in turn activates the brain's immune cells, which, since they also regulate/assist/maintain other brain cells, results in experienced symptoms. Restoring muscle strength involved intentionally causing those microtears (to trigger rebuilding with more/stronger cells), so that's inescapable. Maybe look for some method to reduce immune activation or cytokine production in the affected muscles?

FWIW, I found that cumin (cuminum cyminum: the spice in curries) was 100% effective in blocking my physically-induced PEM. A level tsp of ground cumin was my effective dosage, and each dose lasted 3 days. After taking cumin every 3 days for ~2 years, I stopped having PEM even without the cumin, and remain PEM-free after several years. I've posted about it before, here and on Phoenix Rising and S4ME, and others have tried it with some reporting mild benefits, but no one else reporting the full benefits I experienced. It seems to have only a small chance of working for most PWME, but a package of no-name ground cumin is really cheap and unlikely to cause any negative effects, so it's like a cheap lottery ticket: maybe you'll get lucky. The worst negative result reported is that some people really hate the taste. I didn't love the taste, but it was a small price to pay for being PEM-free.

 

[Not dead yet!]

How can I modify my PT program so that I don't get PEM/overtraining but still progress in my recovery?

Background: I had a procedure on Dec. 2nd to restore ROM (range of motion) in my shoulder, which had been frozen since March. I've been in PT since, and now I'm mostly out of the "maintain ROM" phase and in the"restore muscle strength" phase.

Between steroid withdrawal symptoms, renewed yeast overgrowth from Christmas treats (sugar, gluten, starch, and dairy), and possible overexertion during therapy, it's hard to be sure just what's happening, but I think my program is too intense and I'm dealing with PEM. I've gotten myself back on the Wahls Paleo program I was following before the holidays, so hopefully the yeast and gut problems will clear up soon.

Can you do it at home via zoom or similar video call? Just not traveling will help.

Since you mention gluten, you should ask your doc to test you every year for Celiac activation. Or to test you to rule out Celiac (more expensive, genetic test for the presence of HLA-DQ2.5 and /or 8). If Celiac has activated, then the treats you just had will take about 4-6 months at best to heal.

I often try to rescue myself by staying 24 hours in bed, taking all the muscle relaxers necessary to stay there, and kava, antihistamines, whatever... and watching half asleep any TV show that I can binge without waking up much. This often works but of course it means no phone calls, etc. It can disturb friends who may be worried already. So tell them, up front.

I make use of caffeine pills but not all the time or it would trigger more PEM. I tried modafinil, but my nervous system is too archaic and it didn't work as expected.

The next day, if I feel raring to go, I might take a caffeine pill, shower/etc, take a strong breath mint and make some breakfast. If after eating I still feel like standing up, then the treatment was successful and I can go about my business, pacing always.

 

[TJ_Fitz]

Can you do it at home via zoom or similar video call? Just not traveling will help.

Since you mention gluten, you should ask your doc to test you every year for Celiac activation. Or to test you to rule out Celiac (more expensive, genetic test for the presence of HLA-DQ2.5 and /or 8). If Celiac has activated, then the treats you just had will take about 4-6 months at best to heal.

I don't have the genetic risk factor for celiac disease, and I've had the blood test for the antibodies and it was negative. Admittedly, I don't have the drastic GI symptoms from gluten that celiac patients usually do; it's more just an escalation of ME symptoms. That said, I'm sure it's possible to develop celiac without the genetic predisposition for it, but I'm already avoid grains so hopefully that won't happen.

 

[TJ_Fitz]

My theory on why physical exertion triggers PEM is that the exertion damages muscle cells (microtears), which activates the immune cells to clean up the damage, which in turn activates the brain's immune cells, which, since they also regulate/assist/maintain other brain cells, results in experienced symptoms. Restoring muscle strength involved intentionally causing those microtears (to trigger rebuilding with more/stronger cells), so that's inescapable. Maybe look for some method to reduce immune activation or cytokine production in the affected muscles?

From what I've learned about weight training, that is probably right. The PT was wanting me to do multiple sets of exercises. Each extra set is a sort of magnifier for this effect, so I'm just doing one set.

 

[Not dead yet!]

I don't have the genetic risk factor for celiac disease, and I've had the blood test for the antibodies and it was negative. Admittedly, I don't have the drastic GI symptoms from gluten that celiac patients usually do; it's more just an escalation of ME symptoms. That said, I'm sure it's possible to develop celiac without the genetic predisposition for it, but I'm already avoid grains so hopefully that won't happen.

Technically you'd need to have the genetics to ever develop classic Celiac. But don't worry about Celiac if you don't have the genes.

People are sensitive to gluten in other ways and for different reasons than Celiac. Sounds like you're one of them. If you get interested in the neuro effects at some point, a good research area is Gluten Ataxia and Diabetic Neuropathy that's triggered by Gluten. But if you're avoiding grains then save your energy for better things.