Is there anything I can do to reduce PEM?

[powertool4]

I honestly think this is the last crash. I had my second major relapse in 2016 and it took my entire family to recuperate me to somewhat functional health where I can do basic things including some physical activity like camping (with heavy PEM) to deal with.

Just had a 3rd relapse after 3 years last week and it is getting worse. I am all too familiar with the severe relapse (not a small crash) and it is going to be pure torture. Can't move a muscle for months need someone to take care of me it's fucked up.

I have lots of thoughts to myself and currently I feel I may not make it out of this one. I always wondered what happens to people with really severe CFS/ME if they don't get better? Well I think realistically they die of something else like heart failure or of secondary causes. I can't imagine what it's like without family.

Anyone do anything to recover their nervous system faster? The only thing that's worked for me is to literally not move in bed, close my eyes maybe light YouTube, eating and bathroom. No external stimuli, no sitting up, or any form of exertion unless I want major tremors and spasms (which eventually turns to breathing issue and numbness of all limbs). Last time it took around 3-4 months of that before I can sit up. Another 6 months of sitting up but not leaving the house.

After 2 years was able to work on my car lightly and drive etc. I got a little excited and started going camping and stuff and now look where I am.

The most prevalent thought in my head is there's a chance I won't make it out this time. The older I get the worse it is and less people to help me. 22 my first major crash, 29 my second and finally 32.

This disease has robbed me of everything and yet I'm thankful of what I have. I just want relief at this point.


I don't do well with supplements but maybe something I haven't tried.

 

[Judee]

Here's a thread that was posted about that: https://forums.phoenixrising.me/thr...or-prevent-pem-post-exertional-malaise.48438/

 

[Float]

I'm sorry I don't have anything helpful to suggest but I send love. I got a lot better taking a combination of a med that raises blood pressure, another for thyroid and a supplement for hormone balancing. Hang on in.there because science is advancing rapidly as is awareness. So get through this one. And another if you have to. And I believe that something will change. Now that prevalence and loss to economy is being noticed , money will be invested to support peoole and manage illness . Hugs.

 

[Float]

Oh and while I was crashed I did guided relaxation and meditation and breathing. They don't fix it but it does help me get through with less stress.

 

[Ellie_Finesse]

I honestly think this is the last crash. I had my second major relapse in 2016 and it took my entire family to recuperate me to somewhat functional health where I can do basic things including some physical activity like camping (with heavy PEM) to deal with.

Just had a 3rd relapse after 3 years last week and it is getting worse. I am all too familiar with the severe relapse (not a small crash) and it is going to be pure torture. Can't move a muscle for months need someone to take care of me it's fucked up.

I have lots of thoughts to myself and currently I feel I may not make it out of this one. I always wondered what happens to people with really severe CFS/ME if they don't get better? Well I think realistically they die of something else like heart failure or of secondary causes. I can't imagine what it's like without family.

Anyone do anything to recover their nervous system faster? The only thing that's worked for me is to literally not move in bed, close my eyes maybe light YouTube, eating and bathroom. No external stimuli, no sitting up, or any form of exertion unless I want major tremors and spasms (which eventually turns to breathing issue and numbness of all limbs). Last time it took around 3-4 months of that before I can sit up. Another 6 months of sitting up but not leaving the house.

After 2 years was able to work on my car lightly and drive etc. I got a little excited and started going camping and stuff and now look where I am.

The most prevalent thought in my head is there's a chance I won't make it out this time. The older I get the worse it is and less people to help me. 22 my first major crash, 29 my second and finally 32.

This disease has robbed me of everything and yet I'm thankful of what I have. I just want relief at this point.


I don't do well with supplements but maybe something I haven't tried.

I know how you feel, I am in the same position as you. I don’t think there is much you can do apart from resting, pacing and staying within your envelope. That’s what I have done. Whilst I am unable to do much and often bedbound, by doing the above I have managed to lesson the crashes so it’s not like I am in permanent crash mode like I was previously. Before, I kept trying to push through, sometimes I was pushing through without even realising I was doing it. I thought by lessoning work commitments, using an electric wheelchair and cutting out my social life was the answer. The reality was, I was making myself sicker and spent more time off sick than I was at work over the last 4 years. 3 of those occasions was long term sick bedbound 90% of the time. I have learnt my lesson, and gave up my job to allow myself time to heal.

Whilst I’m still crashing badly it’s not lasting as long between each one. Each week I have a couple of really good days almost symptom free, which is a huge improvement for me. As time has gone on it lessons and lessons, albeit slowly. I’m not saying that this will work for you, and I have no idea if I will ever fully recover, but you never know. All the best

 

[Wishful]

Cumin (Cuminum cyminum) works very well for me, both preventing physically-induced PEM and reducing symptoms once PEM has occurred (after forgetting to take it on schedule) and starts working within hours. A level tsp does the trick for me, and lasts 3 days. Sadly, no one else has reported that it works for them, so maybe it's unique to my biochemistry or biophysiology. However, it's cheap and easy to try, and you might even have it already in your kitchen.

If cumin doesn't work for you, then you can try the other PEM treatments listed in the forums, and then try things at random. Since we don't know what causes PEM, and what works for one person doesn't work for another, trying things at random seems just as effective as trying things from unproven theories or anecdotal evidence.

I wonder whether your very severe long-duration PEM has a different mechanism than the more common shorter, less severe type, and the treatments for the latter type might not be effective for you.


Re-reading your posting makes me wonder whether you've triggered a latent virus or other infection, or possibly triggered dysbiosis. Maybe get testing for signs of an infection. For dysbiosis, ask in the gut issues sub-forum: there are people there who are more familiar with the signs of gut problems. I suppose there could be other organ problems that feed back on ME. You might want to get a full examination now; negative results while you weren't experiencing this severe PEM may no longer be valid.

 

[Wayne]

@Mary, you may want to weigh in on this one.

 

[Mary]

@powertool4 - branched chain amino acids (4000 - 6000 mg. a day) have cut my PEM recovery time in half. However, this is for "normal" PEM (if there is such a thing!) - where I crash after overexerting, and then recover. It used to take me 3 days to recover from PEM, though if I had severely overdone it, it might take 4. But now I generally recover in a day, unless I've severely overdone it.

But I haven't been as ill as you are and have not had a crash as severe as you. Sitting up has never caused me the kind of issues you have - trouble breathing, etc. You sound similar to several members who have turned out to have CCI/AAI issues - take a look at these threads and see if anything matches for you:
https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-81#post-2212576

https://forums.phoenixrising.me/thr...i-aai-chiari-stenosis-etc.76887/#post-2215861

https://forums.phoenixrising.me/threads/tracking-cci-aai-mri-treatment-outcomes.62720/
https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/

There are even more threads on this issue - you can do a search for more -

 

[Wishful]

You might also have more luck searching for threads about 'crashing' rather than PEM. We don't know what either actually is, but I think the convention is to use the term 'crash' for the severe, long-term version.

Also, you might want to pay special attention to discussions of the problem of 'feeling a bit better, and thus overdoing activities, leading to a crash'. We all seem to do this, even if we just suffer minor short-term PEM, and have to learn to avoid doing it yet again. The worse the crashes, the more careful you need to be.

 

[powertool4]

@powertool4 - branched chain amino acids (4000 - 6000 mg. a day) have cut my PEM recovery time in half. However, this is for "normal" PEM (if there is such a thing!) - where I crash after overexerting, and then recover. It used to take me 3 days to recover from PEM, though if I had severely overdone it, it might take 4. But now I generally recover in a day, unless I've severely overdone it.

But I haven't been as ill as you are and have not had a crash as severe as you. Sitting up has never caused me the kind of issues you have - trouble breathing, etc. You sound similar to several members who have turned out to have CCI/AAI issues - take a look at these threads and see if anything matches for you:
https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-81#post-2212576

https://forums.phoenixrising.me/thr...i-aai-chiari-stenosis-etc.76887/#post-2215861

https://forums.phoenixrising.me/threads/tracking-cci-aai-mri-treatment-outcomes.62720/
https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/

There are even more threads on this issue - you can do a search for more -

I am currently laying down and plan to be in the state for a while... Reading is hard for me in moment but I did a quick skim and it def seems possible.

I actually have a neck issue that was riled a "block vertebra" when I had it scanned in high school but I am adamant that it was not something I had when I was born because I started having neck jaw and have tingling in high school from wearing helmets and doing things that put pressure on my neck. Even running on concrete would cause pulsating nerve tingling all over my face.

I never had a supine MRI but I will look more into this. I have always suspected that maybe it's truly a neurological thing but I couldn't believe it because it was ruled congenital by my family doctor 20 years ago.

I need to recover my health because when I'm this depleted I cannot even sit up for more than a few mins and going to the doctor is out of the question.

I do still have day to day PEM which would recover when I get sufficient rest but this situation is a complete crash and according to Myhill, seems like a depletion of ATP. I have tremendous lactic acid build up I noticed over the course of the past few days and thought it was weird considering I hadn't done much.

I am getting caught up on reading the last time I read up on new things ME was in 2016 in a very compromised state

 

[Shoshana]

@powertool4
I just want to say hi, and to let you know that many of us understand what you wrote, and a lot of what you are going through, both the physical symptoms mainly, having to live this way,
and also the thoughts and fears, the severe crashes cause us to have.

I will offer that many times I thought it was my last and biggest crash of all, and that I would likely never improve at all, and never have a day that wasnt as bad, and it did take time, but I have had some better times since those. There can be some wax and wane, and I am thankful for those times I had when I was a little better, and could do something.

So it always might happen again.
You are not so very old yet, either.
We are also hoping for the increased present levels of research to come up with something helpful.

Hang in there. I hope things get better for you.
Meanwhile, know that many of us understand. It is a very upsetting way to live.

There is a section of this forum, for Severely ill, mostly bedbound people.
And there are distraction sections, if you can handle that, at some moments.

 

[powertool4]

@powertool4
I just want to say hi, and to let you know that many of us understand what you wrote, and a lot of what you are going through, both the physical symptoms mainly, having to live this way,
and also the thoughts and fears, the severe crashes cause us to have.

I will offer that many times I thought it was my last and biggest crash of all, and that I would likely never improve at all, and never have a day that wasnt as bad, and it did take time, but I have had some better times since those. There can be some wax and wane, and I am thankful for those times I had when I was a little better, and could do something.

So it always might happen again.
You are not so very old yet, either.
We are also hoping for the increased present levels of research to come up with something helpful.

Hang in there. I hope things get better for you.
Meanwhile, know that many of us understand. It is a very upsetting way to live.

There is a section of this forum, for Severely ill, mostly bedbound people.
And there are distraction sections, if you can handle that, at some moments.

Thank you.. crashes are always long and terrible

 

[Learner1]

I actually have a neck issue that was riled a "block vertebra" when I had it scanned in high school but I am adamant that it was not something I had when I was born because I started having neck jaw and have tingling in high school from wearing helmets and doing things that put pressure on my neck. Even running on concrete would cause pulsating nerve tingling all

In addition to the helpful links @Mary posted above, you might find @jeff_w 's website helpful:

https://www.mechanicalbasis.org/

If your issue is not structural, then, in addition to branched chain amino acids, I find that liposomal glutathione before and after exertion has greatly helped me reduce PEM. But you have some clues that it might be structural, so carefully look at the imaging needed to diagnose and read through the website and links above.

Best wishes....

 

[powertool4]

Thank you I just read thru it. I have a cm herniated disc starting in high school and have always had neck issues so will have to find a specialist to do the testing once I'm able to go see a doctor.

As for now Im just waiting doing nothing hoping my neurological system will recover.. haven't tried dribose or baking soda. Too depleted to risk any side effects at the moment but will keep in mind for the future hopefully

 

[Wishful]

I need to recover my health because when I'm this depleted I cannot even sit up for more than a few mins and going to the doctor is out of the question.

I wonder if anyone here has had a thorough set of tests done, with negative results, and then had them redone at the worst part of the crash, and found differences. Even without the prior tests, do people during crashes show some clear abnormalities or other disorders (viral infections or whatever)? I know that going to the doctor now would be a major problem, but it might also be the best time to discover what's causing or sustaining the crash, which might be something other than ME.

 

[powertool4]

I have been reading about lactic acid and this is one thing I never tested. Even in the ER gasping and unable to breath they didn't test for it.

I fairly convinced this is my issue. At my limit I can barely move before I start sweating and cannot breath. When I say breath, I mean I feel like I am not getting any oxygen and I lay down cannot move and have really rapid shallow breathing which I'm reading is very common in lactic acidosis.

This only happens at my limit. I am currently at my limit in this crash. I've always wondered why I had breathing issues with tingling numbness and the feeling like I will die of oxygen starvation when I hit these limits.

It appears for people like me, my aerobic energy system is faulty and my body resorts to anaerobic pathway which only lasts for a while before I start to have serious symptoms.

For years I was wondering why when I push too hard I would have to lay down, have rapid shallow breathing for an hour without any movement to get any semblance of relief.

During my "normal" non crashed state I can do more things before this limit kicks in. I have PEM but the biggest most painful thing is this hard limit I have when I do too much on any given activity. The limit gets better the more I avoid overexertion but in a crash like the one I'm experiencing right now I can barely go to the bathroom before I'm gasping for air and sweating.


If myhill theory is true (which falls in line with my own symptoms) then my body has issues with energy production that eventually leads to serious problems in the energy cycles that ultimately make me suffer quite a bit.


What do I do with this info I don't know... Doesn't seem like I can drink a ton of baking soda to accelerate the crash it seems like I just need the body to create more atp and not use it all which takes time.

 

[Hip]

See the PEM Busters thread.

 

[Learner1]

@powertool4 if you find you are hypoxic (high lactate is related) you might see if you can try hyperbaric oxygen therapy (HBOT).

For mitochondrial issues, a MitoSwab test could diagnose problems with mito function, and then, you might find you have primary mito disease, which is genetic, or secondary, likely kicked off by oxidative and nitrosative stress, a known factor in ME/CFS. If the latter, reducing peroxynitrites and looking into replenishing damaged mito membranes offers promise - its helped me a lot.

But, you'll have to sort through these answers and see what fits you best. We are a complex lot, with a variety of factors leading to our symptoms.

Best wishes..

 

[powertool4]

@powertool4 if you find you are hypoxic (high lactate is related) you might see if you can try hyperbaric oxygen therapy (HBOT).

For mitochondrial issues, a MitoSwab test could diagnose problems with mito function, and then, you might find you have primary mito disease, which is genetic, or secondary, likely kicked off by oxidative and nitrosative stress, a known factor in ME/CFS. If the latter, reducing peroxynitrites and looking into replenishing damaged mito membranes offers promise - its helped me a lot.

But, you'll have to sort through these answers and see what fits you best. We are a complex lot, with a variety of factors leading to our symptoms.

Best wishes..

Thanks I haven't had mito testing done. The last testing I've done was by Genova or metametrix and they looked at some vitamin profiles etc but nothing specific to mito issues.

I actually have been thinking about hbot because I follow someone who's husband has brain injury who's been helped by it a lot.

Thanks. One day at a time today was a rough one

Can you expand on the mito membrane stuff?

 

[Learner1]

Can you expand on the mito membrane stuff?

The attached articles explain how peroxynitrites can damage mito membranes, and how nutrients and phospholipids can be used to repair them. I have had success with this strategy, both in my symptoms and my labs.

Both Ron Tompkins, at the recent NIH Conference, and Anthony Komaroff, in his recent JAMA article, spoke of oxidative and nitrosative stress being a known problem in ME/CFS.

The last testing I've done was by Genova or metametrix and they looked at some vitamin profiles etc but nothing specific to mito issues.

The Genova NutrEval can be helpful in targeting the peroxynitrite problem, by showing your levels of the key nutrients. I also did a HDRI nitrotyrosine test which is a marker of peroxynitrites.