Still losing functionality, but why?

Messages
7
Hello,

I haven't had PEM for about 3 months, been pacing very carefully for months and I went even further and started agressively resting a couple weeks ago.
The good news is, this helped me with many symptoms (e.g. joint inflammation).
The bad news is, I can't do the activity I used to be able to do just a month ago. For example I was still able to listen to music which I tolerate very poorly now.

Did this happen to anyone else at the beginning of this ilness?
If so how long did it take you to reach a plateau from where you didnt drop any further?

PS. My diet is clean and I check for intolerances/ allergies regularly.
 

Davsey27

Senior Member
Messages
506
I feel you

One thing I am learning is that there are no guarantees even when you are doing things right.Sometimes there are factors outside ones controls

Have you tried to gradually increase your energy envelope not in a GET kinda way but doing like 1 or.2%

Its amazing how some recover with Self management alone but perhaps many dont and need that help.from.LDN,Valcyte or some agent.

Curious what made you suddenly do aggressive rest?

I know Dr Lapp mentioned that below 1,000 steps a day you can decondition if your capable of 2,000

Again ni hard rules since everyone is different depending on severity.

I think there are no hard rules to this but perhaps check in to see if you maybe were overconservative.with the aggressive rest

Perhaps it and maybe factors outside pacing be contributing

Hello,

I haven't had PEM for about 3 months, been pacing very carefully for months and I went even further and started agressively resting a couple weeks ago.
The good news is, this helped me with many symptoms (e.g. joint inflammation).
The bad news is, I can't do the activity I used to be able to do just a month ago. For example I was still able to listen to music which I tolerate very poorly now.

Did this happen to anyone else at the beginning of this ilness?
If so how long did it take you to reach a plateau from where you didnt drop any further?

PS. My diet is clean and I check for intolerances/ allergies
 
Messages
7
LDN,Valcyte or some agent
I heard good things about LDN, I'll do some more research and see if it could help me.

Curious what made you suddenly do aggressive rest?
It seems to be the common consensus on here on how to get better. Aside from that I was slowly developing brain fog which I wanted to avoid at all cost and so far, I did.
Perhaps it and maybe factors outside pacing be contributing
Maybe the heat plays a major role? I know heat intolerance is common for ME and I can barely sweat. But can heat alone reduce your activity level this much?
 

Davsey27

Senior Member
Messages
506
Its possible the heat can play a role as well as re-activated infections.Where do you live?
 

Learner1

Senior Member
Messages
6,293
Location
Pacific Northwest
Hello,

I haven't had PEM for about 3 months, been pacing very carefully for months and I went even further and started agressively resting a couple weeks ago.
The good news is, this helped me with many symptoms (e.g. joint inflammation).
The bad news is, I can't do the activity I used to be able to do just a month ago. For example I was still able to listen to music which I tolerate very poorly now.

Did this happen to anyone else at the beginning of this ilness?
If so how long did it take you to reach a plateau from where you didnt drop any further?

PS. My diet is clean and I check for intolerances/ allergies regularly.
Other than a clean diet, what kind of nutritional support are you doing? I am very active these days, but it takes a fair amount of protein, NMN, proper adrenal, thyroid, and other hormone support, and significant antioxidant supplementation to mop up the oxidative stress that exercise is provoking. I have had glutathione alone reverse PEM, and in an earlier phase needed both BCAAs and glutathione to head off or reverse it.

ME/ CFS creates a significant demand for biochemical resources in the body, and there is no way that one can support a lot of exercise without supplementation, in my opinion and experience. So, unfortunately, the more exercise one does without the support, the more one gets depleted, and this can also stress the immune system which can provoke chronic infections as well as just the simple biochemistry.
 
Messages
7
Its possible the heat can play a role as well as re-activated infections.Where do you live?
Germany. It shouldnt be too hot here but unfortunately its been around 27°C in my room the past couple weeks. I feel like my whole skin is burning sometimes.


Other than a clean diet, what kind of nutritional support are you doing?

Unfortunately I dont have enogh money for so much supplemention as you suggest. I'm only taking the essentials that I dont get enough of from my diet like vit c and d.
Is there anything you consider essential, which I cannot get from a meat-heavy diet?
 

Hopeful2021

Senior Member
Messages
262
Other than a clean diet, what kind of nutritional support are you doing? I am very active these days, but it takes a fair amount of protein, NMN, proper adrenal, thyroid, and other hormone support, and significant antioxidant supplementation to mop up the oxidative stress that exercise is provoking. I have had glutathione alone reverse PEM, and in an earlier phase needed both BCAAs and glutathione to head off or reverse it.

ME/ CFS creates a significant demand for biochemical resources in the body, and there is no way that one can support a lot of exercise without supplementation, in my opinion and experience. So, unfortunately, the more exercise one does without the support, the more one gets depleted, and this can also stress the immune system which can provoke chronic infections as well as just the simple biochemistry.

Hello - it's interesting to read you say you need lots of protein. That's my experience too.

I recently added glutathione to my IV therapy I get about 2x a week. It's made a substantial difference.
I also take an iso-quercitin and N-acetyl cystine. I have to say these 3 new things to my NAD have enabled me to be so much stronger-- get out and do things about 3-4x a week.
I learned about NAC from learning about this current virus epidemic and the cytokine storm. It's like our inflammation is better labeled as a cytokine storm.
It's good to read your post today. Thks