TMG was eye opening + need advice

[Pheenix997]

This could be due to orthostatic intolerance or another form of dysautonomia, not necessarily ME/CFS.

It's not orthostatic intolerance. I've had my BP checked lying down then standing and it goes up slightly like it should normally.

Dysautonomia also seems unlikely. Although I could do a 3 day ecg and go from there. I'm not always breathless when working out it depends on the day. I do have asthma

 

[Pheenix997]

Hey @arewenearlythereyet I live in Canada and CFS/ME is not even recognized as a real diagnosis. I was never diagnosed by a doctor because they don't believe it's real. So even if I was diagnosed, it would've been merely a condescending way for them to get rid of me .

That said, I do have all the symptoms of CFS. Not ME - that always seemed more serious to me. I am not bedridden. But I am limited in the hours I work each week and the socializing i can do.

If I don't have CFS, I wonder what it could be. I haven't been checked for autoimmune markers but I doubt it's that. My blood tests all come back fine. All my hormones including testosterone and cortisol are normal. My vitamin D and B12 are good. My WBCs are okay albeit a little low. Blood pressure is good. No STDs or other active infections.

It's not depression either it's a different kind of fatigue; malaise is more accurate. An icky feeling in the head when you exert yourself. Fatigue from depression is different.

And no my workouts are fairly intense. I was athlete my whole life so I've always exercised in an intense way. I do get PEM though. It's a more general fatigue and heaviness in the head though not necessarily bedridden, although today I am - I slept 13 hours but I think it was the Methylb12 that thing sedated the hell out of me ! Felt like I took a sleeping pill.

I've had chronic tender lymph nodes in the neck under the ear for the last 5 years that sometimes hurt badly after alcohol but not sure if that's normal or not. That reminds me - if I drink a good amount of alcohol in a social/ party setting if takes me 4-5 days to feel at baseline again.

 

[arewenearlythereyet]

Hey @arewenearlythereyet I live in Canada and CFS/ME is not even recognized as a real diagnosis. I was never diagnosed by a doctor because they don't believe it's real. So even if I was diagnosed, it would've been merely a condescending way for them to get rid of me .

That said, I do have all the symptoms of CFS. Not ME - that always seemed more serious to me. I am not bedridden. But I am limited in the hours I work each week and the socializing i can do.

If I don't have CFS, I wonder what it could be. I haven't been checked for autoimmune markers but I doubt it's that. My blood tests all come back fine. All my hormones including testosterone and cortisol are normal. My vitamin D and B12 are good. My WBCs are okay albeit a little low. Blood pressure is good. No STDs or other active infections.

It's not depression either it's a different kind of fatigue; malaise is more accurate. An icky feeling in the head when you exert yourself. Fatigue from depression is different.

And no my workouts are fairly intense. I was athlete my whole life so I've always exercised in an intense way. I do get PEM though. It's a more general fatigue and heaviness in the head though not necessarily bedridden, although today I am - I slept 13 hours but I think it was the Methylb12 that thing sedated the hell out of me ! Felt like I took a sleeping pill.

I've had chronic tender lymph nodes in the neck under the ear for the last 5 years that sometimes hurt badly after alcohol but not sure if that's normal or not. That reminds me - if I drink a good amount of alcohol in a social/ party setting if takes me 4-5 days to feel at baseline again.

Hi there. Yes I know the Uk is a little tricky to get a diagnosis too. The puzzling thing mainly is the workouts not inevitably causing PEM. I am a mild case but just 2 mins of aerobic activity or lifting anything heavier than 2 kg makes me crash. I think this is typical....but who knows really. For your case low Thyroid and B12 deficiency were the first things that I thought of. PA is often misdiagnosed since the threshold for acceptable b12 and or folate vary a lot from doctor to doctor, country to country. Intrinsic factor test is also only about 50% accurate. If you are responding to b12 it might be worth just relooking at your blood test results including ferritin and any signs of cell size abnormalities although this doesn't explain the lymph nodes? I took my GP's word that my b12 and iron were "normal" however I've found that by looking at the test results myself these were far from normal. If you haven't already I would just check your actual results. Sorry I can't be of more help.

 

[Pheenix997]

Hmm. Here are some results, they look normal to me:
TSH: 1.99 mlU/L (0.30 - 5.60)
DHEA: 4.9 umol/L (0.05 - 10.9)
B12: 306 pmol/L ( >133)
Ferritin: 64 ug/L ( 25 - 200)

I don't remember saying that I don't get PEM; I definitely do. I feel wiped out after working out or doing anything physical and yes this goes into the next day or 2.

 

[arewenearlythereyet]

Hmm. Here are some results, they look normal to me:
TSH: 1.99 mlU/L (0.30 - 5.60)
DHEA: 4.9 umol/L (0.05 - 10.9)
B12: 306 pmol/L ( >133)
Ferritin: 64 ug/L ( 25 - 200)

I don't remember saying that I don't get PEM; I definitely do. I feel wiped out after working out or doing anything physical and yes this goes into the next day or 2.

Ahh ok, perhaps it is just putting the two things together and pacing better. I would stop the gym then if it is causing a predictable PEM. These are definitely to be avoided rather than tolerated. I just don't run, jump, walk quickly or lift heavy weights now. There is a good web forum for the pernicious anemia society who can advise on your blood levels if you want to check these out to be sure They will also ask for folate levels and offer very good advice.

https://healthunlocked.com/pasoc

 

[Pheenix997]

Ahh ok, perhaps it is just putting the two things together and pacing better. I would stop the gym then if it is causing a predictable PEM. These are definitely to be avoided rather than tolerated. I just don't run, jump, walk quickly or lift heavy weights now. There is a good web forum for the pernicious anemia society who can advise on your blood levels if you want to check these out to be sure They will also ask for folate levels and offer very good advice.

https://healthunlocked.com/pasoc

Thanks for the link I will definitely check that out tonight!

I don't think stopping exercise is a tenable long-term solution. I did that for 3 years and I was getting worse. Arthritis set in my neck, I lost all my muscle I used to have when I was a bodybuilder, etc.

I deal with the PEM by sleeping more hours that night. If I can sleep off the malaise the recovery isn't so bad. I expect it to only get better as I continue with exercise.

 

[Pheenix997]

I don't know if this is significant, but I did hair mineral analysis last year which showed highly elevated aluminium (range was 0-12 ppm and I was at 12.5) and moderate levels of arsenic. Mercury, lead and the others were relatively low...

I think the aluminum was from the red bulls I used to drink before I was diagnosed with ADD. I should probably get retested and see if heavy metals may still be an issue. I never did any formal detox...

 

[Paralee]

tmg is betaine?