My PEM episodes feel like a hangover

[Aerose91]

I dont believe i have OI either, or if i do its not glaring. How would i know if i dont have the obvious symptoms? I definately have SEVERE PEM tho....

 

[SOC]

I dont believe i have OI either, or if i do its not glaring. How would i know if i dont have the obvious symptoms? I definately have SEVERE PEM tho....

I didn't believe I had OI, either, and I was SO wrong. Treatment has improved my quality of life. I can do quite a bit more than I could pre-OI treatment, but I still have PEM. OI treatment did not cure PEM/PENE. It did, however, increase how much a can do before PEM hits, so there might be some connection.

You should probably be tested for delayed POTS. The short test won't do, especially if your symptoms are not obvious. You should be standing (or tilted in a TTT) for at least 30 minutes in order to catch the delayed form.

Some of your symptoms could indeed be OI-related, but I don't think swollen lymph node would be. You should have those lymph nodes checked out by your doc, if you haven't already. They could be ME/CFS-related, but they could be something else entirely and should not be ignored.

 

[Aerose91]

I didn't believe I had OI, either, and I was SO wrong. Treatment has improved my quality of life. I can do quite a bit more than I could pre-OI treatment, but I still have PEM. OI treatment did not cure PEM/PENE. It did, however, increase how much a can do before PEM hits, so there might be some connection.

You should probably be tested for delayed POTS. The short test won't do, especially if your symptoms are not obvious. You should be standing (or tilted in a TTT) for at least 30 minutes in order to catch the delayed form.

Some of your symptoms could indeed be OI-related, but I don't think swollen lymph node would be. You should have those lymph nodes checked out by your doc, if you haven't already. They could be ME/CFS-related, but they could be something else entirely and should not be ignored.

Thanks SOC

I have been thouroughly looked over by Dr Enlander and he seems pretty certain that the swollen lymph nodes are ME related.

Would Dr Enlander be the one to perform a delayed POTS test? I am finding it very difficult to get the tests done that i need because if i suggest them to a doctor who doesnt understand ME they just pawn me off as a crazy hypochondriac.

For example, i recently went to a cardiologist because Dr Enlanders EKG showed that i had had a heart attack. They did an ultrasound and great stuff but when i asked them if they could test my circulating blood volume they looked at me like a quack- like im sure we all have experienced.

 

[SOC]

Thanks SOC

I have been thouroughly looked over by Dr Enlander and he seems pretty certain that the swollen lymph nodes are ME related.

Would Dr Enlander be the one to perform a delayed POTS test? I am finding it very difficult to get the tests done that i need because if i suggest them to a doctor who doesnt understand ME they just pawn me off as a crazy hypochondriac.

For example, i recently went to a cardiologist because Dr Enlanders EKG showed that i had had a heart attack. They did an ultrasound and great stuff but when i asked them if they could test my circulating blood volume they looked at me like a quack- like im sure we all have experienced.

Well heck! If Dr Enlander thinks you have ME, then I'd be pretty confident that you do.

I don't know if Dr E can perform the delayed POTS test, but I'd guess that he knows enough about it to steer you in the right direction.

Have you seen the ME/CFS Primer for Clinical Practioners? The section Orthostatic Intolerance and Cardiovascular Symptoms on pg 24 might be helpful to you at this point.

Yeah, docs who know nothing about ME/CFS are great at treating us like we're idiots. The only thing that saves my sanity is remembering that they're the ignoramuses, not me.