Dr says CFS diagnosis difficult with autoimmune issues

[fibrodude84]

My doctor knows I have severe fatigue but is not sure if it's ME/CFS because I also deal with a chronic autoimmune disease. The Dr said it's hard to diagnose CFS when an existing AI issue is known.

I'm just afraid that I won't be clear on what's going on and what the proper treatment plan is.

 

[minkeygirl]

There are plenty of people here who have other autoimmune diseases and immune issues. I don't think that will necessarily alter your treatment for ME/CFS

 

[taniaaust1]

I too are going to say that it shouldnt matter if you have ME/CFS or not as it shouldnt alter treatment plan (other then to exercise or not to exercise). You should be still able to try out things like ME/CFS methylation protocols and stuff even if you do have another autoimmune illness.

Many ME/CFS plans are based on test results so if you showed these results, you could be treated just the same.

note ME/CFS is far more then just "severe fatigue"

 

[minkeygirl]

You may just have fatigue from the Fibro.

 

[WillowJ]

It should get better in a year or couple of years or so when there is a more clear diagnostic protocol and get approved tests for ME.

In the meantime, if you have post-exertional malaise, be careful with that.

Also if you want to try to see an ME specialists, they might know enough to be able to diagnose ME even in the presence of another major disease.

However then you might lose rapport with your current specialist, who might become offended you failed to follow their advice. It sounds like they are not totally opposed to the idea of ME/CFS, just maybe waiting for better diagnostics (i.e. one with agreed-on lab and possibly imaging tests, and not a diagnosis of exclusion).

But it's possible ME could turn out to be an autoimmune disease, in which case the treatment for your other disease may help both.

 

[SOC]

I'm exhausted by everyone telling people to see an ME specialist. There aren't that many, they have waiting lists, people are too sick to get them and most of all they can be too expensive and not take insurance. For most of us it just is not an option. I wish people would get that already.

None of the top ME/CFS specialists I've seen were more expensive than other doctors. They all took insurance. Yes, they have waiting lists, but the answer to that is to get on a waiting list as soon as possible. Waiting a few months is better than not getting treatment for years.

Seeing a top specialist is still the best way to see improvement with ME/CFS, so I will continue to recommend it. Just because some people can't or won't see a specialist is no reason to decree specialist treatment shouldn't be suggested.