Newbie- Does Hypermobility Spectrum or EDS rule out a diagnosis of CFS?

[Insomniac]

I had a diagnosis of CFS and ME for 28 years. I now got Hypermobility Spectrum.
Do I still have ME?

On Youtube Dr Peter Rowe says ED/HMS are separate conditions but co morbid - you can have both. He seems to have done a bit research on this.

Dr Chedhha from the Center of Complex Disease says that you can't have both. She is a CFS expert. The hypermobility EDS specialist that diagnosed me also says you can't have both.

What is the accepted consensus?

 

[hapl808]

Dr Chedhha from the Center of Complex Disease says that you can't have both. She is a CFS expert. The hypermobility EDS specialist that diagnosed also says you can't have both.

This sounds like, to use medical terminology, absolute and complete nonsense. How can anyone possibly say that? If the diagnosis of ME/CFS is based on a loose symptom cluster with no definitive way to diagnose it and without an understanding of the underlying mechanism, on what basis is she saying that? We barely understand anything about EDS and diagnosis is still a crapshoot, and we probably understand LESS about CFS.

So yeah - no. I'm gonna go with a consensus of one. Once they can definitively explain the exact mechanism of ME/CFS that prevents it from being co-morbid, then I'll be happy to listen. (Because by then they'll have won a Nobel and will have even better credentials.)

I hate the hubris of physicians. Now let them explain to you why COVID isn't airborne and we should all wash our hands carefully.

 

[Insomniac]

So you say they *can* be co morbid, because both are diagnosed on a loose symptom cluster.

But some illnesses with no test do rule out CFS.

For example I know someone with non celiac gluten intolerance who still claims she completely recovered from "ME" after stopping gluten.


With EDS and hypermobility, the treatment is a specific type of graded exercise.

Some with EDS genuinely do recover and improve a massive amount on that. To almost near normal functionality.

In CFS, exercise tends to make people worse.

So that is why one might rule out the other.

 

[Tammy]

In a nutshell..............NO.........a diagnosis of EDS does NOT rule out a diagnosis of CFS.

 

[hapl808]

Some with EDS genuinely do recover and improve a massive amount on that. To almost near normal functionality.

In CFS, exercise tends to make people worse.

So that is why one might rule out the other.

Unfortunately I think I have both. Graded exercise makes me worse because of constant PEM crashes, AND my ligaments and tendons get injured all the time by regular tasks because I can't strengthen them. When I was mild-moderate, I was able to do careful PT and improve in between crashes. Now there is no in-between.

 

[Jyoti]

Unfortunately I think I have both

I absolutely have both and have been diagnosed with both by several doctors, including one of the big CCI surgeons. So, @Insomniac --my experience tells me both are very much possible concurrently. In fact, I was reading something i found a link to on PR last night describing studies that demonstrate how common hypermobiliity is in CFS.


Peter Rowe--personally, I'd listen really carefully to anything that man says! I weep buckets that he only treats kids!

 

[heapsreal]

I had a diagnosis of CFS and ME for 28 years. I now got Hypermobility Spectrum.
Do I still have ME?

On Youtube Dr Peter Rowe says ED/HMS are separate conditions but co morbid - you can have both. He seems to have done a bit research on this.

Dr Chedhha from the Center of Complex Disease says that you can't have both. She is a CFS expert. The hypermobility EDS specialist that diagnosed also says you can't have both.

What is the accepted consensus?

There are several types of EDS and some also have pots with this. If you had eds/pots and they treated your pots and your cfs type symptoms went away, you could possibly say it wasn't cfs but instead pots causing the fatigue?? But then again pots can be hard to treat and it's found in cfsme without eds , so ???? Or one big abbreviation, cfs/me/eds/pots??
I couldn't imagine too many drs at all understanding that one lol.
Good luck👍