Who on this website has fibromyalgia and or Chronic Fatigue Syndrome?

[sage2021]

Even just a diagnosis of fibromyalgia may be misdiagnosed.
Doctors have recently discovered that person with these diagnosis'; actually have a different disease called Ehlers-Danlos Syndrome.

I happen to have Ehlers-Danlos Syndrome (EDS) after being misdiagnosed with fibromyalgia and chronic fatigue syndrome. This was many years ago.

There are now 13 different types of EDS, so the symptoms are different for each case.
Some people have the type and they have hypermobility as their main symptom. I have that type but also connective tissue problems and digestion problems, along with fatigue and just feel sick all over.

I see a specialist that specializes in all types of EDS. He diagnosed me correctly after many years of being told I had fibromyalgia and Chronic Fatigue Syndrome.

So, if you or someone you know has fibromyalgia or/and Chronic Fatigue Syndrome, please ask your doctor if you may have Ehlers-Danlos Syndrome.
Many doctors are recently studying about EDS and now recognize the difference in these conditions.

[Ez-Bri-Z_v2]

Glad you were able to get a diagnosis and hopefully treatment for it. My wife has fibromyalgia along with RA and PCOS, she is constantly in pain and it sucks cause there isn't much I can do for her when she's in a flare up.

[sage2021]

@Ez-Bri-Z_v2
I went to a wellness centre inpatient for 6 months and I don't have fibromyalgia anymore.
I had intense physical, occupational, and speech therapy everyday for 6 months. Even when I didn't feel like doing therapy, it didn't matter to them, I still had to do it.
I was bed bound for many years until I went to that centre/center. When the 6 months was over, I was healthy again and not on any medicine at all for three years. Like Forest Gump said "I was runnin'!"

Then several things happened and I started getting sick again.
Then the COVID-19 vaccines 💉 kind of finished me off! I wish I hadn't had them. I was holding my own until that vaccine really did a number on my immune system.

Is PCOS when you stand up the blood rushes down too fast and you faint? I think it's post orthostatic something but I can't remember the symptoms exactly.

RA I heard is incredibly painful and disabling. Some people are bed-bound with it.
There isn't a cure or really any treatment for Ehlers-Danlos Syndrome either, except if I could go back to that wellness center for another 6 months.
Thank you for your opinion and I hope she does get some good days too.🌹

[FunkyMonkee]

I have a friend that has it but, I haven't talked to her since I lost my house 4 years ago.

[LiamS95]

Thanks for the interesting information.

[sage2021]

@LiamS95
You are very welcome 🌹

[RetroReviews]

I think I have chronic fatigue

[sage2021]

@RetroReview
Really? What makes you say that hun?
You know I had Chronic Fatigue Syndrome and fibromyalgia for 16 years! I was bedridden for all 16 years. I didn't ever go anywhere except to the doctor and a lot of help from other people.
Now you say you might have that along with your leg maladies.
I have to ask this question. Did you get the COVID-19 vaccines 💉? I hope you didn't because it seems people that did started getting other illness' even as the years have gone by.

I honestly don't know how I contracted Chronic Fatigue Syndrome (CFS) and fibromyalgia. I was working when I slowly started getting exhausted and had to start sleeping on my lunch hours.
So, if you would like to share your symptoms here that's ok or you can DM/PM me ok?
I would really like to discuss this with you further but not on a public forum. 😎

[RetroReviews]

Cuz I don't have much energy then again I don't get much sleep either like if I get 4 to 5 hours a night

[sage2021]

@RetroReview
When a person has CFS, they feel like they have a really bad flu all over their body. They feel like someone beat them up and the pain is all over! The fatigue is crippling fatigue. I mean, you aren't going anywhere but the bed!! And all of this never let's up. Sleep doesn't help it either.

[Anonymous]

What’s the worst of it?