Living with this illness

Hi I'm new here. Hoping to meet some other people who know what living with EDS is like. I was diagnosed when I was 13 years old, and ever since it's been tough to deal with but I try to be strong. The biggest issue is always feeling tired. I know EDS can often come along with other disorders and I suspect I might have CFS too.

Does anyone else also have other disorders?

4 Replies

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  • Welcome to the HealthUnlocked community full-of-fatigue. We're just getting started here but hopefully more people will join soon!

  • Hi full-of-fatigue, it's great to see you on here!

    Do you mean Chronic Fatigue Syndrome? I know that other EDS sufferers in my family certainly suffer from fatigue and we all sleep a lot, but I don't think any of us have been officially diagnosed with it.

    The only other condition I have been diagnosed with is fibrous dysplasia, but I suspect I may be unusual in that respect.

  • Hi full-of-fatigue,

    I have Aspergers as well as HMS/EDSH. I have all the traits for Raynauds too but have yet to get a formal diagnosis on that one. Fatigue certainly seems to be a common factor with HMS/EDS sufferors though it is possible you may have ME/CFS alongside too (many auto-immune illnesses seem to run alongside & crossover each other with symptoms).

  • I have HMS and Fibromyalgia and now diagnosed with IBS too. OA in cervical spine and hands, carpal tunnel and DDD. But apart from that and the depression at times I feel wonderful, lol

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