The Ehlers-Danlos syndrome awareness

The Ehlers-Danlos syndrome awareness

It is EDS awareness month.

Here is some EDS info here.

I have Hypermobile EDS (hEDS) When I was diagnosed it was Joint Hypermobility with chronic soft tissue pain. The chronic soft tissue pain was his way of saying ‘developing fibromyalgia’, which I did.

EDS hypermobility symptoms

Symptoms:

  • Joint hypermobility
  • Soft smooth skin that bruises easily
  • Chronic pain and joint pain
  • Early onset Osteoporosis
  • Gastrointestinal issues
  • Dysfunction of automatic nervous system (Including POTs)
  • Cardiovascular abnormalities
  • Fatigue
  • And more

I have all of these except Cardiovascular abnormalities, but my heart, well, it does weird things.

Some comorbids of EDS I have:

  • Thyroid issues
  • Depression
  • Fibromyalgia
  • IBS
  • Tinnitus
  • Insomnia
  • Migraines
  • Dizziness
  • Fallen arches (This was called flexible flat feet for me and likely just due to the hEDS anyway)
  • TMJ

Why awareness is important

I was diagnosed with joint hypermobility syndrome when I was 16. I had been complaining of pain when I was a kid. I was always tired. I had pervasive insomnia. And I finally got diagnosed. At which they told me to exercise. That is all. Never saw the specialist again, until I went to one in my early 20’s and got further diagnosed with fibromyaliga. Also no treatment recommended. Also suggested I do exercises. Never what sort I should Do, though, and figuring that out has been a real trial.

Now when I mention it to doctors they really have no clue what I am talking about. My doc said it was unlikely I had arthritis in my hands because I was too young. And I have pre-osteoporosis. It was blamed on my asthma meds and anti-seizure drugs for migraine, even though I mentioned the joint hypermobility. She said I may have POTS and I mentioned it again. And in none of these things do they think it is related at all. Hell, when I mentioned it to the pain doc he gave me that Look. That said he couldn’t figure out why I was mentioning it because it wasn’t relative, to him.

They have no clue. In no way have I been treated for it. In no way do they think any symptoms I have are connected to it… something new? Fibromyalgia maybe? Not the EDS hypermobility. I have no idea the extent of my miscellaneous symptoms are due to EDS, because it is Never factored in.

And that is the best reason for awareness. This severe lack of knowledge in the medical community about what all forms of EDS can do to the overall body. It isn’t just super bendy. It isn’t just dislocations, bruising, and spraining things all the time, but it is definitely that as well.

Related posts:

EDS hypermobility and joint hypermobility syndrome

POTS

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