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? Ehler danlos

Joanne-s profile image
4 Replies

Hello, i'm new here so please bear with me. I have been suffering with Fibromyalgia for many years, in conjunction with that I am Hypermobile, irritable bowel, chronic fatigue, arthritis and have had bouts of depression. My question is I approached my doctor as I believe I have Ehler-Danlos HT as after much reading I am displaying many of the symptoms, including bruising easily, varicose veins and palpitations, but my doctor will not listen and unsure which way to turn.

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Joanne-s profile image
Joanne-s
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madmum1994 profile image
madmum1994

Hi,

I am sorry to hear you are suffering, please check my previous posts, to see my own progression and resolutions.

Good luck :)

Jay66 profile image
Jay66

Hi, this is a common theme for many of us.

Have you requested a referral to a rheumatologist - even if you get a diagnosis, it won't necessarily make any difference to your treatments, but it would enable you to join all the dots between different ailments. My GP was very keen to make a referral (to get me out of the surgery!)

Let us know what happens...

Country4eva profile image
Country4eva

Find a doctor who will listen

joanne-s unfortunately it is typical. As you mentioned palpitations, I suspect you have PoTS. I did home testing for PoTS, proved I had PoTS, took my heartrate diary to the GP, and demanded referral to the local PoTS specialist, as detailed on PoTS UK site. After a 12 week wait, and numerous tests, the cardiologist confirmed PoTS, dysautonomia,and HEDS. Hoorah! So that is how my recovery began. I wish you well in your pursuit of wellbeing.

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