? Ehler danlos: Hello, i'm new here so... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

2,952 members935 posts

? 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.

Written by
Joanne-s profile image
Joanne-s
To view profiles and participate in discussions please or .
4 Replies
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.

You may also like...

Pregnancy and Ehlers Danlos Type 3

diagnosed with Ehlers Danlos Type 3 Hyper-mobility around 3 years ago (at age 20) after numerous...

Is there a difference between hypermobility syndrome and ehler danlos syndrome?

lots of gastric problems due to my HMS and I bruise very easily. Is there a difference between the...

Diagnosis? Is this Ehlers-Danlos?

honestly feel that doctors can't be bothered to diagnose. Does this sound like Ehlers-Danlos?My...

ehlers-danlos and endometreosis?

get out of bed lately because of the pain and fatigue. I was wondering if anyone else has been...

Non alcoholic fatty liver disease and Ehler Danlos syndrome