EDS Diagnosis

P

ProfessorWorm

Active member
I’m prepping for an EDS diagnostic appointment next month, it’s partly why I haven’t been as active as I would like (the other part is severe chronic pain and fatigue). I’ve heard all sorts of horror stories, and I’m absolutely terrified they won’t believe me. I’ve lived with these symptoms all my life, and constantly been told I was being dramatic or making things up for attention so I have lots of trauma already around this. If anyone could give me a rough idea of what to expect that would be great.

On a related note, if anyone has any suggestions for ways to manage in the mean time that would be great. I’m in agony all the time, but I can’t bear to bear weight on my legs let alone walk. I’ve experimented with kinesiology tape but couldn’t get it to provide enough support and upon removal, even saturated in water and eventually oil, it tore off the first few layers of skin.
 
ProfessorWorm said:
I’m prepping for an EDS diagnostic appointment next month, it’s partly why I haven’t been as active as I would like (the other part is severe chronic pain and fatigue). I’ve heard all sorts of horror stories, and I’m absolutely terrified they won’t believe me. I’ve lived with these symptoms all my life, and constantly been told I was being dramatic or making things up for attention so I have lots of trauma already around this. If anyone could give me a rough idea of what to expect that would be great.

On a related note, if anyone has any suggestions for ways to manage in the mean time that would be great. I’m in agony all the time, but I can’t bear to bear weight on my legs let alone walk. I’ve experimented with kinesiology tape but couldn’t get it to provide enough support and upon removal, even saturated in water and eventually oil, it tore off the first few
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Helen h said:
Hi did you go to the appointment? I hope it went well and you got what you need support wise. Happy to share my thoughts now if you still need anything
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Thank you it went excellently. I’m diagnosed with hEDS currently but my geneticist suspects I may actually have kEDS, but we won’t know till my test results come in in the new year. I would love any advice you care to give.
 
Hello Professor Worm, I have no advice to give re EDS but you could check out the link below which will lead to other links for people living with EDS; Facebook groups really are great for personal experience.

Facebook

www.facebook.com www.facebook.com
Best Wishes
Paul
 
ProfessorWorm said:
Thank you it went excellently. I’m diagnosed with hEDS currently but my geneticist suspects I may actually have kEDS, but we won’t know till my test results come in in the new year. I would love any advice you care to give.
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Hi,
Please could you advise how you got your diagnosis on the NHS please? I have been trying for 2 years to get the hEDS recognised that has been diagnosed privately. My last attempt was sent to rheumatology last week. After taking a detailed history and physical examination, the consultant said I dont know much about EDS as we don't deal with that here, but today I've ruled out autoimmune conditions and you have fibromyalgia.

The curveball of hearing this was a shock. Having read up on fibromyalgia since (hyperfocus activated lol), I do think it sound accurate but there are still all the unexplained hEDS symptoms that the NHS still hasn't recognised.

Any advice from someone that actually gets how hard this is to get recognised would be gratefully appreciated.

Thanks
Laura