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Ehlers-Danlos Support UK
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First Rheumatologist Appointment

Hi I am new to this.

So I am 27 and have hyper mobility. Growing up I’ve had various ailments/ injuries etc but it hasn’t been till recent years that I’ve realised that they all could be linked to EDS.

The list is long but to name a few:

- full score on Beighton scale

- unstable joints

- joint pain

- joints sticking

- Raynaud’s

- lordosis

- IBS/ gastric problems

- low blood pressure

- lightheaded/ dizziness

- bruise easily

- migraines

My Doctor hadn’t picked up on this but I mentioned it and as a result he has referred me to a Rheumatologist. (Just a general one). I have been waiting around 5 months for this appointment so I want to get the most out of it plus I am also needing a 3rd Ankle reconstruction the two previous have failed due to my hyper mobility and my surgeon doesn’t want to schedule the next surgery in till he has an EDS diagnosis either way.

So yeah I want to find out a diagnosis as soon as possible.

What should I expect at this appointment? And what should I be asking / saying .

I am from the UK by the way .

Any help appreciated.

Many thanks .

6 Replies
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It very much depends on which rheumatologist you see. Many but not all will give a diagnosis. They offer pain prescriptions and naproxen, tell you to book a physio or do it themselves, book an mri to see what joint damage you have, and that is that. Although hEDS falls under rheumatology, there is next to nothing a standard rheumatologist can do for it, unless you have damaged joints, so your ankle is likely to be their main focus.

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Thanks for your reply Jay . I’m already on Naproxen and tramadol for pain non of which have helped to be honest and as well as my ankle issue I’m really wanting to get to the bottom of my gastrointestinal issues which again my GP thinks could be EDS so won’t look into any further until they find out about EDS and also about my blood pressure/ lightheadedness (possible POTS?) will the Rheumatologist be able to give me a definitive link about these?

And how do i find out which type of EDS I have if I have it ? Is there 13 types?

Sorry for more questions.

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Hi Aqua9 - I think you need to see a geneticist. I have EDS type 3 and was diagnosed in 2007. No other doctor picked up on it. I knew something was wrong. (My kids have it which is how I found out). I’m 53 and have been dealing with issues for 35 years. Been to numerous rheumatologists/drs that had no clue. Now I have polymyalgia. I always had IBS/gastric problems since my teen years. I have tears in both wrists from EDS and they won’t do surgery - weak ligaments. I wear a brace every night to avoid further damage. I’ve had multiple surgeries on my fingers/tendons and have screws in my thumbs that were dislocated from EDS which they said was arthritis. (Surgery was before EDS diagnose). I also have Raynaud's. Sounds to me like your ankles are not holding up due to your hyper mobility.

I’m from the US.

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Hi Sunset123- thank you so much for your reply , that’s really helpful.

Yeah that’s what I thought and my consultant who I’m seeing about my ankle said it’s a geneticist I need to see too. How do I get to that point ?

What you are saying about yourself sounds like the road I definitely feel I’m going down actually. My wrists are the most recent symptom I’m dealing with. I’m getting a lot of pain in both from simple thinks like lifting the boot of the car , pressing door handles down, turning keys in a lock. And then they ache for hours afterwards. Even on a morning getting up they are so sore I’m not sure if they have been hyperextending while I sleep like my elbows do.

Yeah I had the first surgery on my ankle which failed, the second time the consultant usually would graft a tendon from elsewhere in the body into the ankle but he said there’s no point because of my hyper mobility so he put a synthetic tendon in. This failed too, which he said he hadn’t had fail on him before, but it’s because of the hypermobility. So he’s a bit restricted with where to go next. He’s considering getting a donor tendon but he wants to have a diagnosis on the EDS front first .

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I am sorry you are going through all of this -I understand. It sounds like you are on the same path as me. I also have low blood pressure and bruise easily.

My wrist would hyperextend when I sleep and would wake up with excruciating pain. The tear is in my TFCC. I was diagnosed in May of this year. I purchased women braces for night and my orthopedist told me about the wristwidget during the day - I wear when I need them.

My ankles also hyperextend. They give out on me at times. There are exercises to strengthen.

Do you have names of geneticist Drs in your area? Could your GP refer one?

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I will look into those wrist supports thank you .

No I don’t have the names of and particular Doctors or Geneticist unfortunately.

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