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Chronic pain

EDS assessment today - would you say this is correct?

33 replies

nnlrvw · 21/11/2022 15:18

Hi all,

I had an EDS assessment with rheumatology today. I went with a list of my symptoms, medical history and also medication. I performed the Beighton test, which the doctor said I scored a 8/9 on (the only one I couldn't do was put my hands flat on the floor without bending my knees). He said that, because it was only 8/9, and I didn't have really stretchy skin, that it was not EDS. He said it was most likely fibromyalgia and hypermobility, but that there weren't any tests to prove it, so that was that. I explained about my other symptoms (such as dental crowding, flat feet, bladder and bowel issues, migraines, joints popping and cracking, eye issues, pain everywhere, easily scarred and bruised etc) but he didn't seem too interested in them, although from my research I can now see they overlap with fibromyalgia, which he thinks I may have.

I'm just wondering if anyone else diagnosed with EDS had to have 9/9 on the Beighton scale, and also stretchy skin? My skin stretches a little, but not super elasticated.

Thanks in advance!

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BunnySneezes · 19/05/2023 09:17

I do pilates and yoga (wheelchair or floor based thanks to POTS) with EDS/HSD. Pilates was actually part of the treatment at UCL (alongside weights machines in the gym and hydrotherapy). The trick is understanding the safe range of movement and having a clued up teacher. For extra safety I do 1:1 and mirror practice at home. Feel it's really helped me and not an immediate no as long as you're not hyperextending.

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nnlrvw · 22/05/2023 10:44

Thank you so much to everyone for your replies - they've been so helpful. And big thanks to @kingsleysbootlicker for the EDS criteria checklist. Looking at it has made me even angrier about the assessment I was given, as hardly anything on that list was checked/talked about - he did the Beighton test, said I only got 8, and didn't have stretchy skin - and that really was all he talked about.

I am currently trying to get a second opinion through my GP, but it's proving difficult to get an appointment, but hoping I get somewhere soon. Not even necessarily looking for a diagnosis if I don't have it, but I would at least like to be seen by someone who takes me and my symptoms seriously (I didn't mention in the original thread, but the doctor was incredibly patronising and treated me like a small little girl, when I am an adult woman, so for that alone I would like a second opinion)

Has anyone had any luck getting a second opinion for something like this? Is there anything that I need to make sure I get across to the GP?

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kingsleysbootlicker · 22/05/2023 11:48

No problem OP, glad you've found it helpful! If you contact the EDS UK charity, they'll hopefully be able to give you the name of a specialist close to you that you can be referred to
https://www.ehlers-danlos.org/

The Ehlers-Danlos Support UK – Support for people touched by the Ehlers-Danlos syndromes

The Ehlers-Danlos Support UK is the only UK charity to support anybody touched by the Ehlers-Danlos syndromes

https://www.ehlers-danlos.org

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kingsleysbootlicker · 22/05/2023 11:49

They have a Helpline you can ring

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nnlrvw · 22/05/2023 12:32

kingsleysbootlicker · 22/05/2023 11:49

They have a Helpline you can ring

Thank you so much, that's super helpful! Really grateful for all of your support :)

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kingsleysbootlicker · 22/05/2023 13:18

No problem at all Smile They run local support groups too (facebook and in person) and you don't need to have a diagnosis to join them, you just need to become a member of the charity and then they'll send you the info

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BunnySneezes · 23/05/2023 00:40

nnlrvw · 22/05/2023 10:44

Thank you so much to everyone for your replies - they've been so helpful. And big thanks to @kingsleysbootlicker for the EDS criteria checklist. Looking at it has made me even angrier about the assessment I was given, as hardly anything on that list was checked/talked about - he did the Beighton test, said I only got 8, and didn't have stretchy skin - and that really was all he talked about.

I am currently trying to get a second opinion through my GP, but it's proving difficult to get an appointment, but hoping I get somewhere soon. Not even necessarily looking for a diagnosis if I don't have it, but I would at least like to be seen by someone who takes me and my symptoms seriously (I didn't mention in the original thread, but the doctor was incredibly patronising and treated me like a small little girl, when I am an adult woman, so for that alone I would like a second opinion)

Has anyone had any luck getting a second opinion for something like this? Is there anything that I need to make sure I get across to the GP?

UCLH Rheumatology accepts nationwide tertiary referrals for hypermobility so you could ask your rheumatologist to refer you on. Drs Hakim, Kazkaz and Mittal are based there.

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nnlrvw · 23/05/2023 12:03

BunnySneezes · 23/05/2023 00:40

UCLH Rheumatology accepts nationwide tertiary referrals for hypermobility so you could ask your rheumatologist to refer you on. Drs Hakim, Kazkaz and Mittal are based there.

Amazing, thank you so much. I finally have an appointment to talk about this with my GP, so will bring this up with them too and see what they think.

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