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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!

OP posts:
Lal33 · 21/11/2022 23:03

I was diagnosed in 2010ish with 7/9, stretchy skin etc but no actual subluxation history by a specialist in Manchester - Dr Ho. I know the diagnostic criteria has changed since though. Its right that for hEDS there's no genetic testing and diagnosis is made on clinical observations. Can you get a 2nd opinion?

TheArtfulStodger · 21/11/2022 23:22

That's not right. You don't need to score 9/9 and not everyone has super stretchy skin.

If that's what the rheumatologist is saying, then I've never a hope in hell of being taken seriously over it.

Mykittensmittens · 21/11/2022 23:29

My DD has EDS. I have no doubt. She has all
the things you describe but also her cousins, aunties, and my DS all have it too.

The rheumatologist wouldn’t confirm a diagnosis outside hypermobility. I asked why, when her DB was diagnosed pre-Covid and has exactly the same scale result and symptoms - she told us the criteria had recently changed and is now far more stringent.

she actually said that without a cardiac issue, going forward she would not be giving any positive EDS diagnoses.

This was September.

TheSausageKingofChicago · 21/11/2022 23:34

My diagnosis was ‘joint hypermobility syndrome, potentially EDS but it doesn’t make much difference in the long run’. And that’s the thing really. The treatment (or lack of) is the same.
Best thing I’ve done is started lifting weights. I took it slowly and work with a PT and I am a lot more stable these days. Still covered in bruises and get fatigued quickly, but injuries are far less.

BlossomWood · 21/11/2022 23:52

I'm in the midst of is it EDS, Pots, Fibromyalgia? They all crossover and its difficult getting a decent specialist in the area I live.

Ivyy · 22/11/2022 11:36

Unfortunately this seems to be the case now, new criteria brought in so as pp said without a vascular issue they avoid using the EDS "label". You will likely hear hypermobility / hms only now from most Drs diagnosing, lots of people seem to be given the fibromyalgia diagnosis as well now, I don't know why? I'm not sure how they assess for pots now but it used to be separate and the tilt table test, I'm diagnosed with HEDS and pots but this was a few years before they changed the criteria. Agree with pp you don't need to score 9 on the beighton for a diagnosis! I think mine was 7 and couldn't do two of the things because of arthritis and pain. The EDS UK charity has lots of helpful info and a private Facebook group you can join, they have a phone advice line as well that might be useful. I think I'd want more info and a second opinion as the Dr sounds very dismissive, the beighton comment is wrong and I'm not sure how your other symptoms suggest fibro?

OatFox · 22/11/2022 11:37

I got a diagnosis post-changes of EDS and it was extremely difficult and diagnosed by a geneticist and not a rheumatologist. I have heart issues but not vascular EDS.

kingsleysbootlicker · 22/11/2022 11:56

This is the current criteria for assessing for EDS, have a look at it yourself and see if you tick enough boxes for a diagnosis. Either way, I'd ask for a second opinion from another Rheumatologist (and bring a print out of the criteria) because even if you don't tick enough boxes for EDS, your diagnosis should then be Hypermobility Spectrum disorder. Same symptoms/problems as EDS, they just narrowed the EDS diagnostic criteria in order to fing the gene/genes responsible for it. EDS/HSD is often misdiagnosed as Fibro.

EDS assessment today - would you say this is correct?
kingsleysbootlicker · 22/11/2022 11:57

That image mightn't be clear enough so here's a link to it too
www.ehlers-danlos.com/heds-diagnostic-checklist/

kingsleysbootlicker · 22/11/2022 12:03

Sorry, me again Grin Realised I forgot to mention the point of me posting the current criteria... only 5 is needed on the Beighton score if under 50, 4 if over 50

nnlrvw · 22/11/2022 15:11

Thank you everyone for your comments, they're all so helpful. It's very useful to know you don't need 9/9 and stretchy skin for a diagnosis - I did think this was a bit weird of the doctor to say!

It seems like it's incredibly difficult to get a diagnosis, due to mis-information between doctors and also just not being believed. But I am going to go and get a second opinion and hope that I can get some more answers. Thank you all so much for your help, and I hope that you all get the answers you deserve too!

OP posts:
skywatch25 · 25/02/2023 14:01

My DD has ASD and I know that there is a high instance of EDS in people on the autistic spectrum - she has a load of symptoms that, since recently learning about EDS, I think could be an explanation. Bowel and bladder problems, leg pain, Raynauds, Perpetually blocked ears, allergies (food and environmental), unable to regulate temperature (Cannot Stand heat), feels dizzy when stands up, feels achey if she has to stand around, visual stress and 5/9 on the Beighton scale, quite stretchy skin. Took her to the GP who listened to what we had to say and said she'd consult with her colleagues. Next appointment said she didn't think it would be helpful to my DD to have the label of EDS - they weren't discounting the possibility she has it but wouldn't take diagnostic steps either. My view is that it's NOT about having a label, if she has EDS and that's why she has all these seemingly unrelated problems, then she needs to know about it. The GP said we just have to carry on treating each symptom individually. Any similar experiences like this? Opinions?

Antisocialfluffmonster · 13/05/2023 09:10

I’m 8/9 and got a diagnosis BUT I had to wait until my children also scored on the scale as then I had a family history. my granny was also doing contortionist tricks into her 80s… that helped, plus frequent recorded dislocations, mcas etc.

one thing I’ve noticed is the nhs have stopped using the actual name for things. They will give it a general description. For example I’ve got Graves’ disease and hashimotos.

but the endocrinologist just said oh you have antibodies for both hyper thyroid and hypo thyroid. I then asked so graves and hashimotos? And she appeared almost annoyed that I’d known those terms, “well yes”. The rheumatologist was the same, he called it hypermobility but stated eds in the letter to my gp. It’s like being infantilised, or to stop us googling things.

HEDS is I feel falling out of favour as a diagnosis, because it can’t be confirmed with genetic testing. The reason they tightened up the criteria was to allow for a testing project to try and identify the gene for hEDS but honestly they just don’t like the diagnosis.

i thibk with anything that can’t be treated such as FM CF, it’s just deny and dismiss or blame it on mental health.

BunnySneezes · 13/05/2023 09:25

I was reclassified from hEDS to HSD by UCL because my skin wasn't stretchy or 'soft' enough

doadeer · 14/05/2023 08:08

I always find the hands on floor one is a poor indicator of pelvic hypermobility. I have a very hypermobile pelvis which destroyed me in pregnancy, I can do extreme range of external rotation but because I have tight hamstrings and long legs I would fail the pelvic hypermobility one on the Beighton test. I know my range is extreme as I run a yoga studio so I see lots of people moving their bodies!

Sorryyoufeelthatwayy · 18/05/2023 22:21

I had the same feedback despite 9/9 score, POTS, painful raised angry scarring, slipped discs, fallen arches, heart murmur as a child, bruise like a peach for no reason blah blah i could bore you all day.
My skin isnt that stretchy but without sounding like a vain twat I look 10 years younger than i am.

i was told hyper mobility, CFC and Fibromyalgia (not sure why Fibro). I guess it doesn't matter as it makes no difference to treatment…but i was rather bemused.
Or is there something that can help with the pain?

I was told never to do yoga again so thats interesting @doadeer

3peassuit · 18/05/2023 22:41

I’m really surprised that anyone with EDS does yoga. Hyperextending joints and limbs would result in immediate dislocation for me and my DDs.

doadeer · 19/05/2023 06:40

Sorry i don't have eds I was just commenting on the hips element on the Beighton test. I still practice yoga and pilates, but I modify my physical practice

QuintanaRoo · 19/05/2023 06:59

Dd has an eds diagnosis from a rheumatologist and would not score 9 on the beighton test. Think she only scores 5 actually as she can’t bend her thumbs back. I was suspicious she had it and took her to the GP, who blatantly look,Ed at me like I’m mad but referred her anyway and she has a diagnosis. She doesn’t have stretchy skin either but her toes dislocate a lot and her ribs subluxate.

I am 100% sure I have it. Bladder problems, my knees and elbows bend backwards. I have loads of joint problems. Saw an osteopath last week who I hadn’t mentioned anything to him but he started asking if I can bend my thumb back, etc. so I knew what he was thinking. He says I definitely have it, that people with eds their muscles feel different under the skin and mine feel like I have eds and he says my pelvis is very hypermobile.

I don’t think I’d score highly on the beighton test, 4 probably. Though I did used to be able to touch the floor but can’t now I’m older. I know the beighton test doesn’t diagnose eds, and I’ve heard a lot about a move away from diagnosing eds and just saying it’s hypermobility?

I don’t even know if I can be arsed to go to the GP to chase a formal diagnosis . I believe that GPS are now being told not to refer to rheumatologist but make the diagnosis themselves. My GP obviously doesn’t know much about it as they said they didn’t think Dd had it but then she got diagnosed. I’m not sure what the benefit of a proper diagnosis is unless you think you have vascular involvement. Dd just got given a leaflet and then discharged. I think we’ll if I don’t have a diagnosis at least I don’t have to declare it for travel insurance 😁

QuintanaRoo · 19/05/2023 07:03

And osteopath told me to stop doing pilates and lift weights instead. He said the last thing I want to do is make my pelvis more mobile.

doadeer · 19/05/2023 07:17

Pilates is all about pelvic stability. I did this as recovery from my horrendous pregnancy, it took absolutely ages to built the stability of the joints and the tiny ligaments and muscles around. It was very subtle but very strong. I did 1:1 sessions for a year with an expert trainer. Pilates saved my life. If I do have another baby I will make sure I have done absolutely loads before!

QuintanaRoo · 19/05/2023 07:29

I’m definitely going to talk to my Pilates instructor rather than just give it up. She’s clued up on stuff like this (and has told me multiple times I’m hypermobile) and already adjusts exercises for me so I think I’ll be fine.

doadeer · 19/05/2023 07:46

The key with pilates is technique really... Small movements well executed. Gosh I could barely walk I couldn't have done weights. Good luck!

Namechange600 · 19/05/2023 07:52

This thread is so interesting. I have POTS / likely MCAS, endometriosis, adenomyosis and PCOS.
so seems likely I have EDS I think?
very soft stretchy skin (look younger than I am) but not all joints are super bendy side from ankles and wrists/thumb.
a handful of subluxations.
2 children with ASD.
Pilates with reformer also saved me after a big 9lb baby.

QuintanaRoo · 19/05/2023 08:03

Namechange600 · 19/05/2023 07:52

This thread is so interesting. I have POTS / likely MCAS, endometriosis, adenomyosis and PCOS.
so seems likely I have EDS I think?
very soft stretchy skin (look younger than I am) but not all joints are super bendy side from ankles and wrists/thumb.
a handful of subluxations.
2 children with ASD.
Pilates with reformer also saved me after a big 9lb baby.

Could be dd has pots and fibromyalgia as well. I have mcas

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