Maybe it's hypermobility syndrome - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Maybe it's hypermobility syndrome


Sound familiar? I've saw a rhuematologist years ago who said I had rheumatism. Then another who said i had reflex sympathetic dystrophy. Then recently the podiatrist said I needed new insoles for my very high arches causing heel pain, bunions and ankle pain. Then a surgeon operated on my bunion and said i have osteoarthritis. Then a rhuematologist said I had sesamoiditis (inflammation of thumb bones). Then a surgeon said I have synovitis in my wrists. SO I went back to the GP and said why have I got all these different things? He said maybe its caused by hypermobility syndrome! So hello, I've come to join you.

12 Replies

YES!!!LOL, I had all the symptoms diagnosed one by one since childhood until somebody connected the dots when I was 26yrs old.

I have 'flatfeet', I have 'lazyitis', I bruise easily as I have sensitive skin, I have IBS, I have torn ligaments in my ankle, I have 'hypermobile joints' hang on it just might be I have EDSH/HMS.

Welcome to the group Rowantree :)

Thanks. It is kind of nice to join the dots and not think I'm hypochondriac! Now it makes sense. I had thought -how can I have all these different things and they not be related? Now it makes sense. I thought I just had osteoarthritis that spread weirdly quickly from my toes to my ankle and heels and wrists. But no HMS makes much more sense! Doesn't seem to make much difference how its treated though. Each one is still treated separately but at least it all Akers more sense. I was worried that I had rhuematoid arthritis.



It is really interesting to hear how other people suffer and how long it takes for doctors to join the dots and realise it's EDS/HMS causing all the problems.

In some ways I think classical sufferers are lucky because the ease with which we cut and bruise seems to lead doctors to investigate more seriously at an early stage because of the frequency of trips to A&E with injuries! Although this can mean that classical sufferers are unaware that their other symptoms are caused by EDS as well.

Anyway, the more we discuss the more we will all learn!


Its funny how many people come to a diagnosis of hypermobility by a roundabout route. Maybe because so many docs dont look for it. I was finally found out by a consultant rheumatologist while checking hands and neck as have OA . Stretched an arm out and she said Ahh youve answered my question. Never realised I was so special, but after reading up on EDS/HMS it makes me aware that double jointed has nothing to do with joints. But at least by discussing or asking there are people who can suggest likely problems or symptoms to be aware of. The only problem is so many people close to me dont understand which is isolating at times. Its strange to look back and see how many dots there are which now are beginning to add up.

I'm rather late in replying to this - I was the other way round - diagnosed with Ehlers-Danlos Syndrome type 3 (hypermobility) aged 15 and with Rheumatoid Arthritis when I was 32. It's complicated having more than one condition especially as not all medical professionals are familiar with EDS. Having said that, I think health professionals' awareness has improved now compared to when I was younger.

Hidden in reply to francherry

I dont know if its good to find out so young that you have this or not. Looking back I am now aware that a lot of the health issues I have had are down to a tissue disorder. On the FB site there are posts as diverse as children with balance problems riding a bike.. can tick that box.. to those who have had surgery for joint problems etc which often has only exacerbated their condition, which many didnt know they had. One good thing as I now have an idea of why I have so much pain and some very strange symptoms is I wont be told anymore that there is nothing wrong and feeling as if I'm lying..this led to such a loss of confidence and confusion ,not to mention deep depression and a desperation for someone to hear what I was trying to say. I wonder why so many EDS ers go on to develop RA, Lupus or some other Autoimmune disease. Thankfully my blood tests have ruled this out. My father had this..I'm almost certain..cant ask now as he died a few years ago and suffered greatly with OA in neck and knees especially. I agree wit you that more people are becoming more knowledgeable about this. I will ask my GP if I can leave HMSA poster at the surgery. May save someone the misery that I have experienced for the last 15 years.

Hello, I have suffered with painful knees since childhood. I continue with pain, and have recently been to Rhuematologist who said he thinks it might be Hypermobility and wouldn't need to see me again! When I keep going back to the GP they are now telling me what do I expect now that I am in my 40's, we all get aches and pains! Well with the daily pain, some days are bad I am now thinking I am going completely mad and it is getting me so low I am looking on the internet and came across this group. I know doing your own research isn't good as we all can look into thing too much, I just don't know what else to do .....

Oh it's so horrid to be told "we all get aches and pains" when you know its so much more than other people's aches! It is so upsetting isn't it. Welcome crazie_faerie here is a place where you can join the dots. Try out different meds, give them at least two weeks before you give up, keep trying until you find one that helps. Beware of resting one joint, as it can cause problems in others... It does make you feel low. This is a good place to chat, and the pain concern one, to get support.

Thank you Rowantree, I really didn't expect a reply so quickly.

I am not on any medication and have been told to buy over the counter painkillers by the GP. I do feel I keep going to the GP more to try and get some answers to my on-going pain.

I only had strong -ish pain killers (I have yet to find ones that actually work) when I fractured my knee cap 5 years ago, with no amount of physio and exercise this continues to cause me daily problems. I can no longer run, it often gives way on me and stairs are often a challenge. This is not good when you are a lone full time carer of a 4 year old, and making excuses that 'Mummy is having a bad day'. Then there is work, which I am now more mobile with my post and drive a lot.

In the last 12 months my hands seem to have a mind of their own, dropping things and flicking pens across the table at meetings. They get the shakes at times and can double click on keys or mouse when using my laptop. I also, in the last 3 years have been having episodes of my sight going, numbness in my right arm and fingers which then goes to my face, nose and tongue. The GP said he needs to see this happening, which is difficult when you cant drive or see the numbers on your phone to call someone. I just hope it never happens when I am driving, it is probably not related, but I thought I would list all. I have always suffered with getting cold hands and feet from childhood, my hands can actually tell if there is a drop in temp in the office and take ages to get warm again.

I am wondering if this condition is aggravated by any knocks and bumps? I have knocked my elbow on the desk at work and ended up with an infection in the joint, had a hip infection for no apparent reason. Since falling down the stairs many years ago my neck and should have never been the same, so in constant pain and can no longer raise my one arm above my head or behind my back. I have had physio for this which made no difference even over a long period of time. Bowels have become a problem in the last 3 years, but daren't go to the GP again, due to feeling a hypochondriac and not having faith as I cant get my other ailments sorted, if you know what I mean?

I think that is enough of all my ailments, sorry it's quite a long list/ reply and I sound very clumsy!

Thank you for your support

Welcome to the forum sorry to hear you had so many complications before they finally got you and diagnosed you properly.

I have those extra movements in my fingers too, causing me to double click the mouse, or click when I don't want to etc. what's this all about then? I do have flicking fingers too at rest, just two fingers. The GP and hand therapist have seen this but neither seems to know what's causing it.

You can be tested for Rheumatoid arthritis, which starts in hands and feet.

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