Is here someone with HMS symptoms but not HMS?

[AnnaH]

I thought I wasn't bendy because some members of my family could successfully join the circus, but it turned out I should compare myself to "normal" people, not the rest of my family LOL.

Ironically, I have the worst HMS symptoms, even though some of my relatives are much more bendy than me. My consultant says it can work like that.

[madmum]

I have been left confused this week. My 10 year old son has been diagnosed as joint hypermobility. His rheumy says no syndrome. However he has the following problems, painful knees with a maltracking right kneecap,bendy elbows,fingers and toes hypermobile,flat feet with severe pronation particularly the right,he can put his ear on his shoulder without raising his shoulder,gets severe pain in his hands and fingers when writing,has gut pain?ibs symptoms,deteriorating eyesight,according to his specialist pain amplification,migraine,hayfever,bruises easily,very clumsy,always tired but not able to sleep due to pain. So which is he hm or hms? He has other allergies and was lactose intolerant as a young child. At the moment he is very low and lacks confidence. He is being admitted to hospital for extensive physio as his quads have deteriorated. Can anyone from this tell which he is? I have a lot of similar symptoms but not diagnosed. I am 44 and have osteoarthritis in one knee,3 parts of my spine,neck and one wrist and thumb base. I also have umbilical hernia. I am now permanently tired but not sure if it is meds,my own fatigue or lack of sleep due to my pain and his lack of sleep.

[Rosie]

Hi all

AnnaH - it was exactly the same for me. I haved several siblings who are more flexible than me, but I have the most issues.

madmum, not all rhuemies are knowledgable enough to recognise or diagnose HMS or EDS3. Others get ideas in their heads like ' you can't have EDS unless your skin is really stretchy' and diagnose accordingly.

HMS cannot be diagnosed accurately until any other possible causes have been ruled out, e.g. my DD1 was checked for Marfans before her EDS3 was diagnosed, this is the nature of 'syndromes'.

Once other causes have been ruled out, as far as I can see if it looks like HMS, smells like HMS and tastes like HMS, then it probably is HMS.

You may need to see another rhuemy, or ask to be referred to an HMS specialist.

Rosie

[madmum]

Thanks Rosie. I am looking at getting him referred to G.O.S.H. Think his rheumy is quite good but the syndrome comment has left me wondering.

[madmum]

Just been checking the rheumy letters and on the first two she says joint hypermobility syndrome. Her most recent says hm. However she says he has severe pain and is not functioning normally at school or sleeping properly. Second letter mentions pain amplification,third not. First letter says moderate hm,second says mild and third moderate but not severe. Any wonder i am confused?

[Jill]

Many posts at this forum say about clear X-rays, but I already got OA and chondromalacia signs on x-rays and MRI (I'm in early twenties) in knees, hips and shoulders. Is that 'normal' for HMS?

[gill]

Hi everyone, only just registered with site having had surgery yesterday on my foot. Having read some of the posts I have to say I'm a little confused about diagnosis. During childhood my knee would dislocate and relocate on a regular basis with tremendous pain and swelling which lasted for weeks I was always told by doctors that I would grow out of it until the age of 16 when I was referred to an orthopaedic surgeon who I think the term was realigned my patella with surgery since then I have not had any dislocation. However all of my joints are very flexible or lax and I have severe flat feet which last year one was giving me a great deal of pain even after trying the usual orthotics both NHS and private I had a bag full. I asked for a referral to a foot surgeon who did a flat foot reconstruction with a bone graft in March this year. After months of physio I felt it was not right was struggling with the physio moves and my foot felt completely unstable. I believe if my joints had not been so flexible or lax the surgery would have been very successful my foot had a lovely 'normal' shape. However yesterday the surgeon has now done something with the tendon on the outside of my lower leg to stabilise my foot with hopefully some success. My confusion is do I have HMS if so do I need to go somewhere for a diagnosis so that this can be on my records should I require any surgery in the future. appreciate any advice.

Gill :