Misdiagnosed?

[saffmonster]

I was only diagnosed last week and have been reading up on the subject. A couple of things I've read are really interesting. I've read that HMS is hereditary and it's also liked with Fybromyagia (probably spelt wrong). My mum has had Fybromyalgia for about 6 years and I was wondering if it's possible that either of us has been misdiagnosed.

[Eloise]

Well, I am pretty sure that both my mum and my grandpi who have been diagnosed with non-RA factor RA have been mis-diagnosed. So if I get a proper diagnosis for myself from Prof Bird next week - I might be sending a whole load of my relatives off to see him. Especially my uncle and his two kids (12 and 10) who seem to be having lots and lots of joint problems atm.

I personally don't have fibromyalgia - so I can't comment on that - but I know it can be linked - and so it is worth looking at the thread on this. http://www.hypermobility.org/forum/viewtopic.php?f=4&t=2945

People can have HMS alone or fibromylgia alone or both together. And although hereditary - it is worth each person getting there own diagnosis, as being "bendy" doesn't necessarily mean having the syndrome. My brother can do all the "party tricks" but as yet has never had any joint problems (or any problems for that matter - lucky thing!)

[gila]

imo it's more likely that your mum is misdiagnosed or is missing a diagnosis(i.e. she might well have fibro, but secondary to HMS).
Fibro has had a lot more media and health bod attention=gets dxed more often than HMS, when there are 'difficult to explain probs'.
google 'Beighton score' and 'Brighton criteria' and see how your mum scores and then (or anyway) get her to see whoever dxed you.
xxg

[saffmonster]

I'm really glad I know what I've got now.

I've been suffereing with back pain for about 6 years now and I'm sure my GP thinks I'm just a hypercondriac (probably spelt wrong ) after endless trips to visit him and constant nagging for him to do something about it. I've been prescribed diclofenac (which REALLY diagreed with my stomach) and some other anti-imflamitary pills which has the same effect. They caused pain so bad that I forgot about my HMS for a couple days

A couple of years ago a physio told me I had a tilited pelvis and gave me excersises which did nothing but make me hurt more, so I just got on with life and suffered.

Then a few months ago, my knees started hurting. My GP said I had something similar to tennis elbow and sent me on my way. I persisted and went back for yet another visit after which he finally refered me a new muscular skeletal facilty near me. The lovely physio diagnosed me after just a few mins. I was also really glad to know that my back pain was also part of the HMS.

A few other things finally make sense to me now too. I'm always covered in bruises and I seem to get tired a lot (though it was just old age at 32 ).

Look forward to speaking to others with similar problems.

Dani

xx

[libby]

hi saffmonster,
welcome, though suffering from all that pain must be hard.
i hope you're in less pain these days, or if not, i hope you've found things that help.
as far as i know, anti-inflammatories are often useless in treating hms-related pain because the chronic pain associated with hms isn't caused by an inflammation. at least, this is what i know as a patient. before i knew i had hms, i was given anti-inflammatories too and they only gave me stomach aches but had no effect on the pain.
what you wrote about getting tired a lot sounds very familiar. i'm in my thirties too. people sometimes tell me i'm ahead of my time because my body actually believes it's 90 years old.
my mother has hms too (and my maternal grandfather), but she was never diagnosed. she knows she has hms only because i was diagnosed. i think hms is often misdiagnosed; very often.
you might want to be extra careful with physiotherapy; it can be useful but it can also be harmful. if you can, try to find physiotherapists who are knowledgeable about hms and who know how to take it into consideration. the important thing is to strengthen your muscles so that they hold your skeleton in place (as much as possible) but you should be careful not to stretch your joints as far as they can go or they'll pop out. when you stretch, always stop before you reach your full range of motion. i think.