Diagnosing JHS (HMS), EDS IV and Marfans

[Guest]

Hello, new here, I've been looking at the diagnostic criteria and I'm wondering where it says in the "Minor Criteria"
" Dislocation/subluxation in more than one joint, or in one joint on more than one occasion. "
Does that apply to the joints in the back? And what do they mean by on more than one occasion?

I've been unusually stretchy all my life but my fingers don't bend backwards and such. In recent years I've begun to experience more and more pain and my spine, shoulders and jaw pop in and out regularly with increasing frequency as the years move on.
Now I'm no contortionist but its always been my tendency to want to stretch and stretch to make my body feel better. Often when I do that though peoples eyes kinda pop outta their heads and they often have told me I'm showing off. While in actuality I'm just trying to feel better. So I know that I am abnormally flexible but like I said my fingers don't bend backwards nor do my knees, so I'm wondering if I fit the criteria under the "Minor Criteria", because if I'm just going by the scoring thing I get at most a 3 outta 9 and I'm not sure of that.
Thoughts anyone?
Thanks.
~ Noelle

[nonyanomemory]

Hi Noelle Welcome to the site.

Sometimes people who are naturally hypermobile are not aware that they are if that makes sense- because to them it has always been a normal range of movement. If you feel that you may have hms perhaps official diagnosis by a suitably qualified medical professional may be appropriate. You don't say if you incur pain and debilitation which can be the difference between the percentage of the population who are hypermobile who don't have problems and the much smaller percentage who do - thus posing the question that they may have the syndrome. Whilst the criteria is on the board for information it is not there for self diagnosis - Have you discussed the possibility at all with your gp that you may have hms or seen a rheumatologist to rule out other conditions and for clarification of the criteria mentioned above in relation to you. I am sorry that I can't help you further but it really isnt possible to 'virtually' diagnosis the condition - we can help to support you with understanding and empathy and tales of how it is for 'us'. But accurate diagnosis should be made by a qualified doctor.

Take care nonya

[Guest]

I do have pain fairly regularly. It comes and goes. I have had debilitating days and many days where I hurt but I get around fine. And some days where I don't hurt.
I don't have the option of seeing a doctor presently. I live in the US and I don't have insurance nor do I qualify for state funded health care. So that's pretty much that.
Really the only question I had was if when they said "joint" do they mean just the major joints like elbows, knees, wrists, feet or does that also apply to the whole spine?
Do you know?

Anyway the only things so far that I've found that help are ibuprofen (only up to a point), rest, sleep and yoga and stretching. If I don't stretch regularly I can count on hurting worse.

[nonyanomemory]

Hi again, with regards to the spine query am afraid I just don't know. Someone else may though - Please peeps.

I am sorry you can't get the treatment or referral to an appropriate professional for official diagnosis - its really different here in the UK and I just really think this is a hard situation for you to be in.

I am pleased yoga is beneficial for you it is important that you do not 'over extend' without realising though.

I don't feel as though I have been very helpful to be honest but I wish you luck and hope you find a way forward. You may well know this already but I thought it worth mentioning the ehlers-danlos american site which may have some information which could help.

Kind Regards nonya

[Mari]

Sometimes people who are naturally hypermobile are not aware that they are if that makes sense- because to them it has always been a normal range of movement.

Hello Noelle,
Nonya has a good point here. I was in that position myself, I didn't realise I was hypermobile - I thought I was 'normal'.
Another point is that some of those manoeuvres on the Beighton score need someone else to do it to you, some can't do them themselves. (Not a very clear explanation, sorry !) So you might score higher than you think. Please don't allow a non-medical person try them on you, though: they could do you an injury.
Sorry to hear you can't see a doctor about this at the moment. I hope you get your medical care soon,
Mari

[Guest]

Well thanks for trying to help. The situation I'm in is the situation many many americans are in as well. We deal with it.
I tend to want to self diagnose and self treat anyway. I simply find that more empowering. However access to health care would be nice.
I do take care not to hurt myself doing yoga and while stretching. I only twice made mistakes with yoga and both those times I was in a class and only doing as the teacher said. Once was with that Bikram yoga. The whole class sucked. I wanted to vomit by the end of that one. And the other time was when I turned my head while in a pose as the instructor told us to. I thought it wasn't a good idea. It wasn't. I got a nasty krick in my neck that lasted a few days.
Now I do my yoga at home at my own pace. It helps not to have someone else telling me what to do. It's easier to listen to my body that way.

[Guest]

Actually I've never thought I was "normal". When I was a child taking ballet classes the teacher would have either me or my sister demonstrate the splits for the class. Now I can't do them these days but I still stand out from the crowd as being unusually flexible. My father years ago told me I was hypermobile because my back went in and out so often as it still does with increased frequency these days. My father does bodywork (massage). He knows about these things.
It's only been in the past 5 years maybe that I've been having more and more pain. I'm 36 now.
And recently when I was having some really horrible and lasting pain for a spell there (I blame overwork) a friend of a friend mentioned the possiblility of hypermobility syndrome. So I started looking into it.
I admit I don't understand it all yet. I don't get the why of it. Yet.
Thanks for trying to help.
The idea that the doctor would have to apply the test to me kinda makes sense. One could get a different result that way.
~ Noelle

[LianneS]

I think it will be down to his lack of education on HMS and knowing more about EDS

Youre probably right there Az...

Lianne

[nonyanomemory]

link to info this site

nonya

[Guest]

Just bumping this post for Shiv.


Can anyone help with these queries?

[Guest]

Hi Noelle,

Sorry to hear you cannot get medical help, people complain about the UK's NHS system, but once we no longer have it they will whine more and it won't be long until it's gone and we end up in your shoes.


It really is best to be assessed by a medical professional, but if you really cannot afford to see a rheumatologist or physiotherapist (Think it is sports therapists over there) then self-diagnosis and management is your only option. The spine is very much a problematic area in HMS, as we tend to have a deeper arch to the lower spine and we also hyperextend the spine making it unstable, which causes great pain. We also are very susceptible to scoliosis as the surrounding muscle and tissue is not strong enough to hold the vertebrae in place. The scoliosis of a HMS person tends to be more shorter shaper curves than that of someone with idiopathic scoliosis. There is also the problem of vertebrae popping in and out of place, which besides causing much pain can nip at nerves.

Hope this helps a little if not ask whatever is needed someone will try and answer

Az

[Guest]

Actually this does help. Thank you. It sounds very familiar. Though I don't have scoliosis. That's a blessing, eh?
Yup keep that health care system. That's what I say.
~ N.

[dissident]

I lived in Cork for five years, it's where my condition first reared it's head. I didn't get any treatment there, however, I do know that the sourthern Health Board have an excellent medical facility in Cork City.

I've put a link HERE. There's phone numbers that you could call for more info.

Take care Siobhán

[Guest]

Hi Noelle,

Can you possibly get an X.ray done on your back? It may be helpful to see what is happening there. It is possible that the spine is flattening which is causing your pain or it could be just the instability from HMS again it is hard to tell without medical tests (Even harder online ).


Az

[Guest]

X-ray? Well without insurance I really can't afford it at present.
Spine flattened? Why would it do that? How would it do that?
Sounds weird, like I got run over by a truck or something. Lol.
~ N.