By Kasey on Saturday, June 03, 2000 - 02:13 am:

Hi, I have a few questions for the knowledgable people on this board. Okay, all my life I have had motion well outside of the range of "normal" people (although I
always thought it was normal until I discovered how much it grossed people out), my arms rotate well beyond what other's so, as do most of my other joints excpet
my knee which instead cracks constantly anytime I stand up. My joints are always coming out of joint with no pain except for a feeling of misalignment for which I
am constantly cracking them, if they aren't cracking themselves when I move. But recently I have begun to experience pain in my joints especially at night when I am
still for a while, and have had to undergo therapy recently because I am a musician and both my thumbs have subluxing Mp's (apparenly dramatically so). But when I
first when to my doc and he figured that this was the problem, he never mentioned anything else to me except that if I kept putting more pressure on the joint I
would develop arthritis soon. He never mentions hypermobility or EDS to me, and neither has my therapist. So I'm wondering if they just don't think anything's
wrong, or if they're just uninformed. I am just worried because I am a classical musician and if my joints get more lax or I develop pain in them, I'll need to find a
new line of work (I'm 21 right now). Oh yes, this is common in my family to one degree or another in almost everybody, although I seem to be the most dramatic.
So does it sound like I should go to another doctor that maybe knows more or discuss it specifically with my GP? And what sort of doctor would I go to if not my
GP? Thanks for any help, and for reading this rambling post. It's late and I feel as if I'm not being very coherent. Thanks again.
Kasey

By John on Saturday, June 03, 2000 - 02:14 am:

Your description indicates that you suffer from HMS. By the way you can suffer from HMS without having EDS(This is a connect tissue disorder). There is no cure
for HMS (despite the claims from some prolotherapy advocates). The only good news is that as you age your ligament structure will tighten. This happens to males
at about 28 to 30 and females in the mid forties. HMS is not uncommon amongst musicians (we do not know why) and it might be of value for you to visit a
physiotherapist who treats the local orchestra. Otherwise mid range strengthening exercises will help. Do not at any stage stretch, you are already mobilie enough.
Nothing should be done at the joints end of range, this includes exercises and also playing your instrument. You should also practice in short bursts with adequate
rest periods.

By ue C on Saturday, June 03, 2000 - 02:14 am:

A kindred spirit!

What do you play?

I also don't have much pain, except when a dislocation occurs. Keeping my fingers slightly curved seems to increase the strength.

I tried a guitar last year -- I had pains for MONTHS after playing it.

But Contra Also Clarinet, saxophone, euphonium, and some other instruments pose few if any problems for me. I also marched for 12 years and hope to rejoin a Sr.
Drum Corps again when I'm in a city that supports a "good" corps.

By Paul on Saturday, June 03, 2000 - 02:15 am:

Kasey:

First let me advise you to not include your email
address on your posts. Companies can sell information
on you to insurance companies and it can haunt you after
you leave college. (I'm not joking, I saw this on 60
Minutes!)

Second, I share your need to constantly crack misalligned
joints. However, as hard as it is, I would limit your cracking
to moments when you absolutely have to. I am convinced that my constant
cracking has exacerbated and accelated by problems. I have been told by doctors that
cracking weakens and stretches ligaments--not a good thing for hypermobile
folks. This will then increase misallignment and your need to crack.
And you alread know about the arthritis.

Good luck. I know how you feel. Many of us feel our dreams threatened.

By Jonathan B on Saturday, June 03, 2000 - 02:15 am:

Hi Kasey
Try and get a referral to a consultant rheumatologist and/or a geneticist either should be able to help if you go to them saying EDS HMS etc.I have found that if you
let docs guess they are not too good at this.
Take care and good luck Jonathan B

By Sue C on Saturday, June 03, 2000 - 02:16 am:

I DID use your advice when trying to find specialists. Several ortho doctors refused to see me because they don't have the knowledge -- good for their honesty!

Skip the rheumatologist -- they're no better than a GP.

Find out the reputation of health centers near you before wasting your time, like I have. For example, I found out the University of Virginia medical center, which
has an excellent reputation, doesn't live up to it! Specialists I've seen (and others my friends have seen for different reasons) all work with blinders on. It's no wonder
they don't have more problems there! (remember... this is the baby-switching hospital you've heard about for the last 6 months)

Knee dislocations prompted me to seek out specialists at UVA. I told EACH about my HMS. And they didn't care. They ONLY looked at my knee!

Good luck.

By Greg on Saturday, June 03, 2000 - 02:16 am:

Kasey,

The sky is blue, wrestling is fake, and most doctors don't even know what HMS/EDS is. I have gone through surgery, and a crapload of doctors for 4 years until I
met with a prolotherapy doctor who mentioned EDS without me saying anything. Most doctors who do know about it will jsut dissmiss you because they think they
know it all and that there is no use trying because there is no treatment. Best advice: find a new doctor!
Good luck

Greg

By Odds on Saturday, June 03, 2000 - 02:16 am:

Somewhere on this page someone directs to Proffesor Grahame, search this file and have a look for what he has written. Also have a look on the Ehler-Danlos
pages. Print out any information you recognize and take it with you to see a doctor. HMS/EDS are the most misdiagnosed syndroms there are. Keep searching for
the right doctors ( orthopeadic ?!!)The urlier they find it, the better for the future !

By Sallyann Barke on Friday, August 18, 2000 - 02:47 pm:

Hi my name is Sallyann and I've been suffering with Scheurmanns Disease for at least ten years. When I eventually got to see a consultant they told me that there is nothing they can do for me. They also found that I was hyper mobile, something I've never heard of until now. I get pains in my hands and feet, they feel as though they are really stiff. Recently my left knee has began to give me real pain when I put any strain on it , especially when walking down stairs. When I mentioned this to my G.P she keeps telling me that its all to do with my bad back. However, I went to another G.P and he has given me a drug called Vioxx that not only seems to be helping with my knee, but also with my heels which are extremely painful. It's just so nice to be able to speak to someone that understands what your going through and not dismiss you out of hand.

By Patrina on Thursday, August 24, 2000 - 10:02 pm:

Hi, Sallyann,

Vioxx can help with inflammation and pain. But you need to keep after your G.P. to get a diagnosis. Probably x-rays, maybe MRIs. My point of view is that it *does* make a difference what's causing the symptoms, and we can make better-informed decisions when we know.

You might (or not) need to see a specialist. For me, referral to an orthopedist means I'll either be scheduled for surgery or told I don't need it right now. I'm getting a referral to a rheumatologist (specialist in connective tissues disorders) & though others haven't had much luck with it, I'm giving it a try. My doctor's choice is very busy so it will probably take a long time to get in to see him, but at least there's some hope.

I'm pretty new to this, too. Not new to hypermobility or the pain, but to knowing it might be something I don't have to just live with for the rest of my life. I'm 41 years old & have had knee problems since at least 2nd grade, probably earlier. That age is when I recall first having a knee dislocate & stubbornly refuse to go back into place.

Unfortunately, I also stubbornly refused to tell anyone because I feared doctors. Wrong choice! I kept trying to run, bike, etc. and everything just made it worse for me.

Your case sounds a lot different than mine, but if I were you I'd find a different doctor & in the meantime avoid stairs & other pain-causing activities when I could. What are the other pain-causing situations you've had?

Very tired, and this is real long, so will go for now. Please come back & let us/me know what you find out. It might be plain old arthritis as a result of the hypermobility (I had it by the time I was 21; the injuries from dislocations & partials did a lot of damage).

By Sallyann on Friday, August 25, 2000 - 04:21 am:

Patrina, thanks for replying to my message. In reply to your question I,ve had an MRI about a year ago which picked up the fact that I had Scheurmanns, this is a type of osteocondritis which affects the vertebrae in the back. It makes me really stiff and I feel like I need to go on a rack! I might actually get some relief if I did. The so called specialist kept telling me that this couldn't be causing the pain yet my physio shown me my x rays and the pain correlated to the damage done by the disease. I was referred to a pain clinic in which the consultant told me that osteocondritis is inflamation of the spine, he was the one to prescribe me Vioxx. This has had the added benefit of helping to deal with the Plantar Fascitis in my feet, which I've subsequently found out from this site it is a consequence of being hypermobile. Do you know that one so called doctor wanted to refer me to a psychologist! Boy did I give her a piece of my mind. This is what is so annoying, because you have lived with the pain for so long and get on with your life, when something does tip you over the edge and you need help, the medical profession couldn't care less. Anyway enough moaning and thanks for replying.

By Patrina on Friday, August 25, 2000 - 05:08 pm:

Sallyann (& whoever else may be reading),

I had an MRI today & new x-rays for my left knee. It'd been locking up, semi-buckling, and generally bugging me for a while. I was supposed to have the MRI yesterday, but the straight position was so painful we had to stop. Today my doctor told me to take 2 Darvocet(100s) prior to the MRI. That hardly dented the pain when I went back today; bit my knuckles through most of it. But we completed it, anyway.

This left knee is finally catching up with my right. The right has been worse for years, and I had arthroscopic surgery (to remove loose cartilage bits & bone spurs) in 1981 and in 1998.
Both times recovery was real quick but the surgeries only relieved the worst symptoms. I still can't do many stairs, run, etc.

I've got a lot of pain & restriction of movement in my left thumb. That's on the back burner for now. As are shoulder, etc. etc. etc.

Your Scheurmann's interests me. I have sciatica, apparently unrelated to the arthritis/mild stenosis they found in a CT scan. What's really weird is that when I'm in certain positions, like on my side, I feel a 'pop' every time I breathe. I don't know what's up with that. I'm guessing a vertebra is kind of 'loose.' Have you ever heard of anything like that? I'm going to check the web for more info but don't really know what keywords to use in a search.

Thanks for getting back to me. I have good contacts at a fibromyalgia message board (yes, have that too), but this hypermobility stuff is a new language to me!

Take care,

Patrina

By Lisah on Tuesday, November 13, 2001 - 11:08 am:

Nothing left to do? My hips are slipping as I try to stand, my thumb is going stiff (not a pleasant change) and my ribs are stuck in a very awkward position. And that's just last month's novelties. I was already in a pretty much disabled state before all this. Practicly all joints are involved now. I am totaly lost here. My docs tell me there is nothing they can do. I don't get it. I know the HMS is not to be cured, but isn't there something they can do about my hips and my thumb and my ribs, or even one of those. They coldheartedly say they see no options, not in bracing, not in operating, not even in simple pain medication (as NSAID's don't work). Should I accept this or keep looking for answers, I am so tired, but I can't just leave it like this either, the pain is unbearable even when I do nothing all day.

By Michele Carter on Friday, August 22, 2003 - 11:50 am:

My 12 year old son has Fibromyalgia & BHMS and I called his doctor to find out what specific exercises he was to in PE and he informed me he was to do the same exercises as the other kids. He has been doing them now for 3 days and he cant hardly move do I continue to allow him to do these exercises or what.
HELP