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Can anyone diagnose me?

Hypermobility Forum for people with Marfan, EDS: OTHER ISSUES: Can anyone diagnose me?
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Paul on Friday, June 02, 2000 - 01:34 pm:

I'm still trying to figure out if I have hypermobility. I'm 27 and I can't bend my joints (except for my neck
and shoulders) much further than average. (Though my soft--not velvety--skin streches further
than most people's). My problem isn't usually pain
but a sense of misallignment. I constantly feel the need to
crack my joints (neck, elbows, back, shoulders, etc) in order
put my self back in allignment. Sometimes my neck can't seem to support my head.
And my joints (especially my neck) crack
just by moving them. My rheumatologist thinks these problems
may be related to an unstable collar bone (due to injury and hyper-
mobility combo). My ortho doctor says my curved spine may be too blame. However,
untreated scoliosis is usually associated with lower back pain, which I don't have.
Are there skeletal disorders that cause one to fall out of allignment without pain?
The neck and shoulder MRI was inconclusive except for some signs of arthritis in my neck
(probably a consequence of years of cracking). My late grandfather and I both had(ve) a curved back, inwardly
bent feet, and uneven shoulders.
Please help as I'm hopelessly confused and bitterly sick of clueless
doctors. Thanks for listening.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Greg on Friday, June 02, 2000 - 01:34 pm:

Paul,

Dr. Greg is in the house !!!! I'll do my best here, but please take in mind that I'm only 19, and have had symptoms of HMS/EDS for about 4 years. Okay, the cracking
and clikcing is a key clue to "unstable" joints. How unstable they are? It could vary. My older brother doesn't have EDS but has some joints crack occasionally, no
pain, and is strong as hell. If they crack a lot on their own. most doctors will dismiss it. Not ALL of my joints are visibley hypermobile because of my muscle
strength. For instance, my knees are visible hyperextendable, but my elbows appear to be normal, but both constantly crack and hurt some of the time. It definitely
sounds like you have some level of hypermobility, maybe even on the lower "normal" side for laxity of ligaments.
So, there you have my take. Oh yeah, in my opinion, rheumatologists tend to suck and don't have a clue when it comes to hypermobility. Find a specialist who does
prolotherapy, even if you don't want prolo treatments, a doctor who does prolo tends to have a greater knowledge of hypermobile joints. Good luck !

Greg

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Paul on Friday, June 02, 2000 - 01:35 pm:

Thanks very much, "Dr. Greg", for your help. I just
saw a doctor today, who reported, unbeknownst to me
that my range of motion IS consistent hypermobility.
My elbows bend back 10-15 degrees more than normal, while
my left thumb--but not my right--can come within an inch of touching my wrist.
I was suspecting that I did have hypermobility because
no one on this forum seems to complain of constant misallignment
or compression in the joints--necessitating a cracking response.
Is there anyone out there who shares my symptoms?
Thanks again.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Sue C on Friday, June 02, 2000 - 01:35 pm:

I share the lack of constant pain with you.

My main concern is instability and the feeling that if I move wrong, I'll sublux or dislocate something, then that joint will be sore for several days.

I do pop and crack many joints to regain a full range of motion. When I feel my knee caps sliding out of place, I push my knee caps back into the groove and flex my
leg for a while until my knee cap seems to stay put for a while. (I've also found that I subconsciously and unconsciously rub my knees now.)

I had one knee brace that would align my knee cap for me, but it also turned my lower leg blue with the tightness. I would love to have something keep my knees
stable -- that's my main concern.

I thought my neck was one of my "normal" joints. My most recent/current GP said to avoid roller coasters and amusement park rides because of the instability of my
neck joints, which rarely crack or slide around now. (cracked a lot when marching with bari or tenor saxes for 6 years) He also said to adjust the height of car head
rests to guard against whiplash, which could be worse for those with unstable joints.

I found that a knee immobilizer takes stress off my knee, especially after a dislocation. Have you tried any neck supports to relieve the pressure, even for a while?

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Greg on Friday, June 02, 2000 - 01:36 pm:

Sue and Paul,

I'm sorry if what I said waas confusing. All of my joints except for my elbows are VISIBLEY hypermobile, but my elbow still hurt in the joint and from tendonitis.
All of my joints crack and click also, during "realignment" or whatever it's called.
Sue, you definitely should avoid rollercoasters. I've had whiplash for a full year now and despite all my efforts (PT, chirporactic, acupuncture, tissue massge,
medications)m the pain still persists. This is no doubt the worst pain I've ever had associated with my hypermobility, except for when I dislocated my shoulder. This
is the worst chronic pain though, as I just discovered from a great doctor one month ago that not only did I tear ligaments in my neck during my accident, but also
tore my right trapezius off of my skull !!! My message is simple: Do whatever you can tto protect your neck. I've had chronic neck and back pain now, and my neck
has been a lot more crippling. So take care of your neck everyone, or else you'll end up needing prolotherapy like me. Good luck

Greg

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Paul on Friday, June 02, 2000 - 01:36 pm:

Greg:

I'm really sorry to hear about your crippling pain.
I hope the prolo continues to help you.

Any many thanks for the sage advice--especially from a 19
year old! :)

Paul

P.S. What is the specialty for most of the doctors who
do prolotherapy. Osteopathic medicine?

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Greg on Friday, June 02, 2000 - 01:37 pm:

Paul,

Everybody tells me I act like I'm a lot older! Probably cuz of the "adult" situations I've had like the surgery on my shoulder and all when I was 15.
I think most prolo doctors are D.O. (Osteopaths). Before I settled on my curretn doctor, I went to a so-called "Spinal specialist" who said that he did prolotherapy,
but what he actually wanted to do was some variation of prolo which I knew would help me (he only wanted to give me three shots into one segment of my neck).
This "specialist" was an MD called a physiatrist. I am aware that there are some good MD's that do it and also a few chirpractors (DC's) who do it also. I guess you
kind of have to shop around.
Oh yeah...I had my second prolo treatment on my neck yesterday, and well, the first one didn't hurt, but this one hurt a lot! It was bearable, but I'm a pretty tough guy
I've been told. It will be worth it if it works. Good luck !!

Greg

Top of pagePrevious messageNext messageBottom of pageLink to this message   By ahabb on Friday, June 02, 2000 - 01:37 pm:

what is the reason my joints crack when I lay down or twist a certain way. Is there any help for me or am I doom to hear this till I die. I have taken Cod Liver oil pills
still cracking and popping sounds dont stop when I walk


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