Pain from top till toe

Hypermobility Forum for people with Marfan, EDS: Pain: Pain from top till toe
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Odds on Friday, June 02, 2000 - 01:23 pm:

Hi there...

Eventually I've been diagnosed with HMS 14 years ago.The funny thing is...nobody told me !
An orthopeadic surgeon wrote it in a letter to my doctor and somehow, they just forgot to tell me...
Untill now !!!
Since the age of 11 ( 20 years ago ) I've visited at least 15 orthopeadic surgeons and I had a piece of my shoulder-blade removed.
I suffer from head to toe from aches, like millions of stabbing knives.
Sounds familiar ?
I would love to receive some of your best advices and excersises !!!
Allmost all my joints crack and my ribs, breastbones and neck dislocate all the time.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Paul on Friday, June 02, 2000 - 01:24 pm:

Wow, sorry to hear about your condition. Have you found
anything that provides relief? (e.g. prolotherapy,
massage, accupuncture).

Personally, I'm still trying to figure out if I have
hypermobility. I can't bend my joints (except for my neck
and shoulders) particularly far. (Though my skin streches further
than most people's). No one in my family has suffered the same. 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. And (like you?) my joints 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 say my curved spine may be too blame.
I'm hopelessly confused.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Sue C on Friday, June 02, 2000 - 01:24 pm:

What do you do to help the instability?

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Odds on Friday, June 02, 2000 - 01:25 pm:

So far I haven't found out what to do, but I really hope my ortho-surgeon can give a real good advice. The past yaers I found out that classical physiotherapy relieves
a lot of the muscle aches and when anything is really,really dislocated, ortho-manualtherapists can put bones back into place. Warmth, like a sunbench relieves pain
a bit and painkillers like Naproxen do a little.
Long hot showers also work sometimes. I hope to find out about an excersise-schedule that might work for the future. Does anyone do any excersises ?The problem
with HMS is that it manifestates in different forms, some more concentrated on certain areas, some overall.
The cracking is irritating, 'cause you tend to focus on it all the time...The big issue is the fact too little doctors know enough about HMS and it's so hard to find out
what's the best thing to do. Guess listening to your body is a wise thing...Don't do anything that feels wrong somehow !And most of all...try not to give up on
yourself, keep believing in the fact that maybe one day they'll find the cure that helps...Maybe a little to optimistic, but feeling down doesn't help and might even
make you feel physacally worse!Hey and this page helps ! At least we're all in the same trouble !


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