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Author Topic: Hypermobility novice  (Read 2041 times)

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Offline yeoates

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Hypermobility novice
« on: April 06, 2003, 11:31:29 PM »
Hi Guys!

I have guessed for a long while that I am hypermobile but have only just had it confirmed after a referal to a specialist for ongoing joint problems - referral was mainly re neck and back pain, but I've also had an ACL reconstruction in 2001 and a lateral release on the same knee last year, plus ongoing pain in my left knee which I haven't done anything about.

The specialist kindly told me I was hypermobile and then I was ushered out the door, never to see him again with no advice or guidance about how to cope with it, apart from telling me that he couldn't help me further.

My basic question is; help - what does being hypermobile really mean in terms of my ongiong and never ending pain and what can I do to try and make things better? - sorry a huge question I know but I'm really in the dark and would love some advice from those in the know.

Many thanks in advance ;D

Yvonne
Osgood-Schlatter's disease when a teenager, Arthroscopy May 2001, ACL reconstruction July 2001, Lateral Release August 2002 complicated by heamarthrosis and infection, another arthroscopy 2004.

Offline rhea

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Re: Hypermobility novice
« Reply #1 on: April 07, 2003, 04:35:32 AM »
Hi There Yvonne!  Welcome to KNEEgeeks...  us hypermobile members have sort of dubbed ourselves as "the odd bods" so welcome aboard!  

The doctors I have seen have been very limited as far as their experience with dealing with various degrees of hypermobility syndromes.  I've had to rely on these people here and their wonderful website refferences to educate myself on my condition.  The best website (one which you being in England will particularily be interested in) is www.hypermobility.org There are several doctors in the UK that deal with a lot of hypermobility syndromes that perhaps would be able to help you devise an approach or plan on how to manage it.

As far as treatment goes....well there is not much to be frank.  What seems to be the most sucessful is physiotherapy to keep the muscles supporting the joints strong to help prevent or reduce micro traumas that us odd bods do to ourselves on a daily basis.  I think your part of the world seems to be much more up on hypermobility, pain clinics, etc... than where I am (Canada) so perhaps trying out a pain clinic to get help liviing with this might be very beneficial.  

All the best Yvonne!  I'm sure you'll get lots of suggestions of good websites to check out, but in the mean time I'd start with www.hypermobility.org and than if you desire more detailed information you may find www.ehlers-danlos.org and www.edfn.org.  www.ceda.ca is also good if the site is up again.

big (((hugs)))

rhea
7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Offline Shazinoz

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Re: Hypermobility novice
« Reply #2 on: April 07, 2003, 05:25:41 AM »
G'Day Yvonne,
I am another fellow Odd Bod, Rhea did a great job of explaining etc and I can only say the same sort of things. Being hypermobile can simply mean that your joints have a larger range of motion than is considered "normal", it is what peopl in the past have called being "double jointed" (which I must state is IMPOSSIBLE), IF you have Just hypermobility then there is usually nothing mre else to worry about but when you have hypermobility + Symptoms (including dislocations, subluxations (partial dislocations), pain, frequent injuries form minor incidents, and also this can include skin problems and tummy problems and eye and heart  problems and so on and so on, once you start having symptoms then oyu are thought to have HMS (hypermobility Syndrome) or ONE OF THE Hypermobility Syndromes that include EDS (Ehlers-Danlos Syndrome) of which there are 7 (I think) sub types (and this is what I have), Marfans (Marfan's Syndrome), OI (Osteogenesis Imperfecta) and More. Once you have symptoms it is worse see a rheumatologist who specialistes in the Connective Tissue Disorders (ie. EDS, HMS, Marfans, OI) etc and maybe also a Geneticist as most of these disorders are Genetic. As Rhea said there is NO cure for Hypermobility or any of the HMS's asnd with treatment we are ALL different and what works for one dosen't necessarily help the next and can infact make there pain and symptoms worse. PErsonally I don't have much luck with PT when others swear by it (I tend to hurt myself further), but what does work for me is Hydrotherapy, hot compresses, hot baths, Medications (I take MsContin , Neurontin, Vioxx and MORE), Bracing, Mobility Aids as needed,(ie. cruthces, wheelchair, electric scooter etc etc), Bed Rest (when Bad), distraction, Meditation, and MORE but this depends on what your problems is, your body and a LOT of other things. I also have RSD and this means that I CANNOT use ICE no matter what (when some with the HMS's find that Ice helps).Look Hypermobility up on the NEt and if you go to the section called (I think it is "USEFULL WEB PAGES" or something like that and look under "HYPERMOBILITY" or something like that) you will find a HUGE list of web pages on Hypermobility, EDS, HMS, and also I think Marfans and OI (mainly tarda or type 1). Look them up and see if any onf them describe you??? I have been diagnosed at the age of 31  with HEDS (Ehlers-Danlos Hypermobility Type, OLD type 3)
Good luck and welocme to the Odd Bods Group.
Sharon
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++















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