By Clarabel on Sunday, February 09, 2003 - 04:28 am:

I have just been diagnosed with HMS and still waiting on final appointment for EDS. I have tried to get my doctor to advise me but he is not any help at all. I am thinking seriously about bracing my knee cos every time I stand it bends 15 degrees backwards and when I walk down stairs it jumps out. He says that I have to decide for myself, but I am worried about the joint getting even waeker if I don't do anything with it.

Anyone got exeperiences, good and bad, of bracing or not doing it and getting worse/better?

Thanks

By Ian on Sunday, February 09, 2003 - 10:20 am:

Hello Clarabel

If the tendons and ligaments surrounding joints allow a wider range of motion than is usual a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems. But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS). Living with HMS can be a major problem in terms of pain and mobility problems. However, if the hyper mobile person has more than joint problems they may have Ehlers Danlos Syndrome (EDS). Various forms of EDS have hyper mobility as a characteristic but will also have skin stretch or other major problems that can even be life threatening.

To a person who has hyper mobile joints and great pain, or even unintentional dislocations, the name given to their problem (EDS or HMS) will be of little interest to them as they seek a cure to their joint problems.

While flexible joints are very useful to contortionists, some joints can become so loose that they are unstable. This allows the bones of the joint to slip out of their sockets, or alignment, and can be very damaging. Strengthening the muscles around the joint can stabilize it. However, if you are unable to increase your muscle tone then you must help out the muscles by providing some form of worn support. In hyper mobiles, because of the amount of work that is done by ankles and knees, there are many forms of bracing starting with support shoes that prevent the ankle going over on the side (not fashion; but they look after you!) and knee elastic support sleeves through to metal bracing. There are braces for every body joint.

Get some help for the over worked muscles and wear something that keeps control of the joint. The more often it “slips out” the worse it will get in time. AND do not do any exercise or sport like aerobics, gymnastics or jogging that places jarring loads on your joints – ever! Keep good muscle tone by resistance exercise and do not put on extra weight!

Regards, Ian (mercedes_nz@yahoo.com)

By Myke on Sunday, February 09, 2003 - 12:20 pm:

Hi - Pretty much the only thing that keeps my upright these days is knee & ankle braces.

If you can afford 'em - I *HIGHLY* recommend the CTi2 from InnovationSports (isports.com) - I presently have Active Ankle braces aswell - I'm less happy with theses - the straps suck and they're a 3 piece design which means the uprights can shift - I'm looking that the UltraAnkle from breg(.com) and I'm also looking at the X2K-PTO as a second pair of knee braces (insurance is almost up and I could stnad having a different design to give my skin a break)

By shazinoz on Sunday, February 09, 2003 - 09:30 pm:

I too use CTI2 Knee brace (and at present a DJOrtho IRom Cool R.O.M. knee brace) and AFO ankle brace/s (custom fit ridgid plastic anlke braces ( I have a few 2 rigid and 1 with ankle joint, 2 long and 1 short (3 all up))I also have a lace up ankle brace with plastic side stays, stap kind, puul on thermoskin kind and more.

By Clarabel on Monday, February 10, 2003 - 02:07 pm:

Thanks everyone. Do you know any that will withstand swimming pools if I wash them out after? I don't want to end up wearing soggy strapping tape!

Interesting you say to avoid gym... I was a gymnast and then I did trampolining then I was in the Army running with large weights - could hardly go more wrong!!

I am resting up now and will start pool work now that I know what the problem is and I can get my weight back down, stregthen the joints and then get back to land exercise - braced up and not running with 25lb packs this time!!

Should you carry on doing exercies without the braces to strengthen up the joint? What sort of thing and how often would you do it?

There is so little information out there!

By Ian on Monday, February 10, 2003 - 06:50 pm:

Clarabel

Yes, the background items were just what a hyper mobile should not do!

The sports supports of neoprene are elastic and provide some support and they wash easily so you could wear this in the pool.

The following will give you information about braces from one firm but there are many out there:
http://www.supportsusa.com/knee/knee/index.htm

Regards, Ian

By Clarabel on Tuesday, February 11, 2003 - 08:02 am:

Do you find that bracing helps with the pain too? I have pain 24/7 from nearly every joint and so far the only thing that relieves it is floating in a swimming pool and wearing the immobiliser braces that I got with some in-line skates!

Has anyone found anything at all that helps with the pain? I am up for pain management (again!) soon and I wonder what to try. Nothing up as far as DHC (DF118) has touched the pain.

Thanks everyone for your help and I am looking up some of those places you suggested. Some places will not ship outside the US (I live in UK) so I am a little limited but going well. All remains to decide what is worth paying to have it shipped all this way to try on and then maybe end up with restocking charges on returns... is there anywhere that doesn't charge this? I ahve never heard of something like this in the UK - we don't even pay postage to return most things!

By Ian on Tuesday, February 11, 2003 - 09:53 am:

Hi Clarabel

OK - I live in NZ but a quick search gave a couple of UK sites you might examine for knee support and items range from neoprene elastic support through to hinged items! Look at:

http://www.webiness.co.uk/deanesports/listings/154.html
http://www.proline-sports.co.uk/kne.html

Regards, Ian

By Clarabel on Tuesday, February 11, 2003 - 01:25 pm:

Thanks. None of the products here seem any match for my joints! I have tried soft supports before, but it seems that I roll out of them all, and I also find that "one size" means "fits nobody properly" so I am thinking I will have to go interenational. I have a few good places now to look for braces - I just have to make that decision of what needs it and what I can do without - I would be mechano-woman if I had my way!

By shazinoz on Monday, March 10, 2003 - 02:41 am:

as for braces for swimming, I sue me CTI2 and townsend rebel braces in the pool (as long as you rinse them thoroughaly after the chlorine). I find that my braces help to reduce my pain (sometimes when nothing else will including upping my MsConitin dose ) but at least braceing is no invasive and non toxic, so I prefer to stick with that if I can, also I find warm/hot water best too, I love hydro pools, spas, and pools too. I cannot use Ice or cold or tolerate it because of my RSD and raynauds and such, but LOVE hot water and stuff like that (hate summer though , I have trouble maintaining my body temp sometimes).
Clarabel I am in OZ, and get most if not all of my braces from a local orthotist, who fits me properly for any braces, to fit ME , I have shoulder, knee, wrist, ankle and a lot more braces, including slings, and a hip thermoskin support, you can also try the local public hospitals, and rehab centres for orthotist support and help.
Hope this helps
Sharon