By sharon on Monday, November 13, 2000 - 11:15 pm:

Hi,
I am a 29 year old female who lives in Australia and am hypermobile. I was never told that this could be a problem but I have had chronic pain since age 12 when I was diagnosed with a Sacro-Iliac problem (tore the muscles off the bone) and Juvenile Rheumatoid Arthritis my right leg is now shorter than my left and my right side of my pelvis is lower. I have had my left knee ACL reconstructed twice, I scar easily but not chunky or anything just silvery, My knee's click and feel weird a lot of the time, I get sore in the chest and it hurts to breath, my jaw locks and slips, I have subluxed my right shoulder too many times to count, I am klutzy and always bumping into things and tripping over etc, I always seem to have at least one injury and a few bruises (but I don't know how I get them) and know the doc's here think that I have torn the ligaments in my right wrist by twisting it. My main problem is that they never tell me what causes this and since looking on this and other sites I am guessing that I either have Hypermobility Syndrome or EDS type III but I recently talked to my mum's rheumatoligist and he reckons that I can't have EDS because I don't have really stretchy skin ?? Can anyone help me this is driving me nuts. My other problem is that I have had a diagnosis of Reflex Sympathetic Dystrophy in my right shoulder and left leg for the last 5+ years and with RSD they say absolutely NO bracing but with the hypermobility syndromes they say bracing (I sometimes already look like ROBOCOP) what with the knee braces, shoulder sling, ankle brace, wrist splint etc etc I always thought that everyone was flexible I mean my sister and I used to sit in Lotus position and then chase each other around the house in lotus position and thought that everyone could.I am also HLA B27+ which I have been told is a type of antigen on cells that seems to make you more susceptible to arthritis and achy and I have a heart murmur (an aortic flow murmur). And that is just to name a few of the problems that I have had.

Could someone please tell me how I could go about getting a diagnosis. And all of my problems just seem to be dismissed as either in my head (but hey I am in my body) or related to my RSD even though they feel different or they are taken independent of each other and I seem to feel like the doctors think that I am a hypochondriac.

Thanks Sharon

By Geri on Tuesday, November 14, 2000 - 11:22 am:

Hi there.
Sorry to hear about all your problems - I can't believe that a doctor hasn't diagnosed you with all those symptoms! Maybe you could try and get your GP to refer you to a specialist or go private, as the doctors aren't sympathetic.
I haven't been diagnosed with anything either, although I have some very loose joints.
I was mostly writing to agree with you about the Lotus thing - I also had no idea that people have to work hard to do that position. When I was little I used to twist my legs to the front and walk around on the knees (the thought makes my cringe now after a dislocated knee!)
Hope someone can help you out
Geri

By Barbara on Sunday, January 14, 2001 - 05:35 pm:

I was diagnosed at age 21 after spending several years as a ballerina. I started having subluxing in the hip joint. I asked my doctor about the sublux and she wasn't sure what it was. She said it could be EDS or Marfan syndrome, but thought it was more likely EDS. She wrote "Ehlers Danlos Syndrome" on a post it note and told me to go to the library and she would check the medical reference library at the hospital. We agreed to meet again a week later. I contacted the Ehlers Danlos National Foundation and received a large packet of information. She found very little information in the medical reference library. I marked in the materials I received all the symptoms I had. She looked it over and agreed that I have EDS Type III, now called Hypermobile Type EDS. We then had the diagnosis confirmed by the genetics clinic.

I was very fortunate that my doctor was knowledgeable about EDS. She was educated at the University of Washignton where Dr. Peter Byers connective tissue lab is.

By Rachel L. on Sunday, March 04, 2001 - 07:14 pm:

about osteoporosis and HMS...
Various people have mentioned that people with hypermobility are prone to osteoporosis...

Is this true? I am, according to my physical therapist, extremely hypermobile, though not in the same joints tested on the Beighton scale.

I am in my early 50's and recently found out I have osteoporosisof the hip and osteopenia of the spine. I do NOT want to take hormones for various reasons but due to HMS am not able to lift weights to build bone density.

Any suggestions? My phys. therapist suggested building stabilitly of the joints by doing water exercise. That has really helped - shoulders don't pop out when I turn the steering wheel now! - but I am still not ready to try weights...too luch looseness and too much general aching. Maybe never, says the ph. therapist.

Is anyone else dealing with this? I would appreciate any input...

I am like several others who have posted, a musician. Am able to play but have to be extremely careful to avoid injury and pain...consequently, I am picking and choosing my playing engagements very carefully in order to best use my good (painfree) playing time.

I also have IBS and soem other symptoms you have mentioned. Not the nicest thing overall, but there are worse problems...

hoping to hear from you...Rachel L.

By Gwen on Monday, March 05, 2001 - 11:07 am:

Rachel, I'm also early 50s and have HMS. I don't measure up on the Beighton Scale but meet the Brighton Criteria. I was diagnosed 10 years ago as having "a hypermobility disorder" and was told that it was the result of the hormone Relaxin which is produced in pregnancy and loosens ligaments to aid the birth process. The effect is systemic, not just concentrated around the pelvis. I was told that some women's ligaments never gain their former elasticity and I was one of them. The good news I was told is that it isn't progressive and would clear up once I was through menopause. I feel the rheumatologist was wrong on both counts. More and more joints have become involved and at 54 I'm well through menopause but no signs of joints stiffening. I can still W Sit, clasp hands diagonally behind my back, put hands flat on floor when I bend over with straight legs etc. etc. And I still hurt!!!!!!!!!!!!! Despite all this I still have doctors tell me I can't have a hypermobility disorder although all have admitted that I am "at the upper level of normal mobility". Compared to what? I'm more supple than the majority of my workmates who are mostly in their 30s. Certainly I don't consider myself to be grossly hypermobile, more a case of joint laxity than a large range of movement but the damn things sublux, click in and out and hurt. I also get movement in joints I am told don't move such as sterno-scapular and sterno-costals and my sacro-iliacs need to be popped back into place if I've been standing for any time.
No-one has suggested I have a bone density scan but I try and keep active even though I don't exercise as such. I also try and have a reasonable intake of dairy products which is something of a problem with IBS but generally I cope with a helping of milk on my cereal and maybe a small portion of cheese during the day.

If you are unable to lift weights have you thought about doing resistance training, pushing against something or working with balls. I have ridden horses for years, not as much recently admittedly, and I think that has probably helped me a lot. My mother, who also has HMS did ballroom dancing and, at 84, still walks everywhere. She has no signs of osteoporosis and is generally in good health apart from the joint related ills.

By Rachel L. on Monday, March 05, 2001 - 11:57 pm:

Gwen, thanks for responding. It is good to hear from someone with such similar troubles.

Hypermobility is an odd thing because there are people who are very very loose who don't seem to ache or have things popping out of place. Almost 20 years ago after I was in a bad car accident, the physical therapist I worked with told me to stop doing the very very intensive yoga that i loved so much. She warned me in no uncertain terms that i was headed for trouble if I continued to push the flexibility *without balancing it with strength...*
that seems to be the key.

Well, in some ways I did listen to her but in others, I definitely did not, and I am paying for it now. I too seem to get looser as time goes by...back in those days i was able to work out with weights but now it is really impossible.

My friends all stretch before exercise in order to limber up...I literally have to tighten up certain areas of the body daily in order to avoid those painful sensations of things slipping around, going into the wrong groove, so to speak, etc.

As for resistance training, I am doing some water exercise and will hopefully progress to using paddles and weights in the water to increase resistance. Some of the floor ex. I have do help with hone density - using the body's own weight instead of free weights - and i think that will be a good direction to go in.

Thanks again - best to all. Rachel L.

By Patty on Sunday, March 11, 2001 - 05:21 am:

Hi, I too am 50 and don't measure up on the Beighton Scale, but have so many other EDS things that they have given me the EDS diagnosis along with two of my kids. I have long been using natural progesterone cream for my bone density. If you want to read a book about it, looks for Dr John Lee's book called "What your doctor may not tell you about menopause". It is very good and will tell you why it works and how to use it. There are other books out there about it too.