By Lady Patrick on Sunday, June 04, 2000 - 05:14 pm:

I am what is know to me as "pidgeon toed". Mom tried all kinds of things to help correct it, that didn't work. I did break my lower leg bone at age 4, and was
warned that once the cast was removed, I had to use that leg alot or I would always have a limp from having been in a cast for so long. I still have difficulty walking
with an easy flow on that leg. Especially evident when in high heels.

I grew up in the country surrounded by forest, and 5 brothers. I couldn't climb a tree if my life depended on it, even though I was very much a tomb boy. Tree
climbing, or doing the monkey bars was like having my shoulders,elbows and wrist ripped off slowly. Gymnastics ( the brief introduction given in school gym classes)
was horrible also. I luckily had a nice brother who built me ladders so I could climb trees with them.

I was never good at any sports, except volleyball.
I was quite good at it. I recall when the teacher tried a test in class one day for volleyball. She got everyone in the class to put their hands in a cupped position.
Thumbs were to be put together at the ends, in your palms. Then we were told to flatten our forearms to form a sorta flat surface
keeping ends of thumbs and elbows together, and keeping hands together. I was the only kid who could do it. She said that alot of Volleyball Olympians posess this
ability and flexibility. And it makes for a good natural talent in that sport. Other kids were surprised I could do it, and then they were shocked to notice that as they
put it " my elbows were on wrong" They were twisted and the inside of the elbow is almost at the top of my side of my arm.

I was a champion at doing the limbo for many years in childhood and adulthood. I also recall my siblings and I trying different stunts when we would see
contortionists on t.v. One that I tried in my preteen to mid teen years, was touching the top of my head on the floor by bending over backwards. I did it by our couch
for a balance, and incase I slipped. The first time I made it pretty far and slipped bumping my head. Then I did it bare foot. I did it successfully on the 2nd try, and
several times after that.

One day when my brother, and I were talking I mentioned jokeingly that I must be getting old. I was in my mid to late teens. I said I was beginning to have difficulty
washing my own back.
My brother asked what the heck I was talking about no one can wash there own back, unless your double jointed or something. He asked for a demonstration. I
easily put my arms and hands behind me, to all areas of my back, with a bit of difficulty in the furthest areas. I said I used to be able to touch my back anywhere with
no problem easily. He was shocked by that. He said it is amazing what I could do, let alone whatever it was like when I was a bit younger. I said I thought everyone
could do it and did it.

My real problems with my joints started with injuries to joints. I did a cart wheel and dislocated my left knee at 14 and got fluid on it when it was popped back in by
a neighbor. It popped out more and more frequently after that. My right knee began popping out on it's own with no injury. My left shoulder was dislocated,by injury
and the ligaments and tendons tore. My right hip went out at age 23 or 24 with no injury. I was told eventually all my joints would start dislocating.

Anyhow if any of this sounds familiar or in fitting with "loose joints" please let me know.

By Bianca on Sunday, June 04, 2000 - 05:14 pm:

Yes,some of this things sound familiar. Like being able to wash my back.I allways thougt, that only old people need help to do that. Or, we have this mailboxes. I
could never understand, why they construct mailboxes with a slotand keys, meanwhile it is so easy to get out the letters with my fingers. When I was diagnosed with
HMS I began to realize that other people aren't able to get out their letters from the mailbox with their fingers and maybe I am unusual and not the mail boxes.

By Gwen on Sunday, June 04, 2000 - 05:15 pm:

It certainly does! I thought everyon could wash their own backs or deal with an itch. Both myself and my 83 year old Mum can do straight leg bends and touch the
floor with flat hands, I can lie on the floor and roll over until my feet are touching the floor at the back of my head. Party tricks when younger included smoking a
cigarette that I held between my toes (and getting it out the packet and lighting it with my toes also) and extending my toungue until I could 'wipe' my nose with it. It
used to crack us up when we had a few drinks on board. I have reformed with age .

By Sue C. on Sunday, June 04, 2000 - 05:15 pm:

For those of us who are around age 30, can you enlighten us as to what our futures may hold?

By Gwen on Sunday, June 04, 2000 - 05:16 pm:

Bianca, I'm not sure how I should approach this. Inever even knew about hypermobility until ten years ago. It is only in retrospect that I can see I have shown
manifestations of it throughout my life. As a child I frequently sprained my ankles, not just by twisting them but also when I ran. The foot that went off the ground as I
took a step would often feel as if it was about to fly off the end of my leg. That was extremely painful. I also had problems doing gym classes as my wrists would give
way on the vaulting horse and I never had sufficient spring to haul myself over or to climb ropes. I've never been any good at dancing, I suspect more because I
haven't got the spring in my step than because a lack of sense of rhythm. All my life I seem to have had vague joint pains. Never usually severe but enough to make
me feel miserable. Mum took me to see a doctor pre-teens and was given the diagnosis "growing pains" and suggested it could be related to onset of menstraution.
Had she told me the facts of life? Things carried on pretty much like this for years and I just grew to accept that, like other family members, I probably had
rheumatism.

On my mum's side of the family we tend to run to painful joints and my great-grandmother was in a wheelchair from quite a young age with what was said to be
arthritis. In light of what I've since found out about HMS I have my doubts. My Nana also had painful joints and I can recall her going around with her knees
wrapped in old strips of blanket to support them and relieve the pain. Again we all assumed it was arthritis but pictures of her, even into her seventies, show her to
be as erect as a guardsman and she had beautifully shaped and cared for hands. They were one of her little vanities. My Mum as I said before is 83. She is still in
pretty good physical shape, walks at least a couple of kilometres a day, goes to exercise classes and is quite independent. Lives in a two-storey unit. She has had
joint pain for years and I can remember one occasion when she would have been in her forties fainting with pain that suddenly came on in her ankle. She too doesn't
show any physical manfestations of arthritis and can bend over and touch the floor. Her range of movement is pretty good and only a couple of years ago she was
perched atop a ladder repapering her lounge. But she does have joint pains and has always had them since childhood. Of her two sisters, one doesn't appear to have
had any noticeable problems but was certainly a supple person. Local champion ballroom dancer and very musically able. The other auntie complains of sore joints
but isn't one to go into details about things.

I never had any real problems until I became pregnant in 1980. About five months down the track my ankles started giving way. I was told by my doctor that it was
due to my liagemnts slackening for the birth process and would settle down after I'd had the baby. Well, it didn't! That baby is now nineteen. I have had several joint
traumata over the years that I think were exacerbated by my hypermobility. An L4/5 disc rupture as the result of a horse giving a very little buck. A severe whiplash
when another horse stumbled and a torn rotator cuff (shoulder) when another horse decided to lean against me while I was grooming him are the most severe ones.
None of the incidents were sufficiently violent to cause the subsequent damage. My disc lesion was undiagnosed for two years because I could do straight leg raises,
touch the floor etc which one isn't supposed to do with a ruptured disc. By the time a final diagnosis was made (by a neurologist on the basis that I has half my leg
reflexes missing) I had sustained severe spinal cord damage due to scar tissue build up.

I was diagnsoed as having HMS in 1991. What a relief to actually get a diagnosis for a condition that explained all the sensations I had been experiencing. I was told
at the time that, in some women with hypermobility, the ligaments fail to return to their normal state after pregnancy and I was one of these. I was also told that the
symptoms should diminish after menopause. Still waiting for that one to happen too! I don't know if they'd go away if I stopped hormone replacement. Hard decision
to make. I've gradually withdrawn from a range of activities over the years. I rode competitively at a low level until last year when I had to have my horse put down
but haven't got round to replacing her and suspect my days of horse-riding have stopped. This year I decided I could no longer cope with mowing the lawn. No
great angst over that decision! Generally I find my joint pains aren't too severe during the day, if I keep mildly active but don't overdo things. I don't sleep well at
night and find it very difficult to get comfortable even with my array of pillows, hottie-bottles atc but try to avaoid analgesics as far as I can as I also have irritable
bowel, which often seems to run concurrently with HMS. Any more GI upsets I can well do without! I often have periods where I feel totally exhausted as if my legs
will collapse if I don't lie down. I never know when this is going to hit which is a worry. It has happened during supermarket shopping before now and I've just had
to sit until my legs feel as if I'm under control. Had some very funny looks from other shoppers who fing me sitting between the baking-powder and the dried fruit!
Because I feel so tired most of the time I have virtually stopped socialising. I do keep in touch with friends by phone or email but find the effort of physically doing
things just too much. Intellectually I'm very busy, post-graduate education, working for the EDFNZ, playing bridge, a whole host of activities.

I find I get depressed very easily but have learnt to recognise the signs and have basically been well the last couple of years emotionally. It took me a long time to
accept that there are things I am unable to do, or unable to do with the same efficiency that I used. Prioritising my life has helped. Dust and fluff on carpets are no
longer an issue. One thing I've learnt about houisework, it's not going to go away. Also it's not really that important beyond a basic hygeine level. Delegation is a
wonderful thing, as is the realisation that I'm not responsible for other people's messes, mispalced clothes etc. Quite a liberating sensation.

But I do feel resentful on occasions at having to give up things, not do housework to my standards, missed career opportunities because I can only manage part-time
work and, not least of all trying to manage on a decreased income while trying to pay off a mortgage and save for my dotage. Perhaps it would all be easier if I had
some religious belief about predestination or suffering in this world leading to happiness in the next but no such comfort for an agnostic!

I don't know if this is quite what you wanted Sue C. but it's from the heart and I hope will be of use to you. One thing I have noticed among members of our
EDS/HMS support group is that we are all survivors and have very black senses of humour. All the best to you. Email me if there's anything else I can tell you.

By Bryan R. Covey on Sunday, June 04, 2000 - 05:16 pm:

Hello,
I have just started this journey so to say as a young 31 year old male. Looking back at my situation it is all to familiar to everything that I have read about everyone
else. I was in the Navy on active duty, on lunch I was playing Wally-Ball ( a cross between Volleyball and raquetball ) and when I was jumping my peraneal tendon
dislocated. The doctors used me as a gueniea pig because that type of trauma was always associated with a motorcycle accident or something similiar. After having
the ankle in a cast for 8 weeks so the tendon could re-attach itself I started to walk slowly and my ankle continued to roll and swell. They had to go in and surgically
correct it. Well, after another 10 weeks of casts and walking boots I could finally walk ok only to have my right tendon dislocate while I was walking the dog. I have
always been active and into sports and always near best at what I did. For two more years on active duty I continued to have problems, and was told by many
doctors that I had week joints and needed to do more strengthening excersizes. It didn't matter that I was it the best shape of my life I wasn't strong enough and I
needed to become stronger for this to stop happening. I was soon thereafter dischared with a meesely 10% disability for the surgery that was performed on my left
ankle.
When I got out I started to see the doc's at the VA in Portland/Vancouver and I was sent to see a specialist. What a Goddsend to me and to all of the problems that
I have encountered. He first diagnosed me with Celiac disease and that was the most wonderful thing. I no longer had to go to the bathroom 15-20 times a day. He
sent me for all types of tests and to see other specialists and recently after seeing a rhuematologist and having a nuclear bone scan done and eliminating
Rhuematology he looked at Bening Hypermobility Syndrome, vwalla. I have most recently found out about this but in all of what I have read I am very happy to
know that there are others to associate with similiarities.
Please send me any and all info on this and other related symptoms. I have many joint problems and I am supposed to have shoulder surgery in the next few months
and I would like to know if that is something that I should continue with or not. I have sensitivity on the bottoms of my feet and my knees are as week as they are
strong if that makes any sense. I would appreciate any help that you could give to me. Thank you in advance over and over again.

By Karen on Sunday, June 04, 2000 - 05:17 pm:

Hi Gwen,

I just read your post, and want to thank you for being so forthright, and for sharing these details of your experiences and those of your family members. I have
always been hypermobile, and used to demonstrate my very flexible thumb (it can bend 90 degrees) to playmates as a child. Little did I realize then that in later years
this oddity would manifest itself in very painful ways. I now have pain in the SI joint, which I suspect was triggered by a fall about 6 years ago on an icy sidewalk.
After that seems to be when the pain really started to escalate. I also have IBS, so I know what you're going through there too.

Since that fall, I havent had the same energy levels, and I also have felt that I've missed out on career opportunities. I can also relate to the comment on dark humor!
I certainly have a good deal of it!
Anyway, thanks for hearing me out. It does help to share these burdens. Take care-
Karen

By Karen A. on Sunday, June 04, 2000 - 05:19 pm:

Wow
Most of my life I have had a painful back, starting when I was about 8 and "froze", I was petrified, as was my mum, who says she saw it happen a few more times, I
simply couldn't move at all. The hospital wouldn't take it very seriously as I did not seem to be in pain at the exact moment they examined me.
The most traumatic thing really, for me, has been the ankles. I used to do a lot of sport at school, and one day doing circuit training, bench jumps, I landed and my
ankle simply folded up. I knew they were extremely flexible, but this problem got worse until I ended up with both my ankles giving way even if I was just standing
still on a level floor. in the end I was in plaster every year for at least 8 weeks. I have never broken a bone, just damaged things in other ways.
Eventually the consultant at the hospital decided that surgery was the answer, and it was left ankle one year and right the next. Great fun when you are a divorced
mum of a 3 year old!
I have to say it is a revelation to be able to go walking again without worry, ten years on I feel it was the right decision for my life.
However the back is a different story, with severe back and hip pain stopping me in my tracks regularly and without warning. The hips are at their worst in bed,
having to turn over and over to try and ease the pain.
I only truly realised what all this added up to listening to the radio the other day. Nobody has ever sat me down and explained it properly.
I do not know what to expect in the future.
I am posting this as my son has knees that he "must" crack or they hurt, what can I do for him now to prevent him going the same way as me?
Would it help if I changed my diet?
Does being overweight make the problem a lot worse?
I would really appreciate some feedback from anyone who can offer advice.
Thank you.

By Sara on Sunday, June 04, 2000 - 05:19 pm:

Sounds very familiar - I've dislocated most pf my joints and I'm only 27!! I have a total left knee replacement due to loads of surgery to correct dislocations. I have a
total right wrist fusion and am currently awaiting to have the distal radial ulna joint fused. I am also due surgery on right knee as medial ligament ruptured due to
dislocations. You are not alone!!! I was only 'officially' diagnosed about 2 years ago, and luckily have a good team of doctors. Best luck with the future and I hope
everything turns out as you want it to. BIG hug.

By Linda on Sunday, June 04, 2000 - 05:20 pm:

Hi Sara! Wow your problems make mine seem very very small. However they are rather large. I guess I have just opted not to have any surgeries.I was just
wondering who your team of doctors are.I really wish I could find some doctors in the Los angeles area who are more knowledgable about this disorder. This
doctor I saw today told me to start lifting light weights. I can barely lift a bottle of snapple. I refuse to do anymore grinding away of the cartilage in my knees or
anywhere else for that matter. If anyone knows of any doctors please let me know.I'm really getting desperate. Thanks for all your help.

By Sara on Sunday, June 04, 2000 - 05:20 pm:

Hey Linda, I live in the UK, but have a great team of doctors (eventually!) Feel free to e-mail me and I'll supply details if you want. Keep smilin'! :-)))
Very best wishes, Sara x

By Jaine Riley on Wednesday, June 28, 2000 - 07:47 am:

Sara

Could you let me know what area of the UK you live in. I am in Merseyside and have had no joy and only last week had the Kids referred to be tested for EDS (they are 5 & 9) even though I have been diagnosed since 1995 and the diagnosis is missing on my medical records!.

Life goes on and all that, I have mild symptoms most of the time worse just before my period and dire during the pregnancy, swimming is the best prevention for me (when possible) and painkillers and a gritted teeth smile as treatment, keep trying EDS you won't keep me down.

stay strong all of you!

Jaine

By Selina on Thursday, July 06, 2000 - 09:27 pm:

HI!

I was diagnosed with HMS last year at age 28 after having severe hand pain for two years- pain which began following the birth of my son. Rheumatoid arthritis was considered, but blood tests (except ANA) were negative. I was told that I might have problems as I got older, but wasn't really given much info. I, too, felt like I was dismissed- "just hypermobile joints, nothing really serious".

Looking back, I can pinpoint joint dislocations that happened while I was growing up and in my early twenties. My back was injured in 6th grade, my ankle sprained in 7th, my jaw began to pop in jr. high school. In college I would impress my friends with my "talent"- forcing my closed fist into my mouth. I really dislocated my jaw at 23 in a biking accident. While pregnant at 26, I injured my back and began to have great flexibility of my feet and hands- and my jaw spontaneously partially dislocated and I was forced to chew in tiny bites until it resolved itself after a couple of months. (Massage therapy got me thru the last 2 months- a wonder!!!)

At 28 I was working as a med tech performing highly repetitive motions; I would wake up in the mornings with my hands frozen into claws in intense pain. I never noticed that it got worse with PMS. Ibuprofen worked better than the prescription painkillers I was given.

I have since switched to a more diverse job and have almost completely eliminated my hand pain. In fact, for a year I have had very little problem. I get my husband to open jars and bottles for me. I have been taking St. John's Wort for 4 months for mild depression (self-diagnosed) that worsens with PMS and ovulation. My mood is much more stable now.

I swim 2 times a week (love it!!!), and just last week had to change my routine from breaststroke to alternating breast/free because my right knee began to feel "loose" and sore. This week, my hand, foot, wrist, and knee pains are back. I am PMSing very bad, and I wonder if hormones are influencing this "outbreak". Or if the St. John's Wort is affecting my joints- hmm. My family is moving across the US in 3 weeks, so my stress level is high also (even GOOD stress is bad sometimes, I guess.)

So, the point of my story is that I fluctuate. I am trying to swim with the current and help myself as best I can. After ignoring this problem during a pain-free time, I am realizing that I need to learn more, so I am glad to find this forum.

Selina

PS...Peroneal muscle atrophy, or Charcot-Marie-Tooth disease, runs in my mom's family. I was told as a child that I had not inherited this disease, based on nerve conduction velocity tests. Anyone know if these two diseases are related?

By Eppie on Friday, July 07, 2000 - 04:04 pm:

Selina:

Your story sounds exactly like mine. I don't have a lot of time right now to write, but suffice it to say that my problems began following the birth of my son last July and my joints feel much worse following ovulation up until menstruation. I've researched the heck out of it and it all relates to ovarian hormones. Either search the board for previous posts by me or send me an email. I'd love to chat with someone in the same boat.

Eppie

p.s. I've had 4 rounds of prolotherapy with good results. More later.

By Gwen on Friday, July 07, 2000 - 06:13 pm:

Selina, my hypermobility problems started when I was pregnant first time round. In hindsight I probably had some symptoms of hypermobility previously, ankles that sprained easily, various party tricks. I wrote a long, long posting some time ago on this particular subject listing. If you scroll back you'll be able to find it.
After years of wondering why little effort caused big injuries and why my joints ached and clicked I was eventually diagnosed as having HMS by the doctor who first described the syndrome. Nonetheless subsequent doctors don't consider that I have HMS or that I am particularly hypermobile, except in my spine. I agree that my other joints don't move as spectacularly as my spine but they still sublux and ache.
I was told that it should improve once I was through menopause as joints tended to stiffen naturally with age but I've seen no sign whatsoever of that happening. More joints seem to be involved as I age. The only stiffness seems to be if my muscles are in spasm. Once that wears off I can click and crackle with the best of them. The pain seems to be an intermittent thing. I had a very bad run from October 99 to April this year(our summer) then it settled down again. Whether this was related to having a mild, damp summer followed by a mild, damp winter is hard to say.
One Q&A I read (and I'm sorry I forget the source) was about climatic variation and joint pain. The person writing was in Boston and found the eastern winters very hard to cope with. She wondered if moving to a warmer climate might help. The response was that although it may help initially, if you are sensitive to climate changes eventually your body will become as sensitive to minor variation as it did to the major ones.
Cheers,
Gwen

By Patty on Sunday, August 13, 2000 - 11:14 am:

Wow! It sure is good to read about others experiencing the same things I do so that I know I am not alone! Not that I WANT others to have pain and all.

I, to, find my hands hurt the worst at night. However, I learned a long time ago that if I sleep with them extended flat against something the pain is less. I usually sleep on my back with them flat on my belly or on my side with one under the pillow and the other on the mattress. I may also cup on over the end of the "dogbone" pillow I use to prop the upper arm up with so the shoulder doesn't dislocate by the dead weight of the arm hanging on it.

I agree that my joint pain began with pregnancy. Is this our warning that we shouldn't have kids to pass EDS on to? Too late for that! When I lay on the floor to do the exercises, my left hip would dislocate and my sweet hubby would have to help me move into any other position so I could get up. It also dislocated with the motions of vacuuming or mopping the floor. The pain has never gone away and it is the left hip that is driving my nuts now.

The more I learn about this monster, the more excited I get to have answers to the "psycho" things I've had for so long. Thanks all for sharing and supporting. We all need eachother!

By Margaret on Friday, August 18, 2000 - 08:39 pm:

I see so much of myself in these posts! My daughter was diagnosed as having Hypermobilty 4 years ago, but never found much out about it until we went to the oral surgeon and he mentioned ehlers danlos. I have elbows and hips that go out of joint regularly, but am so used to it I pop them back in and go on. I had trouble doing sports as a child, since my knee swelled up, and developed a Bakers cyst. Had recurring Ganglene cysts in both wrists, but i have learned not to push up with the palms of my hands and that has slowed them. I never liked high heels because I always fall off my shoes. Tried working out at a gym, but ended up with calcified tendonitis in my shoulder, and when I explained to the trainers that my hip (or shoulder or elbow) keeps going out of joint when I do this.... Well they must have thought I was insane. I now also have developed tendonitis in my ankle. Seems my right side is the worst. Have arthritis in my neck which has limited my movements there. Also irritable bowel, which is agravated by stress. Sinuses, allergies are a constant. I regularly bruise with no idea how. And velvety skin comes from my Mom.
Now realize that I am not normal, but that there are others who understand. My mom had ganglene cysts, and my niece is getting them regularly, which are especially painful during her period. My daughter has most trouble with her ankles which give out when she's walking and bruise terribly from the strain of everyday living.
What I would like to know is how to find a good doctor in South Florida that understands this!
Thanks for giving me insight on this monster!

By Kim on Saturday, October 07, 2000 - 02:45 pm:

Hello! I've just found this web site for the first time and so much stuff makes sense now! I've just been diagnosed with HMS and having had constant and debilitating lumber pain for nearly two years. Although I'm married and in my thirties this is a time when I would really have liked my mum/dad around me. I suppose I'm relieved that I haven't got MS,( mum died of that) but I'm really quite scared of what is going to happen and how I'm going to deal with it. The doctor says that I will just have to live with the pain and the reduced ability to walk
It seems like most of you are in the States, is there anyone in the UK who uses this site who has a good doctor that understands about this? I would be very grateful for any advice you can give me as I'm feeling a bit lost at the moment.
many thanks.

By Gwen on Saturday, October 07, 2000 - 06:40 pm:

Kim, have a look at http://www.hypermobility.org which is the site for the Hypermobility Syndrome Association, which is a British group. Professor Rodney Grahame seems to be the man in the know. You can get information about him from this site.
Cheers,
Gwen

By Jenifer on Tuesday, February 13, 2001 - 08:19 am:

Hi all! This really describes me perfectly.I am 28, and have been diagnosed with FMS/CFS, but I have yet to find any doctor who can help me with my joint problems.I am very Pigeon Toed, and have to remember to try to walk with my toesturned out all the time. my hip pops out all the time, mostly while walking, and my knee and jaw also have popped out. I have horrible hip pain, and I know it is much worse than just having FMS. I can only sit in the "W" position, and infact find it to be the most comfortable way to be most of the time.
I need to find a doctor who can help me, but I don't even know where to look.
Thank you,
jenifer