By Dianne on Thursday, September 21, 2000 - 01:38 pm:

My GP has told me today that I have this condition, told me to exercise and gave me Voltarol tablets to take only when it is bad. I went on to the internet not believing I would find anything. I am in shock - I didn't know anything about this. I have always told myself that I was just an 'achy' type of person and so put up with the aches and pains. My GP acted as if it is nothing at all, it will go away. I am 51 and have had this for as long as I can remember. I was tested for arthritis 6 years ago but it came back clear so nothing was done. I'm sure my GP thinks I am a hypochondriac. Help!

By Gwen on Thursday, September 21, 2000 - 09:53 pm:

Being labelled "hypochondriac" is part of the hypermobility syndrome. You're not alone in feeling this way Dianne. Most of us have travelled a hard a long hard road before we have found a doctor who has heard of the condition and, what's more, is prepared to believe that we have it. Many are still travelling. Look up the different websites that deal with hypermobility or Ehlers-Danlos Syndrome. There is a lot of information available if only doctors would take the time to check it out.
There are support groups in the US, UK, Netherlands, Australia and New Zealand that I am aware of. Probably others elsewhere.

By claire on Friday, September 22, 2000 - 03:02 am:

your not a hypochondriac.If you believe it you'll start stressing that happened to me!
I'm lucky I have a great docter who understands
how I feel.
I have just finished having physio today in alder hey they were great with me.
I used to think I was the only person with this condition.Until I saw a boy of about four with it.

By Barbara on Sunday, January 14, 2001 - 05:11 pm:

The medical community lacks awareness of Ehlers Danlos Syndrome/Hypermobility so patients are often misdiagnosed or labeled a hypochondriac. This is why it is so vitally important to educate the medical community about this syndrome.

By Larry , NC, USA on Thursday, January 25, 2001 - 05:58 pm:

In the US, the best help group is the Ehlers-Danlos National Foundation, with plenty of information in their news letters.

Email at: ednfboard@aol.com
Phone (323) 651-3038

I'm diagnosed with type-2 and type-3, got EDS from both parents and amd taking 2-200mg Celebrex/day, 1-20mg Celexa before bed, up to 3-10mg Flexeril muscle relaxants/day, and condroitin sulfate and glucosamine sulfate (Arthro-7 is the brand I buy). Though only partially effective at controlling joint pain and depression, it is a whole lot better than previous meds. When the neck and facial pain really get bad and I'm sure I'm about to meet my maker, I'm allowed to take up to 3-10mg Toradol tabs a day, but no more than 15 tabs per month.

Hope this helps, you're not alone, you just think you are. Best wishes, Larry.

By Maggie on Friday, July 06, 2001 - 12:28 am:

I am 21 years old, and was diagnosed with EDS hypermobility Type in November of 1999. The most important thing I ever did for my health was to find a compassionate and understanding doctor who is willing to work with me for solutions that are practical for me. One of the best medications I've tried for time-released pain control- although the media frenzy covering it in recent months have made many Dr.s afraid to prescribe it - is Oxycontin. Unless abused, the drug is less adictive and less mind-numbing for most patients than typical narcotics.
I have also found through trial and error that the best way for me to exercise, especially while rehabbing from an injury, is swimming. Many local pools offer water aerobics programs year round.
I wish you the best of luck!

By Arezu on Thursday, August 30, 2001 - 12:34 pm:

hello, I was recently diagnosed with hypermobility with patellefemoral syndrome(last week). I am really confused on what it is and what can help me with the pain, and what other things it can lead to. If any of you know where there is a good website with medical information, or maybe even a book, please let me know. Thank you.

Arezu

By Mickey on Thursday, August 30, 2001 - 07:49 pm:

Hi Arezu,

Personally, I would say that you have probably already found the best website!! There are lots of us here with the same types of problems, and nobody understands quite like another person with the same problem. Use the Search facility to discover how other people have eased or overcome a particular difficulty, and if that fails, ask a specific question and your bound to get some replies. As for hard information there is the HMS Support Group which runs this site which you can join, although based in England they do have members world wide!! They can send you information and Im not entirely sure if they still do, but they used to produce a doctors pack for your family physician, give them a go. You can contact them via this site. I wish you all the best with everything, and hard as it may seem now, keep your chin up and don't despair, (at least not yet!). I hope that this rambling may at least help a little!! (LOL)
Mickey

By Karin on Monday, September 17, 2001 - 12:47 pm:

Hello,
I was recently diagnosed with hypermobility. Can anybody expain me de difference with EDS, Marfan, artritis. What can really help me with the pain, a brace for the knee and Vioxx are not enough, the pain is still always there. Please help !

By Sharon on Monday, September 17, 2001 - 10:46 pm:

Hypermobility is the joint flexibility (what is classed as beyond "normal").
EDS and Marfans are both Genetic Disorders of Collegan/Connective Tissue that run "true" in Families and cause mumerous problems involving, joints, skin, heart, eyes, bowels etc etc etc. Athritus is a inflamatory disease of the joints.

Hope this helps.

By Sheena on Tuesday, September 18, 2001 - 09:21 am:

Hypermobility Syndome (HMS) is the same thing as EDS Hypermobility Type, formerly EDS Type 3. HMS is a genetic disorder of collagen, so any collagen in your body can be affected - usually joints, but also easily broken bones, stretch marks on skin, irritable bowel syndrome, diverticular disease, etc ... It is just another name for EDS Hypermobility Type.

By Lin on Tuesday, September 18, 2001 - 01:03 pm:

if you ask a doctor, at this point EDS and HMS are different, HMS is soley joints while EDS is all connective tissues. so dont tell a different doctor you were diagnosed with EDS if you only were with HMS, WE know they are basically the same, but doctors have to be difficult. hopefully soon dr graham will have the research out that says they are the same thing. my EDS diagnosis wasnt until a year after my HMS diagnosis.
Lin

By Joan on Wednesday, September 19, 2001 - 02:48 pm:

irritable bowels syndrome is connected with HMS/EDS/FHS (whatever ya wanna call it)? I can't believe it!

By Gwen on Wednesday, September 19, 2001 - 03:29 pm:

There certainly seems to be a connection. Many people with EDS/HMS have irritable bowel syndrome too but IBS is a fairly common condition anyway so may just be co-incidental.
I have wondered whether, by expending so much extra energy just holding our joints in place by muscle tension we are generating extra adrenalin which is affecting our gastro-intestinal tracts by overstimulation.

By Sheena on Sunday, September 23, 2001 - 03:55 am:

I have it in writing from Prof Grahame that I suffer from "Benign Joint Hypermobility Syndrome (BJHS), equivalent to the Hypermobility type of the Ehlers-Danlos syndrome (formerly EDS III)." At the weekend run by the Hypermobility Syndrome Association last July, Prof Grahame said we should use whichever term we thought would be best for the circumstances, as HMS and EDS III are the same thing.

By Joan on Sunday, September 23, 2001 - 07:32 am:

The geneticist I saw doesn't agree they are the same, he did however send me an EDS-information booklet in the letter that said my diagnosis was HMS/BJHS/FHS. Go figure!

By Karin from Belgium on Sunday, September 23, 2001 - 10:27 am:

Hello,

Thanks a lot ! It ' s still very difficult to understand, where can I find more information, is there a good website with medical information ? Somebody in Belgium with hypermobility ? My doctor said I only suffer from hypermobility, no Marfan or EDS; she gave me an article which you can find on www.annrheumdis.com.
I wonder what future brings !

By Kathy on Sunday, September 23, 2001 - 11:03 am:

If you read the Brighton diagnostic criteria you will see that HMS isn't only joints but includes skin, internal structures etc - the whole reason for introducing the new diagnostic criteria was to recognise this fact!

My family have HMS/HEDS and have vascular problems (aortic anuerism) which we have been told are a result of the fragile tissues associated with HMS (and yes - Vascular EDS and Marfan have both been excluded...)

By mariette on Friday, November 09, 2001 - 01:22 am:

Dianne how are you? are you still on the board?

By Simon Wilcock on Saturday, December 22, 2001 - 02:35 am:

Hi

My name is Simon. I have recently been told that I suffer from Hyper Mobility. I have seen a couple of specialists at the hospital who basically said that my joints moved too far. They said that there was nothing that they could do and that I should get used to it. Some help they where!

I ache constantly, mainly in my knees and struggle to find a form of exercise that does not hurt. Swimming seems to be the best. Most of my joints crack.

Anyway, on the recommendation of a friend I have recently started using a drink called AVESTA. It contains Glucosamine and Collagen. Over time I have been told that it could help.

Has anyone got any good ideas for me?

Cheers

Simon

By traceyt on Thursday, December 27, 2001 - 03:40 pm:

Have you ever exercised on an eliptical trainer? It is the motion of running without the impact. My knees hurt if I use the stairmaster. I am just figuring out my chronic neck problems are related to my loose joint diagnoses when I was a child. I keep reading about prolotherapy and it seems to work for a lot of people. But I live in Alabama and that is probably foreign to dr's around here.

By Simone Donnelly on Saturday, January 19, 2002 - 07:20 am:

hi
according to my doctor i ONLY hav HMS, she was very hesitant about telling me things at first and when i mentioned about hms and eds being the same she nearly bit my head off,she is now a bit better coz she knows that i have looked into it. she said that i dont have eds coz i dont have stretchy skin. i dont understand? is it that she doesn't want me to worry too much?
i don't get to llok on here often so i would appreciate e-mails simone_ashley@hotmail.com

By Kathy on Saturday, January 19, 2002 - 09:25 am:

Is she confusing HEDS with Classic EDS (the old types I & II). Under the new criteria soft, velvety but not necessarily stretchy skin are indicative of HEDS/HMS - even the old criteria said that skin symptoms in EDS III (now HEDS) were very variable.

By Margareth on Saturday, January 19, 2002 - 02:55 pm:

Maybe, but my geneticist still sees HMS and Hypermobile EDS as two different things. My skin was not abnormal enough for H EDS (although it was not completely normal either) so eventually I got the 'verdict' HMS/BJHS. The way I see it the boundaries between EDS and BJHS are constantly shifting.
But I ask myself, does it really matter what you call it? If the joint problems are the same in people with HMS and people with HEDS, so much the same actually that it is very hard to tell the two of them apart, does the difference even matter then? If you have a dislocating hip joint, who cares whether your skin is vervelty or not.

By Sharon on Saturday, January 19, 2002 - 08:27 pm:

I like margareth have been told I don't meet the criterea for EDS as I do not have stretchy or doughy skin, but was then told that my skin wasn't really normal either !. I have slightly widened scars, bruise easily, have ligamet and dislocation/subluxation problems in all but elbows and fingers (So Far)have pain from head to toes, wear so many braces at times I look like a crash test dummy. Have had 2 left knee reconstructiona nd a shoulder reconstruction.. As far as i am concerned it is EDS and I was told that the does and don'ts of EDS do apply to me. I am seeing a specialist geneticist in April who specialises in Hypermobility/collegan/connective tissue disorders, I was refered to him by the last geneticist who I saw who said I have a genetic/heriditary collegan/connective tisse/ hypermobility disorder. Nye the way I am in Australia and not much seem to be known about it here.It took 30 years for me to get a diagnosis and 18 years before I even heard the word hypermobile from a physio, but was then told no I don't have that, I recently saw a rheumatologist who said I was not Hypermobile but my thumbs were in the upper ranges of norma. Well he should see the rest of me, according to the geneticist I get a 5/9 on Breightons scale so yep no hypermobility in me ! What A Joke !!

By Margareth on Sunday, January 20, 2002 - 03:56 am:

Sharon, I am totally with you here. It only took me 19 years to get a diagnosis. When I finally knew what was wrong with me my physio, my family doctor, my rehab. doc and my cesar-therapist were all too eager to tell me I didn't have any hypermobility syndrome, not HMS nor EDS, the rehab. doc. and the family doctor even denied that something like EDS exists. (No need to mention that they are nolonger my doctors) They claimed: ' There are people who are more hypermobile than others, like some people are taller than others, but this can never be the cause of pain or recurrent injuries to the joints.' Did my body prove them wrong! I finally saw a rheumatologist who did know something about HMS/BJHS/FHS/HEDS. He sent me to a geneticist who within a few seconds on my first visit was able to tell me that there is no doubt that I suffer from a genetic connective tissue disorder. Either Hypermobile EDS or HMS. Later that became HMS, based on my 'sort of normal' skin. Keep fighting!

By Lin on Saturday, May 04, 2002 - 12:17 pm:

Hey all, its been a while since i have posted on this board... The orthopedic surgeon that diagnosed my with HMS told me straight out i didnt have EDS because my skin wasnt stretchy. When i saw a geneticist, he looked at my scarring and my stretch marks and brusing, and said i definately have EDS because of my combination of severe joint mobility and my weak skin. I feel so lucky to have been diagnosed in 3 years... i suffered the pain my entire life, but it didnt begin sever until i was 13. then began the from one doctor to another, and only because of my own research and demanding to see an orthopedic surgeon, rheumatologist, and geneticist did i get the EDS diagnosis shortly after my 16th bday... hopefully this is an indication that things are getting easier? 3 years is a lot better than 18 etc for a diagnosis....
Lin

By Jane Bergendorf on Monday, May 06, 2002 - 12:47 am:

Hi!
Am new to this site, but unfortunately not to pain, pain, pain. Diagnosis is elusive-willingness to speak of it by docs very strange. I am a nurse-trained at one of the best hospitals in world, ER nurse, and have reviewed owver 5000 med records for a job, and until last summer never even heard the term before. Not for the lack of contact with docs. Have lost tract of number of surgeris-+30, have been falling since I became vertical at age one, bruise easily, Dupytren's contracture, dislocations, TMJ problems, neck and back injuries, prolapse mitral valve, foot and ankle problems, ulnar nerve damage, and I will stop there since I am boring even myself. I cannot remember a day without constant pain, or just a minute. I have all but given up on finding something to take pain away-was given oxycontin for a short time last year, and perhaps in the right dose may help, although in past, if given enough med to help pain, I can't tolerate it. Same with anti-depressants-not found any that help. It seems strange that I get all the adverse effects, or none, from meds. I recently ask my hand surgeon if he thought I had EDS, and he stated that I did not have the right face for it, and then said I should see a plastic surgeon-I guess for scarring in hand-he just seemed not to have much knowledge.Please, if anyone knows of a good doc in Chg. area, let me know. Also, will be in Seattle area in June and would start there if that is my only option. Thanks all and gentle hugs- 3:30AM and no sleep yet. I have been taking ativan at bedtime for sleep disorder and nervous leg syndrom. Usually works, but awake in 5 hours.I must hold the record-50 years-no diagnosis. Welcome any info on doc referral.

By Silvia on Friday, May 10, 2002 - 04:16 am:

Hi Jane,

Have you ever seen a Genetecist for a diagnosis? I believe if you see one they should be able to tell you if you have EDS/HMS. What about a rheumatologist? I was diagnosed with HMS by a doctor who is a physiatrist. When I did research on HMS I found out that it is similar (or maybe the same) to EDS 3. I then had my Primary Doctor refer me to a genetecist because I had read EDS is a genetic condition.

Anyhow, the Genetecist told me he believed I had some hypermobility of my joints but said I didn't have EDS 3.

Hope this helps

By Iggie on Sunday, May 12, 2002 - 03:24 pm:

Jane

Is Dupytren's Contracture associated with connective tissue disorders as father had it and we also think he had HMS/EDS 3?

Iggie

By Rosemary Small on Tuesday, May 14, 2002 - 09:35 am:

Hi Jane Bergendorf,
Try Carol Dugowson, Rhuematologist at University of Washington, Roosevelt Joint Clinic in Seattle.
She was understanding, and will help you find answers.

By Rosemary Small on Tuesday, May 14, 2002 - 09:40 am:

Jane Bergendorf,
Its Carin Dugowson, not Carol Dugowson. I am a bit dyslexic and rarely see my mistakes in time.

By rlcooper on Monday, December 16, 2002 - 08:18 am:

I was just diagnosed this year, my worst symptoms that assist my feet/knees pain are cold chills, tiredness/aches, (flulikefeeling). I have tried several meds...mobic, bextra, naproxen...etc. and my stomach will not tolerate them, creating ulcers. The only thing that works for me is a prn med, like lortab/hydrocodone which I took for a surgery I recently had and now my symptoms are back since I don't take it any longer. So I don't know what to do since the other meds hurt my stomach. P.S. no one really knows the discomfort of this condition unless one has it, which is frustrating, it makes me feel like others think I am a hyperchondriac. I am a nurse that works 12 hour shifts 3 days a week and by the end, I am totally exhausted. Thanks for listening to me anyhow!