By Jo on Sunday, June 04, 2000 - 09:32 pm:

I was recently diagnosed with EDSIII and am trying to gather as much useful information as possible as far as follow up care and how to build up and maintain muscle tone in my joints. Do any "isometric exercise videos" exist? Should I make an appointment with a rheumatolgoist? How do I deal with workplace - everything I do causes pain? Any assistance will be helpful.

By Anthony on Sunday, June 04, 2000 - 09:33 pm:

Jo your so lucky to have found this site and I'm sure the other ones too, READ READ READ , Wish I had this information a few years back when I found out about EDSlll I just found all the info a few months back, I guess when It was too late for my wrist and thumb area.. Be careful on what you do with your body, if it dosn't hurt now, don't injure it, casue that injury will than last a life time. Best of luck to you in staying as healthy as you can

By Robyn on Tuesday, June 13, 2000 - 08:38 am:

Hi Jo... I was diagnosed with EDSIII back in 1994 at the age of 26. I went to a rheumatolgist in Boston. My GP referred me to her as he was not as well schooled in EDS and felt I should see her for an official diagnosis. Up until then nobody knew what was wrong with me. I have always had a problem with my coordination, joint pain and muscle fatigue which I now know is due to the EDS. I was told by the doctor that the worst thing I could do when it comes to exercise is anything high impact. She suggested that if I wanted to get into shape that I stick with anything low impact. The main objective is to find something that will not put any undue stress on your weak joints. I was told that swiming is a good form of exercise for people with EDSIII. Though there are many forms of low impact exercise. I personally have thought about looking into yoga. There are things you can do. Maybe you should make the appointment with a rheumatolgist and see if they have any suggestions for you. Good luck!

By P.G. S. on Wednesday, June 14, 2000 - 07:58 am:

I have had chronic health problems since 1988, age 27, at age 28, I was diagnosed with polymyositis, for lack of a better name for it, since it was atypical. I have seen rheumatologists in Atlanta at Emory, the Mayo clinic, and at the University of Cincinnati. I just moved 2 months ago to the small town of Ocala, Fl, saw a rheumatologist here and now he tells me that I have EDS. Is this thing just so hard to diagnose or so little known that I've lived now 39 years with something I was apparantly born with and it's taken this long to come up with a diagnosis? I go today for my second visit with him for a follow up and to get the results of xrays and blood work, but I am feeling so lost and helpless and don't even begin to know what to say to him or ask him? Can anyone offder any advice? I'm so confused!

By Jo on Friday, July 21, 2000 - 08:19 pm:

P.G.S.: You don't mention what "type" of EDS you were diagnosed with. If it is Type III (Hypermobility) I doubt very seriously that x-rays or blood work will show anything at all. In fact, they will make it appear as though you have no problems at all. This was the case for me prior to be "diagnosed" w/ EDS III. I even did a full body bone scan so the doc could determine whether the pain in my joints was caused by the "joint". Of course, since the bone is not affected all appeared "perfectly healthy" from his standpoint. Except for the left should. This of course was bright as day on the scan from having a bone graft done a few months prior. My shoulder was dislocating so much it wore the bone away leaving nothing left to hold it in place. This was surgery number three on this shoulder and 7 months later, it is slipping out again. Do your darndest to NOT let anyone cut on you because it probably will only put you in more agony versus "fixing" anything.

I work in a hospital and know a great number of physicians on a personal basis. Of those I have talked to about my EDS diagnosis, only three (out of approximately 50)has been familiar with EDS. Most have never heard of it. This may be part of the difficulty in diagnosing - I'm told it is rare and (if it's Type III) blood work won't tell you anything.

Please share with me what your test results reveal and what your doc recommends for follow up.

Hang in there, there is at least some solace in finally putting a name on your ailment. Jo

By Patrina on Monday, August 21, 2000 - 10:58 am:

Hi, folks. Occupational therapists are ideal for figuring out what you can do, how to do it & how to cope in daily life. I found out last night that EDS existed. I'm probably a type III; I've made an appointment with my doctor (family practice) for later this week & hope for a referral to a rheumatologist. I've always known something was wrong but not what or why. I completely ruined my knees as a child, not knowing better, by continuing to engage in activities like biking & attempting to run. Right now am just reading up. I've learned to do my own research & press for proper treatment or change doctors. I was diagnosed 3 months ago with fibromyalgia, & just discovered EDS through a link on my FMS support group message board. Thanks for listening, I guess I'm rambling but am so glad I'm not alone.

By Annie on Sunday, December 31, 2000 - 07:22 am:

I have had a long journey to diagnosis with EDS type 3. At age 31, I have spent 16 years with increasing joint problems; chronic pain and fatigue; nerve compressions; skin and vacular issues; inadequate response to dental anaesthesia; gastric refux etc. I have been told by several physios and rheumatologists I was hypermobile and could trace signs on both sides of the family.

Now, at last I have seen the legendary Prof. Grahame who diagnosed EDS 3 and wrote to my GP to explain the assorted problems I have being having are related to one source - hurrah, I'm not a hypochondriac; my chronic pain and fatigue are not due to stress as had been suggested.

In some ways, I am really pleased that I have a name for all my problems - especially for people who don't believe my experiences - but in other ways it feels a bit like a hollow victory as there is not really any more help than physio. and pain management, and there is the potential problem of inheritance. I guess I have really mixed feelings - how did other folks feel when diagnosed?

Best wishes to you all for 2001.

Annie

By Elle Elàn on Monday, January 01, 2001 - 06:04 am:

Hi Annie

I too felt sooo reliefed when my pain was given a name.At least when someone asked me what I suffered from I could give them a name!I even felt a little guilty about the relief I felt for I almost seemed happy to have HMS wich of course wasn't the case! The problem I faced however was that noone seemed to be able to tell me anything about it.This lasted about 3 yr and since I didn't know anyone else with HMS I again started to feel very alone and lost and even started to doubt myself again.Untill last year when I found this board and through this one , some others.Now I know lot's more about myself ,things I suffered from and didn't know were related to HMS. And most of all I'm not alone! So the best advice I can possibly give you is check this board and the rest of the internet regularly. Not only will you find tips and understanding, but you also won't feel alone.

By Gwen on Monday, January 01, 2001 - 10:46 am:

I'd like to add to what Elle Elan has just written. Over the year or so since I discovered this board I have come to the conclusion that we are each others most important resource for help, support and information.
While there are doctors who are interested in EDS/HMS, particularly Profs Grahame and Bird in England and Prof. Beighton in South Africa, there are very few among the rank and file who seem to have done much more than heard of EDS and then mostly in connection with "India-Rubber Men" at the circus.
It has been my personal experience that even though I have a diagnosis of HMS, and it is the only possible diagnosis to explain what is happening to my body, that other doctors are too keen and quick to deny that it could possibly be so because my symptoms don't fit into their preconveived ideas of what EDS/HMS is.
So what is it? If I ask them they don't really have an answer but don't want to read the literature that I offer to provide them. One even told me to give it to a physiotherapist or "someone who deals with that sort of thing"
Any of us who have this condition will say that it is one of the most difficult things to describe to anyone who hasn't experienced it. The joint movement can vary from minor to dramatic, pains linger for days in one area or hop from joint to joint in a matter of minutes. Today's sore shoulder will become tomorrow's excruciatingly painful big toe. One hangs on for days hoping the pain will settle down and then it does-the day one has an appointment to see the doctor!! Sometimes a quick squirm or a pull will put the offending joint back into place, other times rest, heat, analgesics are needed to allow muscles enough time to relax so things go back of their own accord. Sometimes physiotherapy or osteopathy is needed if things won't shift. And all this happens without regard to types of activity, climate or anything else you care to think of.
I believe that it is only through dissemination of our personal experiences and knowledge of our disorder that we will be able to learn the parameters (if they exist) of our condition.
Wishing everyone a successful, rewarding and pain-free 2001