By Catta on Wednesday, February 07, 2001 - 09:41 am:

Just before Christmas I got the diagnosis EDS, type I. I have always wondered why I was different to others, and thought that pain in feet and hips were something everyone had. Now I have the answers to everything that has happened to me in my childhood.( I'm 32'years old)
I'm very ambitious, I want life to spin and as years go by, I realise that I don't have the strenght to manage this in the way I want. My physician says that this is very common for people who has EDS. Is it so? I want so badly to do things and I start up with it, and only a little while after that, I can't do it any more! I feel worthless! It's like all strenght in me has dried out, can't do anything.Does someone recognize this?

Another thing I feel is the fact that I haven't known about my EDS until now, and I have a hard time to get people I know to accept the fact that I one day was "healthy" and the other day with a disease without a cure. " You have always managed, why not now?". To tell that everything I felt was wrong with me, was very right. ( I hope you understand.) I would be very grateful if somebody would take their time and tell me if they have felt/feel the same ting.
( Have a rusty english, I'm sorry if it isn't the best grammar.)

By Gwen on Wednesday, February 07, 2001 - 01:54 pm:

Catta, your English is very good. I think most of us who use this forum have had these feelings.
I had about ten years of pain and clicky joints before I was finally diagnosed as having HMS. Once I started finding out about hypermobility and all the side effects I began to understand why I was always so tired but never able to sleep, suffered from depression and simply couldn't take an interest in anything other than life's bare necessities. I learnt that constantly fighting pain drains ones energy. That needing to have ones muscles tense to hold sloppy joints in place created more pain and used up more energy than a normal person would.
I learnt also that doctors who have any knowledge of hypermobile conditions are few and far between and most who don't know about thses conditions aren't really interested in finding out. I consider I was fortunate that the doctor who made the initial diagnosis is the person who first described Hypermobility Syndrome as a condition as subsequent doctors do not seeme as hypermobile but aren't able to come up with a reasonable alternative diagnosis for what I experience. If I didn't have that diagnosis by Julian Kirk to reassure myself I seriously believe I would be a patient in a psychiatric institution today instead of a health professional.
I have learnt that the best support I can get (excluding that from my family, especially my wonderful Mum who also has HMS) is from other sufferers. The range of symptoms we experience is so wide and seemingly unrelated that we constantly question, "Is this part of the collagen disorder or is it something else?" We need each other as sounding boards, shoulders to cry on and hand holders against the ignorance and disinterest of the medical profession.This is not to say that there aren't medical professionals who care. There are, especially I have found physiotherapists, but they seem to be pretty thin on the ground.
I have learnt too that pacing oneself is important. We have to accept that our energy levels are much lower than non-hypermobiles and adapt our lives accordingly. One of the first things I did was lower my standard of housekeeping. I can now live comfortably with a certain level of dust and clutter whereas before I was working so hard at being Mrs Perfect Housewife as well as working outside my home. Another thing I did was stop being available for voluntary tasks, committees, fundraising drives etc. OK, I had my fair share of comments about, "Funny how you're never well enough when we need someone to take children to sports day." etc. and Yes, they did hurt at the time especially as I was so emotionally fragile anyway but now people have learnt not to ask and I don't have to explain why any more. I do what I can as and when I can.

Over the last eight months my level of pain has lowered dramatically for no apparent reason and I'm loving it! For the first time in years I'm getting a regular six hours a night sleep, have completed post-graduate training and am now preparing to go into private practice as a therapist. Life is really pretty good right now. I've tried to work out what has caused this sudden improvement but been unable to come up with any firm conclusions. Two things may have helped. Early last year I had access to therapeutic massage equipment which was brilliant. I was so impressed I worked for the company part time but didn't make the grade as a salesperson. In all I had two months daily use of the equipment. The other thing that happened about that time was a course of homeopathic injections. I had a similar course once before and had a pretty good run for about 18 months afterwards but felt nowhere as well as I do now. I wonder if it was a combination of the two or whether, as Dr Kirk predicted, old age is sarting to catch up with my joints and cause them to stiffen, thus counteracting the HMS. I'm not too sure about this tho' as I can still do all my "party tricks". I included this to let you know that there can be improvements or at least fluctuations. As the motto goes, "carpe diem" or live for the moment.