By ALI on Sunday, June 04, 2000 - 03:50 pm:

I have been told i suffer from HMS, I have suffered constant pain in my knees for the last 5years and recently in my left shoulder i am taking NAPROXEN for my
legs and have had injections in my shoulder although noone has explianed this condition to me.i need to know more about HMS and the alterative treatments for this

By Jonathan B on Sunday, June 04, 2000 - 03:51 pm:

Hi Ali
Can you send me your email address again I can't
get any thing through to you at present.
received yours no problem.
I agree with everyone else ditch the doc he sounds like a bit of a nightmare especially if he doesn't tell you what he is doing.
If all else fails try a rheumatologist or a decent physio.
If you can drink it try camomile tea for alleviating anxiety and sleeplessness and also a pillow stuffed with dried hops is amazing.
A good herbalist would be able to tell you more.avoid the high street types they know not their trade.
I am happy to answer any questions you might have
take care Jonathan B

By john on Sunday, June 04, 2000 - 03:51 pm:

Ali.
I understand your frustration with what is HMS and the lack of knowledge within the medical profession. i have just completed my masters on this condition and the
first thing I found was the inability to even accurately measure and diagnose this problem. Not everybody has it to the same degree.
What we do know is that HMS a condition for life but as you age (men late 20'S and women late 40's)this eases, though you will always be in the same percentile
for your age. The best approach is to ensure that you maintain good body strength and control while never doing end of range exercises (ie you already stretch
enough why practice this directly or whilst doing exercises)
the following book might help you. It is a bit medical but will still give enough information for you to get a better understanding of this condition.
All the best, John

By john on Sunday, June 04, 2000 - 03:52 pm:

Ali,
sorry I forgot the book reference
Beighton, P., Grahame, R., and Bird, H. (1989). Hypermobility of Joints. (2ed). Springer -Verlag. London.

By Ian on Sunday, June 04, 2000 - 03:52 pm:

ALI - I have a lengthy item for you; can you e-mail me with address, Ian

By Gwen on Sunday, June 04, 2000 - 03:52 pm:

Hi Ali, do you find you are getting relief with Naproxen? It is an anti-inflammatory medication and generally HMS doesn't seem to be an inflammatory condition.
Long term use of anti-inflammatories can lead to gastro-intestinal upsets. Have you tried Paracetamol which is a straight out analgesic and doesn't have GI reactions.
Alternatively your options are opioids such as Dextropropoxyphene or some of the newer things such as Celebrex which homes in specifically on the COX2
enzymes that mediate pain. Other medications to discuss with your doctor would be Tramadol or some of the anti-depressants such as amytriptyline or nortriptyline
which can alleviate pain at lower therapeutic levels than need in the treatment of depression. Alternative treatments to consider are prolotherapy (if available in your
area) Greg seems to be the one who lnows all about this; naturopathy; hypnosis; relaxation techniques; biofeedback. There are many options, some of which may
seem little advanced from superstition or quackery but one of the things I have discovered about chronic non-malignant pain, which is what most of us have, is that if
it works don't knock it. Hope this may be of some use in helping you explore further options. Keep posting and let us know if you find anything that's effective.

By ALI on Sunday, June 04, 2000 - 03:57 pm:

Jonathan B and Gwen, The problem i have is with my GP he makes me feel like i am wasting his time.and as for taking anti-depressents i have been taking them on
and off since september 1991,i have constant pain in my knees, and up to now i though i was alone and would just have to suffer in silence THANK YOU for your
interest. Keep well love Ali

By Sue C. on Sunday, June 04, 2000 - 03:57 pm:

I agree with Gwen & Andrea Thomas's replies.

If your GP doesn't respect you or want to give you the time of day, either be very blunt about how this makes you feel AND/OR forget this unhelpful person and find
another doctor. This is probably his method of telling you to find someone who cares. And it's up to you to find someone who cares -- and don't worry about the
distance to the doctor's office. You want quality care and RESPECT! It's in your best interest. (And maybe you don't even need anti-depressants. You could be
partially depressed BECAUSE of this non-caring doctor! I know I certainly was upset with one bad batch of doctors I visited last year. It's been really uplifting to
find medical people who care!)

By Andrea Thomas on Sunday, June 04, 2000 - 03:57 pm:

Dear Ali

I have just been to see my GP to tell him what I had found out about HMS and that I would like him to refer me to Professor Grahame at the Hypermobility Clinic at
University College Hospitals in London. His reply was that my pain was due to inflammation (which is not the case with HMS) and I had sleeping problems because
I suffered from depression (he has never asked me why I slept badly). He then got his prescription pad out and prescribed me, yet again, an anti-inflammatory and
an anti-depressant... Have you considered complementary medicines? How about St. John's Wort instead of a synthetic anti-depressant? Or Glucosamine for your
joints (helps with maintenance of connective tissue such as ligaments and tendons)? Have you had any physiotherapy or hydrotherapy? And how about telling your
GP that if he does not want you to waste his time he should refer you to Professor Grahame?! Join the Hypermobility Syndrome Association, visit their web site
(www.hmsa.freeserve.co.uk).

Mail me anytime. Take care - Andrea

By Gwen on Sunday, June 04, 2000 - 03:58 pm:

Ali, sorry to hear you have that sort of GP. Unfortunately all too common. I can sympathise as I live in a small community with only one medical centre and my GP
has those tendencies but since I had a good "blow-up" at him one day he has actually listened more and started to treat me as someone who is actually
knowledgeable about their condition. I tend to compromise by seeing another doctor in our nearest town (50km distant) for naturopathic treatment which had some
success in the past, while keeping my local GP for non-pain related matters. I keep him informed of what I'm doing as regards alternative treatments so he doesn't
think I'm going behind his back and that way we're both happy. Try shopping around if you don't feel your doctor is doing enough for you. After all you're paying,
you wouldn't keep going to the same supermarket if it sold shoddy goods. Ask other people on this forum who they would recommend. If you live in England,
Canada or USA there are good support groups with lots of information. Don't put up with being fobbed off. Above all become well informed about HMS/EDS and
don't be afraid to be assertive and demand answers about your treatment. Despite their grandiose delusions, doctors are only human beings and frequently fallible
ones at that. Good Hunting!

By Jonathan B on Sunday, June 04, 2000 - 03:58 pm:

Ali
sorry you are having problems
I am presuming you are talking about cortizone
I have seen postings about injections particularly in the shoulders saying it can cause more problems. my shoulders are extremely mobile and I have had the most
success with straight lift exercises(heavy weights) and pressups on a raised surface like the kitchen work top.
depending on the severity of your pain you may find more benefit in taking 2x500mg paracetamol 4x a day.
try the hmsa for a good description of Hypermobility syndrome feel free to email me and good luck
stay well Jonathan B

By mandy on Saturday, June 24, 2000 - 03:14 pm:

i agree with the others, change your doctor or do what i did. for years iwent to doctors with no joy the i found out about prof grahame of here so i phoned his secatary at his privatr clinic explain my problems but in stead of going private prof grahame said see if your doctor will refere you whitch lookerly for me he did and on thrus 29 i am finally going to get proper help so chin up and keep nagginy your doctor.