By Andrea on Friday, June 02, 2000 - 01:27 pm:

Dear All

If only I had known! Oh I wish I had found this Board earlier then I might not have ended up in quite the mess I am in now. After seeing 13 orthopaedic surgeons
who felt my symptoms were in my head (and one of them performed an ulnar nerve transposition because he was convinced I had trapped nerves) I was finally sent
to a rheumatologist whose female Indian registrar diagnosed HMS. She said she had never seen such a double-jointed Caucasian before (I am 5'11'' tall with an arm
span to match). During the last year I developed severe sleeping problems and have now been diagnosed with secondary fibromyalgia which can apparently be
brought on by stress. I have been offered counseling and anti-depressants which I have refused. I feel fobbed off, yet again.

There was, however a significant event in my life which seemed to make the HMS much worse: the birth of my daughter nearly four years ago. I tore the left
sacro-illiac ligament during labour and have never properly recovered. I have been in constant pain all over ever since and no pain-killer works. I am physically
exhausted. I feel like going down with flu in the evening and wonder who has beaten me up the night before when I wake up in the morning.

I have asked my GP about the possible connection with collagen. His reply: "We won't go into tedthat, that's too complicated." I never developed a decent scar after
injury or surgery, not even with cosmetic surgery on a breast after removal of a cyst. And I suffered from such severe strabism as a child that I had to have surgery to
both my eyes (more collagen).

I have now taken up contact with a friend who is a nutritionist and asked her about allergies and a possible search diet. She deterred me from the diet because I am
too light at the moment (9 st) and suggested instead that I took supplements of Vitamin C and flax oil, and instead of anti-depressants St. John's Wort. And I also
found out from the Fibromyalgia Society that Glucosamine could be beneficial especially if added with Chondroitin. So I am taking all four and I would be glad for
any other advice or help or hints... or just sympathy. I sometimes feel I am on the brink of going mad. Many thanks to everyone who has the patience to read this
long message.

Andrea

By Gwen on Friday, June 02, 2000 - 01:29 pm:

Andrea, I am sorry to hear of all the stress you are suffering. After having read various postings on this forum I'm sure you now realise that unsympathetic, ignotant
medics are one of the side effects of the various disorders we collectively suffer from. While I don't want to appear alarmist or be seen to be making a diagnosis,
have you considered the possibility that you may have Marfan's Syndrome? It too is characterised by some degree of hypermobility and people who have this
condition are often taller than average with longer than average arms. There is too a tendency to have eye problems in Marfans. As I have said, it is just a thought. If
I were you I'd start searching for another doctor who is prepared to listen. M.D after ones name means docotr of medicine, not Magnificent Deity as they all too
often think. Good Luck. Gwen

By Sue C on Friday, June 02, 2000 - 01:30 pm:

I love that quote:

M.D after ones name means docotr of medicine, not Magnificent Deity as they all too often think

By James on Friday, June 02, 2000 - 01:31 pm:

I sympathize with your struggle. I am a D.C. which
might stand for Diety Certified, but now I'm in
academia, so it's moot. :-) I'd like to relay a few
tips which may help based on my experience with
collagen-deficiency syndromes. If that's what you
have then there's a genetic barrier preventing
production of certain high-quality collagen proteins.
Though many would say nothing can be done, what can be
done is to strengthen and support the existing synthesis
pathways. This amounts to meticulous protein
surplus, meaning, making sure that there is an
abundance of protein in the bloodstream most of the
time. At least 3-4 meals of adequate protein
everyday are needed to do this, more wont hurt.
Very careful and monitored weight training
exercise is also helpful at stimulating collagen
growth. Specialized bracing can supplement this
training as well as facilitate other types of
exercise that stabilize the joints and surrounding
musculature. Sports massage is irreplaceable for
post traumatic scar tissue removal and stimulation
of collagen fiber regeneration in the event
of injuries. Though un-researched as of yet,
pure and nutritive whole-food dietary habits
may also insure the harmony of all supporting
systems. Absolutely obtain first hand advice
from a doctor who is familiar with dietary,
sports, and nutritive (i.e. herbs, etc) therapy
before doing anything however, as you need a
proper diagnosis first. Most of all, be patient
and don't expect alot of results too soon.
Good luck!

By Maggs on Friday, June 02, 2000 - 01:31 pm:

I'll remember the one about M.D.
Here's one of my personal favorites:

Medice, cura te ipsum!
Doctor, cure yourself

Andrea, don't give up!

By Beth on Friday, June 02, 2000 - 01:31 pm:

I will have to remember this one. I know a few Docs with a sense of humor who would appreciate that!LOL

By Stacey on Friday, June 02, 2000 - 01:32 pm:

I know how you feel too. Most of my docs look at me and see a woman crying wolf. I am a pilot in the U.S. Navy and haven't been able to fly because of the pain.
Right now as I write I am finding it hard to sit in the chair. I have started acupuncture, no success yet, am an still waiting for the military docs to run more tests.
They say that women with HMS are prone to hip labelar tears, so I am having an MRI next week for that. Keep your chin up, email me if you get too down. Talking
about it with people who understand is a godsend.

By Ann on Friday, June 02, 2000 - 01:32 pm:

i know exactly how you feel! It has taken me many years (18) and many more doctors to find someone who will take me seriously. Right now I take 4 medications
and am still hoping for some relief. I've been taking glucosomine and chondroitin for years. I am not sure what is worse hypermobility and EDS or the additional
fibromyalgia.

This board has been a godsend if only for the sheer comfort of knowing you are not alone and it is not all "in your head". Trust me, there are days I wish it was all in
my head, somehow I believe that would be quite less painful.

I have found that keeping active helps although that is sometimes difficult when you wake up,( if you sleep at all that is) feeling as bad if not worse than when you
layed down. Yoga and walking 4 miles a day when possible seems to help me to at least deal with the stress and frustration.

I wish you all the best Andrea. Keep reading this board.........it really helps and it is surprising how much you learn. (Much more than most doctors know! ) Although
we all have a special impetous spurring us on.........pain and a lack of understanding by most medical professionals .
Take care

By Sue C on Friday, June 02, 2000 - 01:33 pm:

A geneticist should be able to give you a proper diagnosis.

Try ednf.com for more info -- fragile skin & lack of response to anesthesia are 2 related symptoms of eds.

Also, demand to discuss what YOU are paying to discuss with the doctor. Or switch doctors to one who listens and comprehends.

By Andrea on Friday, June 02, 2000 - 01:33 pm:

Hi everybody

Thank you all for your support and help and advice. Yes, this board is a godsend. And I shall ask my rheumatologist what his M.D. stands for... after all, I am paying
him to tell me what he is telling me!

With regard to exercise I am interested to hear from anyone who does or perhaps rather has done a lot of exercise. I have a teaching degree in P.E. and had therefore
done a huge amount of exercise in my youth (gosh, that makes me feel even older now!). Needless to say that I neither do that kind of exercise any more nor, for that
matter teach the subject. The only exercise I do now are swimming, cycling (more a means of transport) and walking (often out of frustation).

Regards - Andrea

By Sheri Cobb on Tuesday, June 06, 2000 - 02:58 pm:

Hi!
I just stumbled upon this board as I was searching for a possible reason my joints have been popping excessively for the past 2 months. It started all in one weeks time and has continued to the point of alarming status. I mean all my joints. My hips, knees, ankles, shoulders and my forarm as I supinate. The only pain I have is in the left shoulder and hand at this time, but I am concerned what will happen if this gets worse. Please, I have been to an internal medicine specialist and my blood work looks great. Any ideas? Thanks Sheri

By Bianca on Wednesday, June 07, 2000 - 05:47 am:

Hi Sheri,
it may be, that you have something connected with hypermobility.Ask your doctor- and when he doesn't know, go to a rheumatologic doctor-in my experience they seem to know that there is something like HMS, almost better than orthopedics or GPs.
Or search a doctor in your environement, who is well known with hypermobility.
Good luck

By James on Wednesday, March 31, 2004 - 06:34 pm:

(1) I’m 22, male, and was recently diagnosed with BJHS (also possible FMS and/or CFS). Except for doublejointed fingers that I’ve always had, and TMJ that began 4 years ago, I have never been hypermobile or hyperlax at all until last year when in a 5 month period both knees suddenly became very loose, bowing to sides and back, and both feet went flat. Has anyone else experienced anything like this?
(2) Physicians are claiming it is genetic. How can this be if the hyperlaxity just happened? All the literature I can find on BHJS talks of patients with life-long hypermobility and or hyperlaxity who suddenly develop pain, but no mention of patients who develop pain first, followed by hyperlaxity and hypermobility. What other causes are there aside from genetics?
(3) Where do I find documentation to support this?