HELP ME PLEASE!!!!!!!!

Hypermobility Forum for people with Marfan, EDS: Dislocations and subluxations: HELP ME PLEASE!!!!!!!!
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Sharon on Friday, April 06, 2001 - 03:49 am:

i posted similar recently and Was still wondering if anyone can help me.
I am Hypermobile and have been all my life but now at 30 (in 2 weeks)i have all of a sudden started dislocating/Subluxing everything, i mean something everyday, i have had a few dislocations in my past but nothing like now. In the past 2 months i have dislocated my ankles more than once, 2 ribsthe 1st time and just this week about 4-5 ribs (I lifted my arms), my wrist too many times to count, my right shoulder, too many times to count, and also at least 1 finger (I think)and i also think my hip on Saturday. Can any one tell me why all of a sudden i have just gotten so bad. I am also experiencing major muscle spasms for the 1st time. I also have Reflex Sympathetic Dystrophy and am HLA B27+ (achy tissue type) and had juvinnile rheumatiod athritus. Any help would be greatly apprectiated. My hips and a few other joints have also started to click a lot which they never really did before.
I think i have either HMS or EDS 3 but can't get in to see a rheumatologist until late May.I live In Australia and am female. I have never been and am not pregnant and probably never will if this is how i am now (plus we don't really want kids for now at least)
Please any help, suggestions or answers would be so greatly apprecited.
Thanks in advance
Sharon

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Lynn on Friday, April 06, 2001 - 05:21 am:

Dear Sharon: I hope someone with more experience replies to you soon, but, meanwhile, here are my "hunches." Since hormones levels do significantly affect joint stability in many women, maybe you should get your levels checked just to make sure everything's OK (although you're not pregnant, and probably too young for menopause, there are other GYN issues that make need to be considered.) Are the frequent dislocations at all cyclical? (Another hint to a hormonal influence). Try to get a GYN work-up before you go to the rheumatologist (especially if you have previous lab work that the new can be compared to for changes).How about medication changes? (both over the counter, prescrition, supplements, etc?) My daughter and husband click a lot- the doctors explained it (and of course I forget the details- but I have seen explanations on this site)- but also said not to worry about the clicking. It's more of a nuisance and a symptom that something's happening in the joint, but the clicking itself is not damaging, etc. Good luck and take care of yourself- Lynn

Top of pagePrevious messageNext messageBottom of pageLink to this message   By MichelleT on Friday, April 06, 2001 - 04:16 pm:

Sharon, I used to be fine until I hit 30. I used to sprain my left ankle a lot, but that's about it. I was very fit and active. When I hit 30, I started having problems with my SI joint.When I reached 32, my hips starting giving me trouble, resulting in me needing to wear a hip brace. Now I am 33 and I cannot run anymore, since the pain becomes unbearable. Almost everything clicks and clunks, and wants to give me trouble.

I notice that it is hormonal for me. At a certain point of my cycle, I feel a distinct change in the looseness of my joints. If I lean over while making the bed, my neck will slip out of joint. My hips become much worse, and everything cracks and pops. A week after my period, I can get through 2 or 3 days in a row where I don't need to wear my brace at all.

I've never been pregnant, and I'm quite anxious about how my body will react to that. I want children, but I am afraid that my body may not be able to handle pregnancy, if I am barely staying in one piece now.

I don't know why this has happened now. Perhaps when I was younger, my body masked the problem, and now it is wearing down from the years of stress of holding things together.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Sharon on Sunday, April 08, 2001 - 01:17 am:

Thanx for the input, my problems don't seem to be hormonally related and I seem to dislocate/sublux something everyday, Ribs are worst as I can't breath, but shoulders, wrist, knee caps, ankles, spine, neck, jaw and i think even hips also go out REGULARLY.In the past as a kid i used to roll my ankles all the time and had SIJ problems as a kid, as well as chrondomalacia and jaw clicking but NOTHING like Now.
TRhanx again
Sharon

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Jen on Sunday, April 15, 2001 - 10:17 pm:

Sharon my joints worsened when I was in my teens until finally my hips dislocated so frequently that I had to begin using a wheelchair. Even now in my thirties I have found I have days when I am extremely clicky and subluxate and dislocate joints very easily. There is one view that EDS does worsen as you get older and I have found that to be true in my case. Perhaps you could keep a diary of your symptoms and see if it correlates to your hormonal cycle.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By GRETCHEN on Tuesday, April 17, 2001 - 02:42 pm:

THERE SEEMS TO BE SOMETHING MAGIC ABOUT TURNING THIRTY. I HAVE ALWAYS HAD A TENDENCY TO SPRAIN THINGS KNEES, ANKLES, WRISTS. I HAVE NEVER BEEN ABLE TO STAND FOR ANY LENGTH OF TIME. A LITTLE AFTER THIRTY IT ALL GOT WORSE. I HAVE TWO LITTLE BOYS, THE FIRST WAS BORN WHEN I WAS 27 AND THE OTHER AT 30. BOTH TIMES ALL MY SYMPTOMS WENT INTO A SORT OF REMISSION. IMAGINE MY SURPRISE WENT IT ALL CAME BACK AND WORSE WHEN JAKE WAS ALMOST ONE. MY HUSBAND HAS ALMOST FORBIDDEN ME TO HAVE A THIRD BABY, FOR FEAR THAT I WILL NOT BE ABLE TO WALK AFTER ALL IS SAID AND DONE.

I HAVE BEEN USING APITHERAPY FOR YEARS TO CONTROL MY ARTHRITIS. (THAT WOULD BE ALLOWING SOME ONE TO STING YOU WITH A HONEY BEE.) SOME DRUG COMPANIES ARE ATTEMPTING TO MAKE A SYNTHETIC SERUM, BUT HAVE BEEN UNSUCCESFUL. I KNOW THAT THIS SOUNDS CRAZY, BUT IT DOES WORK. IT IS ALSO VERY EFFECTIVE FOR MS AND FIBROMYALGIA AND CRONIC FATIGUE.

TO DEAL WITH THE HYPERMOBILITY IN MY HIPS I HAVE BEEN UNDERGOING PROLOTHERAPY (SCLEROTHERAPY - IS THE ORIGINAL NAME OF THE TECHNIQUE DEVELOPED IN THE 1940'S) THE PAIN IS STILL THERE, BUT MY HIPS AND LOWER BACK ARE STABLE AND I CAN WALK UP STAIRS AND HILLS AGAIN. I DON'T KNOW IF YOUR COUNTRY HAS THIS OR NOT. I AM IN THE US. AN OSTOPATHIC DOCTOR IS ALSO SOMETHING YOU NEED TO FIND.

GOOD LUCK

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Emma on Thursday, April 19, 2001 - 04:50 am:

I am 22, and not yet had children. On reading the above and other information, I am coming to the conclusion that it would be wise to have them before I turn 30?!! (Or adopt). My worry is my cervical spine (which is off the scale for measuring HMS), I am scared it will not support the weight of a child. Does anyone have any further information on this?


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