By Sharon on Sunday, March 18, 2001 - 01:21 am:

Was wondering if anyone can help me.
I am Hypermobile and have been all my life but now at 30 (next month) i have all of a sudden started dislocating everything, 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 ribs, my wrist too many times to count, my right shoulder, too many times to count, and also at least 1 finger (I think). 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 June.I live In Australia and am female.
Please any help, suggestions or answers would be so greatly apprecited.
Thanks in advance
Sharon

By Lucy on Monday, March 19, 2001 - 07:35 am:

Hi Sharon,

I wish I could help, but the best I can do is to let you know that the same started happening to me around 30 too. I have EDS3. Originally, when I was first diagnosed, they told me that it would get better as I get older, but I find the opposite is happening. I started to get the muscle spasms, dislocating ribs and SI joints all around that time. I am currently undergoing prolotherapy - I haven't completed the course yet so can't give a "report" on whether it's working or not. Is there anyway you can get to a doctor sooner? There are things to take for the spasms, which I know are excruciatingly painful. For my spasms I take valium at night. Quinine sulphate also works. Seriously, drink more tonic water and you'll find it helps. Hot baths work too. Wear tight jeans, tube socks and avoid wearing a bra if you can (I find it really hurts my ribs). I know this isn't much but these are little things that may help to tide you over. Please feel free to email me if you'd like. Take care - Lucy

By Sharon on Monday, March 19, 2001 - 04:38 pm:

Thanx Lucy,
Anything helps. I saw my GP yesterday and was given an anticonvulsant for the muscle spasms (i also have Valium, and am going to see the rheumatologist in May now and they are going to try to get me in earlier. I drink a lot of water already. We don't have prolotherapy here in Australia I don't think but will ask when i see the doc in May (I don't know if i would be able to have it because of the RSD anyway). I do take hot baths and we are soon to have a spa bath installed (hopefully very soon) i do go with out a bra a lot and will try the tight pants and tube sox. Thank you very much for your help it is greatly appreciated
Sharon
P.S feel free to email me

By MichelleT on Monday, March 19, 2001 - 09:00 pm:

Hey, what is it about 30? When I hit 30, my joints went all over the place too! I can't imagine what will happen when I'm pregnant. I envision my legs ripping off of my torso, because my hips won't hold them in place anymore.
:)
gotta laugh-at least I can walk.

By Claire on Tuesday, March 20, 2001 - 06:10 am:

Crumbs....what indeed is it with being 30??!!??

My problems started during pregnancy last year and rheumatologist told me that within 6 months everything would be back to normal!!?? I WISH! Things have got progressively worse and I now find myself resorting to using crutches to walk any distance. Guess what.....I am 30 in 4 weeks time!

Claire
x

By lucy on Tuesday, March 20, 2001 - 07:54 am:

Things got worse for me too after getting pregnant. In fact, 3 weeks into the pregnancy and I was falling to pieces, literally and lost the pregnancy. Right now, they're telling me to either have my SI joint fused or continue with the prolo to see if it works.

Claire, would you mind letting me know how your pregnancy was? My doctors are telling me that if I try again I'll have to be on bed rest. I'd like to know your experience.

Take care everyone and remember, being in ones 30's is much more fun than our 20's because we know more! Lucy

By Iggie on Tuesday, March 20, 2001 - 08:04 am:

Hi,

My joints have become progressively worse since mid 20s. I am in a real quandary about pregnancy and have delayed it in case it stops me completing my studies and working - which I have only been able to do part-time since age 21! Any one with any advice/positive/negative stories about effects of pregnancy and childbirth would be very welcome!

By Claire on Tuesday, March 20, 2001 - 09:54 am:

Hi Lucy,

I will e-mail you with details of what happened to me. I won't post here as it would be a very long message and some might think I was being negative!
Claire

By Sharon on Tuesday, March 20, 2001 - 03:18 pm:

Thank you all for the help it is so greatly appreciated. I am going to see the rheumatologist in May now and am trying to get in earlier. I have to laugh with it too. I sometimes wear so many braces I look like a crash test dummy. Lucy I would appreciate the email too thanx. It helps so much to find out that others have gone through the same thing. My partner and I decided not to have kids and I personally dont think my body could handle it. What makes it hard is in most of what we read it says that we hypermobiles should get better with age and it seems to me that we have all got worse with age. I had problems as a kid (never new what it was then though) and was and still am very clumsy/klutzy and flexible and I damaged my hip, SI joint at about 12 and now think that I probably dislocated it (I was also told at 12 that because of resulting damage to my pelvis (it is out of shape) that I would never give birth naturally and would have to have c-sections (nice thing to tell a 12 year old), but i never had so many problems then as I do now. So thank you all very much for your support and everthing it really helps
Sharon

By Lin on Tuesday, March 20, 2001 - 04:13 pm:

actualy, it was half that for me, 15 5o be exact. After I turned 15 all my hypermoible joints startled dislocating on weekly, sometimes a daily basis even. I was diagnosed with chondromalacia patella, and scoliosis, and HMS. I am searching for a diagnosis of EDS.
Lin

By Eppie on Wednesday, March 21, 2001 - 09:28 am:

I'm in both the '30' (last July) and 'pregnancy' group...double whammy. Again, I'll push the hormone factor as the principal cause. You do have to laugh :)))))))))))))))))))))).

p.s. If it's any consolation to those of you considering motherhood, I had NO trouble until AFTER my pregnancy.

By Patty on Monday, March 26, 2001 - 06:30 am:

Thought I would share briefly that I first started noticing painful subluxations during my second pregnancy. I lost my first, but not due to EDS. At about four months I could no longer vacuum or mop the floors as the back and forth motion did my left hip in. When we got on the floor for Lamaze, my SI and hips went out and my sweet hubby had to move me just right to get things back in and get me up (24 years before the diagnosis of EDS) At delivery, baby's head was already +1 station at 2 cm. After delivery, my wrists and fingers started aching and it has been all down hill since. The other two pgs were about identical.

By johanna on Friday, March 30, 2001 - 03:30 pm:

Trouble really started for me with my first periods, at about 11, down hill ever since.
(20 yrs old now) Don't wanna know what I am heading for.

By GRETCHEN on Friday, April 06, 2001 - 11:00 am:

I HAVE HAD TWO SUCCESSFUL PREGNANCYS. THE SYMPTOMS OF HYPERMOBILITY GOT MUCH WORSE WITH THE FIRST AND I WAS TOLD BY MY DOCTOR AT THE TIME THE PAIN AND LOOSENESS WAS BECAUSE I WAS PREGNANT. SOME DID SOME DID NOT. WHEN I BECAME PREGNANT AGAIN TWO YEARS LATER EVERYTHING WENT INTO A SORT OF REMISSION. AFTER MY WONDERFUL AND MOST LIKELY HYPERMOBILE SECOND SON WAS BORN THINGS WENT TO HELL AND A HAND BAG. FOR A YEAR I WAS SHUFFLED BETWEEN PHYSICAL THERAPY AND DOCTORS. I WAS MADE MUCH WORSE. I ALSO FACE FUSION OR PROLO. I CHOSE PROLO. IT HAS BEEN ABOUT A YEAR AND A HALF OF TREATMENTS. IAM FINALLY STARTING TO SEE THE LIGHT. I NEVER FALL ANYMORE AND ALMOST NEVER HAVE A LEG THAT DECIEDES IT DOES NOT FEEL LIKE GOING ALONG WITH THE REST OF ME, SO THAT I TRIP. I EVEN WOKE UP PAIN FREE ON MORNIN. I AM TRYING TO TALK MY HUSBAND INTO ANOTHER BABY.

By Eppie on Monday, April 09, 2001 - 04:13 pm:

Gretchen,

Please let me know how you came to your decision to have another baby despite the obvious impacts to your body (in terms of enhanced hypermobility). I would love another child eventually, but I'm not sure I could endure taking a step backward in the rehabilitation of my body, Any insight would be appreciated.

Eppie

By Kim on Saturday, March 16, 2002 - 01:17 pm:

Sharon,
I too have gone through what you are experiencing now. For me it started after I had my children which made some things rather difficult. I was lucky in having great support from my family and friends. Also a great Dr. I have learned to put my joints back in myself all except my jaw. There is something about putting your fingers in someone elses mouth, its a big trust issue! All of the people I hang with know.. a trip to the er is a very real possibility if Im along.. Life is what you make it. This disaease is PART of who I am not what I am. Good Luck, Kim

By Donna Graham on Wednesday, February 26, 2003 - 10:59 am:

Can anyone tell me what works best in controlling muscle spasm of the waist, entire leg and foot? My daughter has EDS and is having major problems with her right hip. Her hip snapped the first of February and she had been in chronic pain since that time. Two days ago her hip snapped again and muscle spasms started. When the muscle would contract it jerked so hard that it would lift her leg off the bed and then from the waist to her foot the contractions would draw into a hard knot and rotate the entire side of her body to the left. I tired to prevent her leg from rolling by holding her knee and ankle. In all my life I have never felt such power behind muscle contractions. She was in horrible pain and I had to call ambulance to transport her to the hospital. The ER Doctor suspected a dislocated hip but the X-Ray came back showing no dislocation (nothing ever shows up on an X-Ray). She is currently taking Hydrocodine 500 mg and Valium 5 mg to control the pain and spasms. However if she tries to walk (using walker) from the bed to bathroom or chair it will set off the muscle spasms again.

I would greatly appreciate information on what has work in controlling muscle spasms.

By Pat on Tuesday, March 04, 2003 - 08:34 pm:

Wow, Donna. What a mess! My heart goes out to you and your daughter. I get muscle spasms, but nothing like that!
I have quite a stock of different muscle relaxants, but my favorites are flexeril and xanaflex. I had to use one the other night for spasms in my foot. Fortunately, I can usually get relief from one fourth xanaflex, but sometimes I've had to take more. I also don't mix them. I've never tried valium.
I hope someone with more info in this checks in here for you.

By shazinoz on Monday, March 10, 2003 - 02:53 am:

Donna,
I too get that kind of muscle spasm and they are SCARY, I too was thought to have dislocated my hip but nothing shows on x-ray where as my GP and osteopath say my hip definately went out but relocated itself thus no supporting x-ray evidence , I am still very house bound after this event (in January onthe 11th) and am told that my hip capsule and ligaments are all stretched out and loose and this is why my hip pain is so bad. As to what helps my muscle spasms, when bad it is Valium, otherwise and always I also take MsContin (for pain) and anti convulsants (personally now I am on Clonazepam and Neurontin at the moment but have also tried tegratol, epilim and others) and I take mutritional suppliements as well (MSM, SCF, Glucosamine, Zinc, Chromium, Potassium and magnesium and also vitamin C and multivitamin) since being on these things have settled down a little . And as this isn't as bad as narcotics and other drugs, I prefer natural substances. Also try muscle relaxants, and such as well.
Hope this helps
Shaorn