By Silvia on Friday, June 15, 2001 - 02:18 pm:

Hi,

Does anyone out there have hypermobility hroughout the body? I've been reading that people who have it tend to have it in one or just a few joints. Anyway, I'm 29 and a couple of months ago I tarted experiencing chronic pain in my low back and right leg. Eventually it spread to include
my whole back, neck, shoulders, right knee and foot. I've been told I have hypermobility syndrome. Please respond if any of you have
experienced this. I also started Prolotherapy and found some relief after my first session. By the way, I've also been told I have Barre-lieou
syndrome, which causes strange symptoms (clicking sound in ears, facial twitches, etc.) Does anyone else have this due to hypermobility?
Any input will be appreciated :-)

By Diane on Tuesday, June 19, 2001 - 07:01 am:

I was beginning to wonder if my son was unique. He is 8 and has hypemobility in his whole body. He also has chest pains (though a cardiologist said it's not his heart).

I sure hope the prolotherapy works for you.

Diane

By Anna on Tuesday, June 19, 2001 - 02:06 pm:

Hi Diane,

I have just found out I am pregnant. We had decided not to have children as I have two herditary illnesses, but now that it has happened I just hope all will be well. Can you tell me when you first noticed your son, and what to look out for? Also, if you are hypermobile, did you have problems in pregnancy, and what were they?

Thank you.

Anna

By Anna on Tuesday, June 19, 2001 - 02:06 pm:

Hi Diane (or anyone who can help!),

I have just found out I am pregnant. We had decided not to have children as I have two herditary illnesses, but now that it has happened I just hope all will be well. Can you tell me when you first noticed your son, and what to look out for? Also, if you are hypermobile, did you have problems in pregnancy, and what were they?

Thank you.

Anna

By Gwen on Wednesday, June 20, 2001 - 03:13 am:

My hypermobility problems first became noticeable
during pregnancy. From my fifth month onwards I
was spraining ankles, having neck pain and wrist
pains. I was told that the effect of Relaxin, the
hormone that makes the pelvic ligaments relax to
give birth affected all the ligamenst in the body
but was only a temporary phenomenom It didn't get
any better after pregnancy although I was told
that it would go away once my hormones settled
down again. When my daughter was eleven I saw a
rheumatologist who told me that occasionally some
women continue to have joint hypermobility long
after they have given birth but that it should
settle down once I was through menopause and my
body had slowed on hormone production. I am and it
hasn't! If anything I have more trouble with more
joints than ever I did when in my 20s and 30s.
Interestingly tho' a second pregnancy when my
daughter was eight didn't cause further problems.
My daughter doesn't seem to be overly hypermobile
but has unexplained joint pains but my son is
definitely hypermobile but no joint pains. I
guess I'm somewhere in the middle. Very
hypermobile in my spine and hips but elsewhere the
problem is more clicking and graunching of joints
than hyperextensibility. I don't have any joints
that don't ache but distribution and degree of
pain fluctuates from day to day, often from minute
to minute.
Both my children are aware of the condition and I
try to educate my son in particular not to do
"party tricks" for his school friends. I hope
that, should they develop the full blown problem
both they and their doctors will have sufficient
education for them to receive the support they need.

By Vicki on Wednesday, June 20, 2001 - 06:00 am:

I am hypermobile throughout my whole body. So much so that they can't stabilize any one part enough. Every other day I have "muscle energy" treatments with my therapist to realign my spine, ribs and shoulders. I have been able to stabilize my lower back the best through water therapy but the strongest lower back in the world doesn't mean a thing when my ribs, neck and/or shoulder have moved too much the wrong way. Most of the time with sharp running pain down my right arm up my neck into my head and face and down my right leg into my foot (which also "burns" or is numb). With this, I can barely walk but I can't use a wheelchair either because I haven't been able to sit for 10 months now. I'm going on my 10th doctor in my area since January because no one can figure out what to do with me...

By Vicki on Wednesday, June 20, 2001 - 06:02 am:

About the chest pain... I get that when my first and third ribs have moved.

By Patty on Sunday, July 22, 2001 - 04:47 pm:

Hi Sylvia and Anna.
I have chest pain just to the right of center. Since I also am the one in 100,000 who get blood clots from birth control pills and threw them to my lungs, that is the first thing the doctors have checked out (twice). They finally decided it was the esophegus,but now that we are diagnosed EDS, we realize what it is. My daughter also has it. Now that I know what it is, I don't worry, but deal with the pain.
My first PG was hard with the hip dislocations that wouldn't allow mopping or vacuuming. The others repeated it, but I expected it so it wasn't so hard. My firstborn is not affected, but the second was born with snapping perineal tendons. He started crying with hurting knees at age 2. We didn't know what it was and the doctor just "Wow"ed at the looseness of the joints. No diagnosis, no help. My daughter is also affected and was the first to be called EDS. Nothing really bothered her, she just showed off to an MD friend. (Now she has pain and dislocations.)
My advice? Don't hover over you child, but do be aware of "tricks", listen to complaints of joint pain. Hopefully the baby won't have it. Relax. If the baby has problems, at least you can lend a sympathetic ear and get the right help. I didn't know and my kids have suffered needlessly.
Best of luck!

By Lucy on Sunday, July 22, 2001 - 11:06 pm:

Hi Sylvia,

I am 33 and have hypermobility (EDS 3) all over my body. It started in just my shoulders and knees but has since, and continues to spread. Ehlers Danlos is a degenerative connective tissue disorder so this, unfortunately, is to be expected. Please be careful with prolotherapy. Make sure that you know who you are seeing and that you have plenty of opinions of whether it is the right treatment for you or not. I had about 5 sessions and I was worse for it. I know that many people swear by it but there are no conclusive studies that show it has any benefit at all. I am currently sticking to a regime of physio and pain meds and am shortly going to the UK to have physio at the Hypermobiltiy clinic in London. The only doctor I trust in this area is Professor Graham at Guys Hospital. He has been researching hypermobility for years. Good luck and keep smiling. Lucy

By Sjottie on Monday, July 23, 2001 - 02:02 pm:

Hi,

I'm 35 and I too have problems all over my body. When I first found out something was really wrong with my body, it was as if the pain travelled through my body. After being (mis)diagnosed here in The Netherlands, I went to Prof. Grahame last March. My feelings towards trusting other doctors are the same as Lucy's. My physio at the HMS-clinic in London will take place this week. The two sessions will be taped for my pt at home, so he can start the treatment.
Take care!!

By Silvia on Tuesday, July 24, 2001 - 03:48 pm:

Hi,

I just wanted to thank everybody for their responses. Even though I don't wish this on anybody, now I don't feel so alone with this condition as I did before. I just had my third Prolotherapy treatment yesterday and won't see the results of it for a while. But after the first 2 treatments I had I felt much better. I'm still in pain though but not as bad as before. I'm hoping to start some type of physical therapy soon. I had stopped doing this prior to prolotherapy because the pain was so bad that I coulnd't participate in
physical therapy. But now that I'm better I really want to get back into it to strenghten my muscles.

Also, I was told I have benign congenital hypermobility. Therefore, I don't know if this is the same as EDS3. I asked my doctor if I had EDS but he said I didn't, he said I had BCH.

By Tracy on Monday, October 15, 2001 - 12:03 pm:

Hi My name is Tracy I am 34 and I have HMS in all my joints and have suffered in cronic pain for most of my life I have been to so many Specialists that I have given up on anything helping I seem to be in pain most days get very depressed I have a Great family who help me 24/7 as there are alot of things I cannot do sometimes, walking seems to be the most difficult and painfull. I feel that It is mostly in my head because no one could be in so much pain all the time I am on Painkillers and Imflamation Tablets I find Heat pads and hot baths can help but this is not a long term solution I wish you all the best and hope for some cure for the Future so maybe our children don't have to suffer the same. Maybe if Doctor's took this illness more seriously we may get better results here's to the future.

By Mei on Monday, October 15, 2001 - 01:07 pm:

Hi Silvia, welcome to the battle of the lables. let me introduce to you, Hypermobility Syndrome (HMS) Benign Joint Hypermobility Syndrome (BJHS) Familial Hypermobility Syndrome (FHS) and Benign Congenital Hypermobility (BCH). These are all one and the same condition. Most doctors actually agree on this. Then there is EDSIII, there's the rub, some 'experts' say it IS the same as HMS etc. some 'experts' say it is NOT the same as HMS. I can tell you only this. Joint problems can be the same in EDS III and HMS etc. The difference depends on skin involvement. (NB, I am talking about EDS III, not the other types of EDS which can be way more severe as they involve other parts of the body)

By Kathie on Thursday, October 18, 2001 - 02:16 pm:

Btw - BCH stands for Benign Congenital Hypotonia - although this is associated with HMS/HEDS and a number of children diagnosed with BCH may subsequently be diagnosed as having HMS/HEDS it can also be a precursor for other more serious disorders.

Natasha Brown (who often posts on here) runs the UK BCH group - so maybe she can elaborate!?

By Mei on Thursday, October 18, 2001 - 02:31 pm:

Great, doctors using wrong abbreviations...

By candice on Wednesday, May 21, 2003 - 01:16 pm:

i too was told my joint pain was due to ehler's-danlos, but i'm confused (i'm 17). what type do i have? i have a lot of hypermobility with a congenital hip malformation and scarring but no loose skin...what type is that????

By Hamfist on Wednesday, May 21, 2003 - 04:27 pm:

Candice

Here is an extract:
TYPE VII - ARTHROCHALASIS MULTIPLEX CONGENITA - Autosomal Dominant/Recessive
Soft skin with relatively normal scarring, marked joint hypermobility, marked hypotonia, congenital hip dislocation, short stature. Part of one or other of the collagen genes has been shown to be faulty in five different Type VII families.

If you want to contact me feel free to do so - Ian (mercedes_nz@yahoo.com)