By Hilary on Friday, June 02, 2000 - 01:09 pm:

Does anyone else have a pelvis and sacro-illiac joint like mine? It clunks and clicks all the time with my whole body being out of allignement when the pelvis is not
straight. I cannot walk, sit or lie comfortably. When the physio puts it back he is so amazed it goes back so easily but within a few hours it has clunked back again.
One can hear the noise like a bullet going off! I realise that I need to strengthen the muscles in order to hold it in place but every type of exercise puts the joint out
again. When the joint is in place the relief is wonderful but it will not stay. I have tried everything and was even thinking about sclerosing injections or sacro-illiac
joint fusion. I might add that eight years ago I had my L5/S1 disc fixed with a Graf Stabilisation. Please help as the problem is becoming worse. I also have
problems with my shoulders and knees. I really want to be able to control this problem on my own. I have seen the best consultants in the U.K. but they offer no
help. I believe there is some way that I can sort this out without relying on therapists or doctors. Are there any homeopathic or herbal remedies that may help as well
as exercise regimes?

Love to all "hypermobiles" - I know what you are going through!!

Hilary

By Greg on Friday, June 02, 2000 - 01:10 pm:

Hilary,

You are not alone with this problem. I have had some bad sacro-iliac problems for two years now. The most important thing I can tell you is DO NOT have it
adjusted or by a chiropractor who uses a lot of force because I did and it made my instability on both sides a lot worse than it had been. Acupuncture has helped me
a lot with the pain of it, but will no help to stabilize the joint. I still do it though just for the pain relief. Both of my SI's go out everytime I sit but I can now adjust
them gently by myself. Both click and crack REALLYLOUD just like yours, it's kind of embarrassing. I've been doing some physical therapy for months now to
strengthen the lower back and gluteal muscles. It has help very little. I'm having prolotherapy on my neck now, and if it works, my doctor told me it could help the SI
joints too. So that might be something to think about. SI joints are a VERY hard problem to treat since so few doctors recognize that they can cause such pain.
Good luck !

Greg

By Judy on Friday, June 02, 2000 - 01:10 pm:

To: Greg
Can you tell me the name of your doctor friend who knows that cortisone shots are not good for the hypermobile? Also, what city and part of the country has this
physician?

By Robyn on Friday, June 02, 2000 - 01:10 pm:

I also have SI problems on my left side and hip problems
on my right. It hurts to sit,stand,or lie down.I
can stand longer than any thing else. My Physical
Theapist are also amazed at how fast my SI joint goes
out. It can happen serveral times a day. I have learned
to self adjust it and when it's way out, my husband
has learned to adjust me too. It seems if I let it
stay out too long, it throws my right hip out and
that's when I'm in real trouble!!!!! I exercise on
a hugh ball that the hospital gave me and I also
have a sacrum belt that helps somewhat. My SI joint
is something I have learned to live with. Some days
or just worst than others and I can usually tell
when I need to be the most carefull. Let me know
if you find anything that really works. I don't seem
to be getting any better. Thanks, Robyn

By Charlie on Tuesday, August 01, 2000 - 08:52 am:

I share your problems and have done for the last year - greetings fellow sufferers. I have tried almost everything (even four months in an indian Yoga hospital!), only prolotherapy and joint fixation left to try I think. I know that I respond very poorly to osteopathic manipulation, which only seems to make it worse, although it helped with the rest of my neck and spine.

I'm told that Ruta Grav is a good homoeopathic remedy for strengthening ligaments and I find arnica cream, lotion or oil excellent for alleviating the bruising effects of having a hypermobile SI-joint.

I recommend Pilates, the Alexander Technique, Acupuncture, Cranio-sacral osteopathy, massage, and hydrotherapy (especially swimming pool exercises, there are some good books on this, see www.Amazon.com). Unfortunately all of these except Pilates are expensive, but definitely worthwhile.

Goodluck and let me know of any breakthroughs.

charliewillbe@bigfoot.com

By Pat G on Tuesday, January 30, 2001 - 10:29 pm:

I HAVE THE SAME SYMPTOMS AS THE REST OF YOU! ON MY LEFT SIDE, THE PAIN IS UNBEARABLE AT TIMES. there is no medication that even touches the pain. I'M ON MUSCLE RELAXERS AND ANTI INFLAMENTORY PILLS AND SEE THE CHIROPRACTOR THREE TIMES A WEEK! IF THE SYMPTOMS PERSIST I'm making an appointment with another dr for a cordizone shot. my chiropractor is trying to talk me out of it and says it's just covering up the pain and not getting rid of it naturally,he also states that [when he's done adjusting my sacro joint back into place]that my neck pain that I have is not related to my injury, and also adjust my neck, any clues as to what to take for the pain? good luck to all

By Lucy on Tuesday, February 06, 2001 - 08:51 am:

HI Pat,

Please DON'T have a cortizone injection. I have subluxing SI joints on both sides and have already been through the cortizone treatment. IT doesn't work. In fact it can cause more harm than good since cortizone breaks down connective tissue cells that are sorely needed in us hypermobiles. Secondly, don't see a chiropractor - it is bad by hypermobiles/EDS patients to be manipulated too often - this can compound the instability problem. I started to have prolotherapy treatments about 3 months ago and the instability in my SI joints is decreasing. I have had this problem for many years now and so far, it is the only thing that has helped. You can have these treatments by a Doctor of Osteopathy. The only time you should be manipulated is prior to these injections in order to make sure that the pelvis and SI joints are correctly alligned so that the solution is being injected accurately. I know how bad the pain is, but with a combination of these prolo shots and proper physio (see a physio who is certified in manual therapy and works with a ball - any other type of physio will be a waste of time - I've tried 'em all!) you WILL see improvements. Pain meds are necessary while undergoing treatment but they are only temporary.

Good luck and let me know if I can help you with any information. Lucy

By Jill on Friday, February 23, 2001 - 05:12 pm:

Hello, I can identify with some of the things that you are all saying. I am a 20 year old nursing student and always remember being very flexible. I remember being able to move my shoulder in a certain way and hear a thump and feel the head of the humerous move along with a swishy sound. I also remember lying on my side and being able to move my hip in a way that something would protrude out farther. I always thought that this was all normal and I never reported anything to my doctor. About a year and a half ago, I started to experience tremendous pain in my hips. It would come out of the blue for no apparant reason. It would be painful no matter what I was doing. I moved to California for school and saw the doctor on campus after I showed my roomate my hip ability. He diagnosed me with a condition called hyperelastosis ligamortus or something of that nature. Simple external rotation of my hip joint causes it to "pop out". By pop out I mean, you can see it on the outside of my body. Also, if I push on the front of my shoulder, it will sublux posteriorly. Also, my shoulder continuously cracks. I have pain that feels like arthritis everywhere. Some days its fine, other days it is unbearable. I try to describe it like this: the pain starts in the shoulder or hip then radiates distally to my digits. Its a dull aching pain that can be extremely intense. When I sleep, if I put my hands under my pillow, my shoulders have already subluxed, also, sleeping on my side doesn't work either. It all just feels WRONG somehow. I've been tested for rheumatoid arthritis and didn't have it, but I am taking vioxx. It helps pretty well with the pain...better than the joke of ibuprofen. I am convinced that gentle exercise will help strengthen the muscles surrounding my joints. I am considering water-related activities. I won't be doing any strokes at least at first. I think I will start with just walking and moving UNDER the water. No water aerobics or anything. I am really frustrated and sick of hearing all these doctors say completely different things. It depresses me to think that I have all these problems at the age of 20. Oh, the rheumatologist that I just went to diagnosed me with EDS/Benign hypermobility. However, I'm not sure if anyone in my family has anything like this. I asked my mother and she said that she didn't think so. I am just looking for someone who can move their joints like mine and someone to just send me their opinions about all this. PLEASE RESPOND BY SENDING ME AN EMAIL!!! Thank you all so much. Jill

By Chris M/NJ on Monday, March 22, 2004 - 07:59 pm:

Hello all, my name is Chris from NJ/Usa, I`ve studied Massage Therapy and have been suffering with the SI Joint problem which most of you sound like you also have. What I`ve found over the years to work for me at times is to simply apply firm finger pressure in the sacro Illiac area ( on the 2 dimple like holes in the middle of your lower back area to the left and right sides away from your spine ) The pressure should be held for about a minute or longer if desired.... when the finger pressure is removed I usually find the tension and pain are released in the lower back area...The relief is usually temporary, but it always seems to work for me. Also..I sometimes would use 2 tennis balls while on my back on a bed I would raise my legs and place the 2 tennis balls once again in the same 2 dimple locations on the lower back and lower my body weight gently onto each of the 2 tennis balls thereby applying pressure to the 2 dimpled areas.. within a minute or 2 I would slowly remove the tennis balls and notice my pain, pressure, and SI joint pain problem would temporarily be relieved. Please let me know if this works for anyone. Chris Marashlian/ NJ/USA