By Brittannia on Wednesday, September 13, 2000 - 07:31 am:

My 10 year old will soon be seen by an
orthopeadic surgeon...next February for
assessment as to whether on not he has
EDS. For the last 3 weeks he has had (off and
on) chronic pain around his kidney's. They
suspected a kidney stone but found only an
infection in the urine with slight protein
content. He came home after ultrasounds and
x-rays found nothing. He is still in moderate to
mild pain and on strong pain killers. I
suspected he had appendicitis because of the
location that the pain is now in. He has no
temperature, little nausea, pain on pressure
over the site and his food and liquid intake
has decreased. The doctors have just been
shaking their heads and have again sent us
home with the possibility that it could all be
related to his EDS! This does not comfort me
because I will probably miss a REAL episode
of appendicitis, thinking it is just his muscles
and bones aching again. Has anyone had a
similar experience? Lower right side
abdominal pain that comes and goes but
never completely?

By jane grant on Wednesday, September 27, 2000 - 10:43 am:

I am 49 years old & recently diagnosed with HMS but I have been having stomach problems for years: 1st a hernia age 12, then a volvulus (usually only seen in dogs!!!) which nearly killed me 13 years ago,now 2 hernias & pain which they say is not due to the hernias!!!?????? Apart from the pain in all major joints & my back,osteoarthritis & fibromyalgia. Im a lone parent & desperate please give me some info if you can wherever you are.Im in UK thanks Jane

By Patty on Sunday, October 01, 2000 - 10:27 pm:

Brittannia, I have had pain over my kidney areas for years and my EDS son and daughter both have that same pain. My daughter's was bad recently so the doc did ultrasound and labs showed nothing. We had an episode several years ago where she had all kinds of tests and we got the distinct impression that the doc felt she was just hypochondriac. That was pre-EDS-knowledge for us. We dropped that doc after she missed a case of typoid in my daughter (we live in the thrid world). We have now decided that that whole episode was related to EDS. It did resolve spontaneously. I know how you feel about it: pretty helpless! We have to just pray for wisdom in times like this and stay alert.
I wish you and your son the best.

By Jolie Frey on Saturday, January 13, 2001 - 06:02 pm:

My daughter was just diagnosed as possible hypermobility and has had terrible abdominal cramping over the last six months. She seem to become impacted everytime and we have to clean her system out with laxatives. The doctor doesn't know if this is connected or not. I've been searching to find out if it can be. Good luck! She has missed a week of school evrey month since school has started.

By Patty on Wednesday, January 17, 2001 - 04:52 pm:

Yes! All of us in our family that have EDS have intestinal problems. We all have rectal fissures that open and bleed for no good reason. Most of us have constipation and one cousin had it to the point that the colon stopped working all together so the doctors just removed the whole thing! I am convinced constipation is the reason my EDS grandfather had colon cancer and died at 78 years of age (he was still farming a year before). I find that taking psyllium husks every day keeps me moving and free of problems. She may need to adjust the amount. Don't know where you live, but on the West Coast of the US we have a store called Trader Joe's that carries their own brand of plain unsweetened psyllium for just $5.00 a big container! Much less than Metamucil or other name brands. I believe the Canadian Ehlers-Danlos Association board has an article posted on it, too.

By lucy on Thursday, February 22, 2001 - 06:36 pm:

Hi there,

I don't know if this helps, but I too have had terrible pain over my kidneys and abdominal area. It transpired that this was due to muscle spasming because the joins between the tendons and bone are so stressed. It can feel alot like appendicitis (that was my doctors first guess!) or kidney pain because the pain is so deep. I take painkillers and, most importantly, muscle relaxants.

Good luck - just wanted to throw in my two cents.