By john b. on Monday, June 05, 2000 - 05:38 pm:

My wife has ehlers and she also has nerve damage in her lower legs and feet which makes it hard to walk. I would like to know if anyone els has these same
problems. The doctors tell us the nerve damage is not related to ehlers but I am not so sure about that. I still think there may be a connection somewhere. Please
help.

By Sue C. on Monday, June 05, 2000 - 05:38 pm:

Has she tried anything physical to relieve the problem -- i.e. exercise, physical therapy, chiropractor, massage, laying on the floor and stretching until the joints
re-align?

By Stefan Back on Monday, June 05, 2000 - 05:39 pm:

Yes, I have these problems due to hypermobility (Ehlers-Danlos syndrome, hypermobility type) of the mid-back and the lower back. The nerves get stretched
and/or pinched every day in the back, and the symptoms are not back pain but abdominal pain and lower leg pain. My uncle and mother have also pain in the lower
legs.

Note that nothing is wrong with our legs. It’s a back problem due to EDS.

Stefan

By Jen on Monday, June 05, 2000 - 05:39 pm:

I also have pain in my legs due to hypermobility of the spine. When a nerve is pinched it's agony but then the spine will "click" back into place which is absolute bliss!

By Robyn on Monday, June 05, 2000 - 05:40 pm:

Hi... I have EDS type III and I can tell you that because of the hypermobility in my hip joints, the nerves seem to stretch and cause pain. I suppose, in you wife's
case, because of her loose joints, there could be nerve damage.
I do know that EDS can be disabling at times to those of us who were unfortunate enough to be born with it.

By Lucy on Wednesday, August 09, 2000 - 06:04 am:

I have started to lose sensation in my legs and forearms. My legs and hands also have a tendency to swell up like balloons. I have EDS Type III and am having horrible problems with my SI joint, hips and ribs. MRI scans on both my brain and back have shown nothing. Does anyone know how this nerve damage occurs?

By Patrina on Monday, August 21, 2000 - 10:37 am:

Really long, sorry. To John B., your wife may have sciatica. Pressure on nerves in the lumbar region of the back causes it. Can be due to a herniated disc, tight muscles due to repeated strain, myofascial problems (that's a whole other story). I also have sciatica (no big surprise) and when it's flaring up, I get tingling, numbness, etc. in rear & legs. Loss of sensation or odd sensations can be caused by pressure on nerves by muscles, arthritis, etc. In my case, it's often from inflammation due to repetitive stress (have had surgery on one wrist to relieve carpal tunnel pressure). To Lucy with the swelling, you need to have your doctor diagnose & treat the swelling; that will help relieve the loss of sensation. There are probably other factors also involved. But my sister had surgery for carpal tunnel syndrome, which later was discovered to have been caused by a medication which made her body retain water, which put pressure on the involved nerve. I just found out about hypermobility/EDS last night from a link on a fibromyalgia support message board. I've had this all my life; never knew what it was. Went through years of trying to run, bicycle, etc. and re-injuring my knees which are now very bad. I've had arthroscopic surgery twice on my right knee & now my left knee is locking-up and buckling & am guessing surgery may be coming-up there.

By Julie on Wednesday, October 18, 2000 - 02:54 pm:

I am 34 and have hypermobile joints but no diagnosis of EDS. I also suffer from nerve pains in the left leg and foot. my SI joint, lower back and left hip joints also give pain, but only on the left side. I find a tens machine helpful for the nerve pain and also hydrotherapy. My physio has tried several treatments, with the most effective being deep tissue manipulation which can provide some relief. Can anyone tell me who has been the best consultant to approach in the diagnosis and treatment/support of hypermobility syndrome and EDS? My son Lee who is now 10 has also suffered from these same problems since he could walk. He was diagnosed with hypermobility syndrome when he was 5, but has had little support with his pain management or support from the education authority. He finds school particularly difficult to deal with when he is in pain. However I am so proud of him today as he has just swam 25 yards even though he had pain. Any thoughts would be welcome as we are both just fishing in the dark!

By Emma on Thursday, October 19, 2000 - 12:10 am:

Julie, you havent said where you are from, I am gathering you are in the UK? Please let me know?

By Julie on Friday, October 20, 2000 - 02:51 pm:

Hello Emma, I am from the Scottish Borders, and live exactly on the border between England and Scotland. We live a bit in the wilds when it comes to decent hospital and G.P. services. Thank goodness for the internet! At last we seem to have something in common with many other people around the world.

By Kathie on Thursday, October 26, 2000 - 09:00 am:

Julie, there is a list of UK hypermobility clinics on the hypermobility site (www.hypermobility.org/clinics.htm/) Right at the bottom of that page you'll find details of a Hypermobility Clinic in Glasgow. You need to get a referral from your GP and you should have certain negative blood tests (details are on the page) to rule out other problems first.

By Emma on Thursday, October 26, 2000 - 12:38 pm:

Julie
Sorry for not replying straight away, my reason for asking you were you are from, was to recommend the above website run by people with our condition. Since finding the website, I am feeling better n know ing there are others out there and I am not alone, (not that I wish this on other people) but it is a relief to know you are not alone.

Do not put up with unbelieving doctors, OR unbelieving relatives/friends (they are the most hurtful). Push this information in front of them, make them understand you. You deserve the correct help and understanding from all of those around you, and by educating our GP's we help other people with it to be diagnosed earlier!!!

I hope you stay well, and keep positive.
Em

By Julie on Friday, October 27, 2000 - 12:35 pm:

Thank-you Kathie and Emma, I will follow up the website and your words of wisdom. I find the more I can do to help myself and Lee, the more positive I feel to getting some support with all of this.