By Mona on Sunday, September 24, 2000 - 02:35 pm:

Please, can you list web sites that I can go to find more information. Also if you know treatments, and medications used, it would be really appreciated! THANK-YOU!!!!

By Kathie on Monday, September 25, 2000 - 12:21 pm:

Try http://www.hypermobility.org/links.htm

By Lin on Sunday, December 03, 2000 - 08:47 am:

actualy, i just finished a project on hypermobility for anatomy and physiology class, email me, maybe i can help you. lin_171@hotmail.com
Lin

By Johanna on Friday, December 08, 2000 - 01:41 pm:

Lin, would you mind sharing your findings, I am very curious...

By Lin on Saturday, December 09, 2000 - 11:49 am:

i dont always have time to check the board, could you e-mail me? i did my project for my a&p high school class, and presented it to the class, so my project would not be as detailed as yours would be, but i can still give you all the links to the sites i used and help you out there, or help you understand hypermobility, since i have it myself. please e-mail me, Lin_171@hotmail.com
Lin

By Barbara on Sunday, January 14, 2001 - 05:05 pm:

Also try:

EDS Today http://www.uggen.net/edstoday and

http://www.egroups.com/links/dahrt/ and click on the Ehlers Danlos Syndrome folder.

By larry on Thursday, January 25, 2001 - 06:13 pm:

You might try:
WWW.Ehlers-Danlos National Foundation.com

I get lots of support and information from them.

By larry on Friday, January 26, 2001 - 11:31 am:

Sorry, I typed the wrong suffix on my last message. The correct suffix is .org.

You can just type www.ednf.org according to the last newsletter.

By Anne on Sunday, June 24, 2001 - 09:17 am:

In addition to the typical anti-inflammatories, muscle relaxants, and pain medications; my orthopedist has prescribed Trazedone. While it is primarily an antidepressant, he uses it for it's sedative effect, as a sleep-aid. It does not interfere with REM sleep, like most sleep aids do (and most cannot be used long-term, for that very reason). He believes that one of the best ways to decrease pain, or at least to make it tolerable, is to assure a sound night's sleep.

By Mickey on Sunday, June 24, 2001 - 02:55 pm:

hi all,
My doc has also put me on something similar. Its 'normal' use is as a anti'deppresant, but it is also used for long term pain treatment and to help get good rem sleep which is essential if a person is to cope with pain. With good rem sleep the body can produce more natural endorphines thus reducing pain.I take proathedine.
Mickey

By Emma Coulson on Friday, September 21, 2001 - 10:43 am:

My rheumatologist put me on 10mg of Amitriptyline a day - also an anti-depressant to relax my muscles and avoid them going onto spasm. Unfortunately the side effects meant that I found it extremely difficult to get up in the morning, and was drowsy all day. The dosage was then reduced to 10mg every other day - but the side effects were still greater than the benefit. The benefit was slightly less pain, and a general feeling of being more relaxed.
I was also given hyrocortisone injections into my hip and neck where the joints were most tender.
Currently I have no pain medication, and just stretch every morning, and exercise to build muscle - when I can be bothered.
I found this website and LOADS of others (including medical journals & reports) by typing HYPERMOBILITY SYNDROME to www.google.com.

By Laura on Friday, November 30, 2001 - 08:43 pm:

I am very new to HMS. My daughter from the time she was 2 1/2 years old had unexplained pain. She just turned 7 and was diagnosed with HMS.. I do not know much about it and was hoping you here could e-mail me information especially on pain management. She has severe pain most of the time. I do not have access to the computer for personal use however i can get e-mail at WWW.nahhinc@cs.com. I cannot stay to chat so please e-mail me. Laura a very desperate parent.
Thank you!

By Anne Marie Ritchie on Monday, January 07, 2002 - 03:20 pm:

For approx 16yrs I have suffered unexplained pain,
recently I was refered to hospital for tests, they
have diagnosed HMS, I am now getting physio twice a week in hospital, I have been given 50mg of Diclofenac 4 times daily, 30mg of dihdrocodine 1-2
2-3 times daily, 2mg of Diazepam 1 when required.
I feel numb, is there any pain management programme you can suggest, rather than all of this medication, extremely desperate 32yrs mother
of two young children.
Thank you

By Pat on Tuesday, January 15, 2002 - 04:03 pm:

Anne Marie, I was told "I don't know what you have. It isn't arthritis. Go see a neurologist." I had been on a lot of different anti-inflamatory medications. It was finally an orthopod who diagnosed me and put me on Tramadol (Ultram). I am fortunate to be able to use just 50 mg some days and lesser OTC stuff the other days. Occassionally I need more and it seems to come in clumps - I'll need more for several days or a couple of weeks and then I can go for a while with OTCs.

No drug is good for the liver - they are all liver toxic so I try to take the least possible. I keep going back to my grandfather. His children's most prominent memory was the pain he suffered. Yet he went to work every day, built their home, etc., with no pain killer as we know them today. I remember his huge vegie garden and all the fruit trees. I postulated that it was all that fresh produce grown in his back yard that made the pain tolerable for him. Since we have tried eating mostly fresh fruit and vegies and NO meat, eggs, fish, etc., my pain has diminished significantly. We'll see how long it lasts!
I raised three kids (two with EDS), lots of pain and no diagnosis. There were times I could hardly walk. I DO understand! I found that the anti-inflamatories helped for the first couple of weeks and then I had less pain without them. We do not normally have inflamation. We have Pain. That is what needs treatment.
Good luck.