By tonydoney on Monday, January 21, 2002 - 11:36 am:

I cannot accept that there is no immediate treatment that can be given to a young person affected by this cruel condition. I find it hard to believe that a woman as young as 15 is left to battle this alone with NO help from any specialist body.I am not fully conversant with the disease, for I suffer from Arthritis, equally as cruel but in a differing way. I need help from anyone who can point me the right way to get specialist help with this.

By Gwen Nelson on Tuesday, January 22, 2002 - 06:21 pm:

Different things seem to work for different people. From a diagnostic viewpoint I have received most help from rheumatologists. The most successful treatments I have had has been from a musculo-skeletal specialist and from a naturopath.

Because I have irritable bowel and some drug allergies I cannot use Cerebrex or Vioxx and Tramadol is like swallowing sweets for all the effect it has. I take Paradex (Digesic) which is an opioid combined with paracetamol and have found this the best painkiller for me even though it only lasts for about 3-4hrs. I also have a TENS machine which is good at targetiing specific areas. I recently tore my rotator cuff pushing open a sliding door and find TENS useful for injuries like this. I also rely a lot on heat packs.
I find it is important to listen to my body. If it has had enough or the level of pain is too high I phone in sick and go to bed for 24 hours. Some people find exercise beneficial. I don't. Can't jog as it jars my ankles and knees, resistance training is too hard on elbows, wrists and shoulders and I ache when in water any colder than a bath which tends to eliminate swimming. I find I'm best just doing my normal daily activities, not pushing myself too much and keeping my weight at correct level for my height. Another thing I have become very aware of is using both sides of my body equally. If I'm vacuuming or sweeping I swap hands and position in which I stand to use muscles on both sides of my body, same when walking the dog, switch sides.

When I sleep I'm sandbagged into place with pillows supporting my knees, back and upper arm. I also have a buckwheat pillow for head and neck, one of the best investments I ever made.

By Silvia on Wednesday, January 30, 2002 - 05:55 am:

I think Gwen has made very good suggestions. I have have hypermobility syndrome and understand when you say that we can be left to battle this alone. I ended up seeing over 20 doctors/specialists until I found one that has given me pain relief and hope. The pain relief has come from a treatment I'm doing known as prolotherapy. If you would like to learn more about it check out:

http://www.prolotherapy.com
http://www.caringmedical.com
http://www.prolonews.com

You can also just do a search on it on the internet. There's a lot of info about it out there.

I did a lot of research prior to getting it done and I also bought a book about prolotherapy. The book is titled "Prolo your back pain away" by Dr. Ross Hauser. He also has one titled "Prolo your pain away" which describes different types of pain. I bought the back book since it's the area I was having the most problems with. I got mine through the internet at www.amazon.com

This book was very helpful and it explains the procedure very well.

Besides this I use a heating pad, and take very hot baths/showers for pain relief. I've done physical therapy in the past but it really hasn't helped with the pain, however I do believe it's important to maintain good muscle strength.

I used to take Oxycontin and then Ultram for pain relief but have decided to stop taking it. I also suffer from a condition known as myoclonus. This causes my muscles in my body to twitch and spasm. In addition to this I also have palatal myoclonus which causes the roof of my mouth to spasm and tremble 24 hours a day non-stop. I believe I got this from the pain medications, which are narcotics. I found out these can cause this and therefore have decided to stop taking them. But thank God that now with the prolotherapy I hardly have a need for them. I'm still in pain but not as bad as before.

hope this helps
Silvia

By Kim on Saturday, March 16, 2002 - 11:39 am:

tonydoney,
I understand the frustation you are going through. I was diagnosed with Ehlers Danlos syndrome type three at just about your age sixteen years ago. My joints dislocate anywhere anytime. My search for answers and help has been long and frustrating and sometimes the answers just werent there.I found a Dr. that I could trust and felt comfortable with and I followed my gut when it came to procedures or drugs. They will want to test you and poke and prod you if you let them. I am in a test case study for my disease along with my children and siblings. Mine is a hereditary autoimmune which they can trace. I figure knowing is better than not knowing. Anything you can do to prevent problems is the way I deal with my illness. I treat symptoms as they arise, but take precautions so they dont. You dont stop living your life you just learn a different way. Keep an open mind and when your body tells you something, listen... Best, Kim

By Kim on Saturday, March 16, 2002 - 11:53 am:

tonydoney,
A little P.S. some of the best Drs. to deal with your issues will be found at Mass. General in Boston. Dr. Simon Helfgott rheumotology clinic is the best.He sees young people with these diseases all the time. He also, along with the entire hospital treat you as a human being and will do anything they can for you. Surgeons, Dermotology, Rheumotology everthing under one roof. Some of the best minds in the country teach there. Good luck, Kim

By Rachael on Thursday, February 13, 2003 - 09:51 am:

tonydoney,
I understand completely what you are going through. I was told when I was 11 years old that I had arthritis. Well come to find out the only reason they told me that was because they had no clue what was really wrong with me. Now I'm 16 and 3 days ago I went to a wonderful doctor and found out it was Benign Hyper Mobility Syndrome. Mine is a alittle different though. Instead of reducing elasticity it increases. Well I just wanted you to know that you defintely aren't alone. Rachael

By Bex on Sunday, May 04, 2003 - 01:25 pm:

hey Rachael,

i'm the 15 year old girl tonydoney was talking about, only i'm 17 now! I also have BHMS, and was officially diagnosed when i was 15, but i'd been suffering for a few years before that.

(Tony, who wrote the first message suffers with rhumatoid arthritis.... so, i have increased joint flexibility, and he has less.... we're quite the site to see walking down the road together!!)

thank you so much to everyone else who has posted messages in response to the first message, your input is very much welcomed!

well, i would love to chat to you Rachael over email, i've included my email address so send me an email if you want to talk to someone, or just chat you know?

love Bex xx