By Laura on Saturday, July 01, 2000 - 03:13 am:

Hi I am 23 years old with hybermobility in most of my joints. Day to day the pain is now bearable as I have grown to except it. THe clicking is becoming less embarrasing. I havce never spoken to anyone with the same condition. I don't know what to expect fromt he future.I have been bad for about 8 years now, has anyone found relief,changes? My doctor tells me I have to live on painkillers which I refuse to do, there is no other cure/remedy. Has anyone any suggestions? I would loveto hear from you.

By Andrea on Tuesday, July 04, 2000 - 05:51 pm:

Dear Laura

Yes, stay away from painkillers. Good decision. Have you ever asked around who has already wrecked their stomach with them?! And no, there is no cure or remedy, but that does not mean you cannot heal. Have you tried massage? Jacuzzi? Or just a warm bath? Have you tried gentle exercise? Swimming? A walk in the fresh air? Or listening to music? The net can provide you with a lot of information, and it looks as if your doctor could do with some of it as well. I did that with mine and he immediately stopped suggesting more anti-inflammaories.

Take care - Andrea

By Bianca on Wednesday, July 05, 2000 - 05:20 am:

Some word to painkillers.
You have to be careful with painkillers of course but I think it is not necessary to keep really off of them, because some times they can give you also some good live quality.
But I find it is very important to have some knowledge about:
1.) Stomach wrecking are so called NSARs like Aspirin, Ibuprofen, Naproxen, Indometacid, Diclofenac, Voltaren... The stomach problems can be prevented when you take Zantic, Antra or Tagamet with them. Our problem is that most of us are young and our doctors don't think that NSARs also destroy the stomach of young people. More rare and only after a few years of intake they can dammage your kidneys.
2.)Not stomach wrecking are the new Cox2-Inhibitors: Celebrex and Vioxx. You can use them good. But they are said to be not as good on painkilling than NSARs. I for myself must say that they kill my pain better than NSARs. They also can make dammage to your kidneys after a certain time. This is also seldom but it can happen.
3.)Also not Stomach wrecking are Opiats like Tramal (Tramadol), Ultram, Temgesic, Fentanyl or Morphine. They normally obstipate and sometimes make dizzy and/or sick (because they may affect the sickness center of the brain). They have a very good effect on HMS pain, although they have no anti- inflammatory component (They block the pain center in the brain). They don't dammage kidneys. But sometimes they are very hard to get because most of us are young and our doctors are afraid about dependency and other old myths connecting to Opiats.

By Gwen on Wednesday, July 05, 2000 - 01:42 pm:

Further to what Bianca has written, I'd like to comment that what she calls NSARs are also known as NSAIDs. Many doctors prescribe them ad lib for joint pains but they are intended primarily for inflammatory conditions and very few of us have pain caused by inflammation unless we have recently injured a joint. That chronic, baseline ache we have isn't inflammation. NSAIDs can create havoc with your insides, especially as so many of us "hypers" also have irritable bowel.
The Cox2 Inhibitors were hailed as they great breakthrough in painkillers because they don't act on the Cox1s which control gastric action but there are restrictions on their usage. Particularly they cannot be used if you are allergic to the sulfa group of drugs or have allergies to certain other things (a whole long list) Anecdotally, they don't appear to control pain so well but I guess may work better for some people than others.
For years doctors worried about the addictive potential of opioids but studies indicate that the chance of addiction is very small when they are used for pain control. A relatively new opioid (available in US since 1996) is Oxycontin which has the merit that it only needs to be taken every twelve hours. I don't know of anyone who takes it so would be very interested to hear of experiences with it.
A drug to watch out for is Ziconotide which is currently in the third stage of being trialled. It is an artificial analogue of sea snail venom and works specifically on the bodies pain receptors. Because its action is so specific there are said to be no side effects.

By corkie on Monday, April 26, 2004 - 07:08 pm:

My daughter has been deeling with this pain for several years now she is now six. only recently has anyone mentioned hypermobility. She has had every test you can imagine and it seems like when they ran out of tests they called it hypermobility. She continues to get worse. DOES ANYONE KNOW OF ANYONE WHO HAS OUTGROWN THIS?? Dr.s don't say either way.
Thank you
corkie