Does anyone else have Ehlers-Danlos Syndrome? What do you do for the pain once Vicodin no longer helps?

Ehlers-Danlos Syndrome (EDS) (also known as "Cutis hyperelastica") is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). Connective tissue helps support the skin, muscles, ligaments and organs of the body. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no known cure. Treatment is supportive.

Pain relief if it is narcotics your on and Vicodin does NOT work there are still a few meds you could try before being placed on the big guns like Morphine and Diluadid and Fenantyl. These includre; Burprenorphine Patches that are Slow release 1 patch per week giving 10,20 or 30mcg/ per hour release, these are usually the least addictive or the high end Opiates. They are stronger than Methadone and usually used to get people off Opiates but are used for pain relief, I would suggest trying this before you move onto Oxycontin.

Lets face it pills are annoying at times, I would also use Deep Heat because this is affective for musclular pains. It is a gel and it is avaliable without prescription.

I used to use Buprenorphine 20mcg/per hour patches, but here in the UK London, Dr's are unsympathetic towards chronic pain patients and this never worked for me personally but it does for many people, my Dr refuses to give me stronger pain killers citing my age as an excuse im 24 on the 18th of this month. Plus Hydorocodone (Vicodin/ Lortab) is NEVER used in the UK.

Suzan, I don't have that syndrome, but if you wouldn't mind telling me a little more about the kind of pain you have, I might be able to give you some relief if it is in the muscles that you feel most of the pain. While I can't gurantee it, I can only tell you that if you feel you want to try something that isn't tied in with drugs and you can do yourself, I would be glad to pass along anything I can to help.

Narcotics are all basically the same. Once you build a tolerance to one, you end up having to go to something stronger and eventually you have to do it over and over. It is a terrible situation to be in.