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Answered 2011-01-07 19:36:17
AnswerThe most effective medication that I have used is buprinorphene/piroxicam/naloxone compounded by a specialty pharmacy and prescribed by my physician.

You'll get a different answer to this question from everyone you ask. Pain Management is a complex field in medicine, using techniques and drugs from a variety of disciplines.

First, though, it is really important to be in a regular program of exercise and myofascial treatment. You may accomplish this through physical therapy, massage, chiropractic, exercise classes, personal training, etc. Your myofascial therapist (PT, massage, chiropractic) will help reduce any subluxations/dislocations that occur, identify muscles that need to be strengthened to stabilize your joints, and provide heat therapy, ultrasound therapy, cryotherapy, electric stimulation, or other methods to reduce pain.

Second, a specialist in pain management can help manage your overall treatment plan, particularly with medications, injection therapies, and other new treatment modalities. Prolotherapy is fairly commonly recommended in pain management circles for hypermobile joints; I had a really bad experience with prolo, but there are many others who have been helped significantly by it. Expect a pain management specialist to require you to sign a contract before receiving a prescription for any narcotic pain medications. Also expect a pain management specialist to recommend medications from anti-depressant and anti-convulsant families, as these can work directly on the nervous system to change your perceptions of chronic pain.

In all honesty, nothing will ever stop the chronic pain that results from joint hypermobility related to EDS. I'm currently on an amazing regimen that takes my baseline chronic pain level from an everyday 6 out of 10 to about 2 out of 10. In the last couple months, I have even experienced times when I've felt no pain at all. The acute subluxations/strains/sprains/whatever still hurt, and at the same levels as before, but it's a lot easier to live with these now than it was before.

I also recommend spending time on diaphragmatic-breathing and relaxation methods (especially relaxation CDs/MP3s), because these are things you can do for yourself when things are really bad.

Don't give up hope. You will grieve, and you will be angry, and you will be frustrated. You will tick off the people around you. You will be ticked off with your own body. But you are not alone, and there are ways to feel better. I promise.

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