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How do you stop the pain of Ehlers-Danlos Syndrome Hypermobile type?

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2011-01-07 19:36:17

Answer

The 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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