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