CRPS/RSD is not well understood, is frequently mis-diagnosed, and has no clear guidelines for its treatment.  A bad triad!  Wendy K., a physician-reader, recently wrote in to present what treatments work for her.  (As always when I write about treatments, please discuss any that interest you with your treatment team before making any changes.)  Wendy writes:

In response to your request, the conservative treatment protocol I’m using for RSD/CRPS is as follows:

1. Trigger point and myofascial release

I work with a physical therapist or massage therapist 3-4 times a week for this treatment.  There is also a self-care protocol, coming out in print in the near future, written by one of the masters of trigger point therapy (Simons).  Right now the best self-care book is the Trigger Point Handbook.  The ultimate (and invaluable) reference is Travell and Simons’ Myofascial Pain and Dysfunction: The Trigger Point Manual.

2. Biofeedback or meditation or pranayama (yogic) breathing

These slow my breathing, which stimulates the baroreceptors on the heart to increase parasympathetic activity (a calming nerve system).

3. Psychotherapy and/or a support group

This helps me to cope with the pain and the changes it brings to my life.

4. Medication

I prefer as-needed pain medication.  Sleep meds are usually necessary too.  I have had a lot of success with topicals (creams put directly on my skin), some of which I have made myself.  There are now some custom pharmacies which compound some of the same creams.

5. Exercise

I do both both cardiovascular (which increases circulation) and strength training.  I found personal trainers to be of more help than physical therapists.  It’s very important to begin slowly and go up in very small increments.  It hurts, but so does atrophy.

6. Massage therapy

As physical function returns, different muscles will be recruited and can be sore and overworked.  This is also very useful for skin desensitization.

7. Cranio-sacral therapy

Sometimes the primary injury site has scar tissue formation which is causing or contributing to the RSD.  Cranio-sacral therapists (usually PT’s) are good at releasing adhesions.  This should not be painful.

8. Good nutrition and hydration

9. Other alternative treatments

In my particular situation, chiropractic care was vital.  Acupuncture helped as a last resort, but the cost to my body is higher, because of the increased response of the RSD nervous system to invasion.

It has taken me 3 years to figure all this out, but it seems to be working for me, and has worked for others.  I think only certain patients can comply with this regimen – it takes tenacity, the urge to move, and some understanding of physiology.  However, I believe that this protocol should be available as a first-line tool for RSD patients, before they are injected, have hardware installed, or are put in a coma.

I really appreciate Wendy sharing what has helped her.  For most people, using multiple treatments is the way to go.  However, you don’t need to be overwhelmed by this long list.  I suggest people try 1 things at a time, and keep only those treatments which help.  A positive way to look at this list is that there are LOTS of things which may help.

Interested in sharing what has helped you?  Let me know here.   Also, please send in your submissions for the How to Cope with Pain December Pain-Blog Carnival by Friday, 12/26.  The topic is: Looking Back on 2008 on the Last Day of the Year.