Dear "Ain't So Bad" & other readers,

My seven months of CRPS can't hold a candle to those of you who have been struggling for many years. What an awful disease! But I have already learned that "aggressive" isn't always good.

My CRPS surfaced 3 months after knee reconstruction surgery. I'd already been in PT for a month, gritting my teeth through the necessary pain, and the patella was healing properly. Then things started to go haywire. Who knows why the CRPS popped up when it did? The PT & I didn't know what was happening. Exercises that had worked before were now creating more - and displaced - inflammation & pain. I'd always looked forward to the post-workout icing, but now it caused a painful sensation. I agreed to the PT's request to try 2 sessions of deep muscle massage, but that resulted in increased inflammation, & even widened the area of pain. She called the orthopedist & we put everything on hold until some tests could be done.

Two sympathetic nerve blocks positively diagnosed CRPS/RSD. I received an injection of cortisone, which gave me 2 pain-free weeks. When it wore off the pain was back, and the CRPS had spread about 4 inches higher ... to the site where the needle had been inserted!

But back to PT anyway, because the mantra really is "keep on moving." This time it was hydrotherapy, for which I still go 3x/week. It's an effective & soothing way to exercise the muscles. Oh, and no more ice. Check this out:
CRPS/RSDS PATIENTS SHOULD NOT BE TREATED WITH ICE. NOT EVER!
NOT ICE, NOT HOLD/COLD THERAPY, NOTHING DEALING WITH ICE AND THE AFFECTED CRPS/RSDS AREA.
NEVER.
EVER.
IT CAN MAKE THE CRPS/RSDS WORSEN AND/OR SPREAD.
THIS IS EXTREMELY IMPORTANT TO KNOW AND TO SHARE WITH YOUR PHYSICAL THERAPIST.
Ice will only cause the blood vessels to shrink more, reducing the blood flow to the extremities and increasing the pain. Patients can actually have their CRPS/RSDS go into the next stage from repeated application of ice packs.
Please let your Physical Therapist know this, for your sake and others.
For the medical reasoning behind this, please follow this link for one of the better explanations;
rsdhope.org

At this point I will share that I am 59 and also have Parkinson's. Even before being diagnosed with PD 11 yrs ago, I was an advocate of yoga & stretching. When the CRPS surfaced I was already very limber, and it's the one type of exercise I have continued to practice consistently at home. It's all gain and no pain. For me, hydrotherapy and gentle stretching several times a day are far more useful than any aggressive modalities. (I do use an exercise bike)

The "less is more" also applies to massage. Deep muscle massage exacerbates CRPS. Instead, my massage therapist gently works the the non-affected parts of my body, and does reiki on the affected areas (an energy modality where her hands hover just above my skin.) So far it's helping to prevent cramping & to maintain good blood circulation without aggravating the hot spots.

My take on exercise and PD & CRPS is that you can work your muscles without beating yourself up. Yoga is both prevention & intervention for cramping muscles. Focused breathing helps control pain ("helps," not erases), and also assists in relaxation. It's helped me through my Parkinson's. I can only hope it will also minimize the progression of the CRPS ... or dare I hope, halt it.

If you want to try but don't know where to begin, just buy a stretching DVDs & pop it in your TV. (The "stretch" is more impt than particular yoga poses). Some DVDs are better than others - I hesitate to recommend - and you may have to try a few to find the right fit for you. But by all means, do try this mind/body approach!

Bari