Treatments

Recently, I met up with a some other women who have CRPS just like me. It was a pretty interesting experience to hear their stories and how they have adapted and what worked to treat them. One of the things one woman told me was that the key to her treatment was hormone therapy. I thought back to a timeline of my two surgeries and had a realization.

Typically, a invasive procedure [under anesthetic or not, anything that pokes the bear] causes a flair up or can aggravate CRPS. However, after each of my two surgeries I was placed on birth control for my PCOS. The first time, when I was 14, I became so ill on the medicine after only 2 months I had to stop. Then we had mental health issues and I was placed on an anticonvulsant [among other things] which also just so happens to be a CRPS “treatment”. I’ve since stayed on it but a much lower dosage. But the important fact is that there was NO MAJOR FLAIR UP of my CRPS. Just general, severe resistance to pain meds and they were essentially ineffective on me.

During my second surgery, after another bought of ovarian cysts rupturing, I was once again put on birth control to help. I ended up having to keep trying different ones, but no flair up after surgery again. This time though, when I took a break from birth control to let my body rest, I had an unusual knee flair up that put me in braces and kept switching knees [right first them left, an obvious CRPS echo but I just kept walking on it]. After Physical therapy, a cortisone shot [that didn’t work at all, it made it worse], MRIs, X-rays, etc etc, I realized nothing was working and kept trying to work it physically. I was then put on a new birth control to see if this one would work, and magically my “knee pain, brace needs” disappeared.

So there seems to be a correlation to me. Now during this flair up, I am actively on a birth control for PCOS but it’s not working. My theory is that it is due to the fact that this was a nerve damage injury and my body has gone through so much shock that the CRPS got out of control before anything could or would help it.

One of the few treatments that has worked for me is Aqua Physical Therapy, which is apparently not covered by insurance since it is not “necessary”, despite the fact traditional PT won’t work for a CRPS case… That’s how I started to get some of my life back. Water can be a hard one because I am extremely temperature and texture sensitive, especially on the injured thigh/hip, so Vaseline and lotion are my best friends to protect my overly sensitive skin. Hell 4 minutes and 15 seconds [yes I timed it] in a hot tub gives me a “sun burn” look, even though it can feel really good [minus the bubbles].

Reflexology was my god send during this whole adventure. Something I learned and that continued to help me was my regular sessions with my Reflexologist and the use of reflexology on my feet at home multiple times during the day. This helped desensitize and increase mobility as well as stimulate all the reflexes I couldn’t use. The continuation of this was going into Lymphatic Massage. It’s as strange as it sounds. The Lymphatic system is not well understood [and no it isn’t actually green like the anatomy books show] and lies just between epidermis and dermis layers of the skin. My specialist works extremely gently on my whole body to maneuver and stimulate my lymphatic system to get back on line and reduce the blockage. One of the clear and very obvious side effects of everything in my body being off line is my edema that has barely been improved by a diuretic. Talk about annoying… Plus the two best ways to treat it and stimulate the lymph is to either jump on a mini trampoline [ya that’s a ways away…] or a boars hair body brush [which right now feels like needles and knives].

So my main focus falls to internal balance and the understanding of Qi and Qi Gong, something I was passionate about prior to this entire 7 month adventure from hell. Next week I start Ketamine infusions, a serious and seriously expensive treatment, we are hoping will kick my NDMA receptors offline and press that stupid internal reset button so I can be a human again. I guess maybe the entire reason this happened was because the universe was trying to push me in a different direction than I was headed. Qi, God, the Universe, Karma, Energy, whatever name you want to give it, something out there is shoving me in a very different direction than I thought I would go. So maybe, just maybe, I can return to my childhood dream when I was first diagnosed. I believed if I could impact even ONE person and change the way people treat their illness or help them catch CRPS before it advances, then I will have completed a life long goal.