DEAR DR. GOTT: I am a 39-year-old mother to three small children who was just diagnosed with full-body Reflex Sympathetic Dystrophy. I was going 150 miles per hour in my life when I twisted my ankle. I knew right away that something was wrong. The pain just never went away, but I ignored it. I was then diagnosed with CRPS/RSDS.
Ten months after the original diagnosis, an aggressive tailgater crashed into the back of my car, causing the RSD to spread from my lower right extremity to my entire body. To be involved in two accidents in 10 months was unimaginable to my family and me.
The pain gets so bad that no one understands it unless they have this ugly disease! I’ve become disenchanted with the medical community. I’m sent from doctor to doctor because of their lack of knowledge and/or treatments. I’ve been on so many medications in the past 17 months that I feel like a guinea pig. I know that the doctors are trying to find a proper medication for me, but what I am worried about is long-term damage to my organs.
I’ve had 18 ganglion blocks in a two-month span, being put under each time thinking that we could put this disease back into a remission of sorts. There is a small window to treat this disease – smaller than what doctors report. There is a lack of communication between offices so I carry all of my medical records so I don’t have to sound like a broken record. Now I am a candidate for Ketamine infusions.
I recently went into a pain management/surgical center. I was supposed to see a certain MD. This MD was unavailable, so I saw an associate. He looked at me and said there was nothing they could do for me and placed me on Kadian. This made me feel so bad that I stopped taking it after five days. I called the center and asked to talk about the medication. I was fortunate enough to speak to the MD whom I was originally there to see. He also suggested Ketamine infusions.
This is my last chance at getting some sort of hold on the RSD. Is there some sort of protocol that a doctor should perform before the infusions? I had a psych work-up and then a cardiac clearance. Should all doctors who treat patients with RSD follow this protocol? The doctor who originally told me about this treatment is a long distance away. However, there is a closer doctor, but the girls in his office know nothing about this protocol. What I have been told so far is that I will be in a recliner for four hours a day for 10 days, similar to a chemo patient, but without all the chaos that chemo brings. I don’t know if there is biofeedback, but I will be asking.
On a happier note, after my first accident, I was in a pool playing with my kids and supervising them. I was in the pool for four hours and found myself going off on my own a lot. I started doing kickless laps using “noodles” and stretching my aching limbs. I think this has helped me a lot, but my problem now is finding a pool where I can do these exercises.
I have one last shot with the Ketamine and I have hope. If it doesn’t work, I will have to find a pool and I know that will help me feel better.
DEAR READER: RSD is a complex pain disorder. Many of the things you are feeling commonly accompany any disorder that causes chronic pain. Depression, anxiety, feeling helpless or a burden, and others lead to more stress that can, in turn, worsen symptoms.
I have chosen to print your letter with slight modifications owing to length restrictions because it not only offers a glimpse of life with a chronic pain disorder; it shows that holding on to hope is still possible. Despite your difficult situation, you have found a way to ease your pain in a medication-free way and are unwilling to give up when things get tough. If hydrotherapy provides relief, I highly endorse it. Check with your local community center, hospital physical therapy department and other locations for the nearest location to you. I applaud your outlook and offer your letter as inspiration to others.
To provide related information, I am sending you a copy of my Health Report “Managing Chronic Pain.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a $2 check or money order to Newsletter, P.O. Box 167, Wickliffe, OH 44092-0167. Be sure to mention the title or print an order form off my website at www.AskDrGottMD.com.
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