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My world began to change in late 2003. I was the administrator at a small school and teaching morning Kindergarten. I loved teaching the little children. They had so much energy that it kept me constantly on my toes to think of active ways to present the days information. My main motto was, “Make it fun!” I worked with a great bunch of people, and my own children were slowly graduating out of the school so I enjoyed the time I had with them as well. I was active and enjoyed doing outdoor things on my off times. I was part of the earthy people who chose to walk to work to save the environment. That was me: lots of energy to burn; an A-type personality with a servant heart. My preference was to work in the background - as long as it wasn’t up front where people could actually see me! It was this part of my personality that kept me from bothering the doctor when I began to have pain on my left knee. I was certain that it would just sort itself out if given enough time. Perhaps, I thought, if I drove to work for a while and cut back on my gym time. Funny thing was it got worse not better and if I tried to ice the swelling I nearly passed out from the pain. I began to walk to work again (after all, taking it easy didn’t work). I switched from the weights and cardio room to aqua fit. The pressure of the water was really painful. I opted to do a little bit of both and hope that I could endure. It seemed like my leg was getting weaker and I didn’t want that. I began to wear shorts as the pant legs brought me great pain. A slight breeze brought tears to my eyes. I finally gave in and went to the doctor.
It took a while for the doctor to ascertain what it was that was bothering me. He tried capsaicin type creams, Tylenol, cortisone and even sending me to other specialists such as an orthopaedic doctor. I was put in a leg brace and a physiatrist recommended cessation of all activities, and then in an about-face suggested swimming and bike-riding to keep the muscles from atrophying further. No one could figure out what I had.
Meanwhile, I went to see a physiotherapist who tried ultrasound and other exercises. I continued to get worse. I went to see a chiropractor who was attentive and came up with many suggestions but still no one knew the problem. MRI scans followed x-rays. A problem definitely existed but no one knew what. Out of desperation, in 2005 I took myself to a new physiotherapist. On our first visit she determined the problem to be Complex Regional Pain Syndrome (CRPS) a.k.a. Reflex Sympathetic Dystrophy (RSD). We were very much behind on our ability to arrest the problem. CRPS treatments are most effective when they occur within the first six months of onset, but by this time it had been two years and the CRPS had begun to spread to my right leg as well. I could no longer walk far, and my walk had become more of a hop and a step. Getting in and out of the car became excruciating, let alone going over bumps. Any movement sent stabbing pains through my legs and caused me to feel nauseous.
My treatments at the local pain clinic began in October of 2005. I have undergone a dozen lumbar sympathetic nerve blocks, most of them in close succession to each other. One was done without fluoroscopy - a mistake that I believe caused my disc to tear and my CRPS to exacerbate not only my legs but my back, arms and hands. It took two years to discover that my disc was torn and another year before undergoing a disk replacement in October 2008. This has resulted in some benefit to my back, but the surgery has aggravated other pain areas.
I have tried over two dozen different medications, at least. Many of them have been narcotics used to fight tenacious pain. The litany includes bone scans, x-rays, Bertylium blocks, Bier Blocks, psychiatric assessments, training in Mindfulness, bio-feedback, acupuncture, massage, weekly infusions of pain medication, creams for pain, blood tests, nerve conduction tests, physical therapy, steroids, botox & cortisone injections, injections into my left knee every four to five months, a spinal cord stimulator trial, an intrathecal pump trial, proliferative therapy, 31 dives in a hyperbaric oxygen chamber, special medicated mud baths, yoga, warm water therapy, therapeutic touch and naturopathic interventions.
Frequently I am poked, manipulated, had my muscles tested, teased the sensitivity nerves, all to assess the nervous system and its hold on me. I leave in much more pain and agony each time. I dread having another new doctor meet me because I have to endure so much pain each time. Treatments designed to make me better usually result in more pain or just a small short-term improvement.
I continue some aqua therapy despite the pain it causes me and I try to walk daily with the use of walking poles. I do this to fight to keep my muscles strong. I have an electric wheelchair to get around and find myself in need of it more and more. My energy levels are extremely low. My desperation is high. I constantly feel like I have knives poking into me, my muscles and bones ache, my skin feels everything acutely and sends a pain message. My body shakes sometimes for no good reason. I sweat when I am cold. The wind caused by someone walking by me causes great pain. I am very sensitive to changes in weather and also to cold. I suffer from anxiety, agitation and insomnia. I suffer with extreme weight loss due to the nausea that I suffer from the high pain levels. My joints are very tender and my limbs swell for no reason. I cannot take a shower without pain. I often feel like I have a very bad sunburn. I find it hard to find shoes that don’t hurt the top of my feet. If there is any stitching on top, I cannot wear them. I must wear soft pants only as the cloth causes me pain against my skin. I cannot be touched, even gently, without pain.
I often refer to myself as the princess and the pea and the clinic staff makes sure to treat me as such. They are very kind but the effort to put this CRPS into remission remains elusive. As of May 2009, my pain specialist has determined that there is little more that he knows to try and has suggested that the Ketamine trial may be a good direction to go in. I had to quit the job that I loved, in September of 2006 and went on to disability. I have homecare help as I can no longer do the normal things on my own. My husband has taken on the main care of our children and their needs. This makes me very sad as I want very much to be able to hug my family - to have some quality of life that is not filled with the endless pain. Many times I have considered what it might be like to end the suffering but know that I must fight on till I have tried everything there is to try.
I have followed the Ketamine Coma Trials online and through my CRPS network of friends. Some have gone themselves and reported on their successes. Although, there is a risk, I feel that this is my last fighting chance to get my body out of pain or at least to a level that is much more manageable.
When we met with Dr. Kirkpatrick in Florida, we tried the 3-day escalating dose treatment to see if that would give me the relief I needed but it was unsuccessful. I understand the risks involved in pursuing the Ketamine coma through Dr. Cantu (Monterrey, Mexico) but am willing and prepared to go if only for the chance at a life again. I believe my life has a good chance of returning if I do this. I don't expect to be completely out of pain, though that would be awesome. I do hope to have it reduced to a manageable level and not be known as an "untouchable" anymore.
August 27, 2009
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