I was diagnosed with TM in Sept. 2001 at age 53. Both of my legs had some degree of paralysis but that receded after a couple months. At present I still suffer with pain and bowel issues. I’m going to try to explain what I’ve learned about dealing with chronic pain for 15 years.
I am a great supporter and believer in the Transverse Myelitis Association (SRNA) and its mission. I encourage everyone to become a member. You will find a community to help you with the wide variety of issues you face when you become ill with a rare neurological disease. Some of those issues I discuss. Whatever your issue you will find help. I joined shortly after I got TM. I’d never even heard of transverse myelitis. In 2007 Julie Barry and I started a support group in Tucson which still meets today. In 2012, I became a board member of SRNA.
I am not a doctor and have no medical training. I am currently retired. Prior to retirement I was a criminal defense lawyer and then a judge. Since retirement I’ve begun to write novels and am working on my third. In my second novel, Anne Levy’s Last Case, the main character has TM. All the proceeds from my book I donate to SRNA.
Please understand that what worked for me may not work for you and what didn’t work for me may work for you. You should not try anything I suggest or change your medicine or exercise routine without first checking with your doctor.
I spent a month going from doctor to doctor trying to find out what was causing a myriad of symptoms: legs partially paralyzed, inability to urinate, constipation, feeling like a boa constrictor was squeezing my chest, pain when I bent down.
Unlike some of you, my disease started slowly. In May, I had a strange pain under my breast. I ignored it and it went away. Later I would find out I had a spinal cord lesion at that level. In June I had weird, copious diarrhea. It too went away. In August I had a rash on my abdomen that I thought might be shingles. The end of August, I woke up with the flu which continued for 10 days. During that time, I had numerous diagnostic tests and a visit to the ER, but no one could tell me what was wrong with me. On the day the fever broke, I woke up unable to walk normally. My left leg didn’t work correctly. I had to drag it. My right leg became heavy and numb. At times I felt weird sensations in my legs like pins and needles or electric current. Although I went back to work, I knew something was horribly wrong. I made several visits to my doc, urgent care and various specialists recommended by friends trying to help me find out what was wrong. The specialists either diagnosed me with a condition in their specialty or said they just didn’t know.
On the second or third visit to my primary care doctor, he decided I needed a brain MRI and a visit to a neurologist. I was thrilled when the neurologist said he knew what was wrong and diagnosed me with TM. I was thrilled because I assumed now that the doctor knew the cause it could be fixed. I was wrong. That was in Sept. 2001. Today 15 years later I still have chronic pain, although much less severe.
DEALING WITH PAIN
I began my pain journey with a neurologist. Unlike some people’s experience with doctors, my neurologist, Dr. Valdivia was the best. I am still under his care. Although it was very difficult to find the right meds or strategies, he never gave up, never doubted what I told him, and called me back whenever I left a message. Often these messages were tearful as were our conversations, but he hung in there with me. He always told me I’d get better.
I’d like to tell my story chronologically, but I can’t. I’m not sure when certain things happened. Some of the early months are somewhat a blur. After being diagnosed I had intravenous steroids for 4 days on an out-patient basis. I wanted to go back to work immediately, but the doc said I should stay home for a week and heal. Little did I know I’d be home for almost 4 months. Prior to TM, I was an active 53-year-old. I took aerobic exercise classes a couple times a week. I swam and hiked.
After I completed the intravenous steroids I started physical therapy. I could barely walk even half a block and still had weird sensations in my legs. I did therapy 2 or 3 times a week for about 6 weeks until my insurance ran out.
LESSON ONE: EXERCISE
I started walking again. At first I couldn’t go more than half a block very slowly, but I kept at it. Slow, short walks got longer. Don’t give up. I used the pool as much as possible. Water therapy is easiest for many people and often people who can’t walk can swim. I also find the cold water helped my pain as did using ice packs. (Hot water was the opposite. I found spas, saunas or even hot baths worsened my pain. Some medical professionals have verified that heat is bad for nerve pain.) I progressed slowly but within a year or so of diagnosis I could do anything I could do before. I attribute some of my recovery to exercising. Today at age 67 I still exercise almost daily.
Physical therapy may be an option that your insurance will pay for, at least in the short term. I also recommend a personal trainer. If you feel comfortable in the gym and know what exercises to do or class to take that’s great. Many people are fearful about exercising after being ill. This is a good time to hire a trainer after checking with your doc that exercise is okay. You may feel that trainers are expensive, but like all professionals they have skills that are worth paying for. Some people use trainers for long periods of time because, after they learn what they need to know, they also need motivation. Others train for a period of months, learn what they need to do and do it. Exercise has lots of benefits for everyone: losing weight, lowering blood pressure or cholesterol, increasing life expectancy, decreasing your chance of certain diseases, increasing balance and even brain power. For people with TM, exercise can do all those things plus decrease your pain and perhaps help your recovery. I hate to sound like a TV commercial, but those things are priceless. One of the best ways to pick a trainer is word of mouth. Otherwise check out a couple places before you decide.
One of the strange benefits I got from TM was standing instead of sitting. My pain was located between my chest and hips, more specifically from where my bra would end to shortly above my belly button. Sitting was very uncomfortable. I chose to either stand or lay down. Once I was well enough to go back to work, I spent much time standing at work and even at home when I ate, read, or watched TV. Current medical literature endorses standing for fitness, weight control and better health. Standing desks are good for you. One for TM.
I can’t remember what meds I was started on with the exception of Neurontin. For a couple years, my doc and I tried different medications in different combinations with different dosages. Some of those meds were tramadol, amitriptyline, amitiza and percocet. Nothing worked well enough to allow me to feel good enough to work. I spent many hours crying.
One of the hardest things I dealt with was my attitude toward pain meds. I didn’t want to take them. Prior to TM, I believed that except for an acute injury or surgery only wimps took pain meds. I considered myself a tough person who should be able to get along without pills. I was fearful of addiction. Instead of following the directions on the pill bottle I held out as long as possible before I took a pill. By the time I took it I was in agony. What I was doing was completely wrong. Pills should be taken regularly so your pain can be under control. If you wait the pain gets worse and it takes more time for the pain meds to help. You spend more time hurting.
This is the first blog in a series by Barbara Sattler, a member of SRNA Board of Directors. Barbara is a retired judge and a published author. The blogs will also be published as part of a book on rare neuroimmune disorders by Sandy Siegel, President of SRNA.