In Their Own Words: Pain Management

Not all people who have Transverse Myelitis experience nerve pain, but for those who do, this becomes one of the most difficult aspects of having this condition. In this issue of The Transverse Myelitis Association Newsletter, the issue of pain management will be addressed through the following articles submitted by our members for the In Their Own Words column. In preparing their articles, the members were asked to consider the following issues: 1) Provide a brief description of your history with TM; how long you have had TM, the initial symptoms, your current condition and where your injury is located. 2) Describe when in the course of having TM you began to experience pain. 3) Describe where you feel pain and try to describe the sensations that you feel. If you experience different sensations in different parts of your body, please identify those. 4) Describe your history with medications to treat the pain. Describe the medications that have been successful for you and those which have not, including the combinations and dosages. 5) What, besides the medications,has been successful in decreasing your pain? 6) Are there certain activities or positions that cause you to experience more pain? 7) Describe the explanation you received from your doctor as to the cause of your pain. 8) If your pain has stopped, please describe how long after you have had TM that this occurred, and describe any circumstances surrounding this event. 9) Anything else that would help a person with pain from TM better cope with their situation. We are most grateful for our members' willingness to share this information in the newsletter.

Anonymous
female, age 60

I have a sensation in my right foot that I call tingling, but it is sometimes really more like a hideous electric shock. During the day, I get annoying tingling. I wriggle the foot, and if privacy permits, stamp it. It is when I put my feet up to relax or try to sleep that it is just plain murder. Also, when having an MRI, it is impossible for me to keep the leg from twitching.

I was diagnosed with TM about 8 years ago and was hospitalized and given IV cortisone. The doctors told me, after an MRI, that the lesion was in the cervical area and that I am 80% recovered. I can walk about a half block at a time, but the weakest link in my mobility probably is not the TM because I also have a fractured femur from a fall after having had my hip replaced. The surgeons don't want to touch it probably because of my other medical problems (osteoporosis and lupus). My balance never was too good, but now it is so bad that I have to hold on to something or look for a ramp to go down one step and that, I believe, is a result of TM. For about 2 years before the diagnosis, I was troubled with the tingling but could walk and just accepted it, assuming it was poor circulation. It was diagnosed when I sought medical help one day because the foot went numb and that's when I was hospitalized. I am female, age 60.

That was by way of background. Back to pain and pain management. I have tried Baclofen, Nortryptiline, Klonopin and Flexeril, as well as all kinds of anti-inflammatory medications, both prescription and over-the-counter. None of these helped. No matter how sleepy the medications made me, I went to bed and soon realized that my right foot was in a frog-like position with the sole resting against the left foot in some kind of effort to damp the vibration and knew it was going to be a long night. Darvocet usually does take the edge off so I can get some sleep. I'm very careful only to take it at night and only then when really necessary and I, frankly, live in dread of being told that I have to go back to that much agony because of fear of addiction.

Jessie Danninger

I developed Transverse Myelitis in April, 1993 at the age of 19. Within 24 hours of onset, I was almost totally paralyzed from the neck down. The lesion occurred at C-4 and therefore it was my hands and arms that were most seriously affected. I had severe pain during onset, but that disappeared within a day. I spent the next month in the hospital and rehabilitation center learning to walk and take care of myself. By the time I left the rehabilitation center, I could walk, but I was weak and my hands were both very paralyzed. In the four and a half years since, I have become much stronger and my hand function has been greatly improved through tendon transfer surgery. I currently work forty hours a week, but I am easily fatigued.

One of the most difficult aspects of recovery was dealing with the intense pain that developed about 6 weeks after onset. By then I had returned home and was spending a lot of time doing therapy, so I thought the pain in my hands (the most severely paralyzed area for me) was just due to overuse. I tried to cut back a little on my hand therapy to rest them, but the pain continued to get worse. It gradually spread up my arms to my wrists, elbows and shoulders. Within a month of the pain beginning, it was at its worst. The pain is difficult to describe. It was not muscular pain but deeper, like in the tendons and

bones -- a little like what I imagine tennis-elbow feeling like. It was most intense in my joints and it was constant. I tried slings to rest my arms, but that didn't help. My parents bought a mini whirlpool machine for the bathtub which helped a little, but only while I was in the tub. I would wrap a heating pad around my arms very tightly and would turn it on "HIGH". This helped some, but I burned myself a couple times this way. Nothing helped very much and the pain was beginning to be intolerable. Eventually, it was so intense and constant that it became incapacitating. I could do nothing all day except lie around holding my arms and trying to make the pain go away. I would sleep as much as possible because that was the only time I felt relief. My doctor suggested that the pain may be from "incorrect sensory transmission due to damaged nerves" and he prescribed ibuprofen and Tylenol, but the effects were hardly noticeable.

In August, after about two months of severe pain, I saw a neurologist at the Mayo Clinic in Rochester, Minnesota. He prescribed Amitriptylene. This was a miracle drug for me. After just one dose, my pain began to subside. Sixty mg a day kept the pain away and I was able to return to school that fall. Unfortunately, this medicine made me very sleepy and I usually slept about 10-12 hours a day. However, the relief I got from that horrible pain was well worth it. While on this medication, I normally felt no pain, but if I would get stressed out or not get enough sleep, I would begin to feel that aching in my shoulders, elbows and hands. Whenever I forgot to take a dose, I would realize that the pain was just beneath the surface.

In May of 1995, two years after I was struck by Transverse Myelitis, I was scheduled to have the tendon transfer surgery on my right hand. In order to prepare for the surgery, I had to stop taking all medication. I intended to do this gradually. I usually would take six 10 mg pills of Amitriptylene a day, and I planned to try to take fewer -- I planned to just take them when the pain became unbearable. I decided to start this a month before surgery so that by the time the surgery date rolled around, I would have weaned myself off the pills completely. But the day that I began this process, I never took a single pill. I didn't need any the next day either. When I stopped taking the medication, I realized that the pain had vanished completely. By that time, I had been on 60 mg of Amitriptylene a day for almost two years and at some point for some reason, the pain had disappeared. I

went ahead with that surgery as well as a second and the pain never returned. I have not been on any pain killer for over two and a half years and I have no pain. Occasionally, I'll get a twinge of mild pain, similar to the kind I had four years ago, but only when I'm very stressed or very tired. I always need at least eight hours of sleep a night. To relieve it, I take a nap or find a way to unstress myself (such as get a massage). Sitting in one position for a long time also tends to induce the pain, but it is easily relieved by changing position or moving around. I wish I could say more about exactly when or why my pain went away. It's difficult for me to understand why, especially since the pain was so excruciating initially. All I can say is that I struggled with the pain for a while, I found relief with Amitriptylene, I prayed a lot and one day my pain was gone.

Jo Ellen Finkelstein

I began my journey with TM on October 6,1996. I was returning from a weekend at a Science Fiction Convention, and noticed on the way back that my back and hips hurt. When we stopped for gas and a soda (and bathroom break), I almost fell and my boyfriend noticed that I was walking funny. When we got home, I laid down thinking I had overdone it during the weekend. I took some aspirin and tried to take a nap. When I tried to get up, I couldn't move my legs. I think I really lost it then; I know I was screaming and crying from pain and fear. We had no idea what was happening.

In the ER they did X-rays, cat scans, and a spinal tap. Later, I had a mylogram and they tried to do an MRI, but I'm so claustrophobic that they had to get me out almost immediately. I was in the hospital for the entire month, physical and occupational therapy twice a day. By this time, I was at least standing up over my walker and had walked down the parallel bars with assistance. My doctor thought I needed two to three more weeks of therapy, but the insurance company said to send me home. I was home for a week and seemed to be doing fairly well when I had intense back pain again one night. Back to the ER where they checked me for a kidney stone! Guess what? They didn't find one! So, they sent me back home in an ambulance even though I couldn't move my legs again. And this time I wasn't breathing well. By the next morning, I hadn't urinated in over twelve hours, still couldn't move my legs, and was having more problems breathing. Back to the ER. This time they gave me some IV Valium and gave me an MRI. Hello -- guess what they saw? A very clear spot on my spinal cord! I guess that it wasn't psychosomatic paralysis after all! They found the lesion on my spine at about T-10. The first diagnosis was Spinal Infarct, but they later changed that to Acute Transverse Myelitis. I had never heard of that, even though I had gone to nursing school and was in the nursing field. I went down to the medical library to see what I could find out. There wasn't much there and what I did find wasn't exactly encouraging. I left in tears.

I simply couldn't understand why all of these things had happened to me. Six months before the myelitis hit, I had lost my husband of 17 months to pancreatic cancer. I had just started to pull my life back together, and I had a new job lined up. I didn't work after Bruce was diagnosed, because we knew we didn't have a lifetime to spend with each other. Some new friends, a new love interest -- I hadn't been looking, but we met and clicked immediately. Life seemed to be looking brighter after a long black tunnel. So why me, and why this? Maybe, as my mother says, there is a reason for everything that happens -- if so, I wish to heck I had a clue!!!!

I was in the hospital this time for a month and a half, getting out just in time for Christmas. Home for a few weeks at which time we realized that I had a decubitus on my right hip. We thought that it was a stage two decub, but when I started running a fever and had drainage from it, I went back to the hospital. As they debrided it, they discovered that it went all the way to the bone and had tunnels branching off it. Well, this is a lovely place to spend New Years! A month and a half later, they were preparing to send me home as I seemed to be healing nicely. I asked them to do a CT to check that there was nothing else going wrong. The infection was in the bone. I was home for a week and had to go back to have the bone scraped and a muscle flap done. They finally sent me home again (for a week), but the surgeon had missed some tissue that had died just before they sent me home, so back I went. Two weeks later, I was back home and coping with trying to get my life going again. Meanwhile, Dragon (my significant other) had been neglecting his health and managed to have a heart attack right after I came home. He had to have a triple bypass which meant he couldn't help me take care of myself for a least six weeks. My mom (77 years young) couldn't stay with me to take care of me for all that time and her house isn't accessible at all. None of my sisters or my brother could help (out of state and coping with their lives), so the insurance company shipped me off to a rehab facility connected with my hospital. I was the only one under fifty! I threw my version of a temper tantrum (less kicking my heels on the floor) and then got over it and made the best of it. I actually managed to cheer up some of the patients and became sort of a cheerleader in therapy.

My pain began with the onset of the TM. I had pain in my back from the beginning that was controlled with shots of Demerol in the hospital. After a while, they changed me to Darvocet PRN (as needed). Eventually, I stopped taking this too. That is, when the numbness in my feet started bothering me. It was constant and felt like my feet had fallen asleep with the "pins and needles" feeling always there. Eventually, it also included a "burning" sensation as though I had set my feet too close to the fireplace. I was also having problems with muscle spasms in my legs. The spasms would travel up my legs to my back and around my diaphragm. They were so hard and so frequent that my back and ribs hurt constantly from the muscles tensing up.

After speaking to Dr. Fischer (my physiatrist), he started me on Baclofen (10 mg., four times daily) which relieved the spasms almost immediately. The pain in my back and ribs went away. It also helped with bladder spasms. I still have some spasms, but not nearly the way they were before.

After seeing several postings on the tmic list about relieving the pains and burning in the feet with Neurontin, I approached my doctor with a request to try it. So far, he has me on a low dose which I feel has helped slightly. We will probably have to adjust the dose to be more efficient.

I have found that if I find something to distract myself, I can usually ignore the pain for a while. But it is always there, just moved to the back of my awareness. If I am asleep, it usually doesn't bother me unless it is really bad and wakes me up. There were times when I was in the hospital that it was pretty bad. I had a tendency to sleep a lot, partly to ignore the pain and partly because of depression. The worst times for the pain in my legs is when I have water build-up in my system. When I have edema in my feet and legs, it is extremely painful and I tend to go back to bed so that I can elevate my feet and legs.

The only real explanation that my doctors have been able to give me for the pain is that it is probably related to nerve damage from the lesion on my spine. So, there isn't much to do for it except possibly biofeedback and pain medications, which I prefer not to use unless absolutely necessary. In the meantime, I continue to use distraction and occasionally aspirin to control it.

Having worked with people with constant pain before this struck me (I did private duty nursing with the majority of my patients being terminal cancer patients), I was aware of many ways of coping with pain. I never thought that I would be the one having to use them!

Currently, I am working on going back to rehab and will be fitted with braces to try to stand and take a few steps. I have been home now for a record breaking three months and have been working on getting a new life going. I have an appointment to meet with vocational rehab people. I got on a list to find an accessible house through the local housing authority that I can buy. Just this weekend (Labor Day), I worked at the Jerry Lewis telethon, as I did last year, and hope to continue working for them every year.

I hope I will be among those who make significant recovery. I'm working on standing with my therapist. But I'm not letting life pass me by. I will admit that there have been times when I wanted to die (too chicken to do anything, though), so they still have me going to a psychiatrist once a month and it helps. I have also had to cope with my late husband's ex-wife -- to stay in touch with my step-son -- and Bruce's mother. Of all the things Bruce left behind, I wish he had taken them! Having my computer here has been a great outlet for me. When I get down, I can write in a journal I keep, or I get into the paintbox area and create something that gives a visual expression of how I feel. I've even used it to create pictures representing the ex-wife and the mother-in-law and after I think about what I drew, I delete them!!!!

Sheila Fitzell

I was diagnosed with TM in August of 1996. Prior to that time, I had recurring pains in the joints of my legs and hands. I was also very lethargic. I started to have difficulty with my balance when walking and I became incontinent. I couldn't seem to lift my right foot and I started to drag it. Then I couldn't stand up. This all happened in less than a week. I was hospitalized and given tests and then steroids. It appeared I was improving and started physical therapy. I then moved to the rehab floor. A few days later, blood tests revealed that my potassium level was extremely low, and my electrolytes were out of whack. After this I became paralyzed and though I was given more steroids, they didn't work. I spent a total of two months in the hospital. My injury is located in the C7, and T4, T5 sections.

I began experiencing pain about 3-4 weeks after entering the hospital. Sitting in a wheelchair was very uncomfortable. My feet felt as if they had weights on them that were dragging them down. This hurt terribly and I was given Tylenol. However, the only time I got relief was when I was sleeping. Eventually, I had burning sensations from the tops of my legs to my feet and this whole area was hypersensitive. The least nudge could send me into orbit, and I could not bear the slightest weight on my legs. I still have mild tingling in my hands, and occasionally experience twitches in my upper back and face. The tendonitis I had in my wrists and hands has diminished. At present, I have burning sensations in my ankles and feet, and my feet are still hypersensitive.

My doctor prescribed Elavil to help calm the nerve endings, however, I experienced unpleasant side effects and stopped taking the Elavil. I occasionally take Tylenol to take the edge off of the pain.

In the past 18 months the degree of pain has varied, and I firmly believe the barometric pressure plays a role in this. It doesn't seem to matter whether I sit on the couch with my feet on the floor or with my legs up on the couch. The discomfort and pain is there. So, this is what I have found to help me. First, I am angry because I'm hurting, so I decide that I can't feel any worse and start to do some exercises. I do stretches, toe raises, knee bends, etc., and walk around the house several times. Sometimes I use the stationary bicycle. My feet tend to sweat now, and then they become cold and hurt, so I change my socks and sneakers, but first I powder my feet and rub them a little. This does help for a while and I usually do this 3-4 times a day. The other thing that works for me is WARMTH! Sometimes after I do the above, I put my legs and feet up on the couch and wrap a fleece blanket around them. Being warm is really soothing. When the sun does appear and streams through my window, I sit or stand in it's rays. It feels so good. I wonder if I was a cat in a former life! Additionally, I find having your mind involved with something is very helpful, such as telephoning a friend and listening to their problems, read a book, write letters. Of course, depending upon your degree of independence, get out of the house, get someone to go for a walk with you. Go out to lunch, take an elderly friend to church or to the grocery store, bake a cake. Normally, I am unable to sit for more than an hour without getting up and walking a little. However, recently I sat for three hours watching a movie, Titanic, and because my mind was occupied, I did not notice any pain or discomfort in my legs or feet; just a little stiff when I got up!

Let's face it, we may have to live with this pain for the rest of our lives...so let's live!! I do not remember ever receiving an explanation as to the cause of pain.

I'll be interested in reading about other peoples' ways of dealing with the pain. I hope this is of help to someone.

Sincerely,
Sheila Fitzell

Pauline Habib

I have had TM almost four years now. I first started to experience lower back pain about two months before my injury. Then, in July 1994, I caught the flu. As I was trying to get my clothes on after a shower, I bent down too far. I felt an excruciating pain in my lower back and fell to the floor. I was paralyzed from the waist down and diagnosed a week later with lesions at T-12.

I remember that my pain first started in my feet. My feet were swollen for quite awhile after I was hospitalized, and I attributed my pain to the swelling. After I started physical therapy, I began having pain from the waist down. I thought that it was because I was spending too much time in my wheelchair. The pain felt like I had a very bad sunburn. The pain became so bad that I would lay down between PT sessions. I found that laying on my side with a pillow between by legs (I didn't like the sensation of my skin touching) and the bed elevated seemed to ease the pain. Finally, the pain was so intense that I complained to the nurses and doctors.

I currently take 200 mg. of Tegritol during the day and 75 mg. of Amitryptiline at night. The Amitryptiline helps me sleep by making me very drowsy, it helps with my bladder urgency, and it may also be helping to alleviate some pain. Before I started taking the Amitryptiline, I would have to go to the bathroom about 5 times a night. I experience a dull burning sensation during a typical day. I would not be able to take the Amitryptiline during the day because it really makes me drowsy.

I always wake up in the morning with little or no pain. I usually feel little or no pain when I shower and when I am in the pool. Laying horizontally always eases my pain as does elevating my feet and sitting on my hip. Sitting for any length of time causes me much pain.

From what I understand, the nerve coverings were damaged. So, the message that is received from the brain is that there is some damage and thus there should be pain.

I was on Dilantin for a short time. It was not effective in relieving my pain. My neurologist put me on Tegritol. I was on 800 mg. of Tegritol during the day and 75 mg. of Amitryptiline at night for about three years. We started out with a low dosage of Tegritol and gradually worked up to 800 mg. About every four months, I have to have my blood taken to check the levels of Tegritol.

I decided that I wanted to see if I could reduce the amount of Tegritol I was taking everyday. I wanted to reduce the medication, because twice when I got the flu, I overdosed on the Tegritol. I was told that this happened because my body underwent a drastic change due to having the flu. As a result of the high levels, both times, the doctors cut back my dosage and gradually increased the amount again after I recovered from the sickness.

With direction from my neurologist, I have gone from taking four 200 mg. tablets to one 200 mg. tablet a day. I have remained at the one pill a day now for about two months. I can feel the increase in pain, but I am able to cope with the pain at this level. I am wanting to be completely off of the Tegritol. I am hoping that I will have more energy because of not taking Tegritol. I wake up tired and go through my day very tired.

I do not really understand how this pain I experience through most of my day really works. I know that I have not had any visible improvement in my condition for about two years. So, how is it that I am able to reduce my pain medication? I think that I am able to better manage it for myself. Before I got TM, I never understood how people "lived" with pain everyday. Well, medications help to get the pain to a place that's manageable and you just deal with it.

I am a kindergarten teacher. I absolutely love my job! When I am with my kids, I do not experience any pain. Because I am so focused on the children, I do not feel tired or feel pain. Keeping busy and doing things I love to do has helped me tremendously to take the focus off of how I am feeling.