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My Journey Through 19 Years of Chronic Pain

When I say journey through 19 years of chronic pain, I mean I have had the sensation of pain every waking minute of every day for 19 years. Constantly. Never goes away. It has become the new normal. I have forgotten that we are not supposed to live in ever present pain.

I recently contacted a company for information on a new device to treat pain. When the representative asked me how long I have had this pain he was amazed and praised my endurance. This conversation drove home the point for me that this is not a normal way to live.

In particular, my left shoulder has been hurting me since I had a stroke on February 14, 1999. Yup, Valentine’s Day. I suffered brain damage that wreacked havoc with the functioning of my central nervous system. If you think of this system like the wiring in your home, imagine there are short circuits everywhere. My nerves no longer send the proper signals to my muscles to contract and relax. The muscles in my left upper extremity are contracting at all times. They do not get a signal to relax. The resulting muscle tension and spasms are permanent and very painful. I have to do battle with the uncooperative muscles just to get through the day and function.

This damaged circuitry feeds on itself in a cruel loop. The muscles get stronger and stronger from never relaxing so they get larger, tighter and more contracted. The struggle to function has been compounded over many years.

I have consulted with countless doctors and alternative healers since the beginning. So far, nothing has made it go away.

Drugs were the first line of treatment. I took Ultram for a few years because it dulled the pain a little bit. Side effects were minimal. I took antidepressants for a year after the stroke, too because well, you know. I had two babies and I was in a wheelchair as a former dancer and athlete. It was depressing.

There was one drug that removed the pain for a few hours once. An aunt had given my husband a prescription medication that she didn’t like and suggested I try it. It was OxyContin. The first time I took it I had total relief for about 6 hours. We know what the problems are with this drug being addictive and deadly. I eventually had a prescription of my own for it, but it started to nauseate me and I couldn’t take more to get the relief I was looking for. My husband ended up filling the precriptions and became addicted in short order. He had been abusing narcotics since he was in his 20's.

I also took Gabapentin for years because it took the edge off some. It is not a narcotic so I was not addicted, although in recent years new research has proved otherwise as far as its addictive quality.

I tried oral muscle relaxants like baclofen to try to treat the cause of the pain but they didn’t work and only gave me an intolerable dry mouth.

The most effective pharmaceutical treatment has been injections of Botox. Every three months for the past 10 years I’ve gone for intramuscular injections with an EMG needle that when in the muscle gives the doctor feedback as to how active the muscle is so they can inject the medication in the most active spot. It’s a painful, lengthy procedure and it wears off every three months. The drug blocks the production of acetylcholine which is the chemical that gives the muscle the signal to fire. About two weeks after the treatment, my muscles calm down a notch or two making me a little more comfortable for a few weeks.

I have tried alternative treatments, as well, with very limited results. Deep tissue massage feels good during the process, but generally falls short of loosening the contracted muscles. I think natural endorphins are released during the process that make me feel better for a short time. Accupuncture made me feel slightly better, but it was something that required frequent, expensive visits so I stopped going as the cost benefit analysis didn’t lend itself to continuing. Insurance won’t cover this 5,000 year old, proven remedy.

I’ve had prayers and angels at work for me. I can’t say for sure what the prayers may have done. There were a few instances where a spiritual healer laid hands on me and I did indeed feel energy work through me. In these cases, there was a temporary, marginal improvement. Hypnosis worked similarly.

I paricipated in a clinical trial for an implantable TENS unit. At first, I noticed things calming down a bit, but the implant site became infected and I had to quit the trial. A friend who is a holistic doctor introduced me to a handheld product called the Scenar that when applied to the painful area by someone who had the use of both hands provided some relief. Because the pain is mostly at the back of my shoulder, I was not able to apply the device myself with my right hand. This became an impractical treatment as it required the dedicated commitment of someone to apply it regularly.

Smoking marijuana definitely eases the pain and spasticity, but I’m not one to walk around stoned all day. It has become my drug of choice for my down time.

People are generally surprised to learn that I live in chronic pain. Some who watch me struggle with spasticity aren’t surprised at all. If you’ve seen me grab life by the balls with a big smile on my face, you may wonder how I do it. I suppose the answer is we can get used to anything and decide where we put our focus. I refuse to let physical pain hinder my enjoyment of this gift of amazing life I have been given.

Young stroke survivor, mother, champion equestrian, tambourine player, storyteller,

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