Fibromyalgia from Chaos to Control

I was diagnosed with Fibromyalgia in 2005. I’m not sure how long I had been experiencing it before then so I generally say I’ve had it for eight years. I have tried a number of treatments including massage therapy, Chiropractic, medications, herbals, tens units, and Epsom salt baths to name a few. To a varying degree they all had their moments some better than others. My favorites were probably the massages and baths.

I don’t think anyone can say with 100% confidence how Fibromyalgia starts. Most will say that it starts with some sort of shock to the central nervous system. I lean very much that way myself and look to an exposure of mold and rat poison as the event that started my journey. Recently I have been introduced to the Pain Management Program at the University of Nebraska Medical Center.  What I have learned is so strikingly extraordinary, that I want to share it with anyone who has been troubled with pain. Not just that of Fibromyalgia but any chronic pain that is no longer attributable acute injury or disease.

Fibromyalgia is often described as an over sensitization of the central nervous system. This makes a lot of sense to me. As I consider the many symptoms that I have experienced each one of the can be related back to improper responses of the central nervous system. Sensitivity to temperature extremes especially cold, Irritable bowel syndrome, pain, lights, noise to name just a few. I find it interesting that the UNMC Pain Management Programs treatment of pain targets the improper responses of the central nervous system to pain or absence of pain. But in doing so they are providing tools that help me affect many of the symptoms that I experience beyond the basic pain that everyone associates with Fibromyalgia.

One of the key areas of emphasis in this program is the elimination of pain medication. Especially narcotic or opioid based medications. It’s one of the determinations for entry into the program that “no further medical, surgical, and or pharmacological techniques are appropriate to manage your pain“. I don’t think I need to discuss the problems with long term narcotic usage here. An interesting topic for me however is neural plasticity.

I have included the link because I’m am far from the best person to explain neural plasticity in technical terms but I do understand it very well from a personal perspective. Basically this pain is a learned response to either the initial injury, a persons guarding response to the injury or both. Once it is learned it doesn’t stop. It can also spread through homunculus sensory map smudging. This is the map of all of the nerve endings in your body. As you guard and immobilize your body it becomes unclear as to where the pain signal is really coming from. So what started in the lower back now involves the middle back and upper legs. As you know the ankle bone is connected to the …. You get the picture.

So let me get back to the UNMC PMP. If I had to describe to someone in a nutshell what the program does I’d say “They teach you how to retrain your central nervous system to respond appropriately to pain and relaxation”.  Their approach consists of three key elements:

  • Psychology
  • Physical Therapy
  • Nursing

The psychological portion of the program addresses many issues including our thoughts about pain and it’s affect on our life, the neuroanatomy of pain (how pain signals travel in the central nervous system), relaxation and meditation techniques and the affects of pain on our social and family life to name a few.

The Physical Therapy sections include exercise, and more exercise and more exercise. Actually this is a very closely monitored program starting at levels appropriate for each individual and then increasing. They teach about desensitization and re-activation of the nervous system and muscles, and how to use icing therapy to disconnect the nerve endings from the brain and get them to reset. Probably the biggest exit strategy is pacing.

I want to take just an extra moment to talk about pacing. As I described in a facebook group for people with fibromyalgia, pacing is creating a list of activities with multiple categories. At least two types of activities are required. Exertion and relaxation. So think of it as chores and relaxation. Or you could have 3 or more. Chores, relaxation, and fun. Where chores and fun are exertion and relaxation is well… relaxation. Notice that relaxation is not fun. it’s not watching TV or reading a book it’s a focused and planned period of actively working on relaxing in a manner to promote healing and restoration. I took that from the book!

This plan of cycling through the activities and relaxation is just that it’s a plan. You do it regardless of the pain you experience. The pain is taken out of the drivers seat and you take that position. This means that when it’s time to relax. You do it. You don’t push through because you’re almost done. You don’t do all of your chores because you’re having a good day. You stick with the plan. This is a training session for your central nervous system. You also pace up or pace down. Many of us with pain have become lethargic and need to step up our lives to get to a more normal level of activity. Others need to pace down and quit doing so much that we send ourselves into tailspins.

Finally, there is nursing. As I indicated before, the program is not about treating the pain with traditional medicine. Their primary goal is to get people off of the narcotics (which I am not on) but I have am on Lyrica. Which I understand tries to moderate the impulses of the central nervous system. So why should I depend on the medicine to do what I can do myself through activity, relaxation and pacing.

I hope you have found this information useful. For me it has been a very refreshing journey in my travels from chaos to control. I’m learning to get control in an area that has really disrupted my life.

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