Fibromyalgia “a 75% recovery”
Here is my fibromyalgia story (told by an EEG biofeedback practitioner): I began to develop symptoms of stiff joints and chronic muscle pain in the early ’80’s while in Saudi Arabia with my husband. It was not a particularly pleasant time. I did not sleep for days on end because of the extreme heat and the fact that the apartment I lived in did not have central air conditioning. Our apartment had the in-the-wall type that sounded something like a vacuum cleaner. Imagine trying to sleep with a vacuum cleaner turned on over your head. My ankle joints would be so stiff in the morning I could barely walk. It took hours to “loosen up”. Our drinking water came from deep ancient wells, and that water had “salts” added by our water department. Lots of deposits on our humidifier.
All my life I have been plagued by insomnia, irritable bowel syndrome (spastic colon), chronic bronchitis, sore neck and back. Both my parents smoked and were loveless. I grew up in a sea of desperation. Got terrific grades. My mom held it against me. “Show off”.
Just about the time I took the first EEG Spectrum training I was a biofeedback consultant at a clinic in the State of — that specialized in chronic pain and fibromyalgia. That is how I came to be diagnosed.
My health care was G– H– C–, where I was a labor and delivery nurse. I had been injured in two on-job events: a fetal heart Doppler – about 6 pounds – fell from a refrigerator top onto my right shoulder. Also a few months later a laboring teen tried to pull my right arm from its socket along with a bite to my shoulder. This resulted in a “frozen shoulder” which was so painful I could not sleep, was nauseated most of the time, and generally felt helpless and hopeless. My frozen shoulder proved it, don’t you know. I was just miserable. Spent my time working eight to twelve hour shifts, doing my meager biofeedback practice, and the rest of the time I was in bed. The fatigue was unbearable. I could barely go to the bathroom or shower. Everything hurt. Everything.
My family doctor at GHC would not give me a diagnosis of fibromyalgia because “we believe that if the sleep deprivation is taken care of, the rest of the symptoms clear up spontaneously.” What planet was she living on? I declined the Amytriptiline and pressed for some kind of physical therapy. The PT’s at GHC did not have a clue about fibromyalgia; they liked to dig their thumbs in to a trigger point and would not back off until I gave a sign that it really really hurt. One day I actually fainted from the pain. After one of these sessions I would be laid up for weeks with pain, more trigger points, nausea, insomnia – the full Monty, so to speak. I could barely do my job for the pain, but the unit manager remained skeptical that there was anything wrong. I began to develop facial parathesia, which the neurologist could not tell me about. MRI’s revealed nothing. “Well ” he said, “People just get numb faces.” This cavalier answer actually infuriated me. “Don’t you ever wonder why?” I asked. He was dumbfounded and ended the meeting – he just stood up and walked out of the exam room.
By this time my research had found information about Feldenkrais therapy. I found an excellent practioner – Dr Jeff Haller – and with both ATM (Awareness through Movement) classes twice a week, and one Functional Integration lesson with him, I finally started to recover the use of my arm, and my chronic pain was much better, but not gone. I still could not garden, sew, paint – or sleep.
I did the bowel cleanse recommended by a medical doctor over at the fibromyalgia clinic – St Luke Medical Clinic – and I began to take malic/magnesium supplements. I cleared my diet of wheat, sugar, eggs, cow dairy, yeast, corn. Much better – yet I still was not sleeping, had tremendous brain fog, and forms of attentional deficit such as distractibility, social ineptness, big voice, sensitivity to light and noise. I still could not sit through long meetings.
About that time I got my own Neurocybernetics instrumentation and I took a TOVA to learn how I should proceed with the training. I scored way out of the “bell curve” in all catagories.
I began to train myself C3 Beta and some C4 SMR. I could not tolerate SMR at all, so I just did the beta work on the left. My training was sporadic. But slowly the brain fog lifted and I realized I could now work out in the garden for a couple hours at a time. Before the fibromyalgia crises I could garden from dawn to well after dark and not have it bother me in the least.
I continue to train a couple sessions a week at T3-Fp1 Beta, and T4-FP1 SMR. I know when I “need” a training session. It still surprises me the next day when I think, “Gosh I feel so good today, and I slept last night”. I believe the treatment of fibromyalgia must involve a variety of modalities. Just one thing won’t do it. For me the neurofeedback is the missing link that so many other treatment programs try to fill with medication. I believe that medication gives the idea to the patient that they are “sick” or “disabled”. I also believe that getting my butt off the couch and moving, pressing on with my life, even though it might hurt now, is part of the reason that I have prevailed over this. It can take over a life. I just refuse to let it. With the addition of neurofeedback, my recovery from the worst that I experienced with fibromyalgia has been about 75% to date.