My recovery has taken a leap forward during the past couple of months. It certainly has been a long journey but my continual persistence has paid off. I continue to do LENS neurofeedback sessions once or twice a week, which has been very beneficial calming my nervous system, increasing energy, smoothing out emotional reactions and improving my sleep. I average around three nights of good sleep a week where I get some long stretches of deep sleep - not perfect but better than a year ago when I averaged about one good night of sleep a month!
LENS was not helpful in improving my muscle condition, which got agitated when I did any kind of sustained activities or exercise. I read in the book about LENS called "The Healing Power of Neurofeedback" about a woman that had recovered from fibromyalgia doing LENS combined with EMG biofeedback training. I contacted the doctor who developed the protocol but he was not helpful. I eventually found a biofeedback practitioner in my area who had experience with EMG training. After several sessions it became clear to me that this was something that I needed to do everyday on my own and that it did not require any expertise. I located an inexpensive EMG home unit on the Internet manufactured in England that cost $190 including shipping. Beginning in late April I started practicing on my own twice a day. Once I started this training I never had another fibro flare - even when I "over did it" and over the next several months I gradually reversed my fibromyalgia condition to the point where I am now able to do most of the activities I love - walking, gardening and playing the piano with no bad effects.
Using the EMG unit is simple. You place two electrode sensors in sticky pads on the large muscles of your forearms and one for grounding on the opposite arm. Then you watch the digital display of the muscle tone on the EMG unit and your brain figures out on its own how to decrease the level of muscle tone. Within 15 minutes I am always able to decrease the level considerably and within a half hour I can get the level below 4 microvolts, which corresponds to a relaxed muscle. Every so often I lift my fingers, which increases the muscle tension, then let go and see if I can get my muscle to relax again. Sometimes moving my arm to various positions or allowing it to drop suddenly can trigger a release of muscle tension. I have a picture of the placement of the electrode pads and more information about this on my blog post "Biofeedback Therapies for CFS & FMS" fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html . I have used the pads on tender points on my legs as well however it does not work to place the pads on the shoulders or neck as this area picks up my pulse. The sticky pads are reusable but not transferrable. After some use they become less sticky but this can be remedied by washing them with soap and water.
EMG training was not effective in resolving the pain on the soles of my feet. I had an intuition that this had something to do with nerve pain and that I might try treating this with low intensity laser therapy. I had tried this therapy with a local chiropractor a year and a half ago, treating my legs and arms with no success but I had never tried treating my feet. After my first session I suggested to my chiropractor that we also try treating the top of the spine as well. I got an important clue from Dr. Whitcomb who achieved his results from frequent manipulations to this area. By treating the place where the nerve impulses begin and where they end I arrived at a winning protocol and after 12 sessions my recovery took another dramatic leap forward. The system that my chiropractor uses is called BioFlex and is one of the most advanced in the field of low level or cold laser therapy (www.bioflexlaser.com).
I continue to practice with my EMG unit everyday, which reinforces my recovery. The curious thing is that when my muscle tone is relaxed I do not feel anything different in my arms. The impulses for muscles to over contract and tense, which is common to all persons with fibromyalgia are controlled by the brain and originate in the upper spine at the base of the neck. EMG training on the arms and legs provides an incredible tool to modulate these effects and reverse the dysfunctional pattern. I am totally astounded that there is no mention of this in any of the literature on fibromyalgia. All the more reason to continue with my blog.
I am convinced that both chronic fatigue and fibromyalgia syndromes are reversible conditions. Recovery requires a combination of different treatments for each person. I summarize these treatments in my opening blog post "Chronic Fatigue and Fibromyalgia - Strategies for Healing", (www.fibrofriends.typepad.com) which I continue to update along with specific subject posts as I learn more. My recent posts on "Biofeedback Therapies for CFS & FMS", "What Causes CFS & FMS", "Treating CFS & FMS with Naturopathic Medicine" and "Fibromyalgia Muscle Dysfunction" are very informative with links to many resource sites. Check them out and be sure to refer others you know who have CFS & FMS to my blog.
I still have severe food and drug sensitivities, which requires me to adhere to a very strict, narrow diet and disturbed sleep. I suspect this is due to deregulation of my sympathetic/parasympathetic nervous system and/or adrenal function as a result of the physical trauma I lived with for many years. I am exploring several new therapies at this time along with LENS that I hope will unravel and resolve this final hurdle for me. It has been my experience that reversing CFS and FMS not only requires addressing the root cause, which in my case was a restricted air passage, it also requires reversing all the individual dysfunctional patterns that developed along the way. This is a process that requires a lot of time, persistence, and resources but given that is possible.
I receive so much support and encouragement from my fibro friends. It is one thing to have love and support from family and friends but the support we get from each other with this condition is invaluable on a different level. Only others who have lived with these difficult conditions understand how difficult it is to maintain heart and mind through such physical adversity day in and day out. To keep the faith, to realize that we are not alone, to benefit from all our shared experiences. I am so grateful for my fibro friends who I continue to learn from and derive strength and hope. My prayers are with you all as you struggle for a better quality of life. Let me know how you are doing.