Wednesday, June 2, 2010

Fibromyalgia Experiences

Interesting to read these posts*, and of course, the studies mentioned (I followed the links and read everything I could get to online). I have had FMS (diagnosed that is) for a little over 15 years. Since I have a sexual abuse history (starting at age 5) and on a totally different tack had to have antibiotics a lot as a child due to recurring tonsilitis and strep, right there are two potential causes. What happened 15 years ago is that I suffered two years of increasingly severe anemia which was not diagnosed accurately and subsequently the fibroids I had growing in my uterus became huge and numerous, very agressive, and I had to have a partial hysterectomy (which I had to lobby for since those are not common here in the US - I wanted to keep my ovaries so that I wouldn't have to go through menopause until it occurred naturally and my cervix so that I could maintain natural secretion production for as long as possible and maintain as much abdominal architecture as possible). The operation was a huge success for me in many ways but the trauma of the anemia and then the surgery led to the onset of type 2 diabetes as well as my FMS hitting me full force.

I started doing yoga when I was 13 and studied non-Western forms of medicine and alternative medicine from about age 20 so I have tried just about every treatment and lifestyle adjustment that's been suggested in the area of auto-immune disorders and the mediation/healing of trauma-induced conditions. I have also tried all of the treatments/meds given to me by practitioners of Western medicine. Many things have helped, but none have been fully sustainable over time and throughout different situations I've been in physically/emotionally/financially. My ongoing goal and struggle is to find more efficient ways to combine the various treatment options available to me so that I can lead a relatively normal life.

Currently, I would say that certain things absolutely work. Some of them are within my reach and others are not. My optimal situation would be to live in Hawaii where, because of the more or less constant heat of at least 75 degrees F and the tradewinds to mediate temperatures above 80 degrees F, I have experienced almost total reversal of all of my FMS symptoms. I've been twice and each time, though different times of year, I have experienced this amazing transformation from fairly disabled by the chronic pain to being almost completely painfree, sleeping well, moving fluidly, and having a steady energy level. It takes about 48 hours to achieve after arrival and about 48 hours before the effects revert upon arriving back home. Sadly, I cannot live in Hawaii but it did show me that I can have that level of health in the right circumstances. I have added that knowledge to how I treat my symptoms at home in Northern California (which is notorious for temperature changes of as much as 30 to 40 degrees in a single day in spite of it being sunny a lot of the time). I make sure not to leave my extremities uncovered for long and I never turn the thermostat lower than 73 (I hate having to go against energy usage green standards but this is crucial for my ability to function physically so I had to make that choice).

I had very good results in terms of pain management for a few years using high doses of magnesium leading to my being able to decrease my use of pain medication (Vicodin was the only one of the many options I was given which ever worked and it only cut the pain back to bearable as opposed to unbearable) to none. Sadly, after a few years of taking magnesium at high doses, I had other problems. My vitamin D levels were dangerously low and I was low also in potassium and some other necessary minerals. So, I've had to remove magnesium as a supplement from my treatment options. This has led to an incredible increase in pain since I was loathe, at first, to go back to Vicodin (which exacerbates my IBS - irritable bowel syndrome).

I have always used subliminal tapes and guided imagery meditation tapes to aid in physiological and psychological balance - to help me let go of the effects of the traumas I've experienced from an early age (only one of which I have mentioned here), to help me sleep, to help me fight depression and to help me adapt to and mediate pain and/or limited mobility. I have only recently (in the past 3 years) discovered Belleruth's tapes (through the Kaiser HMO which stresses prevention and doesn't dismiss alternative medical practices). I find them to be very helpful.

As Barbara says above, exercise can make things much worse for me. I must have physical activity though or I feel there is no point in living. I studied dance from age 4 through to age 21 and I studied martial arts from age 20 through about age 30. I love to walk, cycle, swim, dance, do tai chi, etcetera. But, it's not just the pain which comes with these activities which makes them almost impossible now, it's the hypertense muscles I have now... I am prone to muscle tears and prolonged bouts with tendonitis, pulled muscles which take forever to heal, etcetera. In order to be at all active, I am dependent on hot baths/jacuzzi baths/heating pads, massage, acupressure, AND a muscle relaxant twice a day.

I have a Wii game system and use that at home (the Wii Fit is pretty awesome), I cycle when I can, and I go to the gym/pool on a regular basis twice a year for about 4 months. After that, I have to back off for a few months. I have severe allergies to animal dander, house dust, and some trees so I can't just walk outdoors for exercise as I would like to. I have to be in a controlled environment such as a gym where I can also avoid other people's perfumes/colones and the animal dander on their clothes. More physical activity, albeit not the kind of strenuous activities I love with a passion, would give me more flexibility and keep my muscles warm but I am still struggling with how to keep it up. Firstly, it's not exciting or fun so my motivation has to be intellectual. Secondly, even the mildest form of exercise can lead to muscle tears and other injuries which then cause me more pain and make me less active. I feel there is an optimal balance but haven't found it yet. I do make sure to keep moving and do mild stretching every morning and evening.

I have had huge success on the pain front, in terms of my mood, and in terms of my overall health when I've been able to see an acupuncturist on a regular basis. Like the Hawaii solution, however, it comes at a price tag I cannot afford. Ongoing chiropractic and/or acupuncture treatments can be the equivalent of a car payment every month and I am on a fixed income (had to take early retirement for health reasons and yet did not qualify for disability payments). The same holds true for massage, though I have a little more trouble with that for psychological reasons harkening back to my childhood abuse. I find it hard to let someone I don't know well touch me in what feels like an intimate way. For various reasons, that does not come up when I'm having chiropractic or acupuncture treatments.

So, I do what I can, try to keep open to changes in my routine and treatment plans, forgive myself when I can't live up to my own expectations, and research everything I can concerning new treatments and diagnoses. Probably the best thing I do for my health is pursuing my 'hobbies' such as singing and composing, drawing and printmaking, learning and maintaining fluency in various languages. I do as much as I can not to lose touch with the outside world and to be active in social groups and communities which are meaningful to me and keep in touch with friends and family. Being lost in creative endeavors or other mental work, social activities (even if only from home through the internet), and feeling one is part of a larger whole all put health into the proper perspective. As I always say, be well but if you can't be well, be happy. Being happy is a state of mind which is more under your own control than most people think and that's what I've learned in all of my study of non-Western practices and in the process of healing from the traumas I've experienced in life.

Laughter and curiosity are my most powerful tools in life. Community and relationships with other people are my proudest achievements. Creating things of beauty and meaning, whether songs or poems or artwork, leads to my deepest feelings of satisfaction and growth.

I hope some of these musings will be helpful to people reading this thread as other comments have been to me. If you ever want a quick boost to your mood, come listen to one of my songs, for example this one:



* Written in response to an article about new studies in the diagnosis and treatment of fibromyalgia in Belleruth Naparstek's HealthJourneys e-letter, and some comments to that article by other readers - 6/2/10 -