Introductory note from husband/faithful companion. An online friend asked Sharon about fibromyalgia aka FMS because a friend had been diagnosed with it. I’ve lost which friend it was who asked her, but this was her response. She wrote back with her very hard-earned knowledge.
Sorry for the delay in my response. Weather and other things.
Simple question…not so simple answer. Though I will try to be brief. If you find that you have further specific questions, I’ll do my best to answer those.
Thumbnail: Kineseology chiropractic, Oriental Medicine, and learning how to do muscle testing. All probably necessary in my case, though none of them sufficient. Though I would give the biggest piece of the pie to Oriental Medicine. As far as I’m concerned, it saved my life.
From the chiropractic, I got some needed nutritional support, introduction to homeopaths (some which were quite useful in tamping down the inflammation and keeping muscle spasms under control), introduction to muscle testing and a ferreting out of ingredients in my foods which were not helping. Most notably artificial dyes and flavorings. Refined sugar (I use Sucanat now which has 2.5 times the mineral content of turbinado). I figured out on my own that I was extremely sensitive to partially hydrogenated vegetable oils (now being referred to as trans fats so that the AMA, etc do not have to take any responsibility for telling people that these were better than butter, etc and probably causing a great number of people to have heart problems 10-15 years before they should have), and did the best I could to eliminate them from my diet in the 80’s before the food trend of fat-free foods. Though “healthful” foods are not always such for me. I do not do well with canola oil…the current darling of the know-it-all/know-nothing idiots. (Sorry, I have a lot of anger about this. But that’s another story.) But the chiropractic adjustments were not holding and, at the same time, I had a student recommending an acupuncturist to me, my chiropractor was saying I should try something that operated on a deeper level like acupuncture.
So, I went into acupuncture, which was more than just needle treatments. Moxibustion, stick and cone; cupping, massage, Chinese patents, Chinese raw herbs (not fun…but effective), magnet therapy (to keep the gates open), and probably some other things. I also read “The Web That Has No Weaver” by Ted Kaptchuk. It’s celebrated its 25th anniversary with updates. He’s currently on the teaching staff of the medical school at Harvard. That book plus hearing the statistic that FMS was worse than smoking for increasing your chances of getting cancer from an orthopedist on TV, told me I was on a time clock. I’m a 17+ years cancer survivor. My acupuncturist did not think I would have survived the surgery two years sooner. My own body sense puts it at one year. When I started acupuncture, it was almost impossible for me to find my own pulse in my wrists and I had trained in First Aid. They could heat points on my back with the moxibustion, my husband would see my back getting red, but I couldn’t feel the heat when asked about it. That went on for 1.5 to 2 years and I was going for treatments 3 times a week at the time. By the time the cancer showed up, I had been in acupuncture for 7.5 years. I wasted 10 years trying to get help in the world of traditional Western medicine. Nada. In the 80’s, half of the doctors didn’t even believe in FMS. Those that did, could only use trigger points to diagnose it. I was 6 months into acupuncture when I heard about literature that the Arthritis Foundation had and requested it. All the trigger points are acupuncture points. Which my acupuncturist was already needling without input from me. Western medicine’s solution was simply to throw sleep medication at it. We all know now that sleep medication should only be used for a crisis intervention. And yet they’re still doing it, just with more dangerous drugs.
FMS is a serious illness. It is also a cyclic illness, being worse at certain times of the year and at certain times of the day. Both of these are predicted by the observational paradigms in Oriental Medicine. And yet, when I last looked a couple of years ago, Western medicine seems to think that 6-week drug studies are useful to determine the efficacy of a drug with regards to FMS. That’s a joke. I’ve listened to the current commercials on the drugs that they’re using and all of the “side effects” are signs that the illness is getting worse. I know, because I went as far as one can go down the rabbit hole with FMS and still come back. At one point, I was in constant severe pain from head to toe. My husband could not even give me a hug without hurting me. I would have given anything then to be where I am today. I still have a few muscle knots that are working on getting themselves cleared out…yes, muscles can be in spasm, not only for months, but years. (One of the things that my first acupuncturist told me, was that I had “body armor”. I may have quit making it, but it’s still being broken up.)
I probably developed PTSD as a teenager. That led to a sleep disorder which in turn, led to FMS. The first thing that they did in acupuncture were “sedating” treatments. The first thing that started to change for me was my sleep. A pin dropping used to wake me up. (One of the signs of PTSD is hyper-vigilance.) Now I sleep through things that wake up my husband (whose super-power seems to be the ability to sleep anywhere at anytime). And with sleep, comes healing. But sleep medications is not the way to get there when it’s a long-time chronic condition and not something that was brought on by a current traumatic event. (Mostly because the medications further stress out the liver and/or kidneys which are already trying to heal themselves.) I don’t know if I’ll ever get over the sensitivity of having the PTSD triggered. But I recognize it and I get back to solid ground as soon as possible. Last year it got triggered when I had a root canal and the local anesthetic they used was laced with epinephrine. [Frank’s note: epinephrine and adrenalin are different names for the same thing, the former more common in American vernacular, the latter more common in the British world and now adopted by the American medical community.] I burned through 4 carpals of the stuff. Which is the maximum that you’re allowed. One of the nutritional supports I received early were for adrenal glands that had been burned out. So, now I have to make sure nobody slips me that again. Because when my body sees adrenalin, it kicks into high gear because it’s expecting a lot more to come. I have no idea of how I retrain my body on this one. Not even going to try. 😀
Anyway, the last was learning how to muscle test. If you’re interested you can google that. I also have a short paper that I wrote up on it. I was eventually shown a very easy way to do it by another acupuncturist (who also introduced me to flower essences). This helped me to fine tune what I did and did not put into my body. It also led me to the discovery that whole milk was better for me than low-fat (which the “experts” claimed was the reverse). I went back to drinking whole milk and my health improved. Many health regimes have more right than wrong…but, we’re all different and the wrong parts can be really bad for us. Also, I never knew when my symptoms flared up if it was something that I had ingested, the weather, or just what was going on with my body. That in itself was stressful. Learning how to muscle test relieved me of a great deal of that. It also led me to Chinese teas which was another piece of the puzzle (the Chinese drink tea mostly for health, not pleasure, and different ones do different things). As a side note, the fact that the pain moves to different parts of the body with FMS the Chinese in treating that refer to it as “riding the tail of the tiger”.
So, FMS is a serious illness. It is not an illness that one should learn to live with. And it is one that, if one can’t entirely heal from, one can stop from getting worse and even lessen the severity of it. Early on, I read in a book from a pain clinic that every 10% decrease in pain, changes ones life significantly. I kept looking for the 10%. I still have energy issues (in my 20’s I would today have been diagnosed with chronic fatigue which to the Chinese is “deficient qi” and which, left untreated, leads to “stagnant and deficient qi” which is FMS and that, in turn, leads to “stagnant blood” which increases one’s chances of getting tumors and thus cancer). Though I have days now that are flashes of my old self. Though I have no idea of the extent of any long-term damage that FMS did to my body or what is just a result of being older. What I do know is I can imagine living out my life like this. When I was in my 30’s, there was no way I would have been able to survive what I was going through for 40 years without jumping off of a bridge. Since that was against my spirituality, I went looking and did things that most people might not have done. Only my husband was truly supportive. Everybody else thought I was wrong. Well, I should be a long time dead, but I’m not. And that’s right enough by me. 🙂 Neither am I on any medications. When my last acupuncturist died I was only going about 4 times a year. And I haven’t gone looking for a replacement, because I don’t muscle test for it yet. Which probably means that I don’t need one right now. I still am seeing a chiropractor (4-6 times a year) to keep me in alignment and adjust things as muscles loosen up. But the body is designed to heal itself and really only needs help when it has been overwhelmed by something.
I tried to keep this short. I know it doesn’t look like it, but you asked me about a 30 year journey. If you know someone who has it, there is some more specific advice that I would give. But I’ll stop now. 😀
Except to say that I like a number of your new signs. I’m taking a break now from collecting miniatures. My brain wants to focus on other projects right now, like trying to organize some of the chaos that results from being sick for so long. But God willing and the creeks don’t rise, I’m sure our paths will cross again. Wishing you all good things. Take care.
Sharon
Musings of a Restless Mind 