Living with Fibromyalgia: A Personal Account

I was diagnosed with fibromyalgia when I was 16. My most vivid memory of that year is of lying flat on my back on the floor, trying to fight through the severe pain and follow along with the peppy host of the 7 am television exercise program my doctor had vaguely recommended for me. I remember barely being able to see the TV through tears, and fighting to ignore the words that kept flashing in my head: ‘incurable’ ‘hereditary’ ‘no one really knows what causes it…’

My two older sisters struggled with various symptoms, but because one of them had another condition which masked the symptoms, and the other was the sort who simply didn’t complain about aches and pains, they were not diagnosed until both were in their twenties. By this time I had come to grips with it and found ways to combat the symptoms, and so was able to help in a limited way, both physically and psychologically. Fibromyalgia is a terrible thing to be diagnosed with in any case, but since the symptoms are affected strongly by stress, having someone you can talk to, who understands what you’re going through, can make all the difference sometimes.

Speaking of which, I suppose a good place to start would be with the mental aspects of fibromyalgia. Although this chronically painful condition has been attacked with a plethora of strategies, including drugs, exercise, supplements, etc, there is at present no definitive cure. This can be devasting knowledge for a person who finds themself at the level of suffering frequently experienced by those who have fibromyalgia. Family members and friends, please note: the time just after someone has been diagnosed and is coming to grips with the situation is a time when a supportive, caring attitude is vital. This is not the time to make suggestions on how they can “pull themselves out of it” or to distance yourself because of the person’s increased neediness. Just like anyone diagnosed with a chronic illness, they need some time to find center and learn acceptance of what is going on with their bodies, to find a livable range between not pushing their limitations at all and coping with the effects of pushing them too much.

A good thing about the stress-pain relation of fibromyalgia is that accepting is as the new norm often reduces the initial burst of pain caused by the stress of being diagnosed and having such a huge lifestyle change, since the mental trauma does fade with time for most people as they get used to living with fibromyalgia. Also, stress is something most people, however reluctantly, can find ways to reduce in their lives. Physical exercise is one thing almost all doctors recommend for fibromyalgia sufferers, since it affects the body positively in many ways that seem to alter the level of pain experienced. Curiously, one of my sisters is the exception that proves the rule: she has severe pain when she is on an exercise regimen of any sort, and has found the most pain relief in adopting a low-carb diet that includes all-natural foods. However, for most sufferers, experimentation has shown, as in the case of myself and my other sister, that excercise plays a large part in reducing fibromyalgia. It seems likely that the benefit is linked to the fact that exercise destresses you and combats depression, two key issues for fibromyalgiacs.

Other strategies that my sisters and I have found that help are supplements such as zinc, fish oil, glucosamine chondroitin, folic acid, and melatonin. Barometric pressure seems to affect pain levels for all three of us, whether because of physical effects or the mood caused by lack of sunlight. For all of us, cold rainy weather brings more aches and pains, as for arthritis sufferers. In fact, near the beginning of its emergence as a recognized medical condition, fibromyalgia was often mistakenly diagnosed as arthritis. If a person has SAD, and even if not, therapies such as the occasional visit to a tanning salon, and buying natural light machines may help. Massage has made a huge difference for me, as have regular visits to a good, gentle chiropractor. If you are lucky enough, as I did, to find a chiropractor who is also a neurologist, stick with them, as conventional chiropractic treatment may be high-impact for some and cause more initial pain than progress. Also, some suffer extreme skin sensitivity, which can make therapies like massage and chiropractic nearly unbearable. For these, my observations suggest that diet will be their best bet for reducing pain and sensitivity – my sister reported a reduction of around 75-95% in pain and skin sensitivity after switching to a low-carb, whole-foods diet.

Regular, uninterrupted sleep seems to be another vital necessity for fibromyalgia treatment. This is ironic, since once of the problems commonly associated with fibromyalgia is insomnia. Melatonin and other supplements help some people get more and better quality sleep, personally I didn’t notice a significant difference, in fact only one of us has found sleep aid from supplements. For me, the main thing is a regular bedtime and waking up time. Setting your alarm to avoid sleeping in mornings can prevent a day of increased aches and fatigue. A way to combat fatigue and its effects on functioning, at work or school, is to change activities frequently when possible, as this rests tired brain cells, which get fatigued from doing the same thing over and over just like muscles do, and lets you only do each thing as long as you have the brain power. For example, if you find yourself nodding off reading or doing homework, get up and do something physical, or more visually stimulating, such as television or even computer/video games,for a few minutes before going back to work. Taking a snack break can also help.

Finally, remember that it can be overcome. While different things work, or fail to work, for different people, almost no-one is completely resistant to treatment. There ARE strategies that will help you, it’s simply, at this stage, a matter of trying out various treatments and finding those that affect you most. Stay healthy, mentally and physically, as much as you can, and seek out the people you need at each stage in life. You will know who they are if you look at yourself from time to time and see where you are going, mentally and physically. Sometimes you need the brisk, stimulating sort of person and sometimes you will just need a shoulder to cry on. Try to keep a balance, and don’t push people away yourself because they don’t seem to be helping you – you will need and appreciate their unique capacity for helping you at some point.

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