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My life with Fibromyalgia
Sunday 29 May 2011
My life with fibromyalgia
I was very happy to see an article on someone with fibromyalgia in the Tribune. This ailment needs to be brought out of the shadows.
I am a 72-year-old man who has suffered with fibromyalgia my whole life. I fully understand how chronic pain can destroy lives. I have seen more doctors than I can remember. I have tried nearly every painkiller known to man, including morphine. None helped for more than a week or two.
I cannot remember when the pain first manifested, but I was probably 4 or 5 years old. The first diagnoses was growing pains, than it was bad arches, than shin splints, than an unknown back problem. I have had countless X-rays, MRIs and CAT scans. Every test has been negative; some of the doctors decided that it was all in my mind. When I was in my early teens a doctor told me that he did not feel the pain was life-threatening and that physical activity would be beneficial. I grew up a farm boy and since the doctors could find nothing wrong with me I worked as hard as any farm boy.
I have continued to search for relief from pain all through my life. It was during a physical at Mayo in the late 1970s that I first heard the word fibromyalgia mentioned. The doctor came into the room to discuss my test results and began this way.
“I have good news and bad news.”
“The good news is that what you are suffering from will not kill you. The bad news is that you may wish it would.”
But he also cautioned me that most doctors did not believe that fibromyaliga was a true condition and Mayo Clinic did not condone a diagnoses of fibromyalgia. Remember this was in the ’70s.
I have read many books and articles on the issue of fibromyalgia, and I have come to the conclusion that doctors do not really know what causes fibromyalgia or how to treat the problem. Doctors do not like to treat it, as there is no test to prove that you have it and no clear recommended treatment. What helps one patient will do nothing for another.
I do know the pain, mental fog, insomnia, chronic fatigue, depression and other symptoms, like frustration and anger, are very real and, if allowed, can become totally disabling. I had to quit farming in the early 1980s because of constant pain; however, a restaurant was not as bad.
I have learned much about fibro in my journey through life. There are many things that will trigger an episode and each person will have their own set of triggers. There are some key triggers that affect nearly every sufferer. Lack of sleep is at the top of the list. Insomnia is very common with fibro. The problem is that pain often makes sleep impossible so you have a vicious circle that feeds on itself.
Excessive stress is a serious trigger, as is cold weather or sudden changes in weather. Some see depression as a cause, but then the pain of fibromyalgia almost universally causes depression. Repetitive motion is a major trigger. Overdoing anything can cause a flare up, but so can inactivity. Staying in bed when you hurt will only make things worse.
The one area where that fibromyalgia can be dangerous, is the difficulty in determining when pain is caused by something more serious than fibromyaliga,ay an heart attack. One needs to be totally attuned to their body and have a doctor who will listen and properly follow up on any new or unusual symptoms.
I am of the firm belief that, within reason, fibro should not be a life changing diagnosis. It is like an old friend that drops in to visit and forgets to leave. At some level it is always with you, hovering in the background. The better physical condition that you are in the more you will be able to do, and it will easier to get through the bad days. For many sufferers getting in shape sounds like an impossible task. It is one you must do with the support of your doctor and family. You can not just dive in and push yourself to the limit until you know what your limits are. Slow and steady, just get off the couch and take a short walk, don’t push yourself. Each day walk a little further. If you walk with a friend don’t get competitive and test your limits, you will only suffer.
Individuals with fibro have a tendency to isolate themselves, because dealing with the pain and mental fog takes all their energy. There is nothing left for social activities. The inability to focus, remember names, dates and make decisions can be very scary. My only suggestion is to not dwell on this problem in does not appear to get worse as time passes. Accept the fact that there will be times when your brain is too foggy to make a sound decisions. This is important because decisions made with a foggy brain are often bad ones.
I have found that, for me, most medications are of very little help and the side effects are often worse than the pain. I use chiropractors to help release trigger points. A good massage from someone trained in trigger point therapy is high on my list of treatments. Powerful hot showers are wonderful. Don’t reject psychotherapy, it is not a sign of weakness. I consider it prudent to seek mental help when dealing with the disorder. It helps to talk to someone who is trained to listen.
I have been through pain clinics three times over the past 30 years. I find the clinics can be of great help if you are determined to function as drug free as possible.
I know diet helps. I have become very careful with what I eat and drink, consuming almost no sugar, do not drink or eat anything containing artificial sweeteners, or drink any thing containing caffeine. I stay away from processed foods and try not to eat anything white. This includes white breads, white rice, white pasta and white potatoes. I also rarely eat anything that is deep fried. My diet consists mainly of fresh fruit and vegetables, sweet potatoes, squash, multi-grain bread, beans, live culture yogurt, cheese, and natural peanut butter. I go light on meats. When possible I eat organic foods, chemicals in the food chain could be a trigger. While this type of diet may seem excessive if in lowers the pain intensity it is worth the effort.
One of the serious side effects of fibro is the potential to gain weight, because when you hurt physical activity becomes difficult and eating becomes a distraction. However, weight gain makes physical activity even more difficult, compounds depression and lowers self esteem.
During one especially difficult period my doctor told me that I had to lower my stress level. He recommended that I get a canoe and a fishing pole and take one day a week off to float down a river fishing. I took his advice but found it to be very boring. So I searched for rivers that flowed faster. This led me to a great discovery — the adrenalin rush from whitewater would temporarily break the pain cycle. I begin searching for more and bigger whitewater rivers. I became an adrenalin junky! Two things happened, slowly I got into the best physical shape of my life and I discovered whitewater racing.
To be continued Thursday …
Don Sorensen is an Albert Lea resident.
The above originally appeared here.
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