My life with fibromyalgia

Published 9:49 am Wednesday, May 25, 2011

Column: Don Sorensen, Guest Column

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.

Don Sorensen

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.

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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.

I am not a natural athlete. I am a slow learner, but the pain was subdued while I was learning and that is all that mattered. Yes, there were many times that I over did it and suffered. I slowly discovered my limits and for over 25 years adrenalin was my primary pain killer. I actively raced until my early 60s. I still paddle moderate whitewater when the opportunity presents itself. The adrenalin rush has never failed to help.
I and now retired and painfully aware that inactivity leads to much higher pain levels. So I did what I recommend every fibro sufferer should do, I found activities that I could focus my attention on totally. I like to travel, hike, photography, rebuilding old cars and yard work. If I am at home and am having a bad day I go out to the shop and work on one of my old cars. Focusing on what I am doing will push the pain into the background and give me some relief for a few hours.

Six years ago I discovered rock climbing. Now this is not an activity that anyone with a sound mind would prescribe for an old man suffering with pain. However, I found it to be liberating and exhilarating.
The uninformed believe rock climbing is only for super strong youth with a death wish. I am not that strong nor in the best of shape, but I find climbing to be mentally challenging and it has allowed me to conquer my fear of heights. While climbing one must focus totally on the rock, in doing so pain is pushed to the back of one’s mind, I can be having a bad day, but once I am roped up and climbing the pain diminishes.  The relief can last from a few hours to a few days. I rate myself a moderately skilled climber. I am not embarrassed to climb with college kids and they think that it’s cool to see an “old man” climbing.

Yes, I push my limits, but I do so in a slow methodical rate. Last summer I climbed the Devil’s Tower in Wyoming with my daughter, her son and husband. Did I over do it? Of course and, yes, I suffered for a few days but the accomplishment more than made up for the pain.
To be honest fibro has transformed my life for the better. It may sound strange to credit pain with positive life experiences, but if it were not for the pain I never would have discovered whitewater paddling, or would I have become an Olympic level judge who has worked at all levels of whitewater competition across this country and Europe including the Olympics in Barcelona, Spain. It has been a wonderful life and much of the credit must go my efforts to deal with pain.

I am not recommending that fibro sufferers take up whitewater paddling or rock climbing.  I do, however, strongly suggest that you get up off the couch and get on with life.

Find an activity that you can immerse your mind and body in. Fibromyalgia is not a death sentence, you can live a good life. You will need to accept the fact that there are things you can no longer do, but if you look you will find other activities you can do that allow your mind to over-rule pain. Don’t do any activity that you do not enjoy. Forcing your self to do something you don’t enjoy will only make fibromyalgia worse. Do give new things a try you may be surprised at what you enjoy. Stop feeling sorry for yourself (very hard to do) accept the fact that you hurt, and probably will for the rest of your life. There will always be bad days. Never stop searching for relief. Live life to the fullest — it is too short to be spent dwelling on pain.

Don Sorensen is an Albert Lea resident.