FIBROMYALGIA PATIENT STORIES
LIVING WITH FIBROMYALGIA, FRUSTRATION
AND COPING SKILLS
BY: Janice Sumpton, BScPhm; London, Ontario; POSTED: July 2021
I want to share with you the frustrations of living with pain and how it affects me every day, its impact on my family, and ways I have found to cope with the intrusiveness of persistent pain. The frustrations of chronic pain are many. Pain is always present and I can not escape it. My pain began at age 38. I am happily married with two children, ages 6 and 8.
There is the frustration of waiting years for a diagnosis.
The pain and overwhelming fatigue are real. As a health professional I know there aren’t always answers, but as a patient I need an answer. Fortunately, I have a very supportive family doctor who referred me to specialists to find an answer. After10 different specialists, multiple tests and invasive procedures, a rheumatologist diagnosed fibromyalgia. It is a complex disorder with constant pain throughout my body, overwhelming fatigue and difficulty thinking(cognitive impairment). In addition ,many other symptoms are pieces of the puzzle. I felt relief when given a diagnosis, despite the news that pain would be with me the rest of my life. I could now put on my pharmacist hat and find out everything that I could about fibromyalgia so I could live with this condition the best way possible.
The most frustrating aspect of pain is that it is invisible to others.
Pain is what the patient says it is.
My muscles feel like I'm going through the worst flu ever. The pain is throbbing, twisting, burning, aching, tingling or like a knife turning inside muscle. Sometimes it feels like a bug or snake crawling under my skin and I feel it moving. In the evening when I can finally sit down and rest, my ankles and feet are so uncomfortable that the only relief is to move them constantly, stand, or walk, which is the last thing the rest of my body wants. My pain affects what clothes I can comfortably wear. Only soft, light clothes are bearable because light touch to the skin is painful. The soft brush of my dog’s wagging tail hurts my legs.
There is frustration with the stigma of fibromyalgia.
This disbelief is prevalent among many in the medical community. There is a lack of education about fibromyalgia. It mostly affects women, and many people feel patients are “a bunch of whining women”. That hurts. Despite that most fibromyalgia patients are diagnosed by a rheumatologist, I have had some rheumatologists refuse to give me a steroid injection in an inflamed joint because I happen to have fibromyalgia. I am grateful to the doctors who have risen above the stigma and criticism from their peers, who care for fibromyalgia patients. I also thank the scientists who continue research to find the underlying causes of pain and find effective treatments.
Despite great strides in understanding the causes of fibromyalgia, and official label indications for 2 or 3 drugs in Canada and the United States respectively, many don’t believe fibromyalgia exists.
There is frustration with how chronic pain affects the relationships and activities I have with my family.
I used to be an avid skier. For many years this was a family activity with my parents and sister, every weekend. My husband and our children skied together, continuing the weekend tradition. Then with the pain came poor balance so that I could not ski anymore. I grieved that I could not participate in this family activity which had become so much more than just a sport. My children would ask time and again, “Can’t you ski with us? It used to be so much fun”.
My family bears the brunt of my pain and exhaustion at the end of a work day, especially when I need to crash on the couch. I am irritable and that isn’t fair to them. My poor memory is frustrating for me and my children who have to say things over and over again. My husband is very patient. I can’t walk as quickly as I used to. A heart-wrenching comment from my child as we were walking in a shopping mall was, “I liked it much better when you could walk fast like you used to.” I liked that too.
Poor sleep is frustrating.
I don’t feel rested or restored, and poor sleep worsens the pain. It can be difficult to find a comfortable sleeping position. Sometimes it is necessary to remove the covers because they are too painful touching my skin.
The unpredictability of the pain is frustrating.
I cannot plan ahead. A bad day can come out of the blue and I am sidelined.
I practised as a hospital pharmacist for over 36 years before retiring two years ago.
I may have struggled to get up, get dressed and out of the house, drive to work, and be in such pain that I just want to turn around, go back home and crawl into bed. Then I walk into work and am greeted by a colleague who says “You look great today!”. Politely I answer, “Thanks.” and try to focus on work. There is nothing outwardly obvious to indicate that I am in pain, no cast, no sling, no stitches, nothing. To the outside world I appear competent and productive at work. I pick up groceries on my way home, cook dinner and have quality time with my family. After all, that is what I accomplished in my other life before pain. Now I feel guilty when I can no longer be the wife, mother, friend and pharmacist I used to be.
Work restrictions are frustrating. What do my peers think of my reduced responsibilities? It means more work for them. Do I look “lazy” to them?
I became a pharmacist to help people. Now because of pain and non-restorative sleep, there are duties that I am unable to do. I feel guilty that I am not pulling my weight, even though I am doing the best I can.
The more stressful the environment is, the greater the impact on pain, thinking, and fatigue. The pain is heightened in a work environment which is noisy and busy with multiple demands. Fibromyalgia increases my sensitivity to noise, smells, and temperature changes, which are common in a hospital environment.
I can no longer juggle many things at once which I was easily able to do in the past. Fibromyalgia has robbed me of that skill. As a person who likes to be busy, it is frustrating when my body fails me and I have to lie on the couch and do absolutely nothing.
I do not like myself when I am irritable because of the pain.
I can't stir a pot of pasta, can’t fold the laundry, can’t knit (the best relaxation tool I have) because I hurt too much. I feel that I have let down my family, my friends and my co-workers.
I have learned different coping skills which help me to do the best I can.
I rely on my family and friends to be understanding, especially when I need reminding to look after myself, and take a rest. My family is very good at reading my irritability barometer and tell me to sit down when I continue to do more than my body allows. I am only a patient when I am at a medical appointment.
Accepting the “new me” takes time. Grieving the loss of the “old me” is necessary.
I must remember that the soul of who I am has not changed.
Learning to ask people for help is very difficult, especially because I am an independent person. I am still struggling to learn this skill even though I know the benefits. Asking people to help with chores will save me energy to do an activity that is a pleasure to me.
I have coped by reading, and attending conferences to learn everything I can about fibromyalgia and chronic pain.
Knowledge is power.
I have written articles in peer-reviewed journals and web-based modules, and given lectures to physicians and health care professionals on chronic pain. This helps me by using my pharmacist skills to advocate, increase acceptance and expand the knowledge of health care professionals.
I became a support group leader to persons with fibromyalgia. This allows me to pass along knowledge to them, and provide a network where we can support each other. I was on the Board of Directors of the Canadian Pain Coalition for many years which gave me another way to help fellow Canadians suffering with chronic pain.
Letting others know that I have chronic pain and fibromyalgia is a difficult and huge step.
How much information I share depends on my comfort level. Becoming more public with my chronic pain, fatigue and thinking challenges helped me to cope. It was a load off my shoulders. An article about my experience with pain along with my picture appeared in the city newspaper. As a result of the article many people in pain contacted me with their questions. It helped me knowing that I could help them.
I reduced my work-week from5 to 4 days to give me rest time and ability to do activities I wanted to do.
Not working every Wednesday gives me breathing space between two work days. It comes with decreased income and missing things that happen that day at work. But, what I gain in physical, mental, and emotional rest, is well worth it.
I have learned to pace my activities.
It is the best coping tool in my arsenal, but it is the hardest one to do. Pacing allows for rest periods in the day. It requires thinking differently. Everything does not need to be finished in one go. Listening to what my body is telling me (sometimes screaming), is learning how to live differently. Rest more on “bad pain days”. On “good pain days” I try not to overextend myself because I pay for it on the following days.
Relaxation techniques help decrease stress and pain.
Finding an activity that works for you is most effective. I have found deep breathing helpful and it can be done anywhere. Where possible I remove myself from situations if the environment is increasing my pain and worsening my cognition.
Therapy benefits of my dog help decrease pain
I have had golden retriever dogs for many years and their faithful devotion has helped me cope. The endless love and comfort they give me is tremendous, no matter how much I hurt, and how little I have been able to do in a day.
While I had to give up skiing I still have hobbies that relax me and help with the pain.
The accomplishment of knitting and the gentle rhythm of the needles and stitches is relaxing. The serenity of my garden, whether I am glancing at its beauty, or working in it on “good days”, is rejuvenating. Going for a walk, even a short distance to get fresh air and some exercise is very helpful. Listening to soothing music is restful and helps me to gear down at the end of the day, to have a better sleep. I try to sit down with a cup of tea as soon as I get home from work so I can de-stress. Even 20 minutes helps give me energy for the evening with my family.
I have found some pain medications and sleep medication helpful to decrease my pain and reduce the number of “bad pain days”
Accepting assistance, while very hard to do, can be very beneficial.
After repeated suggestions from family members I got a Handicapped Parking Permit. This has been one of the most helpful aids. I conserve energy and decrease pain by parking closer to the door. The wider parking space makes it easier to get in and out of the vehicle. After much procrastination I began using a cane to improve my balance and increase my endurance in walking. This has helped my balance and I am not as tired when I get home. I have a few different canes, all of them pretty and in different colour combinations, to match whatever outfit I am wearing. A rollator at work to carry essentials in the basket and use it to help with keeping my balance significantly reduced my pain.
My coping mantra is: Try to live in the present, think positively, and be thankful for those “good pain days”.
Be kind to yourself.
Adapted from Book entitled: Working Together When Facing Chronic Pain; A book designed for patients and written by their health professionals. Editor Louise O’Donnell-Jasmin © 2010 Les Productions Odon Inc.
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