Living with Fibromyalgia: What Helps Me
Kathy Gamble, a fibromyalgia patient from Florida, was a long-time moderator and the second Executive Director of the CFIDS and Fibromyalgia Self-Help Program.
When I was diagnosed with fibromyalgia in 1999, it felt like the last straw in my world coming apart.
My divorce had been final the month before, and the year had already been filled with other emotional traumas. While I was grateful that the diagnosis explained the aches and the fatigue I had experienced for several months, having a chronic illness felt like one more loss.
My doctor reviewed with me a short list of options for treatment of fibromyalgia that included medications as well as other treatments such as heat, massage and stretching. He also advised staying as active as possible and suggested something I found amusing: “Eliminate unnecessary stress in your life.”
I was taking only over-the-counter pain medications and did not want to start more medications yet. I preferred to see how I could manage on my own first. I was still working full-time as a nurse and I rarely missed work due to my symptoms. Most days I did okay, so I thought I would just continue on as I always had. I functioned at 75 on the CFS & Fibromyalgia Rating Scale.
Looking for Answers
However, in my second year with fibromyalgia, my health declined. I would come home from work and collapse in bed, unable and unwilling to move. Each morning brought another struggle to get out of bed, and I would drag through work.
This daily grind of dragging myself out of bed, struggling through the day and then collapsing when I got home did not seem to be much of a life. I was too exhausted to do anything else that had been helpful to me before – all I wanted to do was rest!
But I knew I couldn’t keep on like this, so I started to look for more answers. The thought that there might be other ways to manage this condition motivated me to look for more information on fibromyalgia. Usually if one is ready to learn, the teachers appear and I found this to be true for me in this case.
One teacher was a book by Stacie L. Bigelow titled Fibromyalgia: Simple Relief Through Movement. The author compared the muscles of a person with fibromyalgia to wet concrete. She stated that if muscles aren’t moved frequently, they can stiffen and set, just like real concrete does. She explained how movement can assist with feeling better from the pain of fibromyalgia.
I found this book to be extraordinarily helpful. It distinguished between “movement” and “activity” on the one hand and “exercise”. I learned that I would feel worse if I stayed in one position for too long.
I began to pay attention to how long I was sitting in a meeting, working at a computer, or even lying down and resting. I found that a change in position, moving around, or walking briefly, meant less soreness and stiffness.
Self-Help and Guaifenesin
Shortly after reading the book, I started exploring the About.com section on Chronic Fatigue Syndrome and fibromyalgia. This is where I found out about the CFIDS Self-Help course, now called the CFIDS & Fibromyalgia Self-Help course. The course was described as a “blending of Cognitive Behavioral Therapy with group support and principles of self-management”.
The description was appealing to me, because it seemed consistent with what I was gradually learning: that I was the best manager of my condition and could learn what was helpful and what was harmful to me. I signed up.
I found in the class that there were other people like me across the US and in other countries. Plus, there seemed to be hope, as specific behaviors were identified that could help to manage the symptoms. The course textbook alone would have been a benefit, but to have a group that worked through the chapters together was even better.
I also continued to explore the CFS/FMS section of About.com. It was here that I first read about the guaifenesin protocol, and people who claimed wonderful responses to this treatment. I checked out a linked website: www.fibromyalgiatreatment.com . I was intrigued, so I ordered the source book, What Your Doctor May Not Tell You About Fibromyalgia, by Dr. Paul St. Amand.
I started the guaifenesin protocol on my own, as I am a nurse and since I had taken guaifenesin previously for coughs. After only a few days, I noticed that I had some energy again. My energy kept improving for the first month or so, and I didn’t seem to have any of the expected worsening symptoms.
But then I experienced the first of several “reversal cycles,” in which my symptoms worsened and I felt as bad as before starting the treatment. But these have faded over time and I credit guaifenesin with helping to improve my quality of life.
What Works for Me
In the initial years after my fibromyalgia diagnosis, I encountered various treatments, activities, and learning experiences. I really wanted something to “cure” my fibromyalgia. I wanted to get rid of this condition, like taking an antibiotic for an infection.
I know now there is no single panacea for treating this condition. But I have discovered ways of being and coping that have worked for me in managing my health with fibromyalgia. Here is what I have learned so far, what I have found helps me:
- Resting – I rest when I need it, and also when I think I don’t need it. When I listen to my body, it tells me when I need to rest. I do much better when I listen and respond appropriately than when I ignore what I am trying to tell myself. I had to learn to rest, as I was used to using my time “productively.”
I had to learn to stop and rest, and use the self-help course’s definition of rest: lying down with eyes closed in a quiet environment. Being on the phone or watching TV while lying down did not qualify as rest.
- Sleeping well at night – My outlook on life improves dramatically when I have had a good night’s sleep. In contrast, if I am awake all night or even part of the night, the next day is difficult.
To help me sleep better, I had to quit staying up late, eliminate stressful evening activities (like being on the phone), and identify what could help me get a good night’s sleep. This includes going to bed by 10 p.m., taking 20 to 30 minutes for reading or prayer, and using medications, as described in the next section.
- Taking medication as needed – Besides the daily Guaifenesin, I take Ibuprofen (Advil, Motrin) or Acetominophen (Bylenol) during the day for headaches or pain as needed. I also have two prescription medications, including a muscle relaxant that I take at night, which helps me to go to sleep and stay asleep.
- Using low heat – Either a heating pad or an electric blanket, depending on how much and where I ache. If I turn the heat up past low, I start to feel worse. A warm bath also helps!
- Avoiding certain foods – I read the Sugarbusters book, The Zone, and the dietary guidelines in the book on guaifenesin. While I don’t adhere to all their principles, I do feel better when I keep to the guidelines than when I don’t, particularly in avoiding foods with white sugar.
- Moving/activity – I feel better if I take “walk breaks” at work or have some sort of change in position if I have been sitting for more than 30 minutes. As mentioned earlier, I learned this from reading Stacie Bigelow’s book. Mild stretching in the mornings or in the evenings also helps to decrease some of the aches and soreness, particularly in my lower back.
- Being aware of how I feel – Denying my pain and not paying attention to myself and how I feel can lead to my feeling worse, so I have learned to adjust and do what helps me. At the same time, it doesn’t help me to ruminate on how bad I feel, because then I feel worse and notice the pain more.
- Limiting social activities and having a quiet home life – Being around a lot of people can be draining and I am in that situation every day at work. So when I get home, I usually just keep to myself. It helps me to be at home in quiet surroundings and to be peaceful. I can catch up with others as needed on Facebook or through email.
- Planning for work – It helps me to have some control over my work hours. Having to be at work very early or staying late is hard on me but manageable one or two times a week, as long as I plan for how I will make up for it on other days. Also, I have learned that I am more effective if I set a limited number of priorities for each day. Otherwise, the details can overwhelm me.
- Reframing – I don’t have control over what happens in my day, but I am working on determining how I will react to what happens. Sometimes that means choosing not to react or not to respond. For example, I get a lot of emails at work that contain new assignments or requests for information. Some are rather demanding.
If I responded immediately to every one of them, I would spend time and energy on things that may be better handled another way. Now I choose whether to respond immediately or answer later when I have had an opportunity to think it through or talk with others first.
Sometimes I choose not to answer at all, and that has helped me on several occasions. I have either followed up with a phone or a conversation in person to explain. These strategies have often kept me from reacting negatively to uninvited demands.
- Scheduling in recovery time – By scheduling planned time to rest, I can help defray some of the excesses as they come up. For example, if I have to stay late at work one day, then I may leave early the following day.
Likewise, when I have company during holidays, I set aside days before or after when I can have time by myself to rest. By planning for and scheduling my needed recovery time in advance, I am more likely to stick to it. This strategy helps me decrease additional pain or flares from overdoing.
- Seeking help from outside sources – When life became too much for me, I sought help from outside sources. I have participated in some online and in-person 12 step groups, and I have had a wonderful counselor. Both were extraordinarily positive experiences.
Also, allowing and requesting help from others has been helpful. Sometimes this has resulted in positive development for others, as well as decreasing my burden tremendously.
- Praying/meditation – I have found that particularly in times of increased symptoms, simply to be quiet and reflect or pray can have a very calming effect.
- Scheduling massages – It may be painful at the time, but I usually feel better afterwards.
- Utilizing aromatherapy – Particularly lavender and some of the citrus scents, either in candles that I burn or in lotions.
- Taking the self-help follow-up courses and participating in the alumni group – I participate in two groups that were offered to graduates of the introductory CFIDS & Fibromyalgia Self-Help class: followup courses and an alumni group. The followup courses focus on helping people reach short-term goals. Despite knowing what I need to do to manage fibromyalgia, putting it into practice is not always easy.
The followup courses have been one of the best opportunities for putting knowledge into practice through making weekly targets. Even when I don’t meet my targets, I learn more about myself and what I can do to manage this condition.
The alumni group provides an opportunity for ongoing support plus discussion of topics related to living with chronic illness. We all continue to learn from each other through our responses. We also can keep up with one another through the monthly “check-ins” with our responses.
- Making a NOT TO DO list – I pickup up this wonderful idea for me from one of the other articles on this site! It helped to know what things I consciously wanted to avoid.
Over all, my quality of life has improved dramatically using the strategies I’ve described. I rate myself currently at 90 on the CFS & Fibromyalgia Rating Scale. I am not back to “normal,” but I’ve learned that that is OK. I don’t want to be as driven as I was before getting fibromyalgia.
I have a clearer understanding now of my boundaries and I do well as long as I stay inside them. It took some time, but I finally learned that I have to respect and honor my body, and listen to the messages it gives me. The messages are to slow down, to learn to “be” and not just “do,” and to focus on what is really important.