My Big Relapse

Last year at this time I was optimistic about my apparent recovery from fibromyalgia. I thought that a medication I had been taking was the source of my fibromyalgia symptoms because when I had to discontinue it, I felt much better. I explain this in my blogs:  http://brokenbutbeloved.blogspot.com/2008/09/surmontil-shortage.html and http://brokenbutbeloved.blogspot.com/2009/01/fibromyalgia-is-gone.html

However, I ran into a roadblock last July (around the time of the hailstorm) when out of the blue came a major relapse. Something must have triggered it but it was so sudden and unexpected. Perhaps I pushed a little too hard with my lap swimming. Anyway, it sent me crashing over the edge and wham; I was hit hard with all the old symptoms; crushing overwhelming fatigue, malaise, pain and brain fog. I went from being fairly active everyday to feeling too ill to do anything. Although I still thought it was a good thing that I was forcibly weaned from Surmontil, I had to admit that I had a peculiar health problem. I lacked energy to do anything but the most fundamental activities. For the last part of July I spent two weeks doing as little as possible and with rest and careful pacing I gradually built myself back up to a tolerable level.

It was during this time that I discovered the term post-exertional malaise. http://brokenbutbeloved.blogspot.com/2009/07/post-exertional-malaise.html All along this had been the symptom that baffled and plagued me most yet I didn’t have a name for it. It was very frustrating trying to explain this phenomenon to others. No one seemed to get it. Even my various doctors failed to understand. It is the symptom that is aligned with CFS rather than fibromyalgia.

It became clear to me that I had been misdiagnosed. Fibromyalgia and Chronic Fatigue Syndrome are closely related but my symptoms definitely fall in line with CFS rather than Fibromyalgia. I felt frustrated that my doctor failed to recognize that. But from this point on I embarked on learning everything I could about CFS.

Activities for August were already planned and it was too late to change them. Blind optimism and a bit of denial persuaded me that I would be able to handle everything with ease. Sarah and Henry were to fly from Massachusetts to visit us for ten days and I had been looking forward to that very much. We invited Kim’s parents from Illinois as well so Sarah could visit with them and they could enjoy their great-grandson. The family time was great and it was especially precious to spend time with my grandson. But the effort to be a good hostess was excruciatingly difficult. On top of that I had a trip planned to Scandinavia for the latter part of August. I love travel and was very excited about that trip. On the outside everything went well but on the inside I really struggled. I was in pain the entire time.

When I returned from the trip I collapsed. It took three months to return to a reasonable level of function and three more months until I felt “normal.” During the hardest times I felt forced to step off the road of life and hide like a wounded animal.

What really helped me during this time are my ‘internet doctors’ who gave me hope and a means to cope. There are two that stand out. Nadine Sauber’s colorful blog http://healthosity.blogspot.com/ gives me information about diet and other aspects of recovering from CFS.  Bruce Campbell’s blog http://www.recoveryfromcfs.org/ and Fibromyalgia/Chronic Fatigue Syndrome Self-Help program http://www.cfidsselfhelp.org/ has taught me the supreme importance of pacing. Not only do they give me a lot of information and guidance but they also encourage me when they remind me that I’m not alone with this condition.

I have learned that I cannot rely on traditional medicine to help me. Maybe there are some medical doctors out there who understand and know what to do for patients such as myself but I despair of ever finding one. I have had too many bad experiences and it is simply too expensive to keep looking. Doctors either prescribe medication or do surgery. Obviously there is no need for surgery for CFS and drugs only seem to make the condition worse. Recovery for some chronic health problems such as CFS must be done by the patient—basically taking super good care of oneself. This is summarized in Nadine Sauber’s healing formula: Real whole food alkaline diet + restorative sleep + elimination of toxins and stressors + being positive and hopeful + regular graded exercise and pacing + consistency + time. I would add ‘relaxation techniques’ such as meditation, progressive muscle relaxation, biofeedback and breathing techniques.

With strict adherence to this formula one can recover from Chronic Fatigue Syndrome. Although my healing isn't complete, I have come a long way and I have read about others who have had substantial recovery.  Many people are lucky enough to be healthy by default. Others of us have to learn or relearn what good health is all about. Most doctors don’t do education and that is what CFS sufferers (provided they don't have another medical condition) need most.