What Is Going On In My Body?

Everyone that has fibromyalgia has a slightly different story about their symptoms and how they developed. Women tend to have more rapid onset of fibromyalgia symptoms than men. In addition women tend to have a greater number of the recognized symptoms than men do; however, this is very individual. Reading about one woman’s journey to a final diagnosis of fibromyalgia is an informative and educational place to start to better understand just how fibromyalgia develops.

Jodie’s Story 

Jodie was in her mid thirties and single. She enjoyed her life as a single woman and was always busy, was very popular and full of life. At work she was a real go-getter and was constantly taking night courses to put herself in line for a promotion. As a local retail store manager she was on her feet 10 to 12 hours a day and then often did hours of inventory and sales reports and evaluations when she got home.

Jodie loved her life and, as a way to increase her income, she applied for a regional management position with the retail chain. She went through the initial exams and interviews and got the job, along with the mandatory training course that she also had to take. Her job now included supervision of over 50 regional stores, training staff, balancing a budget, ordering, maintaining inventory and being on the road approximately 60 percent of the time to ensure all stores were operating at peak performance levels.

She had always had great health except for occasional migraine headaches and bouts with difficulty sleeping. Medications had been used to treat these issues as they developed and were highly effective. However, within about 3 months of taking on the new position the headaches seemed to become chronic and she found she was sleeping about 3 hours per night, despite a heavier than average use of over-the-counter sleeping medications. In addition she had started to have pain at the base of her neck that occasionally ran down her arms and along the spine.

“Pace Yourself”

Jodie attributed this all to the incredible stress level of her new job and traveling in the car so much. She enjoyed the work, but the pain and chronic lack of sleep were starting to take a toll. When talking to her doctor, she got the typical “pace yourself” conversation combined with some prescription sleeping medication. Taking the medication did help with sleep some nights, but she woke up feeling groggy and almost hung over, plus she seemed to have more pain in her joints, particularly in her hands. In fact she couldn’t seem to concentrate anymore, which she attributed to the medications she was taking more and more often.

Occasionally Jodie found that her hands hurt so much she couldn’t use her computer to keyboard in data she needed to complete reports. She thought she had carpal tunnel syndrome but the doctor told her no and prescribed some muscle relaxants and pain medication. Now Jodie was taking medications to sleep, relax muscles and control pain, but she wasn’t noticing any improvement.

Don’t Touch Me!

One morning Jodie woke up to find that simply touching her skin caused pain. There was chronic pain all over her body, but with any contact or pressure on her skin a sharp, shooting pain occurred. There was no swelling or redness and she didn’t have a fever, but it was like she had the flu. Her hands were so stiff she couldn’t bend her fingers without effort and sitting for more than a few minutes resulted in incredible stiffness and pain when she stood. She couldn’t drive, she couldn’t type and, because of her increased loss of time at work she couldn’t continue on in a management role. While she was able to continue to work, it was on a part time basis, a far cry from her dream job. Depression was obvious. She couldn’t work, didn’t want to go out of the house, and didn’t even want to talk to people that couldn’t relate to the reality of the pain and loss of quality of life she was experiencing.

Talking to her doctor got her nowhere, so she went to a neurologist and a rheumatologist, both of whom disagreed on the problem. She was prescribed multiple drugs including pain killers, cortisone shots, physical therapy, strong sleep medications and even medications for depression. She felt terrible all the time, constantly in pain and constantly exhausted. Her therapist had also put her on an antidepressant which made her tired and irritable, further increasing her feelings of isolation.

Finally, about three years later, Jodie found a professional that could help. She went to a doctor that was a pain management specialist that diagnosed her with fibromyalgia. Using a combination of treatment options including massage therapy, diet and exercise, drug therapies and counseling for depression a treatment team developed a strategy to help her manage the fibromyalgia.

The Reality of Fibromyalgia

Unfortunately, for most patients, the average time from the onset of symptoms until diagnosis is 2.3 years.  In a European study it was found that approximately 22% of people prior to diagnosis could not continue to work and another 25% could not work full time. In addition to the huge delay in diagnosis patients also reported presenting information on their condition to an average of 3.7 physicians before a diagnosis was made. 1

Often fibromyalgia occurs when people are in times of increased stress and when that stress tends to be long term. Why stress is such a factor in some people and not in others is not clearly understood, but researches now believe that a genetic predisposition must be present in addition to the environmental stress in order to make the brain chemistry changes that are associated with a diagnosis of fibromyalgia. This genetic predisposition may be in mutated genes, polymorphisms, that become problematic when high levels of stress hormones and brain chemicals are present. 2

Many patients, like Jodie, are also fighting depression at the same time they are dealing with devastating pain. Also like others, Jodie’s physician and therapist failed to use the fibromyalgia screening tools available that would have helped them identify the syndrome early, preventing the pain, depression and loss of quality of life that she experienced. 3

References

1 Choy, E., Perrot, S., Leon, t., Teresa, et al. (2010). A patient survey of the impact of fibromyalgia and the journey to diagnosis. BMC Health Services Research

2 Buskila, D., Sarzi-Puttini, P., & Ablin, J. (2007). The Genetics of Fibromyalgia Syndrome. Pharmacogenomics , 67-74.

3 Goldenberg, D. L. (2009). Diagnosis and Differential Diagnosis of Fibromyalgia. The American Journal of Medicine , S14-S21.

This article was originally published on July 11, 2012 and last revision and update of it was 9/7/2015