I am somewhat fortunate enough to have a girlfriend who also suffers from Fibromyalgia. I say somewhat of course, because nobody ever wants their good friends to suffer – especially if they know the extent of the suffering.
My friend Val is amazing. She knows how to research and takes care of her body. She really motivates me when I’m not feeling so motivated. Our symptoms are different, she suffers a lot from fatigue, arthritis like stiffness and has even had random bouts of unexplained paralysis during sleep, while I suffer from myofascial pain, fatigue, and TMJ-like symptoms.
However, we do overlap quite a bit. Just like her, I suffer from fatigue, and we both suffer from forgetfulness, losing words and memory.
We also have taken two different approaches to our treatment plans. Without insurance, my friend doesn’t see the doctor a lot. Instead, she invested wisely in acupuncture, researching and interviewing acupuncturists before paying for treatments. She also changed her diet. In the year or so that I have known her, she has lost a ton of weight, is eating healthy and experiments with supplements (some work, some don’t) and vitamins. She looks great and feels great!
We met for lunch the other day and over sandwiches she admitted that she had felt the best she has felt in years! She chalks it up to the acupuncture and dietary changes. This is not to say that her Fibromyalgia has gone away. After a recent “bad day” she could not believe the difference in her body from feeling mostly normal to feeling completely wiped out. And she couldn’t believe she lived most of her life with bad days prior to making lifestyle changes.
My tactic for handling this disease has been somewhat different. I have relied on medication and physical therapy, trigger point massages and stretching and sometimes meditation to allay my symptoms.
Despite the differences in our treatment, we are both at similar levels of functioning (give or take that she is in much better shape than myself). She works part-time at a health food/vitamin shop. Working a limited number of hours allows Val to take care of herself, to exercise, eat right, and rest frequently. Her employers know that she has Fibromyalgia and when the store is slow, she has some downtime. While her work schedule does vary, she averages about 20-25 hours per week.
Me too. During the week, I am the primary caretaker of my son. Two nights per week I teach for 4 hours and then on weekends and at other times during the week, I grade papers, send e-mails to students and keep up with faculty obligations. Outside of this, I have a very small monthly job that requires a lot of work from my computer at home and one in-person meeting a month, sometimes two.
I average roughly 15-20 hours of work per week. But, except for the 4 hours in the classroom – I can do most of my work from home, on my own time, and in my own space. This means on bad days, it is okay if I send an e-mail from bed, or grade in my pajamas from my couch.
The fibromyalgia experience seems to be different for everyone, making diagnosis just as difficult. Recently, however, a study conducted by Autoimmune Technologies suggests that those with Fibromyalgia or Fibromyalgia-like symptoms may have elevated levels of an Anti-Polymer Antibody Assay (APA Assay), which indicates an abnormal immune response and can also indicate the severity of Fibromyalgia.
Why would we need to know this information? It is the first step in developing a blood test to determine if a patient has Fibromyalgia, how severe it is, and if medications would work in treating their symptoms.
Personally, I see the good and the bad sides to this.
First, it is just another way to confirm to doctors and the general public that Fibromyalgia is indeed a physical illness, not a mental one. Also, testing for these antibodies can also determine if a patient has another disease, such as Lupus, Arthritis or other connective tissue disorders by ruling out Fibromyalgia.
But, I’m still a skeptic. I’m skeptical that the test won’t be used as a way to weed out chronically ill patients, to deny treatment, or even worse, to charge huge amounts for high-cost pharmaceuticals because this is what the blood test recommends.
Still, maybe that is really just the skeptic in me. It is hard after so many years in the ins and outs of the experiment that is the medical system and medical research to accept that medical research companies are out only for profit and not to help the patient. I’d like to think that there are some valid and independent labs out there who really care that this test will help those already suffering with Fibromyalgia.


