I’m going to digress from my usual post about food to discuss something that has recently become a part of my life. If you’re a regular follower of the blog, you’ll know that I have been undergoing some health issues in the past year – from problems with anemia getting under control as well as losing weight in preparation for family planning.
Since my last health update in June, I started noticing horrible stiffness and pain in the joints of my knees, hands, wrists and ankles. The pain was enough to cause horrible insomnia – sometimes only getting two or three hours of broken sleep at night. The overall fatigue that I was feeling in the earlier part of the year had improved slightly, but I still didn’t have 100 percent of my energy back. Yet, blood tests were all coming back normal.
My primary care doctor decided it was time to test me for some rheumatic diseases – something I’m all too familiar with because of my full-time job as communications manager at the Scleroderma Foundation’s National office. Tests were run to see if I possibly had lupus or rheumatoid arthritis, and I was scheduled to see a rheumatologist.
When I finally went to the rheumatologist’s appointment last month, my joints were cracking and popping. It was hard to find a comfortable position to sleep in at night because I had the constant urge to move my legs at night. I had trouble crossing my legs or bending down for long periods of time. My wrists would hurt so much that I could barely opens jars.
Within minutes of meeting the doctor, he knew that I had fibromyalgia. Finally all of the dots were connected. The fatigue. TMJ. Migraines. Depression. The restless legs. They’re all parts of the puzzle that is fibromyalgia. Recently, there has been an onslaught of commercials it seems for fibromyalgia medications – Lyrica, Cymbalta to name a few. So I had heard of the condition before but I didn’t really know what it was.
Fibromyalgia is a hard-to-diagnose condition that is characterized by widespread pain in the muscles and joints. Women are more likely to have the disease than men. There isn’t a blood test to diagnose if you have it or not, but doctors can do a pressure point test to see if you’re sensitive in certain areas of the body. There are 18 tender points on symmetrical sides of the body so if you are tender on 11 of the 18, these guidelines by the American College of Rheumatology are used to diagnose if you have the condition.
The worst part about living with fibromyalgia is the uncertainty. While it’s a relief to put a name to what has been ailing me – I have been treated for depression for nearly a decade, TMJ just about as long, my joints have always seemed to ache, and I never felt as if I had a good night’s sleep. The road to a solid diagnosis can be a long one. I have seen more than a handful of doctors, stumping many of them – until I finally found a rheumatologist who understood all of the components of the disease, took the time to talk with me and read my entire medical history from at least eight doctors. It’s uber-frustrating but it’s the life of someone with a chronic illness.
I don’t share my story because I want pity or sympathy from people. I share my story because there are millions of people just like me who spend so much time at doctors appointments and taking pills thinking they are nuts from all of this pain and no one can put a name to why they have this pain. I, myself, even began to think I was crazy – was the fatigue and the aches all in my head? Was I just being a wimp for not being able to tolerate it? No. I’m not a wimp, and I’m not crazy. It just takes so many people to diagnosis some of these complicated, chronic illnesses. As a patient, you need to be strong and surround yourself with a solid support system – your family, friends, your health care team. All of those people that you choose, help you feel better.
One of the hardest things for me to deal with as I’m learning to live with fibromyalgia is knowing when to stop and say, “I can’t do this. I just don’t have the energy.” Recently, when I was on a business trip, the long days from 7:30 a.m. to 10 p.m. with back-to-back conference workshops, meetings and networking – I was exhausted. I had to take a step back and realize I need a nap or I need to skip this session because I just can’t physically do this right now. Making choices is a huge thing. At night – I choose – do I have the energy to go to the gym for an hour or do I write a blog. In my head, I want to do both, but because of the signals I’m receiving from my body, I need to choose one.
I’m trying to live with fibromyalgia without any more medications. I already take 11 pills, 2 inhalers and 2 nasal sprays each day. Adding one more thing to this mix just seems like too much so I’m trying my hardest to combat the symptoms of fatigue and pain by increasing the time I spend at the gym and through diet. Yes, it seems counterintuitive – you have fatigue, go exercise. But oddly, I feel so much better after 30 to 45 minutes on the treadmill or stationary bike.
I sincerely wish I could blog as much as I had been but I’m still not in a place where I have all of the energy I could. I get down on myself constantly and almost feel that this endeavor has been a failure in 2011. I have a whole folder on my computer of photos that need editing and notes that need typing out. Unfortunately, I get home after eight hours of work and I’m spent. I’m not sure what the future holds right now for me. I’m just taking each day at a time. I am so grateful for all of the regular readers that I do have and thank you for standing by me.