what is fibromyalgia

Fibromyalgia: What is it? Is it a Real Thing?

Is fibromyalgia a real diagnosis? Some doctors are more willing than others to acknowledge fibromyalgia as a “real” condition. According to Mayo Clinic’s website, “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. ”

Symptoms of fibromyalgia are vast and varied. I have done so much reading on it since I was diagnosed at the beginning of the year, I think just about any symptom falls under the fibromyalgia umbrella. Part of the issue with diagnosing the condition is that there is no definitive test that can be done to assess data. That being said, the most common symptoms include chronic pain that lasts over three months. Everyone’s pain is different, but many people describe it as a “dull ache”. Extreme fatigue is also experienced by many sufferers, along with cognitive difficulties. Other symptoms can include, but are not limited to, IBS, headaches, joint disorders, depression, and anxiety.

I quit my job in November of last year due to many things that occurred, both personal and professional. I had been having back problems and even hip problems for several years. The pain would come and go, sometimes for a few weeks at a time I would forget about it completely, but then, sure enough, it would always return. What was frustrating for me was that the pain wasn’t consistently in the same place. It would move around to different parts of my body for no apparent reason. I am a yoga teacher and I’m fairly active. I like to be moving (thank goodness) and I try to live a pretty healthy lifestyle but I feel I can always improve. When I quit teaching, I feel like I completely fell apart physically and emotionally. I had problems remember things: “Did I already ask you that out loud or did I just think I did in my head?” and little things like that. I also noticed what I call a processing delay — when someone would ask me something it would take an extra second or two for the information to process and for me to be able to respond. It felt like I held myself together while I worked and the second I quit, I fell apart emotionally and physically.

Thankfully I have a doctor with the patience of Job. God bless him, he has been wonderful and so supportive. I have regular “check ins” with him just to tell him what all I have been doing, how much I am exercising, if I have changed my diet, how I’m sleeping, etc. He diagnosed me back in January, which was sort of a relief but not. At least I could say, “Yes, this is what’s wrong with me,” but at the same time I can see why many people who struggle with fibromyalgia suffer from anxiety and depression. It’s so frustrating when you keep making adjustments to your lifestyle, hoping, praying it will make a difference and you will feel better, but it’s really rare for me to try something that I feel made a big difference.

While I am sure it’s different for everyone, I did find a few things that have helped. I was drinking a lot of water every day, but I was using those drink packets that were sweetened with aspartame. I was researching after my diagnosis and many people noticed an intensity with their symptoms if they consumed things with aspartame. I cut that out immediately and it did really make a difference as far as my energy level. I now only use drink packets that are sweetened with Stevia and my doctor has limited me to three per day.  I am still tired and drained sometimes, but heck, I am able to get out of bed and I sleep a little better as well. I try to eat “clean” as much as I can, but I’ll admit, I enjoy eating a lot and its hard for me to deprive myself of something. I have also cut down (not cut out completely) dairy and gluten. These have also been known to trigger symptoms for people. There are a few products that I have found that I really like that are gluten free, so I don’t feel like I am missing out as much. But if I want a breadstick or a piece of cake, I will eat it.

I experience pain in my back, my rib cage, my hips, my neck and even my rear end. For me to feel my best, I have to walk for 30 minutes in the morning, do at least 15 minutes of yoga or even just stretching, watch my calorie intake through the day, stay active during the day, then walk another 30 minutes in the evening and more yoga usually before bed. Yeah. It’s a lot. Yeah, it’s difficult to live a life and I feel like it’s a full time job maintaining myself. I never know how I am going to feel in the morning when I wake up. It’s a gamble. I am most always tired, no matter how long or how well I sleep. My doctor asked that I do a sleep study and of course checked all my levels and everything was fine. If you look at my lab results, there is no reason for me to be as tired as I am and why I could sleep 16 hours a day if I didn’t make myself get up.

In addition I have severe charley horses in my legs (and no, my potassium level is fine and yes, I eat a lot of bananas). They are so severe that no matter how I move or what I do they wont go away. They are the worst at night when I am sleeping. I also have charley horses in my abdomen. Sometimes I can feel them coming on and if I lean forward too far, the muscles just cramp up and stay that way for several minutes. I have cysts in my liver and kidneys that I have to get checked yearly, and I had my gallbladder out last year. Currently my latest “thing” is a tingling sensation in my arm from my funny bone down to my pinky and ring finger. It feels like it’s always close to falling asleep — that weird feeling. All of that is related to fibromyalgia. And I am lucky. I am not in excruciating pain like some are and I am young enough that I can still exercise and move and be pretty active. For some people it’s debilitating. Some days I feel like it is, just because some days I feel a little despair. “WHY DON’T I EVER FEEL GREAT?” But again, it could be worse. I have a wonderful support system of friends and family and I am very lucky that I don’t have to work like I was and my work schedule is flexible. Once in awhile, I will have an “I’m wearing my jammies all day” day. It’s not frequent, but they do happen and I have tried to let myself be okay with that instead of being so hard on myself. Sometimes I feel like it’s admitting defeat, which isn’t my style.

My hope in writing this very lengthy post was maybe to help someone who has been having similar symptoms but not able to figure out what’s going on with them. Or to have someone who has been diagnosed with fibromyalgia read this and know they aren’t alone and other people literally feel their pain. I’m still at the beginning of all of this and I will share more as I learn more. If anyone has some tips they want to share, please feel free to contact me. You can reach me at ourstoriedhome(at)gmail.com.

 

 

*This post is based on my personal experience over the past several years. It is not to be taken as medical advice, only supplemental information. If you have any questions or concerns about your own health issues, contact your physician.

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