Fibromyalgia Struggles

May 12th is Fibromyalgia Awareness Day. Fibromyalgia is a condition where the person feels widespread pain throughout the body, along with other symptoms such as Chronic Fatigue, Brain Fog and a host of others discussed below. Fibromyalgia is not an inflammatory condition but is thought to be a misconnect between the brain and it’s pain receptors.

The Sick Girl

When I was younger, I struggled with my health a lot and was known as “The Injured Girl” or “The Sick Girl”. I was always teased because I was sick and missed school a lot, even though I was able to keep up with my grades. I had teachers and coaches say I was just doing attention seeking behaviours and not truly in pain. I hated to do water activities because the water balloons or pump action water guns hurt so bad, the cold water would make it worse.

I started to lose some friends in junior high because they didn’t want to hang out with a “Debbie Downer”. This was the beginning of me trying to figure out that if what I was feeling was what everyone else experienced and I was just not handling the pain very well, or if I was experiencing pain that wasn’t supposed to be normal.  

My first time of realizing that I was struggling with pain and my body not really working was when I was in PE in high school. My body was in constant pain and certain textures were bothering me. I had a doctor notice something with my back and that was the first time I had any validation from someone other than my parents that I was in pain.

The Diagnosis of Fibromyalgia

Two years and a half years after that my parents took me to a specialist in Salt Lake City to try to find out what all was going on with my body and see if there was anything that could be done. This was the first time that I had ever heard of fibromyalgia. I was also diagnosed with lupus and rheumatoid arthritis as well during that visit (I will tell my story about these two later, for now I want to focus on fibro). The doctor just told me what he was diagnosing me with and sent us on our merry way back home 

I didn’t really think anything of my diagnosis and didn’t really think of what that meant at the time and what it could mean in the future. At the time, I was just glad to finally have a name or names to go along with my pain and that it wasn’t just all in my head. I had thought that it would have made my life a little easier and that people would stop calling me attention seeking, but unfortunately, that wasn’t the case. I still lost friends because I wasn’t getting better after my diagnosis. I had a few tell me that I was depressing because I would tell them what my body was feeling like and being honest with my limitations.

Symptoms

“Common symptoms include: widespread pain, jaw pain and stiffness, pain and tiredness in the face muscles and adjacent fibrous tissues, stiff joints and muscles in the morning, headaches, irregular sleep patterns, irritable bowel syndrome (IBS), painful menstrual periods, tingling and numbness in the hands and feet, restless leg syndrome (RLS), sensitivity to cold or heat, difficulties with memory and concentration known as ‘fibro-fog’, and fatigue. The following are also possible: problems with vision, nausea, pelvic and urinary problems, weight gain, dizziness, cold or flu-like symptoms, skin problems, chest symptoms, depression and anxiety, and breathing problems.”

This chronic illness is one that many doctors don’t agree that it is a chronic illness. My first specialist diagnosed me based on a lot of my symptoms and I was glad to have a diagnosis. I recently started seeing a new doctor because I had a flare and we decided to see what was flaring up to see if we could try and get it under control.

This is the first time I have ever had a doctor tell me that they do not believe that fibromyalgia is a diagnosis. He was honest in saying that he believes that fibromyalgia is just a doctor’s way of saying “I don’t really know what is wrong with you, but since your nerves are causing pain I will just call if fibromyalgia.”

In some ways, I agree with the doctor because some doctors just give a random diagnosis because they want to just not be asked to try and find what is wrong. In other ways, I disagree. I believe that it is a diagnosis, I believe that trauma or other chronic illnesses can trigger it, but I do not believe that it is not considered a chronic illness. Sometimes we, chronically ill patients, have to make a choice.

The Struggles

Some choices are whether to swap doctors to get the treatment and communication that we need/desire and other choices are whether we agree with the treatments we are given. I have decided it is in my best interest to stay with my new doctor because he wants to help me and keep open communication. I don’t agree with the diagnosis being “taken away” from me, but he is trying to treat the cause of the flare and not just give medications that are “band-aids” to mask the symptoms. For fibromyalgia awareness, I am bringing to light only some of the struggles that I am going through.

Conclusion

What I am experiencing is not what others are experiencing with the same diagnoses as I have. We also choose different treatments based on how our bodies respond to them and what our lives are like along with our own personal end goals. I am personally glad that my husband, doctor, support team, and I have agreed upon a treatment plan that will help me reach my own goal with my quality of life. I am glad that it will not take away my ability to write blogs, start video blogging, and work (as long as my body will allow).

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