Those of us with Fibromyalgia often note the beginning as our date of diagnosis (for me this would be 2003). This is not the beginning, however, as getting to the actual diagnosis can take years. Looking back I now understand that symptoms of Fibromyalgia began in my childhood.
The first symptom I recall is hypersensitivity to sound. I was raised in a quiet family. There were rarely any other children around to prepare me for the assault of noise in school. The anticipation of school was nearly too much for me, and it was my favorite game to play. They bought me a school desk, and book bag at a garage sale. My favorite toy was a speak and spell. Educational programming on the television was constantly on, typically in the form of either Sesame Street or Pinwheel. (If you aren’t an 80’s child, you may not remember Pinwheel, but my grandfather insists that as a Neilson ratings family I single-handedly kept the show on Nickelodeon). When the first day of kindergarten finally came I was beyond excited. Everything was great except when we were sent to recess, or I would ride the bus home. The noise was nauseating.
We went to church every Sunday, and as a toddler I would stand in the pew and tell the minister to “stop hollering”! When the organist would start playing hymns I would cover my ears, lay my head in someones lap, or have to leave the sanctuary. The sound was too much to bear. This continued into my teenage years, well except for telling the minister to be quiet. Today if I enter a church with an organ I literally pray it will not be played. This is unfortunate because I love music.
Hypersensitivity to sound continued to elevate through the years. This proved to be difficult in my job of 18 years as it could be a very noisy environment. It also affected a relationship that I was in with a musically oriented individual who told me that the sound would not bother me if I enjoyed the music. Of course that is not the case. Hypersensitivity to sound also affects my anxiety, pain, and fatigue.
Hypersensitivity to sound can wax and wane with fibromyalgia. During a flare up, this can be very difficult to manage. For me I find being in a quiet house with my noise cancelling headphones helps.
The next symptoms I recall are anxiety and depression. At age 9 my parents were called to the school because I cried every day, but would never tell the teacher why. I didn’t know why. I knew that it felt like there was a constant knot in my stomach, an overwhelming sadness hovering over me, and the feeling of being isolated. At the age of 15 I had my first serious thoughts of suicide, but I did not tell anyone. I had gathered all the pills I could find around the house, and sat them on the dining room table. It was time to make the pain, sadness, anxiety, depression, isolation go away. Thoughts of my family waved through my mind. I sobbed, and put the pills away. It wasn’t until 20 years later that I would actually take those steps.
In my early 20’s I saw several doctors about my anxiety and depression progressing, and began the trial and error of antidepressants. This trial and error went on for 15 years, and during that time I worked 50+ hours a week at a stressful job and rarely told my supervisors what I was going through. I was afraid they would see it as a weakness or liability and my job would be in jeopardy.
–Lexapro was first. Lexapro made me sweat, irritable, eliminated libido, and I began having night terrors for the first time of my life. I would literally sit straight up in bed screaming.
–Effexor was next. Effexor also made me sweat, eliminated libido, and made me very tired.
–Zoloft was added to the Effexor. If you think this is unusual, I’ve been told that many times. However, the combination of Zoloft and Effexor did help for a while, at least with the depression. I still had side effects.
–Savella – A supposed new miracle for Fibromyalgia that several people I knew swore by. With Savella I had sweating, palpitations, insomnia, and increased depression.
–Lyrica – While Lyrica seemed to help with some of the fibro issues, I began to gain weight really quickly, and continued to have palpitations (even after seeing a cardiologist who said it was either medicinal or stress related).
–Cymbalta – This is what I am currently taking 120mg/day. (2 doses at 60mg each). Side effects: dry mouth, fatigue, diarrhea (could be the IBS), and increased urination.
–Xanax – What none of these drugs addressed was my crippling anxiety. Several of them are supposed to help, the suffering continued. Finally in 2015 I was prescribed Xanax. I now take 2mg a day. Originally I was prescribed .25mg when necessary. Then .50mg twice a day. This kept me on a roller coaster. Now I’m on a delayed released dose of 2mg, and it is much better. I still have anxiety, agoraphobia, panic attacks, social anxiety, but Xanax helps me cope with them.
In addition to medication I have seen therapists, psychologists, psychiatrists, and am currently doing cognitive behavioral therapy.
Sleep problems started around the same time. I would swear to my parents the crickets were keeping me awake, but it wasn’t the crickets. I had insomnia, and sleep disturbance. This I would later learn played into the pain and fatigue to come.
Pain and fatigue began to elevate at age 11. I remember feeling sore all over even though I had not done anything taxing. Family would comment that I had a “tender head”, and that everything was “ow” with me. The pain was especially bad on the sides of my knees, base of the head, hands, wrists, elbows, my neck, and shoulders. Soon, I developed TMJ, and had to be fitted with a guard that I used in school and at night. Grinding and clenching my teeth has caused tooth loss, headaches, and damage to my jaw. It was also at age 11 that I started menstruating, and had heavy painful periods until my 30’s.
It always seemed that everything took so much effort. Most forms of exercise were just too much. I spent most of my childhood indoors reading. My parents encouraged me to exercise, and attempts were made. I would ride my bike, but quickly tire and hurt and have to come in. We would walk together as a family, and I would lag behind. Everything seemed exhausting, even as a young child. Everything hurt, but I didn’t understand why, or how to relay what I was going through to my family.
As the years progressed, so did the pain and fatigue. For my entire 20’s all I did was work and sleep. When I finally had a diagnosis the trial and error of pain meds began.
It is important to understand. I am in constant pain. Every minute of every day. The level of pain differs moment to moment. All of these medications I have taken only help minimize it, nothing takes it away.
Flexeril – great for relaxing muscles, making you sleepy, and helping with muscle spasms. What it does not do is help my pain. I have taken flexeril for about 15 years as needed, usually at bedtime.
Neurontin – helps with nerve pain, but overall it did not provide much relief for me.
Tramadol – by far the best with the least side effects for me. It does make me drowsy so it is my go to for night-time pain.
Hydrocodone – good and bad. It gave me energy, alleviated my pain, helped me lose weight, but it is short lived, and extremely addictive. This drug helped me more than any other, but the dangers and current climate of people abusing the drug made me decide to take myself off it.
Ibuprofen/tylenol – my daytime combo – 2 Advil, 2 Tylenol. Depending on the level of pain I am in, I may take this combination 2-4 times a day. Yes, I know that is a lot, but we are talking about functioning at all, or not at all. Sometimes even all of this together doesn’t allow me to function, but you do what you can.
Chronic Anemia is another symptom that I was actually born with. I have had it my entire life, and have had to get iron infusions, and take medication. This also causes pain , fatigue, and issues with cognitive function.
IBS In my early 20’s I began having severe gastrointestinal issues. I saw several doctors who would tell me to change my diet, eat more fiber, keep a journal, etc. There were times it was so bad I would go the hospital. It wasn’t until 10 years after my initial fibromyalgia diagnosis that my doctor said it was most likely IBS, which often coincides with fibro. Basically, another symptom to deal with the best I could.
Finally in 2003 my fight to just deal with all the symptoms became too much, and was affecting my work. I saw yet another doctor, and laid everything out for him. After more tests that all came back normal (except anemia, and slightly elevated white blood count) he diagnosed me with Fibromyalgia.
So, just like so many others with Fibromyalgia I have had dozens of tests, prescriptions, doctors, lack of understanding from coworkers, family, significant others, friends. This is just the tip of the iceberg, my friends. God is GOOD! It could be worse, and I am thankful for every day. – Cecilia Grimes
Fibro is my least favorite F word 
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