Wednesday, September 5, 2012

Fibromyalgia

A lot of people don't know that I have fibromyalgia. Maybe you have heard about it on a commercial for some drug. Maybe you know someone who has it. Maybe this is the first time you have heard the word. Even though I was diagnosed years ago I still feel like I have a lot to learn about it. It is classified as "long-term, body-wide pain". Here is a little bit of my story with fibro.

After high school I started to have a lot of body ache. There would be times when the pain in my legs was so bad that I couldn't walk or the pain in my arms would be so bad that I was unable to carry anything or move my arms much. I always referred to this pain as "growing pains" because my parents had called it that when I was a kid and it is a similar but more intense version of that childhood pain. I basically wrote the pain off as being normal for a long time. One day (years later) Steve said to me "how can you still be having growing pains when you are in your 20s?" I don't know how I had never thought of that! Steve witnessed many evenings of me lying on the couch or in bed in tears because the pain was too much for me to handle. He convinced me that it was time to see a doctor.

My doctor talked to me extensively and ran a lot of tests. After a few appointments he told me that I have FM (fibromyalgia). He gave me a huge book to read and sent me on my way. I am not good with medical jargon so I only read sections of the book that I was really interested in, such as sleep. I have been a bad sleeper for as long as I can remember and this book basically linked my sleep issues with fibro. My anxiety and (sometimes) depression was also linked to fibro. And of course my pain. Since being diagnosed my pain levels have fluctuated a lot. There are seasons in my life where my pain is minimal. I can go for 2 weeks with very little pain. Other times I am in pain all day every day.

Usually the pain I experience starts in my knees or elbows and then spreads up and down my leg or arm. Most of the time I only have pain in one leg or one arm at a time. The pain is a deep aching pain that can start out dull and and gets more intense over time. Once it gets to be really bad (like barely-able-to-breathe-through-the-pain kind of bad) it goes away quickly. The bad pain normally lasts no more than an hour or so. The build up to that bad pain can be 20 mins or 6 hours...I never know what to expect. It feels like the muscle/s are being squeezed as hard as they can be. As if I am having a major muscle cramp. Moving makes the pain worse.

I am lucky that usually this pain only comes on in the evenings or in the night. I almost never have this pain in the morning. I have general back, neck and hip pain but that is just "normal" to me.

I talked with my doctor about lots of pain management options. I tried a few of them too. Nothing was effective enough that didn't give me unpleasant side affects for me to continue on the drug. I can take Tylenol or Advil every time I have pain but I would be taking it way too often and eventually it would lose its effectiveness as well. I choose to take meds when I have pain during the day and need to be able to function better than I am in that moment. It never takes the pain away but sometimes it dulls the pain enough for me to get by. My doctor also recommended that I work only part time so that my body can rest more. I worked 4 days a week from then on until having Jacob.

I have been having more pain lately than I usually do. The worst part about that is that my energy levels are WAY down! Today has been particularly bad. I did a TON of stuff this morning and I clearly overdid it because I paid for it majorly this afternoon. By around 11:30 I was feeling my right leg start to ache. I went to a friends at 3pm and by then it was slowly getting worse. I felt very low on energy. By 5pm I was lying on the floor in my kitchen listening to the timer go off on my oven and didn't know how I was going to get up and turn it off and take my food out. I knew I had to feed Jacob and I knew that continuing to lie there was not an option. The pain was almost at its worst and I knew that it wouldn't be long before I would really be unable to deal with Jacob. I did my best to feed him while sitting in a chair. My neighbour knocked on my door and I made the poor decision of getting up, going down my stairs, out to my garage and getting him the zap strap he was needing. By the time I was walking up the stairs I couldn't hide my limp and I was crying. I came inside and crumbled on my couch bawling my eyes out waiting for the climax of pain to be over. I managed to get up, get J out of his high chair and lie back down but I made it so much worse! This is when having a kid and having fibro don't mix. By 6:30 I was feeling a lot of relief. Now it is 7:30 and although I still have pain and don't want to walk I am ok. By 8:30/9 I will probably be feeling fine.

There is a little bit more of a glimpse into my life and a little bit of knowledge for you as to what fibromyalgia is and how it can affect people.

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