Good Evening Friends and Peers,
I have had a permanent increase in the amount of pain I experience from my Fibromyalgia. It increased after I was rear-ended two years ago by 40%! I did not recognize that is was my chronic pain, along with a few other new physical pains for quite a while. I simply hurt so much in places that I never hurt before for over a year and my right knee was in such excruciating pain, I had no way to separate the pains. I also have post concussion syndrome now (PCS), which in addition to causing migraine like headaches, light sensitivity and being easily overwhelmed and over-wrought by being out in any situation that involves too much sensory input, causes me to experience cognitive issues in both short and some long-term memory and word usage. Because PCS also causes pain in my head and neck area (overlapping with fibro pain areas), I believed the new pains were generally related to these other issues. My numerous doctors finally helped me to sort out all the different aches and chronic pains. Now that I am capable of sorting pains out, the PCS pain is a different feeling from old friend Fibromyalgia. My doctor who treats my chronic pain, was finally able to determine that my Fibromyalgia had increased from the whiplash almost 50%.
For many months, after the first year when it was all mixed together, I felt like it was a big flare up of my chronic pain and stayed in bed all day, feeling the burning, aching, nagging pain. My family became concerned about how often I flared and was staying in bed. We talked about it in detail. It was decided that I should try to get up, move slowly and wait to see what happened. This is also similar to what you are told to do with PCS, rest your brain daily as and when needed. I was very reluctant to do this, I just did not see the point in sitting in my armchair, suffering while sitting up instead of taking more medications and sleeping it off. Finally, I tried their plan. The result, everyday I wake up in a medium state of pain from Fibromyalgia (the pain scale is about a 6). I slowly make my tea and put on a simple, but humorous show, sit down and wait. After about two and half hours, the pain usually goes down to a 4.
A 4 on the pain scale of 1-10 is still higher than before the MVA, but I’ll take it. I then begin my process of picking up a few items that were left out last night, pick out a simple outfit and get into a nice warm shower for five minutes to continue to soothe my aches. After that, I tackle a few chores spread out over the day, plus one “big” chore, like getting a small load of laundry into the washer, adding soap and turning it on. I also walk my dog for about 20 minutes; all I can handle with my knee issues, PCS and the Fibro pain. I also work on this blog.
Working on this blog with both Fibro Fog and the cognitive issues of memory and forgetting words from PCS is very challenging for me. I have decided that despite needing to spellcheck every time I write, reread the post at least three times to correct it, and forgetting words that I want to use in the post, it is helping me to live my life. It is also allowing me to help my Peers and do what I set out to do with my academics, at least partially, by advocating. Short posts can take two hours, longer ones, four hours! It was only three years ago that I could work until late at night on research papers without missing a beat (rarely looking up how to spell a word, or what the word even was). Back then, my chronic pain was around 2-3 when I woke up and by the evening it would increase to around 5. Flares occurred about once a week, more in the winter of course; last winter was brutal but I was still in pain everywhere and did not have a gauge to judge what was what.
Yet, I get up. Every day. There are generally two days every week where getting up doesn’t help much. I wind up back in bed in a flare of 8 or higher. But the point here is I am continuing to try. I understand that I again lost my life plan. I need new tools in Well living kit to remain positive. But, I am not giving up. I am getting up. 🙂
I urge you all to do the same!
Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach