Sometimes I think I never really understood pain until Fibromyalgia.It’s especially fun to describe it to doctors or your friends and family. I was on a facebook page for people with fibromyalgia and other disorders Facebook - But You Don't Look Sick and one of the ladies shared that she wished her pain would stay in one place. I could totally relate to that! I remember trying to explain my pain to a doctor the first time and telling him it was varying – sharp at times, achy at others, and that it often traveled. He looked at me like I had claimed to be Elvis Presley back from the dead.
Not one to quit easily, I tried pulling out my bag of writer tricks. I told him to imagine a picture of lightning. A photograph captures features we can’t normally see or focus on when we only catch a glimpse during a storm. Most photos show lots of “arms” or branches shooting off the main bolt. My pain is intense for a moment in one spot and then moves to another, then another – like a bolt of lightning traveling through my body. In case you’re wondering, my doctor still saw me trying to perform Blue Suede Shoes.
Okay - so then I would move on the the pain that feels deep - like it's in your bones. I initially thought it was some sort of early onset arthritis - but my doctors assure me my bones are fine and it's actually the muscle and nerves causing my pain. Sometimes I still could swear someone has taken a corkscrew to my bones.
Then I’d try to explain the sensitive skin. That one is so much fun. Fibro affects each person differently so you may not have had problems with this, but I know quite a few who have. Sometimes it can feel as if you’ve gotten the worse sunburn in your life. It stings and clothing hurts when it brushes across it. Everyone I’ve talked to has only had this in certain areas of their body and there are no physical marks or redness on their skin. Another delightful way this can show itself is to make it feel as if you’re bruised when nothing has happened. My especially fun combo is that I tend to have problems with the back of one of my thighs (only one - don’t ask me why) and I have IBS so I end up spending, um, unfortunate amounts of time sitting on toilets. TMI? Sorry.
This whole skin sensitivity truly adds a lot to the romance department though. I know, the normal “tenderness” and honest to goodness pain we all feel can kill a romantic mood faster than skunk spray. We’ve all been there. There are times though when it feels as if our own skin is turning against us. My poor husband is a serious cuddler. I love him so much and wish I could return the sentiment. Unfortunately, a lot of the time his squeezes and caresses feel more like cuffs and clobbers. That isn’t helpful for setting the mood.
Even when you’re trying to do something positive and healthful it can backfire. Let me confess—one of my “dirty” words is exercise. I know it’s supposed to be good for you, but I’ll bet most fibro patients have experienced a flare from it. If you aren’t familiar with the term “flare,” it’s used to describe a time when you’re symptoms are much worse than they normally are. It’s like the slow drip of our normal “faucet” of pain has been replaced by a fire hose. Some of my worst flares have come from trying to work out. The problem comes because workouts are supposed to be good for us, but any stress on your body can cause a flare. So, if you stress your muscles too much … flare.
I remember my first workout flare. I was struggling with my weight and dieting just wasn’t working. I’d been active most of my life. Army training wasn’t a joke and I’d done some pretty serious home workouts as well. I knew about sore muscles and I’d put up with the pain of fibro so far. I figured I could handle it (I can hear you laughing). I could barely move for over a week. This went way beyond normal workout pain. Being about as smart as a rock, I tried again a couple weeks later. It doesn’t take a rocket scientist to figure out I ended up not wanting to move or have anything touch me for days – again. It didn’t make sense to keep it up because I couldn’t make any progress if I was bedridden for that long after each workout. It was like someone had beaten me from head to toe, plus every other disorder I had acted up as well.
