You got to know when to hold 'em, know when to fold 'em…

Starting sometime in the early 90’s, I remember asking people, “What do you do with your hands at night while you sleep?” Mostly I received blank stares from people who obviously had never thought about their hands at night. I guess, like most body parts, we don’t think about what happens to them when we are slumbering. Well, my hands were hurting at night even way back then, decades before from my fibromyalgia diagnosis.

My hands hurt at night, and many times I cannot find a comfortable place to put them while sleeping. From the 90s up until a few years ago, doctors would say that it must be carpal tunnel syndrome. They would hand me a brace to sleep in and send me on my way. I thought I looked like a Borg from Star Trek when I strapped on my brace. Who knew that many years later I would end up wearing assorted medical devices at night just to limit the daily pain?

Fast forward many years, and I still do not know what to do with my hands while I sleep. I start the night with them folded (ever conscious of not bending them at the wrist) on one another somewhere near my face as I try to fall asleep on my side. As they start to hurt I straighten my arms and lay them at my side. Sometimes, the hand pain seems to migrate up the arm, and I have to spread out like I am being crucified to get relief. Hanging them off the bed makes them fall asleep. Bending at the wrist has a pins and needles effect. If I start to worry about them, I clinch them, which causes more pain. No matter where they go, they feel heavy and throb. Many nights they feel swollen. Occasionally I get a sharp, stabbing pain like the ones I get in my knees when I sleep. I have to move them immediately – they feel like they will break if I don’t.

Last week, when my hands had a particularly bad night, I decided to try the compression gloves I had heard about for arthritis. I perused my local Walgreen’s and found the beige ones that make me think of Halloween or really old people. They were a tad too creepy for me to purchase, so I started looking online. I found a site called TommieCopper.com that sells compression items (gloves, shirts, knee sleeves, etc.) that don’t look creepy. It may be an old home remedy that copper helps pain, but I was sold once I read that the cute, black gloves were infused with copper yarn. I ordered a pair of fingerless compression gloves that claim to ‘reduce swelling and increase range of motion in hands and fingers for a great night’s sleep.’

My gloves, pictured at the beginning of the post, arrived Saturday. I have slept in them for two nights, and am wearing them as I key this post into my computer. It is too early to tell if they increase my range of motion, but I believe they helped my hands while I slept. I will continue to wear them and post my results soon.  Do your hands hurt at night? If so, what works for you?

Is sleep overrated?

Fall is here. The evidence is all around me - cooler days, the sun setting earlier than last month, pumpkins appearing on porches, ragweed blooming, and leaves blowing about the yard.

I have always liked the Fall season, mainly because Halloween and Thanksgiving are such fun holidays. Due to my fibromyalgia those holidays weren't as fun last year. My foot was in a walking boot due to plantar fasciitis. Wearing the boot threw my body into some odd position that seemed to aggravate my back and legs (I also have scoliosis), so I didn't sleep well due to the pain. Not sleeping led to massive fatigue. As usual, it started a vicious cycle.

I remember going to my doctor's office on a weekly basis complaining of fatigue. The first week he said it might be due to the blood pressure medicine I had just started for PACs, or the fact that I quit caffeine as the cardiologist suggested. I stopped the blood pressure medicine. The next week he said fatigue might be caused by low vitamin B12 or swollen sinuses due to ragweed; we tried B12 injection and steroids. The third week I went in crying, telling him that I was totally exhausted from head to toe, so fatigued that I couldn't lift my head off the pillow, yet in pain and couldn't sleep more than an hour  a few times a night. Going to work each day was draining the life from me. He did blood work to "See what was wrong". He called me the next day to say my blood work was fine and started me on Ambien.

At first Ambien was a godsend. I was able to sleep. Instead of being fatigued constantly, I was just a little groggy and tired the next day. I noticed I did not recall dreams while on it, and I awoke in the exact same position I collapse in. Then as winter approached I realized that I didn't remember what happened in the evenings at home - entire movies watched with the family erased from my mind, meals that we had eaten forgotten. The edges of my ambien nights, mornings and evenings, were a blur. I was only truly awake from noon to 8PM. As one can imagine, I soon became a zombie. I moved through the mornings and evenings with no awareness, clarity, or memory of the day.

I don't know how to explain it, but even though ambien made me lose track of part of my life, i was afraid to stop it. At least I had half a day. Before ambien I was so fatigued that I didn't really have a day. So stayed in it and lived the mechanical zombie life until my doctor suggested I see a specialist.

When I finally saw a rheumatologist, he asked me to stop ambien and try trazadone at bedtime. The switch made an instantaneous difference. I awoke refreshed and felt like I had slept for the first time in a year! I started recalling evenings and mornings. I got my life back.

As I watch the leaves fall outside my window today, I think of last fall, and how I missed so many months of last year while living in the constant zombie-like state of fatigue. Sleep is not overrated. It is necessary for life. Sorry Bon Jovi, it makes a great song (I’ll Sleep When I’m Dead), but in reality not sleeping turned me into the living dead.

I cringe when I hear people casually toss around the word "fatigue". A friend mentioned that she was fatigued from all the concerts and activities she attended over the weekend. She remembers what she did the night before, this morning, and over the weekend, her eyes are not sunken into her skull, her face doesn't look hollow. She is "tired", but not "fatigued".

Perhaps only someone who has experienced the life-sucking power of fatigue can understand the difference. I think I will sit here with my cup of decaf and watch the pretty colored leaves fall off the trees, and remind myself to be thankful later today when I am able to remember what I did this morning.