I’m On Fire In A Fibro Flare-Up

I’ve been working through the pain of Fibromyalgia for the last few months; today it caught up to me in a bad way. I couldn’t move, walk, take a baby step. Even when I sat down on my pale green modern sofa, my feet ached and throbbed and wouldn’t stop hurting. Drugs don’t seem to help me but sleep does. It’s only 7:00pm and I am forcing myself to stay awake even though I am lying down on my bed, stiff and unable to move. I need help to get out of bed, I am grateful for my husband who comes to my rescue. Very grateful.

I am yearning for sleep; to pull the extra blankets over my head and feel my body try to release its tension and pain. I’m hoping the pain will not wake me up tonight, will not tug at my shoulders or send stabbing pain up and down my legs. I need a night off from pain, just one night and then I will be ready to trudge through the pain again, like walking uphill through a windy snowstorm. It isn’t easy but if it has to be done, it’s sometimes possible.

Everything tonight is black and white, food, books, conversations, life. I am trying to relax my muscles but it is not working, maybe I am trying too hard. I am not sure I know what the word relaxation means anymore since my body feels like an overworked metal machine; I am the Tin Man from The Wizard of Oz, still searching for some oil.

After many years of believing in the magic oil, the magic pain relief, I have given up on believing in a possible cure. I don’t care about the naysayers either, I know what I feel, what many of my friends feel. Who wants to advertise or brag about pain? Not I.

I compliment myself on my attitude, still having a sense of humor, still looking forward to a piece of a chocolate chip loaf from a nearby restaurant. I have plans to watch Modern Family with my husband on-line to keep me up 26 minutes later before I beg for sleep. I accept what I can do and what I can’t do. There is a handicap rail for inside my new, deep bathtub. My daughter looked shocked, embarrassed: “Mom, please don’t tell me we are having handicapped bars in the upstairs bathroom.” “Yes” I said quietly but firmly. “Why?” her teenage self asked. “Because I need them, honey” I answered. She had the grace to turn away so I could not see her embarrassed and troubled blue eyes.

I need to use handicapped rails sometimes, like I also need tea with milk and honey in the winter and bright yellow daffodils in the springtime. All of these parts represent me, not just one. Like I need my morning coffee, now known as “a red-eye” a strong cup of coffee with a shot of espresso, it doesn’t define me but it is part of my routine in the morning. Fibromyalgia and my autoimmune disease, Hashimoto’s Thyroiditis are just parts of me; the parts of me that suffers with chronic physical pain. I have to accept that but I do not have to let them define me.

The Tin Man Known As Me

Image by Brian Negin via Flickr

I am in a world by myself  of chronic pain, fibromyalgia and thyroid disease, yet I coexist with many friends. Friends that have similar ailments, some have the same, others that defy diagnoses but the symptoms define them. I have learned we are more than the sum of our symptoms but I have not yet learned exactly how to deal with it emotionally.

There don’t seem to be medications that  I can take (or haven’t been told about) by the myriad of doctors that I go to help relieve my pain.  First stop, the Rheumatologist for my autoimmune thyroid disease known as Hashimoto’s Thyroiditis and for Fibromyalgia. After that, to the Endocrinologist for thyroid levels. My Internist, the Pulmonologist, the Opthamologist to check for narrow-angled glaucoma. I have seen more “ologists” than a healthy eighty-five year old person and I am not complaining for a second; these are the facts.

If people ask me how I feel, I am at a loss to describe the symptoms. The latest comparison I can make is The Tin Man from the Wizard of Oz, without the oil can. I am stiff, I hurt, I move at a slow pace. It is very hard for me to get in a car and get out, these are not smooth actions, often I am holding on and heaving myself up; sometimes once is not enough.  I have balance issues too. I keep trying new medications but haven’t taken one yet that truly works. These are immunosuppressant drugs that are supposed to help relieve the muscle pain and aches I feel all the time, the operative words are “supposed to.” They also take eight long weeks before they kick in…..I wait a lot.

Tomorrow, to “get me back on track” before starting the newest of medications that I don’t even have yet, I am supposed to take Prednisone, 3 days of 30 mg, 3 days of 20 mg, 3 days of 10 mg. I have been on Prednisone before and I have mixed feelings about it. While I had no bad side effects before, there is always that risk. The emotional risk, to me, is even harder. I felt SO GOOD on Prednisone when I needed it last year that when I started lowering the dosage, I actually broke down and cried. In a previous blog I referred to it as if I was in the old movie “Cocoon” where older people feel young again from a miracle and then suddenly a short time later they are themselves again, old, aching, and hurting badly.

Tonight I feel anxious, tired, discouraged and down. I think once I am able to sleep, I will sleep deeply. It is always a game: whether to nap or work through it. Today, I was determined to stay awake. I am  deeply worried about a friend who is very, very sick with cancer. I was too upset to nap so I decided to push through the pain and get busy.  I got myself out of the bedroom and went to the kitchen to bake home-made banana bread for my family. Mushy bananas, a little vanilla, some chocolate chips, some raisins and the basics, to occupy my mind, my hands, and most importantly, my heart.