For Shanna...

I just received your mail and it made me just want to reach across the miles and hug you. We seem to have developed Fibromyalgia about the same time. I have read in articles that they are now looking to see if it is inherited. My sister is being tested and my niece was diagnosed with Sjogren’s syndrome which is in the same family. My grandmother, mother experienced debilitating pain that could not be explained. They passed away before they could be tested for Fibromyalgia. I have also been diagnosed with Spinal Stenosis and Osteoarthritis.

What lead me to the doctor in the first place was the fact that I seemed accident prone. When I would do something like trip or fall, I would take longer to recover. The pain seemed to linger. After injuring my lower back several years ago, I did aqua therapy in conjunction with physical therapy. The physical therapy seemed to hurt, where the aqua therapy in a heated pool seemed to aid the healing process. I was put on Flexeril for muscle spasms and Vicodin for the pain. This helped temporarily. Arthritis runs in the family on both sides and I just figured I was getting it. Live with pain. Just deal with it. The problem with Fibromyalgia is that you just look tired or grumpy. You can’t bandage the hurt and pain, so it is not visible to others. I believe it took years for my husband to realize I was in true pain. I looked normal, I was just a klutz. Pain would never be in the same place and I thought I just kept hurting myself. My memory began to be affected. Was I just being forgetful? (Oh, let’s just blame that on stress.)

Luckily when I injured my back, I had X-rays and MRI’s done. Here they discovered the Osteoarthritis and Spinal Stenosis. Great, finally an answer to my problems! After years of using Celebrex, Flexeril and Vicodin, other pains and new pains persisted. Then the doctor sent me to an RA specialist. I thought he didn’t believe me, but he wanted to get to the bottom of my pain like I did. I was diagnosed with FMS, Osteoarthritis and Spinal Stenosis. I was upset by the news, but only for a short while. I realized now we know what it is, let’s deal with it. My medications were changed and I had a hard 2 week withdrawal from the Vicodin. Although I was not an addict, my body had been used to taking the Vicodin for years and the pain level increased dramatically. For weeks, all I could do was lie in bed. To move just a little hurt incredibly. Once the Vicodin was out of my system and the Lyrica began to work, it was like a wonder drug. A friend of mine who is a Surgical PA suggested the Lyrica and Ambien mix. I resisted the idea, I was stubborn; I didn’t need no stinking sleeping pills. I finally asked my Primary Care Physician and he prescribed Ambien and Prozac as the RA specialist has suggested that also.  The combination seems to work for me.

Don’t get me wrong, the pain is still there, but manageable. There are days when I feel no pain; there are others when the flu-like pain throughout my body takes over. On those days, I try to meditate. What I do is this:

·        Get into a comfortable position whether in a chair or in bed

·        Close my eyes

·        Breathe in deeply and slowly

·        Feel yourself breathe. By this, I mean concentrate on the inhale, feel it go into your sinus cavities and fill your lungs

·        Exhale slowly through your mouth

·        Concentrate on the breathing only, block out sounds and light from your mind

·        If certain music or sound relaxes you, play it low in the background

·        If certain smells relax you like: Lavender, Sandalwood or other scents, use them

·        Do your breathing meditation for 5 minutes or so when you start to feel the stress some on

It has affected my work and I can no longer work on stained glass like I used to. Certain movements and actions have taken me to working in more of a managerial position. Like you, I cannot do things I used to do. No more cartwheels, climbing on scaffolding or hanging drywall for me! I worked 40 plus hours a week for years. I am sure this did not help my stress levels, but I am glad I could do things that I did do. I have to remain positive. A negative attitude does nothing to help you. I have found the key to getting over the pain is to know your limitations, pace yourself. Ask your friends and family to read up on Fibromyalgia. By making others aware, it can help them understand you. With FMS you can start to forecast the weather better than any meteorologist. I feel the barometric change 2-3 days beforehand. Low pressure systems seem to be bad. High pressure systems tend to be good. Rain and wet snow are killers for me, although rain and a high pressure system don’t seem to effect me.

Pacing yourself as to what you can accomplish in a day will also help. When we were hit by the tornado, I was overwhelmed and in a daze. How would I ever get this cleaned up with my Fibromyalgia? In all honesty, that was my first thought when I went outside. After several hours I picked up a broom and told myself, “One square foot at a time, that’s how you will do it!”
It worked. I paced myself and took shifts. I staked out a gridline in my head and took it a piece at a time. Within the first 6 hours of daylight, we had volunteers in the yard helping. I had taken a break and came outside to find 20-30 people in my yard that I did not know. I cried for a minute or two at the out pouring of help. I knew with their help and my pacing, it would get done. It took a couple of months to get the yard and fences all cleared of debris. In fact, 4 months later, I still find bits of wood and shingle embedded in the ground. There were days I over exhausted myself. I learned from those days. When I feel well, I cook ahead of time and have meals frozen that are quick to heat up. There are some days I don’t even want to eat, let alone cook. You need to watch it though; it becomes easy to order out or grab a quick bite through the drive-thru and the calories can get pretty high. Then there is the fact you don’t even want to exercise because you hurt so much. Stick to simple exercises. Walking is a great thing to do. I walked for several hours the other day. Not true walking at a pace, but I went with a friend and my sisters-in-law to a festival. We walked for about 5 hours total and sat about an hour halfway in between for lunch and conversation. I was exhausted, but I have found I need the exercise necessary for maintaining a healthy and happy outlook. By doing small things and not over doing it, I have increased the level of what I can do. Family and friend support is important. I urge you to get a support system going.

I am glad you wrote me concerning your Fibromyalgia. I will do my best to support you and offer any assistance I can Shanna. I have missed you over the years and I am so glad we were able to re-connect. Keep your sense of humor; it is very much needed when you have Fibro. Keep reading my blog and hopefully we can share ideas and inspiration. Love ya! (((Hugs)))