Sunday, April 6, 2008

From One Fibro Fighter to Another

Today I thought I would share some tips on managing Fibro pain and brain fog. While there are alot of good websites out there with fantastic information on the "big" issues regarding fibro pain and brain fog, I think it would be helpful to share some everyday management skills and secrets that pertain to the smaller issues that for us are monumental.

Whether we are working a mainstream career at an office, or working our own business from a home office, it's important to manage our Fibro on a day to day basis so that we can keep up with the business at hand.

Now being a wife, a mother to six children, and a businesswoman, it's very important to me to be able to keep active and "together" as much as possible. I don't want to miss out on life! Here are some of the ways I've found that help me manage my pain:

(I'm not endorsing any one product. These are simply the ones that I've chosen for my personal pain management.)

1) Taking medicines on a regular schedule. Now this may seem silly to post, but the reality is that alot of us get either sick and tired of being medicated, or we forget to take our medicine on a consistent basis. My doctor and I have found that Lyrica and Ultram ER work best for me. There are other medications out there that work better for others. **Always consult your doctor before making changes in what you take**

We chose Ultram ER (extended release) for me because it works to block the pain signals in the body, and it's consistently released over a 24 hour period so there are no breaks in pain relief on that level. I take Lyrica in the morning and again in the evening before going to sleep. This adds another level of pain relief. In this way I consistently have both working together in layers to keep me functional. I've been able to gain between 75 and 85% functionality using these together. Before I was diagnosed, I was at almost 0% functionality and walking with a cane so I'll take 75-85% gladly.

If your current medications are not helping, or not helping enough, don't stop trying to find the one (s) that work best for you. I absolutely know how frustrating it is...believe me. However, it's your life and your QUALITY of life that's at risk if you don't keep trying. Resolve that you are going to be a Fibro Survivor! Fight for every ounce of quality of life that you can find!

2) Be honest about how you feel. If your pain level on a particular day is getting the best of you, don't keep it to yourself. Say "no" or "can we make arrangements to do such and such at another time?"

3) DON'T go to work 1/2 functional! It's better to take a sick day and rest than to expend what little energy you have and hurt even worse the next day. If you can't take a sick day, you have to find ways to help yourself stay at a safe level to work. Increased fatigue and/brain fog can mean costly mistakes to your business and/or business relationships. If you can, have someone else drive you that day. If you have errands or tasks that need to be done, pick the top 1, 2, or 3 and leave the rest for another time.

4) I've found that when I have super painful flu-like aches in my lower back, that a steady stream of heat is very comforting. I use Thermacare heat wraps. I can have one on under my clothes and not be restricted by chords for heating pads, or carrying a hot water bottle. I've tried several heat wraps and these heat up nice and warm and maintain their heat for a long time. I've had them on for as long as 8 hours before. I love them! They are somewhat expensive on a tight budget, but my husband and I agree that it's more important to have me functional and comfortable. When money was a little tighter, he bought me a large heating/cooling pad. It's filled with a gel that you can either freeze or heat up in the microwave depending on the relief you need. I still use that pad when I don't have to be up and active. It's wonderful!

5) Take frequent breaks to stand up and either walk around, or shake out your arms and legs. The more we stay still, the more the pain builds and builds in our muscles. We have to keep them moving in order to manage our pain effectively. Make sure not to sit for too long without at least standing up at your desk and shaking out your limbs for a minute or two.

Believe me, I know there are times when getting out of bed, let alone walking, is impossibility. I’m thankful for my husband because he will physically lift me up and get me on my feet so that I can get my muscles moving. He won’t let me stay motionless because he knows it’s like pouring gasoline on a fire and will just make the pain worse in the long run. As silly as this may sound, when I wake up to a particularly painful Fibro morning, sometimes I will roll over on my stomach and curl my knees underneath me. Then I rock back and forth much like an infant does. It gets my muscles moving until I can get out of bed. How’s that for “real world”? lol…

6) To combat brain fog and forgetfulness, use whatever tools you can find to help you stay on top of tasks. Whiteboards, calendars, planners, sticky notes, your calendar programs, pop up reminders, even use the alarm feature on your cell phone if you have it. There are even some days I forget to check my notes, so I’ll set an alarm on my phone to remind me to check them. If I find myself “zoning out” a lot on a particular day, I find a loose fitting rubber band to wear on my wrist. I give it a light snap against my skin to pull me back to the task at hand.

These are just a few of my personal tools for managing my pain and fatigue. As I think of more, I’ll be sure and share them. Feel free to post some of your own tips and tricks for us to learn. Locking arms and supporting one another is what it’s all about!

Have a great day today!

1 comment:

Peter G Skinner said...

Hi Lynn,
What a fantastic beginning of my day to find your article on the MS site and now your blog. I've lived in Iceland most of my life and guess what - I have Fibromyalgia! I have been dealing with it more or less alone and slowly figured out a way to keep the symptoms to a minimum. First off, my doctor gave me morfin, codine, steroids (for the swelling), sleeping pills and anti depressants to name a few. I also used an "Elephant oxygen mask" at night to sleep better. I couldn't drive anymore as I was always tired and dangerous in traffic. I spent two months in rehab to learn to live with the pain and stumbled around with a cane at age 47 and felt like 87.
Then one day I found what works for me. To begin with, I changed my lifestyle completely. Took everything white out of my diet (sugar, salt, flour and white rice), quit smoking and using alcohol. Doing this, I attracted more good things to come my way and was introduced to Herbalife. To make a long story short, I no longer need any medicine. I still have Fibromyalgia and act accordingly but now I sleep like a baby and am usually without pain. Omega 3 has helped me with my mental state as well and today I am full of hope and look forward to the future!
Furthermore, I found out that being in a warmer climate helps also, so I am moving back to the States and later I will live in Panama. Iceland is simply too cold :)
I am writing this as I am passionate to reach out to others and to let them know that by giving our body the right nutrition, it will work wonders in healing itself. I sincerely hope that my story will help someone out there. For me that would mean a sense of joy and happiness - and the greatest gift of all!

Peter G. Skinner
Iceland