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Tuesday, April 14, 2009

Understanding FMS, part 1

For anyone who knows someone who suffers from Fibromyalgia:

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3.My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appetite is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well or that I have been cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be.

Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies!

Author unknown

My personal contributions:

Don't ask me how I feel unless you really want to know. I'm not going to lie and say I feel "fine" just to make you feel better.  I'm not fine.

Don't ask me if I'm getting better. There is no "getting better" with Fibromyalgia. Everything changes from day to day, minute to minute, even second to second. It's all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.

I'm not asking for your pity. I'm asking for your understanding and compassion. If you really want to help me, hold the door open for me when I have to use my pimped-out walker; or just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective.  But one happy or funny moment could change my day.

If I'm crying, it's ok to talk to me. I don't cry (much) from the pain, unless it's one of my "episodes" that landed me in the hospital last year. I cry because I'm stressed out, exhausted, overwhelmed, pissed off, feeling emotional, or just plain frustrated. Sometimes it's just one remark that sends me over the edge. Sometimes I'll cry if I'm asked about my pain, though I'm getting better at this. At any rate, I cannot control this any more than I can control the weather. 

In short, don't avoid me because you don't want to deal with my issues. I don't want to force them on you and, for the most part, won't even mention them until you ask. Unless you're my Momma. I seem to unload all my pain and symptoms onto my Momma because she'll actually listen to me and not judge.

Which brings me to my final rant: don't judge me. I don't have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. I'm always afraid I'm going to OD because I have to take SO MUCH pain medication just to be able to bring the level of pain down to something more bearable. It never completely goes away. 

I can understand that maybe some feel FMS is not such a big deal. After all, it's not cancer. It's not heart disease. So, it's not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. I've never told my family this, and it may come as a shock to those who know me, but I considered it myself on a few occasions. Dr. Jack Kavorkian (remember him?) assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don't say this to fibro sufferers. This is not a harmless disease.

Fibromyalgia is a very hard disease to go through alone.

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