Fibromyalgia. - An open letter to my friends and loved ones.

I wanted to write a letter to explain to all of my friends and loved ones what Fibromyalgia is like and what I go through on a day-to-day basis. This is also useful if you have someone else in your life that is suffering from FMS. Thanks for taking the time to read this.

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia though they might have wished they could on really awful days. I can't control how often I feel good or how often I feel terrible. If you want to read articles about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symp­toms I don't want you to think I'm making this up.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medica­tion can make some of my symptoms more bearable. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes.

There's no cure for fibromyalgia. It won't just go away. If I am func­tioning normally, I am having a good day. This doesn't mean I'm get­ting better, because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks, or even months. But a morning can suddenly turn into a terrible afternoon. I get a Feeling like someone has pulled out a plug and all my energy has just gone out of my body. I may get more irritable before these flares, and suddenly get more sensitive to noise, or just collapse from deadening fatigue. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen, because there isn't any way for me to know. Sometimes this is a real bummer and I'm sorry.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constantly in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, Fibromyalgics should have them for pain. Sometimes I just hurt all over.

Besides pain we have muscle stiffness, which is worse in the mornings Some times when I get up out of a chair I feel like I'm ninety years old. I may ask you to pull me up. I'm creaky and I'm klutzy, trip over things no one can see, and I bump into the person I'm walking with and I drop things and spill things because my fingers are stiff I or my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination; it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall.

Because I feel badly most of the time I am always pushing myself, and sometimes I push myself too hard. "When I do this, I pay the price. Sometimes I can summon the strength to do something spe­cial, but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to under­stand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations like my pain and my other symptoms are invisible but they are there.

Another symptom I have is problems with memory and concentra­tion, which is called fibrofog. Short-term memory is the worst! I am constantly looking for things I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys, which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself normal for fibromyaglics most of us are frightened that we are getting Alzheimer's.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like intolerance to everything. To noise, espe­cially certain sounds like the television, or shrill noises. To bright lights, to fluorescent lights. To smells like fish or some chemicals, or fragrance or perfume. I also have a problem with heat and with cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse, and I get exhausted. Sometimes I just need to get away from something, I just don't know how to say it. I know that sometimes this means I will have to go outside, or out to the car, or home to sit alone, and that's really all right. Sometimes when I feel lousy I just want to be by myself.

When I'm like this there's nothing you can do to make me feel better, so it's just best to let me be or offer generalized comfort and love.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. can talk about solutions to this.

All these symptoms and the chemicals in my brain can make me depressed, as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm so grateful. I can't always admit it at the time, but I'm admitting it now.

I have other symptoms like irritable bowel and bladder pain that will take their toll on my physical intimacies. Some of these symp­toms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things.

I have made a promise to myself and now I am making it to you. I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not show it always I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

This is just an overview of what I go through on a day-to-day basis, Please take the time to realize how some of this may apply to your friendship or relationship with me and know that I am trying to find the best way to relate and interact with all of you.



The Reverend Purrv23
::::: Creo Ergo Sum :::::
I Make, Therefore I Am.