Life with Fibromyalgia, wrote 4/22/10

Life with Fibromyalgia-Written on 4/22/10-So life with fibromyalgia is not an easy route. I have pain everyday of my life. But it’s to what extent I can handle the pain both mentally and physically. Today I can’t handle it either ways. The pain really gets me down. I have so many physical ailments that accompany my illness….mitrovalve prolapse, IBS, migraines, shingles, and a lowered immune system because of the syndrome. I am on some meds but mostly minerals, herbs and vitamins. I am trying to do this as naturally as I can. But when the pain is as bad as it is tonight there is nothing that I can do. I just have to suffer through it and hope that tomorrow is a better day. This syndrome really gets me down. I can’t have a normal day or life. The pain is always there and my nerves are always rapidly firing. So something always hurts. Some have occasional back aches, headaches and can take something for it to get rid of it. Perhaps a massage or a cold/heat pack can help. Not me. First, don’t touch me when I’m in pain…it sends me off into more pain….then some meds aren’t strong enough to settle the pain down. So I sometimes lay in bed in pain, crying and can’t sleep or anything. So the next day I’m tired, stressed and feeling like crud. And without sleep the body can’t heal or rejuvenate itself. I have to keep a reserve of energy on my good days by sleeping in on my days off. I catch up on my sleep from the work week on my days off. Sitting in my chair and trying to work and talk to customers, is often a very big task. The pain is horrible and trying to concentrate on something else in difficult. I often ask God what did I do in my life to deserve this. Well, I can think of a few things. But I know that God is an all loving God and wouldn’t punish me for my transgressions this way. But wow, the pain is so bad. I cry a lot about it. They say that suicide is high with Fibromyalgia patients because some can’t cope with the everyday pain and never getting relief. So much research can be done to help us, as patients. I just need to get the word out about this syndrome. So many people don’t understand it because as patients we don’t complain about the pain and put on our happy face when we are out in public so no one hears us complain. Or we stay home cooped up like a hibernating bear. It’s such a difficult syndrome. I’ve lost jobs, missed a Sox game, lost friends, and just plain disappoint myself. I can’t describe the feelings I have about this syndrome but there are days that I am so mad at it. I want to kick it out of my life. But I seem to kick people out of it instead. I just don’t think anyone can handle my syndrome or begin to understand what I go through as a patient with this syndrome. It scares me that I might never find someone who can take care of me the way I need to be cared for.

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One thought on “Life with Fibromyalgia, wrote 4/22/10

  1. Hi, I remember when I had the same feelings that you have about fibromyalgia. I felt like I was letting it get the best of me, and I was. Until one day, I said to myself – okay self, you have fibromyalgia, and it is nobody’s fault. It is nothing you did or did not do to get this. Some people have MS, Cancer, Sickle Cell, but you have fibro. So, in order to live through this horrible syndrome, do not connect with it. Fibromyalgia seems to get its strength from stress, nerves, and the lack of sleep. The more stressed out we are, the less sleep we get, and the more agitated that we become, fibro is at its height of glory, and we are feeling its joy in the form of chronic pain, memory fog, lack of concentration, pain all over our body, up all night, IBS, and more. I have learned to try and tune fibro out. I know, it is hard, but it can be done. I know that I am in pain everyday. I wake up feeling like someone just beat me up. I wake up feeling like I have not slept. My eyes hurt, neck, back, legs, side, back, chest, everything hurts. I am totally miserable with this pain. BUT, when I focus in on it, the rest of my day is all downhill. When I go about my day as if I am not in pain, I can get more done. I do things like take walks, go window shopping, and sometimes buying myself something, just because; or calling old friends, watching a good movie, taking a hot bath, and drinking a glass of wine. At night when I am in bed trying to go to sleep, it is more difficult because I am laying still, and it is silent in the house and all I hear is my pain kicking my butt, speaking to me loud and clear. I use to take anxiety meds, but now I take nothing at all for my fibro. I refuse to be drugged up with vicodien and all the other prescription narcotics that only make you want to pass out. I would be so lethargic that I could not work, drive, or anything. So, I decided not to take nothing. Sometimes at night I feel my body quivering inside as if I swallowed a cell phone with the vibrator on. It aggravates me to no end, and I still do not know what this is. It’s as if my nerves are off the hook or something. After a while, it calms down. In the mornings it is happening again, until I get up and begin to move around. When you have fibro, there are so many other tag a long friends it have. I have the heart palpitations where the so-called adam’s apple is (I think this is because of the GERD that I have also), but then again, I heard people with fibro suffer from palpitations too. Not sure. My point is, yes we have fibro, but just do not own up to it completely where it consumes us. We know we have it, we confess that we are victims of this relentless syndrome, but don’t become friends with it. Treat it as an alien that has invaded your domain, your house (your body), which it has. Your attitude tells it that is is not welcome, and that you will not give it the attention it is craving. Try to ignore it as much as you can, and you will be suprised that sometimes you will forget that you are having pain. When you focus on it, you feel it more. Less focus, less pain. It does not work all the time, but sometimes is better than none.

    Barbara

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