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.

Fibromyalgia and Biofeedback, wrote 6/14/10

Let’s talk biofeedback and fibromyalgia. I am a migraine sufferer, also, along with Fibromyalgia. I have suffered with migraines since I was 7 years old and I am now 35. It has been a long haul learning about natural ways to deal with them. One thing I learned from Dr. Robins, at the Robins Headache Clinic, is biofeedback.

Biofeedback is a process that enables an individual to learn how to change physiological activity for the purposes of improving health and performance. Precise instruments measure physiological activity such as brainwaves, heart function, breathing, muscle activity, and skin temperature. These instruments rapidly and accurately “feed back” information to the user. The presentation of this information — often in conjunction with changes in thinking, emotions, and behavior — supports desired physiological changes. Over time, these changes can endure without continued use of an instrument (obtained from The Association for Applied Psychophysiology and Biofeedback, Inc, on 6/14/2010 at http://www.aapb.org).

Dr. Robins and his staff taught me about biofeedback and gave me tapes to listen too. I was attached to a body temperature device that measured my temp before and after the biofeedback session. It was amazing that I was able to lower my temperature with the biofeedback exercise.

I would highly recommend learning biofeedback techniques for your particular ailment. Fibromyalgia sufferers can use imagery to learn to ease the pain and relax your body. Keep this in mind next time you visit your doctor or counselor. They might be able to direct you to the proper avenues to learn about this technique.

Supporting People with Fibromyalgia, wrote 6/12/10

My goal in life is to be there for people with Fibromyalgia.  It’s such a silent disease that no one knows you have it, until you tell them.  When you tell them, they look at you like you have an alien coming out of your stomach.  No one really knows about this disease and no one really asks when you tell them.  No one sees us in pain because when the pain is bad enough we stay at home in bed until we can bear it.  The public never sees our pain. 

I put a smile on my face and trot on.  When I tell people that I am always in pain, they take pity on me and don’t know if they should touch me, if they will make me crumble or hurt me. 
Gentle hugs is what we say in the Fibromyalgia community!

It never ends, wrote 6/12/10

Life as a Fibromyalgia sufferer never ends.  It keeps going.  I can think that I am having a good day one moment, and the next it all falls apart.  Finished my cup of coffee (1/2 decaf and 1/2 reg), felt good.  My body didn’t hurt, well for the most part.  I have pain every single day, but I have to stop and assess what I can tolerate and what is unbearable.  Today it was bearable.  That was until all hell broke loose.  Stress can just trigger so much in my body and make a chain reaction.  The stress comes on, I get upset, then I tense up.  The tensing causes my body to go into a flair and I feel like I want to jump out of my skin.  I had to take brisk walk this evening on one of my work breaks just so I could get some of the junk off my shoulders.  I have someone in my life that is causing so much stress and every time I think I rid myself of him like the dirty trash he is……he comes back looking like something the cat drug in.  And makes my life a living hell.  And it’s easy to read this and say don’t let the person bother you.  Well he is defaming my character, has effected people’s thoughts about me, has ruined relationships in my life (and has told me that’s what I get for leaving him)….I dare ask what more he could do.  It’s like a loose cannon and I don’t know where he’s lurking.  It’s really scary and really causes me to loose sleep and makes my whole body flair up and creates pain so bad.  Tonight I am having pain radiating down my arms from my shoulders, my lower back hurts and my upper thighs are killing me.  My calves are burning but I will chuck that off to my brisk walk this evening in improper (crocks) shoes.  I didn’t even want to stop to put on gym shoes.  I just shot out the stinking door.  So now I have to take a benedryl in hopes that I sleep it off and I am not too drowsy in the morning.  I have a full day planned.  Here’s to hoping for a pain free day tomorrow.