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Fibromyaglia

It is with a heavy heart that I start this page.
Introduction | Tender Points | My Story | Links | Good and Bad days
Medical Facts | Things that work for me | Fibromaylgia Books | Poems | WebRings

Introduction

Everyone in their life has some pain, and it was my imagination that pain was normal growing up. Well it is not. For all that searching to find out what is wrong, or say that you complain too much about your health, maybe there is something to it. For all those that said it was in my head…to you I say "You were wrong." I never thought I would know what was wrong with me, a "MEDICAL MYSTERY" is what my friends would call me. I always had some strange thing that came up. I saw the doctor and we did what he thought was best for me. I had the same doctor since I was little, then I got married and moved away.
I was having major pains in my back, so I flew home a few times to get shots in my back. It was only temporary, and the pain came back with force. A few times all my joints would hurt, but I would not say a thing and go on because it was normal for me. I thought it was normal until one doctor looked at me and said I don’t need shots, then he explained to me what was wrong with me.
I have a disorder called Fibromyalgia. It is a long name, here is what it means broken down: fibro = connective tissue fibers, my = muscles, al = pain, gia = condition of. Fibromyalgia is a long word for chronic pain in the muscles. It is like having arthritis in the muscles, rather than in the bones. There are many symptoms that go with it, some of which are:
  • Tender Points (18 total but can vary where people have them)
  • Irritable Bladder (UTI)
  • Irritable Bowel Syndrome (IBS)
  • Temporomandibular Joint (TMJ for short)
  • Circulatory Problems
  • Cognitive Problems
  • Sleep Problems
  • Migraine Headache
  • Depression
Location of Tender Points
I know the list is short and does not have all of them, but these are just a few things that can be related or most people have. My problems have been mostly pain and a few others. I hope at some time to put a basic day for me up here. It seems that every day I wake up and hurt at some place or another. I’m stiff and it hurts to move. I don’t really remember a time when this was different.
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My Story:

Most recent picture of me.

Medical problems have followed me since I was young., and I never thought "oh my, I hurt". I learned really fast that I had a high pain tolerance compared to other people. For example, it took a few seconds to realize I had burned my hand or that something was bothering me. Pain has always been with me. My knees bothered me so bad in track in high school that I had my doctor give me something. I just started using it for other things. I finally worked my way off of it and just tried to do other things. My swimming during most of that time, masked all the symptoms that would point to fibromyalgia as the cause of all my problems. Instead, the symptoms that I had were treated and thats how they never really found out the cause. I had tests after tests done.

People would tell me I complained too much about hurting after doing things, that I made excuses to get out of things, it hurt me. In college I had roommates make fun of my for my medication that I was taking. So I stopped taking some of it to fit in better. I was able to keep up with the rest of the group when hiking, but I was always the first one out of breath 10 minutes down the trail. I was not tired but simply out of breath, and I was made fun of because of that.

Everything seemed to be something major with me, nothing was minor. A trip to the doctor was something I would put off until I could not stand it any longer. It was one such time in January that I went to see the doctor. He gave me the first true answer to all my clues in my life. He told me what I had, and I was shocked and relived at the same time. I ran out as fast as I could and looked up everything that I could possibly look up. It was not until recently that I have been coming to terms with it. I have my good days and bad days.

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Links:

Listed below are some links that I commonly use. I'm not sure what good they will do for other people, but this is some of the stuff that I have been reading.
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Explainations of Good and Bad Days:

Good day:

A good day might be just waking up sore with a small headache, and minor aches and pains during the day, also my back might have some dual aches.

Bad Day:

I can wake up and hurt all over. My head might hurt, it might not. My thoughts are a jumble, and there are times I can't remember what I went into a particular room for. My hands and arms will hurt, as well as my back, so bad I can hardly walk. The bottom of my feet will feel like pin cushions when I walk. To open my eyes it hurts with the feeling of small pin needles in them when I close my eyes. My wrist will feel like I have a tight rope around them and it seems my fingers hurt at every joint . My neck will feel stiff enough that I can hardly move it from side to side. If I'm lucky my stomach will not hurt, but 90% of the time, on a bad day, it kills me and I almost double over in pain from that alone. I can feel sick to my stomach and to be touched really hard by someone can cause a great amount of pain.

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Medical Facts:

Unlike commonly thought you can’t die from Fibromyalgia. There will be bad times, but it can’t get bad enough to kill you.
They person could be disabled by it though.
One easy way to describ the pain is:
As having the all-over body aches that come from massive lactic acid build up from a heavy workout the night before, only having that every single day without any real way to ease it.
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Things I have Tried That are Working:

  • St. John's Wart
  • Massage
    I started getting a massage once a month and found the benefits to be very great I found that when I started getting a massage every two week not only was I more in-tune with my body but with my mind as well. Just getting on the table cleared out my mind and while I was there I tried to just work on relaxing. It may take a while for people that are doing really bad to get used to this. But I feel it is worth the while to have that kind of physical help. I have seen great improvements while on this type of a program.
  • Stretching (3 times a day)
    Since I started this type of program I have found a change in my abilities to go extra distance and just the easy and relaxation that comes with the stretching. It is also makes your much more limber and able to take a little more stress in the muscles. It is a great help to me body right now. I have done a small study to see if not stretching makes a difference and it does. There are a few books out there to help you with this. I think that it is a great idea to try this out. You will notice that a muscle that can stretch and is more flexible can also do better with repair. I would start out slowly at first as with all things.
  • Daily Exersize
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    Books on Fibromyalgia

    Fibromyalgia - a Comprehensive Approach: What You Can Do about Chronic Pain & Fatigue

    This book on fibromyalgia "provides background and history, explains trigger or pressure-point testing, describes signs and symptoms, discusses theories about causes, recommends sleep aids, clarifies pain management, and covers exercise, diet, supplements, and medications. Williamson reviews other similar or related illnesses and syndromes."

    Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual

    Fibromyalgia & Chronic Myofascial Pain Syndrome offers the first comprehensive patient guide for managing these conditions. You'll start by learning what FMS and MPS are, evaluating your own symptoms, and identifying the tender and/or trigger points that are crucial for treating them. The manual covers chronic pain, sleep problems, and other "internal affairs," shows you how you can use your mind to counteract physical symptoms and the numbing effects of "fibrofog," and provides an extensive set of healing tools - including information on the latest medications, a nutritional program, and tips for using bodywork and other less commonly known treatments. Its comprehensive survival strategies include suggestions for coping with family and work situations, getting support, and dealing with the health care system.

    Your Personal Guide to Living Well with Fibromyalgia

    Approximately 2.5 million Americans live with rheumatoid arthritis (RA), a potentially debilitating disease that can cause inflammation and swelling in joints throughout the body. This book stresses the importance of early and aggressive medical treatment of the disease, but also underscores the importance of your role as manager of your disease and of your health-care team. It teaches practical ways to help you live better with RA.

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    These are some books that I have read on the subject and would gladly recomend them to anyone.

    Click here to see more books available.
    If you happen ot have a question about the book. Ask me I might have read it!


    Poems

    "Pain"
    Binding and holding you are
    Away from you I would like to flee
    But stay you do
    Like at bird knocking on my door
    Keeping me from what things I love
    Work at you I must
    To keep you at bay
    Please stay away
    Let me feel what I was meant to feel
    Rather than feeling of despair

    Hiding in the fog of my mind
    I think I have evaded you
    I open my eyes to see what you have left
    The sharp deep grinding reality of life
    I stand to realize my feet are hurting
    My arms don’t want to move
    It courses through my body
    One part to the next
    Leaving nothing untouched
    Hand that cries at the bending

    Stabbing at my back that won’t stop
    I want to claw it away
    Make it stop make it leave
    So that I may have a free day
    I cannot take it all the time
    It weaves within my life
    Taking all that it can
    To be free and live a life
    I will hope and long for thee

    By Kerowyn Lynne
    Copyright 1999

    "Complex Worlds"
    Words can’t explain how I feel
    What is going on in my life
    Things seem out of wack
    Turning on the wheel of fate
    Wondering what will be next

    How do I face the unseen
    Each door I see is almost closed
    Why must I face the unknown
    Days roll by and yet I know no more
    I follow the path at present

    Where can I learn
    What I need to know
    If I but follow this path
    Will I find the answer that I seek
    In the dark far corner of that place

    Why do simple things become hard
    How can someone see and be blind
    Paths cross and words collide
    Can I see the right way
    In this bright and dark day

    By Kerowyn Lynne
    Copyright 1999
    "Binding"
    I feel you invade my body
    Twinges and sparks, that make me aware
    Moving from peace and calm
    To what you are imposing on me

    I try and fight your influence
    To see that it matters now at times
    Yet I fight the unending battle
    And find at times I am overwhelmed

    How do I overcome something I can’t see
    And fight what is a part of me
    Will you ever leave me alone
    From you tightening grasp

    By Kerowyn Lynne
    Copyright 2001


    This is not complete.

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