Fibromyalgia, my story - My Life with FMS-ifoundthesun

Welcome To my Life

NOTE: I am not much of a writer. This story is more a form of therapy for myself. I am writing it after a bad flare, so bad that I just wanted to give up and not do this anymore. I hope that someone reading this will know, you are not alone. I also wanted to let you know the reason for this page being different from the others: The Flames on the top and all the red is to show what 'our bodies' feel like daily.

I have always been an over achiever. The typical type ‘A’ personality. I had been an active outgoing social person. Typically I worked more than one job since high school. I was never a “prissy” girl. I hung with the boys.. I Loved engines, NASCAR and the smell of Unical at the racetrack as much as they did. I had worked for several years as an exotic animal trainer. Was an avid reader & I loved to learn anything new.

Fibromyalgia first roared into my life after a work related injury that broke my tailbone & slipped a disk in my lower back. That was in 1996. (Now, when I think back to my childhood many symptoms were there)

After the expected recovery time from the broken tailbone I was still in excruciating pain. Only, the pain seemed to have spread about my whole body. Not only did the doctors think I was crazy I thought I was going crazy.

I could not walk, stand, sit, and lay down for more than 15 minutes at a time. I had loved my job. I wanted to work; I was not malingering as one of the doctors suggested. I needed the money; I could not stand being in pain! I wanted to go to bed and wake up whole again & have this nightmare end. Go On with my life!

I went from doctor to doctor. Sent for test after test to find out what was happening to me. The insurance company was becoming more & more difficult to work with. My employer kept calling asking when I was going to come back. It seemed that my life was falling apart.

It was not just back pain that was causing me troubles. I could not sleep due to the pain. I was up at all hours. When I did sleep I dreaded waking as I felt like I had been run over by a truck several times. My body was stiff as one with rigormortis. I had to stretch every muscle in my body slowly before even thinking about placing my feet on the ground. My body was like someone had poured concrete over me and I had to slowly break out of it. Noises, lights and smells made me sick, shaky & lightheaded. Fast movement’s and crowds caused a ruckus in my body. Any menial task just seemed to sap the energy from my body. My brain seemed to have quit functioning in the old manner. I could no longer remember things. Such as my birthday, home phone number, even my husbands’ name! At times I would know the answer in my head, but when my mouth opened it either said the wrong thing or I stuttered and said nothing at all knowing what was going to come out would be wrong.

Finally in 1997 I was sent to a Rheumatologist and a pain doctor which both diagnosed Fibromyalgia. Fibro what? There was a name for what I was suffering with? There are others just like me? I just sat down and cried. To be validated was such a relief.

Okay now we seemed to be getting somewhere. My first question was what do we do now to fix me? The Rheumatologist said aerobic excersise, drink more water, and watch what I eat. There is no cure, but you can manage it & feel much better soon. What? Aerobic excersise? I struggle to get out of bed and get dressed how am I to excersise? The Pain Doctor gave me several medications to try. As well as physical therapy and massage therapy & trigger point injections for Chronic Myofascial Pain. I went through many different medications until something seemed to work. Did these medications give me total relief? NO. Is Fibromyalgia gone? Once again I have to say NO.

During the whole ordeal before diagnosis any friends that my husband and I once had, disappeared. Some did not know how to deal with a sick person. Some called for awhile but when I was unable to make plans or do things with them, they just stopped calling. Although I must say you can tell whom your real friends are when you get sick. I am not just talking about a short-term illness. Get something terminal or chronic and only the real friends stick around. There were two friends of ours that stuck around. For this I am grateful & I cherish them even more today.

Family is another one to deal with… If your family does not fit into one of the categories that the friends do then they are either still doubtful that you are in as much pain as you say. They do not get what my illness is like on a day to day basis. Or they are trying to offer you some quick fix that they heard is working for someone else that has a similar condition. Or, if you are lucky they are totally supportive of you but they still feel lost because they want to fix you and don't know how.

Since my pain having being given a name I have had to go through a grieving process. I am no longer the person I once was. I can no longer do the same things that I used to enjoy. There is no such thing as planning an event. I can't just pick a date week from now, or even a few days from now, and say 'I'm going to do this, this and this' because I may not be able to. This has been difficult. I used to keep a very clean house. Everything had its place. Now, I can’t always remember where its place was. My illness has profoundly affected my emotional and spiritual life not just my physical self. One of the biggest changes being ill has made in my life is that I am spending my whole adult life not planning for the future. I can only live day by day, moment by moment.

Some days I have to breathe through the pain that is gripping a hold of me and shed silent tears. For there are things to be done. A child to take care of . Parent teacher conferences to attend. Soccer games to chauffeur. Swim Meets to cheer at. Life is still going on around me & I have to do my best to stay involved in the lives of the ones I love. Some days I feel pretty good. Some days I want to die.

I do not like it when people ask how I am doing today or say something stupid like “But you look so good.” Look into my eyes, you will see how I am doing.

When a doctor would ask me about my pain, then they say on a scale from 1-10. #1 being just fine & #10 being you have to go to the emergency room. To me this scale does not exist. For #1 does not exist. I cannot remember what it is to feel fine. And #10- I will not go to the emergency room because I know they cannot help me. So I had to make up my own pain scale. I have described each level 1-10 what it means to me. I also had to come to a new reality… #1 does not exist. #3 = now what is a good day for me, I can cope and attempt going to the grocery store… #3= what may be normal with limited pain. #3= pain I can tolerate when I do not think about it. #10= excruciating pain. #10= I do not want to talk or try to think about anything. #10= I pray that death will take me away.

Just if you will, imagine having the flu. Remember how you feel… you ache and just feel miserable. Now imagine if you feel like that all the time. This is a good day for me. (hence #3)

Typing is painful; writing is so much more difficult. My handwriting used to be not so good. Now it is pretty much illegible.

My hands and feet are typically so cold. It feels like thousands of tiny needles poking into them. I live in Florida and wear sweats and slippers year round.

Foggy is what I describe my brain & thought process. I forget the simplest of things. I can be talking and mid sentence I just stop. For I have forgotten what I am to be saying. At times I look at my family member, if they seem to have a confused look on their face I know I have said the wrong word. Example: I may have asked my daughter to “Please hand me the car.” When in fact I meant to say “Please hand me the remote.” I once had a co-worker that said talking to me was like playing a never ending game of shrades.

On good days I can add to the joking with my family & friends. My husband says I am on dog frequency. I hear and smell things that others cannot. That is until the sound or smell comes closer to become apparent to others. The buzzing sounds of florescent lighting makes me nauseated. As well as other noises, smells and vibrations. I get what I call sensory overload. I become nauseated, tremble, break out in a cold sweat & have to get away from these things & sit down as soon as possible.

After a long day I become tongue tied and confused in my speech. I also have Chronic Myofascial Pain which the facial fibers have tight knots. This is a problem that I have to constantly be working on. The perpetuating factors. Headaches, migraines are a constant battle. Shoulder muscles becoming tight or knotted. Thera Cane has become my good friend, to work out the knots.

The symptoms seem to be never-ending. I have not listed them all here. If you too have FMS then you know what I am talking about.

Persons with FMS are not all the same. Some have few symptoms, some have many. Medicine affects us all differently. What works for one may not work for another. Some people have more severe problems than others do. Some persons cope just fine. I admit, there are some people that I know that also has FMS and I sometimes think to myself, “How can she be feeling okay today when I feel like hell?” Then I have to remember that FMS is such a mystery even to the medical field. I do not utter my thought or I will have become ‘one of them.’ The person that says to you I know someone with Fibromyalgia and they are just fine, or and they do this and that. The person that I have to hold back from punching in the face for they dare to say that to me.

I am still working and counting the days until my daughter graduates from college. Just six more years I tell myself. I hope I can hold up that long and continue to work. If only I could think of something to make money and stay at home to do. That is the idea. But then again isn’t that almost what everyone's ideal job?

I currently have a family doctor that admits not knowing too much about Fibromyalgia, but is understanding and willing to try to help me. I still visit the pain doctor on occasion, but I have to pay out of pocket for him these days & frankly he costs a bundle. I also see a new Rheumatologist that is more much understanding and helpful than the first one that I saw and even knows more about treatments for FMS.

Other than my doctors I have a great little support system. I am blessed with a wonderful husband that not only has to work and end up doing most of the household chores including cooking, cleaning, and doing laundry. I know this must be extremely tough on him too. I know he struggles with wanting to help me but not knowing how. This is not fair to him. This is not the life we dreamed of together. Sometimes I wish for his sake he could just leave so he could live his life, as he so wanted to do. I am grateful that he stays. I do not know what I would do without him. He is the best man that I could have ever asked for.

I have a beautiful daughter that can be so helpful and understanding when she wants to. I feel so bad for her that she has a mother that cannot do things with her like her friends have. She once wrote a letter to a television show that portrayed Fibromyalgia as something simple to 'just get over'. Her letter broke my heart, she said things that I have always known hurts her deeply but will never admit to me. Mentioning all the things that she is missing out on because I have this illness.

I have a close friend that is always trying to find something else that I can be doing to make money and to make my life easier to cope with daily. This one friend stuck by me through all my good days and bad offering a hand even when it is not asked for. Showing up at my house just to say hello or helping me rebuild a garage in a weekend. Always there for a hug when I need it.

Another part of my support system is a dear friend that I think I have known most of my life. She does not live within driving distance, but is always there to listen to me in my most desperate times of need. She always seems to know when to just listen or step in and remind me that this horrible day will soon pass and I will once again be at the point that I can cope without so many tears.

I also wanted to mention someone that I have never really met. Although we have 'known' each other for over five years now. She has always been there when I needed someone to gripe to, laugh with and cry with, One day I know we will meet.

When I was first diagnosed with FMS I went straight to my computer in search of information and others like me. I had joined a wonder FM’ly listserv Fibrom-L. I read every message that comes through, although I almost never post. This group of people has been a lifesaver to me when nobody else understood.

I am blessed with countless family & friends that I love and cherish. Whether they are persons that I see daily or just keep in touch with on the computer. I even had someone that I keep in touch with on the computer that took the time to make me copies of relaxation & guided imagery tapes & mailed them to me when I so desperately needed relief. Thank you! You are an incredibly kind and wonderful person and hold a special place in my heart!

I want to THaNK everyone that is always there for me. I LOVE YOU!

I am not writing this for you to feel sorry for me. This is my life and I am coming to terms and dealing with it. I had to find the place within myself to make peace with with my illness. They have said God does not give you what you cannot deal with. Sometimes I wish God did not think I was so strong. This “invisible disease” has not been so invisible to my family. We all deal with it on a daily basis. It has changed the lives of all of us.

My waking dreams consist of a cure being found. Fibromyalgia being considered by all as a real disease not just some wastebasket diagnosis or a collection of symptoms.

Thank you for taking time to learn a little about me.

{GENTLE HUGS}

Kris^i^ a.k.a ifoundthesun

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Navigating the Body- A Visual Project
Read More Personal Stories of three womens lives living with FMS and other Chronic Pain Illinesses.

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