Re: an article I wrote about my FMS

Hi Katie-

I liked your story. I especially liked the unique analogies you came up with.
Just good descriptions of how we might look if fibro was visible.

I think you have a wrong date though. The American Rheumatology Association
described Fibromyalgia in the 1800's. It was called Fibrocistitis (sp?) back
then and in 1992, the name was changed to Fibromyalgia and recognized by the
WHO.

Just a detail, I know. ;)

Nancy

On Sun, 8 Jan 2006 18:58:03 +0100, "Katie" <vfolle@xxxxxxxx> etched permanently
into the ether:

>Below is an article that I originally wrote in French and then translated
>into English for my mother. My mother tongue is English, but since I live in
>a french-speaking country I sometimes write articles for a local newspaper
>sold by homeless and destitute people.
>
>Anyway, it tells my whole story with fibromyalgia. I hope it will be
>interesting and useful to some of you.
>
>All the best
>Katie
>
>____________________________________
>FIBROMYALGIA FROM THE INSIDE
>
>You may not read this article to the end because it concerns pain. Usually,
>we would rather avoid hearing about other people's pain. Perhaps that is
>because pain is subjective and because if someone we know is in pain, there's
>not much we can do about it.
>
>
>
>In spite of this, I am going to tell you about my experience with chronic
>pain. It was suggested to me that I write this for therapeutic reasons and I
>accepted because I feel it is not possible to keep silent any longer. I hope
>that after reading this, healthy people will better understand fibromyalgia
>and also that those who suffer from this disease will be encouraged to tell
>their own stories.
>
>
>
>The word fibromyalgia may have caused to you stop reading already. It is a
>word that often causes suspicion and prejudice. There are still people who
>believe fibromyalgia is a diagnosis for malingerers or complainers. Perhaps
>out of their own feelings of frustration, doctors would have us believe
>fibromyalgia is "all in our heads". Too often medical professionals seem to
>doubt our word on the subject of the intensity of our pain.
>
>
>
>It is common to hear that we "look good". This is one of our most perverse
>symptoms: looking well in spite of chronic pain and fatigue. Strangely, to
>ourselves in our own mirrors, we look ill and reach for the blush and other
>cosmetics.
>
>
>
>A few years after the initial diagnosis, we realize that we cannot spend the
>rest of our lives in bed, so we go out, we smile, we even laugh. We try to
>have a life, or something resembling a life. This is when people start
>wondering if we are really ill. We are often punished in this way for what,
>after all, is simply our courage and determination.
>
>
>
>Although fibromyalgia was officially recognized in 1992 by the World Health
>Organization, the medical community has yet to find its cause and treatment.
>Theories abound however. Some researchers believe that the brain amplifies
>pain signals, others believe fibromyalgia may be a virus or an intoxication.
>Since it affects a large majority of women between the ages of 30 and 50, it
>could be caused by hormonal imbalance.
>
>
>
>>From the inside it feels like extreme tension and an overload of stress. I
>sometimes call it "perma-stress" because it feels like being stressed on a
>permanent basis.
>
>
>
>More objectively, fibromyalgia's main symptoms are spasms and pain in the
>muscles, tendons and ligaments accompanied by profound fatigue. The pain can
>be aching, stabbing, burning and can travel around the body in a matter of
>hours or affect one part of the body for weeks. Other common symptoms are
>headaches with nausea and vomiting, urinary urgency, irritable bowel,
>depression, anxiety, memory and concentration problems, muscular weakness,
>tingling, numbness, sleep disorders. But this is the sort of thing you can
>read about in any article on fibromyalgia. In this article, I intend to
>describe fibromyalgia from the inside.
>
>
>
>You're still here and I thank you from the bottom of my heart. There may be
>only a few of us now. People who want to know how a person lives with
>fibromyalgia. I don't want to generalize. I know that even if we all have
>much in common, each person with this illness has their own story. I also
>know that there are much worse illnesses and I don't want to complain
>unnecessarily, but I also know that other people with FMS will agree that we
>need to tell our stories.
>
>
>
>Mine began in 1998 with intense fatigue. I didn't know I could be so tired
>without dying. For three months I spent most of my time asleep. Sometimes
>the idea of taking a shower or even cutting my fingernails seemed to demand
>too much energy. I was diagnosed with depression but I didn't care, as long
>as they let me sleep. After three months of this I tried to go back to work
>but only managed a few days. Three more months of rest and I went back to
>work part time.
>
>
>
>I was pleased. I had been through something very frightening. It had been
>something approaching my idea of what dying would be like, and here I was
>back at work and back to normal life. What a relief! But I wasn't aware that
>my immune system was weakened and that I would catch all the flu and
>bronchitis that came my way. I missed more work because of respiratory
>infections and then a very bad case of flu that was going around.
>
>
>
>I ended up resigning from my job because of the attitude of my fellow
>workers. I knew they were under stress, but I was shocked to realize they
>were harassing me and I was in no condition to fight them. They had lost all
>sympathy or compassion if they had ever had any.
>
>
>
>Around that time I began to have acute pain in one of my hips. I could
>hardly walk, so I saw a doctor who recommended I see a rheumatologist. It
>was the rheumatologist who diagnosed fibromyalgia.
>
>
>
>At first I didn't really believe it. Especially when the pain in my hip went
>away. I had moments when I felt normal, even though the difficulty I had
>moving around gave me the impression I was wearing a too-tight diver's suit.
>But sometimes it seemed to me I had had symptoms of fibromyalgia for at
>least 30 years. I had always thought they came from stress. I had often
>struggled with loss of balance, dizziness, painfully tense muscles,
>headaches. It seemed I had always been easily tired out and stressed too.
>
>
>
>But the illness got worse. Not only my hips, but my shoulders, upper back
>and all along the outside of my arms felt as if tendons and ligaments were
>pulling, tightening up to breaking point. I couldn't even stretch without
>something getting stuck. One day, I fell and hit my head because my arms
>were too tightly held to block my fall. I was taken to the hospital for
>stitches in my head. When I got home, I realized that when I changed
>positions from sitting to lying and vice-versa, the world swirled around me
>uncontrollably. The tensing up from fear caused even worse pain in my
>shoulders. The rheumatologist gave me cortisone injections in my shoulders
>which helped temporarily. It was a nightmare that lasted four months before
>I no longer experienced vertigo with each inclination of my head. I held on
>tight, but I often wished I were dead during those 4 months.
>
>
>
>Then came a few years where I hardly went out at all because I never knew if
>my hips, my legs would let me walk. I was afraid that I'd get stuck
>somewhere and not be able to get back home again. My shoulders burned almost
>permanently and I fell asleep several times a day. I just plopped over onto
>a cushion and slept. Often after one of these short naps the pain seemed a
>bit better, but then it started up again.
>
>
>
>I did a strict minimum: laundry, shopping, cooking, walking the dog. I
>couldn't really play with my dog any more because bending over, picking up
>and throwing a stick hurt too much. That saddened me. It seemed my life as
>I had known it was over for good.
>
>
>
>I had such bizarre symptoms : if my husband hugged me too hard, a shoulder
>could stay stuck and painful. Once he managed to unblock my shoulder by
>hugging me from the opposite side! If I were in a car or bus that hit a
>bump, my shoulder could easily get stuck and very painful. There was no
>telling how long it would stay painful. If I had a cough, the muscles in my
>upper back pulled so hard it made me cry.
>
>
>
>The rhumatologist had suggested I do water aerobics and that was very
>helpful. Moving in the water is so much easier because your body is
>supported from all sides. I feel hardly no pain at all in the swimming pool.
>However, it's important to find the correct amount of exercise. Too much
>physical exercise can cause a worsening of the symptoms of fibromyalgia.
>
>
>
>My few activities tired me out as if I had worked ten hours a day. In spite
>of that, I did my best to continue doing my usual chores at home so that my
>husband would not have to feel inconvenienced by a life with an "invalid".
>Why? Was I afraid that he would leave me or was it just that I needed to
>continue to feel useful in some way ? There were times when I bitterly
>resented having to go on doing chores when I felt so awful, but I see now
>that it was a question of pride for me, and of keeping my morale. It is
>important to invent a new life, a new routine.
>
>
>
>In spite of it all, sometimes I told myself I was lucky to have fallen ill
>in the Internet era ! I could order groceries online and I did use that
>service many times, especially when we lived in an apartment building with
>no elevator! Also thanks to Internet, I felt less lonely. Even if I consider
>"cyber friends" and "virtual communities" a little bit unhealthy and even
>dangerous, for someone stuck at home they can add up to having a social
>life! More important, on the Internet, I could research Fibromyalgia and
>find out what other people in my situation were doing to cope.
>
>
>
>The bad news was that painkillers do little or nothing for the pain of
>fibromyalgia. Some patients go so far as to use morphine or Oxycontin, but
>there is a danger of developing tolerance and having to increase dosages,
>not to mention the hallucinations that many experience with such strong
>painkillers.
>
>
>
>More bad news : a majority of women with fibromyalgia put on quite a bit of
>weight. I was one of them and it caused me a lot of suffering but didn't
>surprise me as I have always been the type who has a hard time keeping her
>weight down. Strangely I have gained weight without eating more, but doctors
>don't believe me about that either. In the beginning of this illness, I was
>too preoccupied to even realize I was putting on weight. Getting through
>another day was my priority.
>
>
>
>I was afraid. Afraid that the pain, the tension, the weakness would worsen
>and become unbearable. I was afraid I'd need to walk with a cane or even
>find myself in a wheelchair. Afraid that I would never be able to lift and
>carry even 5 kilos again. I always pretended, in front of my husband, that
>everything was normal, but almost every night I went to bed hoping I wouldn't
>wake up in the morning.
>
>
>
>Reading articles on fibromyalgia, I learned that we often lose all or most
>of our friends. "Not my friends" I told myself. But yes, even my friends.
>Not because they are inconsiderate and self-centered, but because life goes
>so fast, people are so busy, always running here and there. And if you are
>not there in their path, right there in front of them, they forget about
>you. It was a hard fact, a situation that I had not foreseen, but logical
>when you think about how fibromyalgia slows you to a crawl and how fast time
>flies for those who are still in the race.
>
>
>
>There's also the fact that friends are not used to you not being able to
>invite them over for dinner because you're too tired or you don't know if
>your back will be hurting on that day. Even spending an afternoon with
>someone talking over tea can be too tiring because being a good listener
>demands energy.
>
>
>
>In the attitude of others, what was the most hurtful for me was that no-one
>ever thought to say the words I needed to hear : "I'm sorry you have this
>illness, you don't deserve this." Why the notion of "deserving"? Because
>fibromyalgia seems so much like a prison and a punishment. Sometimes I felt
>like screaming and pounding against the walls of that prison, but my tight
>muscles and tendons constricted me like a strait-jacket.
>
>
>
>It felt as though the people closest to me were the ones who were the most
>in denial about my illness. Some seemed to be like the doctors:
>disbelieving. For quite a while I was terribly angry at those people I had
>always thought loved me. I thought of them as dishonest: they had led me on,
>they had never really loved me at all.
>
>
>
>I went through another very painful stage where I could not accept the fact
>that other people didn't know how much I was suffering. At that time, if I
>had been a painter, my paintings would have shown:
>
>
>
> a.. A woman filling the washing machine. She has a knife stuck in her
>lower back and another in the middle of her back. Next to her, her husband
>sits at the table reading a newspaper.
> b.. A woman walking her dog. She has barbed wire around her hips and is
>bleeding. People pass by, noticing nothing.
> c.. A woman trying to work at a computer with a broken arm and a
>disjointed shoulder.
> d.. A women with dozens of wasps stinging her shoulders, tries to smile
>while drinking tea with a neighbor.
>
>
>That is fibromyalgia. Invisible pain. Unmentionable pain.
>
>
>
>For reasons of my own, I did not want to follow doctors' advice and take
>antidepressants, tranquilizers and painkillers. I take painkillers only when
>the pain is extreme because I don't want to become accustomed which would
>mean I would get no relief from them at all. Hot showers and heating pads
>help along with painkillers in case of acute pain. I still get headaches
>with vomiting and sometimes have to call a doctor who makes house calls to
>come stop the vomiting. Those are the times when I think fibromyalgia is a
>type of poisoning. Other symptoms I have had seem to uphold that theory: I
>had bright red hands for a few years and then the palms of my hands and the
>soles of my feet covered with tiny blisters. I still have ringing in my
>ears, which can be caused by toxins.
>
>
>
>I stopped using aspartame (NutraSweet) and noticed that I had fewer
>headaches. I also stopped drinking any alcohol as it caused palpitations and
>headaches, especially red wine. I stopped smoking and noticed I had less
>fatigue and needed to nap less although the fatigue is still present.
>
>
>
>I don't go to see doctors often because, let's face it, they don't know what
>causes fibromyalgia, why should they know how to treat it ? Doctors seem to
>have hard time realizing that we need to find out what is wrong with us and
>what will help us, and that we need them as partners, not as authorities.
>
>
>
>I often try my luck with healers and bonesetters and once or twice massage
>has helped. I had bad experiences with two acupuncturists. Both were
>authoritarian, didn't know how to listen and were prejudiced about
>fibromyalgia. Such a lack of respect is the last thing we need.
>
>
>
>I took a psychospiritual approach to my illness. I think that all illness
>has a hidden lesson on a spiritual level. Physical symptoms often reflect
>the condition of the mind and spirit. With chronic pain it is often
>repressed anger that needs to be addressed. Repressed anger is a source of
>internal stress and behind anger, most often there is a wound. I hope that I
>will not be misunderstood here: I am not saying that fibromyalgia is
>imaginary or psychosomatic, but that the body and mind are inseparable as
>pertains to any illness or state of health.
>
>
>
>What has helped me the most is to learn to relax deeply, even when I am in
>pain, to accept the pain and let it express itself. We have a deep need to
>feel our pain and it will express itself no matter how much we try to
>repress it. Also, one should never forget that being afraid of pain makes it
>worse.
>
>
>
>Another helpful, joyful, thing I have found is what I call my «
>wawatherapy ». I sing in the chorus of a rock and roll band where my husband
>plays the drums. It does me a world of good. It helps me to transcend pain
>and it warms up my muscles as I move to the beat of the music. Before I got
>ill, I loved to dance, but fibromyalgia robs us of our capacity to skip to
>dance, to run and I had begun grieving that fact. But in my wawatherapy, it's
>almost as if I'm dancing. Also, it's amazing how the act of singing can
>cause me to forget everything else.
>
>
>
>So I can say that I have been feeling better for the past few years. This
>means that I have managed to create something resembling a life for myself
>and that pain is no longer as high on my list of concerns. Is it that I have
>gotten used to this illness? Pain can still wake me in the night or cause
>tears when I try to bend over. Walking the dog can exhaust me and I
>sometimes sit on a bench staring into space. I go out with friends but only
>if I am well rested. I have to choose what I will do in a day very
>carefully, because if I choose one activity, it means giving up another for
>which I will be too tired.
>
>
>
>The eternal question "How are you?" is no longer an irritating occasion
>where I must be untruthful and grit my teeth. Most of the time I say "Not
>too bad" because I have learned to respect what my body tells me and, like
>my body, I can no longer tell lies.
>
>
>
>There was a time when I thought I could heal from this illness by listening
>to what my body wanted to say. It is true that it is behaving as if I had
>never really listened to it so it has increased the volume and is screaming
>at me ! It protests at the slightest stress or sign of fatigue. It's as if I
>have used up all my physical and emotional resources. When stress is
>chronic, hormones such as cortisol and adrenalin are produced which attack
>our health on several fronts.
>
>
>
>Studies have shown that fibromyalgia strikes a majority of perfectionists.
>People who push themselves too hard or who feel they must constantly please
>others. Fibromyalgia forces them to learn to let go, to slow down, to listen
>to their own bodies and hearts. I have accepted that I may never be cured
>but I will be doing my best to have a life in spite of fibromyalgia. And
>maybe I will end up learning what this illness truly demands of me.
>
>
>
>We all need to find a meaning for our suffering. When I ask myself what
>fibromyalgia has taught me I can answer that it has taught me to live in the
>present because that is all I really have left. It has also taught me not to
>count on anyone but myself.
>
>
>
>I don't work any more and that helps enormously. Some people with FMS prefer
>to work and some are forced to work. I don't believe I could. I worked for
>years in spite of loss of balance, headaches and painful tensions. I wanted
>at all costs to be like everyone else, but it turns out I shouldn't have.
>The ever-increasing demands of productivity and speed in the working world
>were too much for me and I believe were a major factor in what led to my
>burnout and physical illness.
>
>
>
>So. I have finished my story. If you have read me up to here I thank you and
>admire you. Perhaps you know someone with fibromyalgia, or perhaps you
>suffer from it yourself. If that is the case, I'm sorry you have this
>illness. You don't deserve it.
>
>
>
>Katie
>
Nancy :)
.