This is just the beginning; there are literally hundreds of thousands in the states alone that are suffering with Fibromyalgia and its associated disorders. Many with Fibromyalgia also have other diagnoses with illnesses in the Connective Tissue disorder family; diseases such as Lupus, MS, Sjogren's, and arthritis. Many as children can remember having what was diagnosed as "growing" pains. Although they were adults when finally diagnosed with Fibromyalgia, many believe the Fibromyalgia was there in their very early years.

Following are some more personal accounts of Fibromyalgia and how it has affected these people's lives. Thank you again for taking time to read through this in your endeavor to understand Fibromyalgia and its effects.

So much for the stats. Oh, I forgot, I am employed by the Canadian Mental Health Association for the past 16 years, working as a community support worker at nights. (I worked midnights for 16 years straight, Monday through Friday.)

After working all those years for the same company and paying into benefits all the time, you would think that I would have no problems now. Well, not so. The insurance (Sun Life) paid for the first three months I was ill. Then they strung me along for three months; then told me that their health professionals think that I could be working.

So I have had to hire a lawyer in May of this year, and they are still fighting it out. I was diagnosed three years ago with FM, and then last October when I became very ill, came home one morning and could not stop shaking, and was in terrible pain all over .My family Dr. diagnosed RA (Rheumatoid Arthritis), after the blood tests came back positive.

So I have not been working since. Like I said, I received insurance until Feb. 2000, then nothing. I was able to collect 15 weeks of employment insurance at 55% of my salary (fed. government), and applied for my Canada Pension disability in May, but have not heard yet; usually they turn you down the first time out of principle, and give it to you on the second try.

So, for the last few months we have been living on my husband's retirement pension, which is not a whole lot, and if it had not been for the children's help now and then, we could hardly squeeze by.

My family has been very supportive. My husband is my rock. He is there for me at all times.  He even takes my bad moods when I get down in the dumps, which has been many times lately.  I felt suicidal several times, and if it had not been for him, who knows?

My social life has practically withered away.  Some friends stuck it out; some don't show up anymore.  My good colleagues from work have shown very little interest in my being; if I meet one of them on the street they are very friendly and appear to be concerned, but in 9 months I have only heard from a couple here at home.  I think they are of the opinion that I am faking it, because I don't look sick.  If I hear that phrase one more time, I WILL PUKE.

My family Dr. is very supportive.  But there is only so much she can do.  Always willing to fill out the endless medical forms.  My Rheumatologist, in London On., seems capable, though always in a hurry.  She does not agree with my Dr.'s diagnosis; says she does not go by blood tests.  Thinks its mostly FM, but has put me on Plaquenil, since May.  This has given me some help, but I still have major symptoms.

Birgitt

I worked full time till September 30, 1999. I had good company insurance at a reasonable price. When my job was written out of the budget, I was told I could keep my insurance under the Cobra program for 18 months, but no longer under any circumstances, though if I had insured my spouse or dependent children, theirs could be extended to 36 months (I think that is the correct time frame).

At first I was incredulous and then VERY ANGRY! What justice was there in providing longer coverage for the family than the employee??? I am still angry about that though it is no longer an issue for me.

I was 61 years old and knew I could not get Medicare for some time. Even when I got my Social Security Disability, I was told I had to wait 2 years for Medicare.

Without my job, I could not maintain Cobra insurance anyway. Through the period I was eligible for unemployment, I kept it and through my cancer surgery and treatment. I am very reluctantly letting it go at the end of August 2000 as it is too fiercely expensive for a couple with less than a thousand a month income. We have been told that we will be approved for Medicaid but it is a long drawn out process and mediocre insurance at best.

My medical doctor at the time of onset of recognizable, confirmable symptoms, conducted several blood tests to rule out lupus, etc. He sent me to a rheumatologist who said I had Fibromyalgia and gave me samples of a couple meds to try. My PCP (Personal Care Provider) said he saw no reason for that diagnosis over any other.

I changed doctors because of company insurance. This doctor was a female. She sent me to several specialists including a different rheumatologist. It was his opinion that I have psoriatic arthritis because of psoriasis patches on my arms, legs and back. I have come to the conclusion that the diagnoses are not mutually exclusive and believe I have both.

It seems all the spontaneity is gone, also all the planning! I have to plan activities and yet it is pointless as I can not guarantee that I will have the ability to carry them out. Pain is the usual culprit, exhaustion and depression round out the picture.

It has been especially hard on my husband. He felt for a long time that I could if I wanted to, and only backed out at the last minute to annoy him. He also stopped spontaneous touches never knowing whether a pat on the shoulder would be appreciated or produce a grimace of pain.

The patchy fibrofog has been a difficult thing to adjust too also. I had always relied heavily on my memory and it is shocking to find it gone.

My Social Security claim was quickly granted. It only took from September till June. I think Fibromyalgia should have been sufficient cause, but I firmly believe it was granted quickly because of other factors: age, general health, financial need, and numerous handicaps that because of the fibro I could no longer compensate for and hold a job. Poor vision, impaired hearing, asthma, diabetes and finally cancer had a role in the determination. I do not believe it would have been granted quickly on fibromyalgia alone.

Anonymous

My general practitioner doesn't have a clue about fibromyalgia. I used to see a rheumatologist (who diagnosed me several years ago) and a neurologist, but we were made to change insurance companies and this one will not let me see them, as they are not "in the loop".

My GP's response when I requested a referral to new ones was "they can't do anything for you that I can't do."

I am very close to losing my primary job as the set-up requires me to go up and down 2 flights of stairs several times a day, and I am having great difficulty with that. I can no longer do all my own housework or yard work and require a great deal more rest than I am accustomed to getting. I am trying to get work at home doing bookkeeping and secretarial work as I have my computer, fax, etc.

I take Celebrex, Darvoset and Paxil and Ambien at night. I recently had hip replacement surgery so am a little limited as to exercise, but I try.

It is so frustrating when no one understands the illness and the current doctor has this attitude. Thank you. 

D. Urban

Hi, My name is Katharine and I am a 32 year old widowed mother of two beautiful children, ages 7 and 9. I was diagnosed with Fibromyalgia when I was 14 years old. I have been fighting the pain and fatigue for years.

The stress in my life has made my flares worse and worse over time. I don’t sleep well. I hurt all over all of the time. I have lots of headaches. I fight with IBS. I get tremors. I am cold most of the time. I am very sensitive to touch. I have very sensitive hearing and smell. My memory and concentration has become awful.

I have been attending college for the past two years to do better for my family and myself since my husband passed away. School has been a major struggle for me. I struggled with being sick a lot while attending school. It was almost impossible for me to concentrate or to read my assignments and comprehend what I was reading. Tests were a nightmare for me since memorization was almost impossible for me to do. The stress made my flares increase terribly.

Since I was widowed and going to school in hopes to find a good job, I had no insurance to help me with my illness. I did the best I could with what I had. Over the years I tried a few different medications, but the most they did was make me feel drugged up and did not help with the pain and fatigue or anything else. I still am without medications or a good doctor who can treat my FM. Not only can I not afford the doctor…but also, I cannot afford to pay for any medications that may help to ease my illness.

There are days when I can barely get out of bed. Just putting pressure on my feet, ankles and knees hurts so bad that standing is a major task. One night when I was not sleeping…I was becoming depressed from the pain… And I was hurting so badly that I was in tears…. I finally got up and I felt I needed to vent what I was feeling. So, I sat and wrote a poem and this is what I wrote. I hope that this will show some of what we with this illness go through on a daily basis. The poem is called "IT"…

IT

Strong and silent IT rushes into
my life like a whirlwind of
complete chaos.
IT runs through my flesh
like a sharp burning flame.
IT shoots through my neck and straight through my veins.
IT runs through my fingers and down to my toes.
Will IT ever end?
Who knows!

Night has fallen and
I'm really beat!
Only one problem
I simply can't sleep!
I toss & I turn
I can't take this
much more!
Tears fill my eyes
and fall to the floor.

Morning awakes.
A new ray of hope
you would think.
I try to move and
begin to re-think!
How could this be?
Why is IT still here?
Doesn't IT know
I want no more fear?

IT's taken my dignity, my hope,
my youth, my life.
IT's left me with bitterness,
weakness and strife.
Topsie turvie my life
turns upside down.
Lord can you help me
to find solid ground?

© Katharine Huffman 2000