or someone you care about, has been diagnosed with FMS,
and for that I am truely sorry.
(July 7, 1998) when I finally was diagnosed. In talking to other
sufferers I have learned that not all with FMS have the same
symptoms. We are each unique in our own ways, and yet in
many ways we are the same. It seems I have spent most of my
life learning first hand what it could do to ones life.
and relax. Feel free to laugh, scream, or even cry along with me.
After all, we are in this together.
as I was growing up I had a lot of trouble with asthma, strep throats,
flu's and pneumonia. I only mention this because in talking with
others I have found that this is not so out of the ordinary with those
later diagnosed with Fibromyalgia.
I was in high school when I suffered from this. I marched in the band.
Copperas Cove High School, Texas (1976-78). It was during these
practices that I noticed the pain in the legs, especially the knees.
It got so bad that I went to the doc to have it checked. Yep, he said..
classic growing pains if I ever saw them.. HA! Well then, if they are
growing pains why did I stop growing at 5'4? I should be over 10
feet tall now, as the pains are still here. LOL!
illnesses of my youth, I also accepted the pains as
just part of who I am and learned to deal with it.
I had started to have severe back pains. It was often
as if someone was sticking burning hot pokers in my back. Back to doc.
Diagnosis was scoliosis. However, he said since I was no longer
growing the brace he would normally prescribe would be useless.
Now wait a minute, I am still having growing pains, how can I be not
though growing? Sigh.. OK then, another "grin and bear it" diagnosis.
I can deal with that, I think.
It was several years later, I have one failed marriage and two children
and am living in ND so I can be close to my parents. I found a job as
a CNA in pediatric/oncology. The people I worked with were a wonderful
group of people. The job was perfect except I had a little problem with
delivering specimens to the lab. It seemed silly to me at the time so
I never mentioned it. But every time I went to the lab I would feel
light headed, short of breath, and shaky.. I know now that part of the
FMS is a sensitivity to odors, and for me the chemicals they used in
the lab afected me strongly.
On one glorious day when it was not too cold I chose to take
my kids sledding on the "dike". A popular sledding spot in
Fargo. Everything went well until my daughter got to the top
of the hill and became afraid to sled down. I had to climb
up after her and so we decided to slide down together. At the
bottom of the hill we hit a bump and went airborne. If any of
you have ever had the wind knocked out of you, then you know
a little of how I felt when we landed. I could not move, I could
barely breathe, I could not speak and I hurt like ... well you
know what. My back was in excrusiating pain. I laid there for
what seemed like forever but in all actually was only a few
minutes. Then being the stubborn person I am I dragged
myself to the car and let the kids sled some more.
subsided, so I got the kids together. I dropped my son and his friend off
at his friends house, and drove myself and my daughter to a friend of
mine's, house. I left Iris there and proceeded to walk the block to the ER.
Diagnosis this time was a compressed fracture of T-12. Imagine that..
leave of absence from work, lived with my parents and had their help
with the kids. But finally I convinced myself that I needed to get on
with my life (besides I needed a change of scenery :) ) So back to
work I went.. But it was not the same. I had changed. It seems that by
the end of the work day my body felt like it had been hit by a Mack truck.
hangover without having had the "pleasures" of getting drunk
the night before. Migraines, sick at my stomach. The light hurt
my eyes and my body was so stiff it was hard to even walk.. But
I would get up and drag myself to work. I was a single mother
with a family to support after all.
pathogens should receive the hepatitis B vaccines. They are given
in a series of three injections. The first two went ok. But when they
were going to give the third one I was running a low grade fever..
and for over a month every time they went to give it I had the fever.
control specialist and she strongly recommended I have it checked
out. So off to the infectious diseases specialist.. This Doctor ran so
many tests that the lab made me sit for 15 minutes
afterwards before I could leave. LOL!
had taken over my nights, making it so much harder to concentrate.
I was a full time employee and at nights went to school. I was really
having a hard time concentrating on anything.. It's also when I started
to not remember things that had happened in my past. Family get
togethers were hard when they started reminiscing. I dreaded the
question..."remember when....." because for the most part I couldn't
remember. I started loosing my keys, my car, my glasses, and even
my mind.. My eyes were dry and itchy and I found that at times I could
not wear my contacts. My mouth was also dry and I had to
keep water at my desk at all times while at work.
in my fingers. I was sure arthritis was setting in. But the specialist could
not find anything. Imagine that.. So, a referral to my internal meds doc...
More tests, and again nothing wrong with me. This doc is familiar with
my Mom, who has Sjogrens, yet never made a connection. OK, so now
a referral to a rheumatologist. The Rheumatologist paid a little more
attention. More tests.... If one can imagine that.. Still no confirmation
on a diagnosis. She thought perhaps seasonal affective disorder (SAD)
Ok..... So now what? I have to get special lights to sit in front of. They
are supposed to resemble the sun and therefore help. Ok, well if it will
help me then I will give it a try.. A $450.00 try that is. (OUCH).... No
these fancy lights were of no help, (the brightness hurt my eyes and
caused headaches), but the girls like it in the tent for their sleepovers..
lights up the whole tent... LOL.
me a reasonable answer, and I felt that they were chalking it all up
to hypochondria, (and I was afraid they were perhaps right). So I
learned to mask most of the symptoms and kept pushing
this body to do more than it should.
that I never wanted to do anything anymore. I just had no energy
and would of just slept my life away if it had not been for my
responsibilities. So I quit my job and went to school full time,
trying to do both was just too much. I also moved out of my
parents home into a duplex provided for low income families.
At this point I had to go on welfare which was so very hard for
me to do. But I made it through school, (with a high GPA no
less..) I even dated during this time and married.
So I was still a very busy person.
My husband, children and I had settled down in a small town and
were pretty happy here. Then the next catastrophe befell us (me).
drop my daughter off at home. On the way back I was involved in
an accident. Nothing major. Just the other driver saw me too late
and slid through her yield sign, roads were icy. I did not feel I was
hurt but the day after was hell.. Since I had given up on Doctors
though I chose to see a chiropractor. He took x-rays and commented
on how tight my neck muscles were. I told him that they are always
that way. So, three times a week I went to the chiropractor. I
sometimes felt better for a day but often I felt worse than I did when
I went in. The treatment also hurt. Could not figure that out, and he
said it should not be so painful. So, 3 months later I decided to give
that up too... This is when depression set in. I grew restless at my job
and decided to change to something more challenging..
for 9 days and off 5. Sounds great at first, but those 9 days on, were
hell. Pages at all hours of day and nights, I did not have my
Fibromyalgia diagnosed then and could not understand the extreme
fatigue I felt during this time, and the pain I was in, especially after
doing cares that required lifting. So I took another job at a bank doing
research, this was from a temp service and went really well. But as
most temp jobs go, the need was only temporary.
(also through a temp service). This started off really great,
I loved it and the nurses were fun to work with as well. It was while here
that my basement started flooding, as well as the one at work.
At first I only felt the weariness, which I assumed was due to the
cleaning up of the water, but after a while other symptoms
surfaced, difficult breathing, tight chest, achy all over, etc. and
then I noticed that when I got to work, I often could not remember
what I was supposed to be doing or how to do it.. I was getting so
far behind that I knew I would never catch up. ( Now I know this was what we lovingly refer to as brain fog. ) I offered to stay late
but since I was with a temp agency that was not allowed. Anyway,
to make a long story short, they hired someone else.
And for 18 weeks my basement flooded.. Yikes.
symptoms. But the fasting blood sugar test was within normal levels
I saw a GP, he could not find anything but when I complained of my
inability to concentrate and my being "a little less than graceful" he
referred me to a neurologist to be checked out. Ok, another Doc. The
neuro said that everything checked out, they both doubted depression,
and the neuro wanted to do a sleep study. (Apnea runs in the family).
Well, in the meantime I noticed that there was a new Rheumatologist
in the clinic so I made an appointment to see him. Best thing I ever did.
After several minutes he came in, asked me several questions about my past
Dr. visits, their diagnosis, what had been done in the past etc. then he did the
trigger point test. OUCH.. It may be silly, but I have
always hurt in those areas, so I thought that's how I was
supposed to feel. So when he said; "Does that
hurt?" I would say, "No more than normal." LOL! Good
thing one of us knew what was going on. He then sat me down,
explained that he had read my chart
before seeing me, which was what had taken so long, and
told me he was 99.9% sure he had a diagnosis for me. He
explained Fibromyalgia to me, told me to
get on the web, find others, compare stories and symptoms.
He gave me pamphlets to read and to share with my family, then
told me to call him in a month. Only meds he gave me were
muscle relaxers (Skelaxin). Ok, I did as he
said. I found a group here on the net that consisted
of people with Fibromyalgia. It was amazing just how similar
our stories were. After a month I dropped in to
talk to him, he took me back to his office and asked what I
thought? Did I think the symptoms fit me? When I said yes, then
he said he was now 100% sure of what I had.. :) If you have
been diagnosed you know how that feels: a burden lifted..
understanding. My parents and brother and sister were more
understanding than most due to the fact that my mother has Sjogrens.
Scott, whom I was married to at that time, did not
understand. I doubt he ever will.
and chat room is the best thing I have ever done for myself. Here I have
been able to glean all kinds of information, ask questions and even vent...
and not only does everyone understand me, they accept me unconditionally
as part of the FMily no matter what my mood may be that day (or week).
I have been able to laugh with them, cry with them, pray with them and
learn from and with them.. A support group is very essential, no where else
will you find people who understand. Since I was diagnosed I have had
my good days, and my bad days as well. I have gone from angry,
to depressed to acceptance, to angry again..
it did work for a little while, but the FMS is just to unpredictable and I
never knew when I would be able to do the more strenous cases. So I
had to let nursing go all together. Shortly after this, and after being
unemployed for a while, I also had to let my marriage go. My husband
wanted me and my kids out of the house. This took place right after
Christmas '98, so January was a busy month with me packing and going
to social services for help in getting moved out and into an apartment.
And at the same time I found a new job, since I was gonna resume the
role as single mother again. I needed a way to support my family. I went to work as a receptionist at Merit Care Heart Services in Fargo.
I loved it.. the people were wonderful, the patients were great. Somedays
it was easier than others, somedays the pain was hard to work through
and some days I just had to stay home..
On May 31st my doctors sat me down and informed me
that I could no longer work, just those few months of
work had done me in to the extent that some mornings
it literally took an hour to climb out of bed, an inch
at a time and with tremendous pain.
I filed for disability and on my first attempt was
denied. I filed an appeal, and included a letter of what
a typical day was like for me. And they approved it.
On April 2000 I will start receiving disability and go
off welfare once and for all.
Mughny and his staff))). I left due to insurance but found that the new
doc was just not willing to give me more than 15 minutes of his time..
And would not allow me to talk.
make adjustments, I believe we are all on this Earth for a purpose and
that we each have something to contribute. There have been several
with FMS who have decided to end their lives. I can understand the
hopeless feeling one may feel at times. But I believe this is where
finding the right Doctor and the support group is important. Also have
a support network at home, with family members, friends, church brethren...
Whatever is available for you. If theres nowhere else to
turn, and you need help now. Please go to this site...
Suicidology: hot lines and helpful information
time to check them out. Also included is the link to the FMSupport Forum where
I the Host there and I know you will love this group as much
as I do. They light up my life. You won't find a more encouraging group
of people anywhere. Please take care of yourselves.
fmilypals@moorheadcity.com..
I also belong to ICQ and if you would like to chat there please look me up at 13669939.
My newest campaign is to try to put together as many of our Fibromyalgia stories as I can, in hopes to present a strong case to Congress after the elections, on why it is so important to provide adequate funding for research in this area. Please check out the web site, and if interested in contributing your story feel free to e-mail it to me at:
The web site can be found at:
learning about Fibromyalgia.. Please take time to search them out..
The first link was the biggest eye opener to me.. The 5th link will
take you to the support group I host. Its in Delphi, and like I said..
they are a wonderful group of people. Unconditional love abounds.
The many friends I have made there have surely seen me
through thick and thin, theres too many to name , but they know how
dearly they each mean to me, and that they are loved very much.
1) Fibromyalgia
2) Devin's Site
3) Lady Freedom FM Story
4) FMPartnership
5) FMSupport
This is the support group. Hope to see ya there some day.
6) Fibro World
7) FM Mary
8) Fibro Resources
Here is a link of a site that I truly have loved, and try to share with as many as I can for an uplifting and encouraging message.
ON THE WINGS OF A PRAYER
"Daydreams" my writings page.
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