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"Cross My Heart"

Spicelynn's CFIDS, FMS
and Lupus Page!

May 12, 2006
CDIFS and FMS Awareness Day
Click here to see my tribute!

(CFIDS and FMS, A Tribute!)

Fibromyalgia

FMS is a chronic, widespeard musculoskeletal pain and fatigue disorder
for which the cause is unknown. In addition to the pain and fatigue,
other symptoms include unrefreshed sleep (likely due to a number of
sleep anomalies), irritable bowel, chronic headaches, morning stiffness,
cognitive or memory impairments, reduced coordination and decreased endurance.
The American College of Rheumatology published the diagnostic criteris
for FMS in 1990. This selection criteria was shown to be 88% accurate in its
ability to identify patients with this syndrome. Researchers have noted a
significant overlap between FMS and CFS; a majority of patients who meet
the diagnostic criteria for FMS also meet the CDC crieteria for CFS.

CFIDS

Chronic Fatigue Immune Dysfunction Syndrome is also
called Chronic Fatigue Syndrome (CFS) and Myalgic
Encephalomyelitis (ME) elsewhere in the world. It
was once called chronic Epstein-Barr Virus, but
the EB virus is no longer thought to cause it.

It is characterized by prolonged, debilitating fatigue and
multiple nonspecific symptoms such as headaches,
recurrent sore throats, muscle and joint pains and cognitive
complaints. It is often misdiagnosed because it is frequently
unrecognized and can resemble other disorders such as
mononucleosis, Lyme disease, multiple sclerosis and lupus.
At present, there is no medical test or cure for CFIDS.
It's cause is unknown.

Case Definition For CFIDS

(Centers for Disease Control)

1. Clinically evaluated, unexplained persistent
or relapsing chronic fatigue that is not new or
definite onset, is not result of ongoing exertion,
not substantially alleviated by rest and results
in substantial reduction in previous levels of
occupational, educational, social or personal activies.

2. The concurrent occurrence of four or more of
the following symptoms, all of which must
have persisted or recurred during six or more
consecutive months of illness and must not
have predated the fatigue; substantial
impairment in short-term memory or
concentration; sore throat; tender lymph nodes,
muscle pain; multi-joint pain without joint
swelling or redness; headaches of new type,
pattern or severity; unrefreshng sleep; and
post-exertional malaise lasting more than 24 hours.

Hi, my name is Spicelynn, I wanted to do this page on CFIDS and FMS,
two diseases that have entered my life. I'm not sure when they truly
started, as there has been many things that could have triggered them.

Here is a little of my life story, and how these diseases have
affected my life. In the summer of 1996 I came down with what I
thought was the worst case of the flu I ever had. This flu seemed
to drag on and on. I never seemed to get better after that flu either.
I was tired all the time. By the fall of 1997, I went into see the doctor,
I told him I was tired all the time, had no energy and my skin was
really dry, and my hair was turning red and brittle. He ran thyroid tests,
that came back negative. I went in a few more times after that, with
very similar complaints. In Jan. 1998, after many negative tests,
my doctor made the diagnoses of Fibromyalgia. He sent me to see a Rheumy
whom also diagnosed Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome,
she was a really nice doctor, but didn't have a clue about FM/CFIDS.
She started me on Elavil 10mg. and I was to increase the dose 10mg
every three days till I was up to 150mg. or until I couldn't take the
side effects any longer. I made it to 100mg.. After that we tried Effexor,
then Prozac (Can't do Prozac, makes me mean, LOL!) then Paxil, I got
a bit fed up with her tactics and stopped all meds. She got very upset with me,
and then started treating me like a child, she swore up and down that
she could cure me, if I followed her method to a tee. (HELLO, as far as I
know there is no cure as of yet!) I went in to see my primary care doctor
who originally diagnosed this, and ask him to take over my case, he did.
I'm now on Valtrex a antiviral and Flexeril, which do seem to help some.
I also have Xanax for the days the pain is really bad. He will give me
stronger meds should I need them, so for that I'm thankful. My last routine
visit, he suggested Ritalin to speed up my system, to give me more energy,
and he also suggested a few other things all of which I said no. My youngest
daughter was also diagnosed with FM this winter. Well here we are the spring
of 2000, I have started seeing a new doctor, on all new meds etc. He recently
had a MRI ran, and he is now concerned about MS, so see a Neurologist in June.
Those MRI results showed that I had three brain lesions, and the possibility of a
demylinating disorder, so the Neurologist then requested that I have nerve
conduction studies done to rule out the possibility of MS, those and the
lumbar puncture came back negative for MS. I was at that time now off
work since Feb. 1998, and helping to run a FMS forum, not only to help me learn
of these disease processes and research, but to help other's that were also
having problems in their lives living with this. During that time frame in 2000,
I met a lady that said there was a good doctor in Amarillo that had helped her
with her Lupus, and by that time I was showing definite symptoms of Lupus.
Any time spent outside would send me into a flare that was flu like, and I would
end up in bed for at least three days or more. So I ask my primary care doctor for
referral to see this doctor, since he was on my list of HMO doctors I could see.
The Primary care doctor at that time was more than willing to turn my case over
to some body else, because he made the statement that he should have never taken
on my case because of it being too complicated, and beyond his scope of knowledge.
So I started the weekly trips to Amarillo (two hours from here) to see this new doctor
he was not only a Rheumy but an allergist too. He had gone into the study of
Rhuematology when his own mother had become sick with Lupus. He started new testing
yes, I did in fact have FMS and CFS, allergy tests came back that I was allergic
to everything outdoors. He ran more tests for Lupus, and I showed a low positive
C3/C4 this also proved the posibility of Lupus. During this time frame while this
doctor was leaving no stone unturned, my then husband changed jobs, and I lost
all medical insurance. So I took all medical records to the VA doctors,
(I'm a Veteran) and qualify for free medical care through them. I had since
quit working in the FMS and CFIDS FMily forum, because my health had gotten
so much worse, and I believed it was not helping me get better either.
After I started seeing the primary care doctor at the VA she referred me to the
Rheumatologist in Amarillo at the larger facility, he took a look at me, went
went over my charts, and said I could be managed by my primary care doctor in
Lubbock after a couple of med changes. He made a statement at that time, that
he could not see me on a regular basis, because the VA didn't pay him enough.
In Jan. 2002, I found out my oldest daughter was pregnant and unmarried, really
not a problem as far as being unmarried, but was concerned and stressed, because
this daughter was learning disabled, ADHD, and I suspected for years of the
possibility of Bi-Polarism, so my health sort of went on hold again, while I dealt
with her. She was diagnosed as definitely bi-polar, and retested for IQ, which
showed she was definitely learning disabled with an IQ of 80, she had tested
much lower than that at an earlier age. The mental health group, recommended
that she take anger management courses at that time. In the mean time the
daddy of the baby stepped into the picture, and all as gone well since that time.
This daughter had her baby in Sept. of 2002. In Jan. 2003, my youngest daughter
called to say she was pregnant, and having pregancy problems and a heart problem
So I scurried around to get her to Lubbock, since Las Vegas was shutting down all
trama centers, and I wasn't thrilled with the medical care she was getting there
I made appts. with my old cardiologist, and the oldest daughters OB-GYN,
and flew out to Las Vegas to bring her home, after we had clearance from her
husband and all her doctors. In April 2003 found out the oldest
was pregnant again. In May 2003, the youngest daughter's husband had now transfered
to Lubbock for work, and plans were well underway for them to have a new
home built. Shortly after he got here, found out my then husband was having
a affair, and divorce proceedings started. I was totally blindsided, but not
completely surprised, thinking back on it now. I think the real shocker was
that this had been an ongoing 4 year affair, and I never had a clue.

I'm going to include on here links to sites with
symtoms of FM and CFIDS and how to deal with it.

Please E-mail me!

Spicelynn@yahoo.com

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