I was recently diagnosed with Fibromyalgia (FM) after a year of pain and negative tests for
everything else from arthritis, to lupus, to multiple sclerosis.
The other day one of my coworkers asked what the pain of FM
feels like.
First, I’ve learned that everyone’s experience of FM is
different so my answer is not THE ANSWER to the question conclusively, since
it’s a syndrome. It’s sometimes called FMS
for Fibromyalgia Syndrome. But for me, this is what I feel.
I have a constant dull headache,
which sometimes worsens to the point I had five severe migraines in five days. Before FM, I rarely had headaches. Now they
are my daily companion.
My back is always sore, usually an achy feeling, which moves
all over my back, but is worst between my shoulder blades. Although massage or
heat help somewhat, as did physio, acupuncture, chiropractic care, mostly
nothing helps my backache as it’s
not caused by any injury.
My muscles are stiff and tight, especially around my upper
back, neck and shoulders. I take magnesium and muscle relaxants and though they
help somewhat, but the muscle stiffness
never completely goes away. Heat eases it somewhat.
I have stabbing pains
in the front of my thighs. This is the most acute pain I experience. It happens suddenly and the pain is so
intense it brings tears to my eyes (and I don’t cry). It will pass within a
minute so I don’t take anything for it. When it happens I don’t touch my leg. I
just wait for it to pass. The first few times it happened, before I knew it was
related to FM, which I didn’t know I had, I feared the worst. But the fact that
it moved around from thigh to thigh and in different areas of the thigh
confused me. I knew it couldn’t be a tumour since it wasn’t localized to one
area. It was a mystery, until now.
I clench my jaw in my sleep and grind my teeth. I used to
sleep with my mouth open, but now my jaw is clamped shut. X-rays show wear and
tear on my TMJ or tempero-mandibular joint, which is right at the base of the
ear where your jaw opens. I’ve heard many people with FM also have problems
with their TMJ. I now sleep with a mouth guard on my teeth, and it prevents
problems. As well I have toothaches and
headaches. Jaw clenching, teeth grinding and TMJ problems are common.
My joints are stiff
and movement is very slow. I feel like a sloth sometimes. I also used to
sleep mostly on my left side. Now I have to sleep on my back as both hips are
very tender. I will wake up sometimes and my whole pelvis, knees, ankles and
shoulder joints feel like they are on fire. Burning pain is I think the worst
type of pain I experience with FM, although the stabbing pains are a close
second. The stabbing pains are of shorter duration. The burning pains in my bones and joints are so deep and almost
throbbing in their intensity, as if the flame gets turned up or down. I take so
long to turn over in bed, even a quarter turn, say from back to side, and I
almost don’t want to move because it hurts even more, so I’ll often sleep for hours in the same position,
which makes problems of its own. Or I’ll
wake up every time I change positon, then I can’t get back to sleep, or
I’ll reach over for a pain killer like Tylenol or Advil, so I can try to get
back to sleep once the pain subsides.
Sleep disturbances
are common as a result and people with FM have trouble getting to the deepest
level of sleep. Sleep deprivation
then has its own problems and it becomes a vicious cycle, with lowered pain tolerance, irritability and
headaches. People with FM often wake
not feeling refreshed, and instead feeling like they’ve been run over by a
truck.
I also developed anemia,
which then made my fatigue, headaches and shortness of breath worse. I also had
mononucleosis which made my fatigue more extreme.
I was also recovering from surgery and my pain threshold was
lowered. My hormonal imbalance also caused hot flashes which were severe enough
to interrupt my sleep, which only added to my extreme exhaustion.
I also had problems
with my balance. I almost fell several times. I always use a handrail when
I take the stairs. I had also developed a limp, the cause of which was never
determined.
I had heart
palpitations and could hear my pulse in my ears, especially when I’d be
trying to sleep. No cause was found for this either.
I also had chest and
left shoulder pain, which was investigated and ruled as non-cardiac pain.
I had abdominal pains, some of which were attributed to
gastritis from Naprosyn. I stopped it, of course. An abdominal ultrasound was
normal, but the abdominal pain
continued.
I experienced weight
gain, both from some of my medications and from my decreased activity due
to the pain and fatigue.
I experienced mental
fogginess (sometimes called Fibro-fog). This was a problem at work (I’m an
oncology nurse). I seemed to take longer to do my job and never felt like I
finished on time and feared I’d make mistakes or forget something important. I
dreaded going to work and just getting through each shift was a chore.
I also developed anxiety. This was new for me and very
distressing. Apparently anxiety and/or depression and stress intolerance can occur with FM.
I didn’t have depression but I did feel discouraged through my two years of
testing without any diagnosis. I knew something was wrong, but every test was
inconclusive or negative. In a strange way, I’m happy to at least have a
diagnosis so I know what I’m dealing with and can try to find some treatment.
It’s hard having an
illness that is so little known or understood. It’s also hard having an illness that can’t be seen. I may
look well, but I’m not.
The problem with FM
stems from the body’s inability to process pain signals properly. It’s not a fatal illness, and it’s not
progressive (meaning it won’t worsen over time) and will not cause lasting damage to any organs. That’s the good news.
The bad news is that every
case is different, it takes a long
time to diagnose, mostly by ruling
out other causes and the presence of pain
for at least three months. It often develops
after accident, illness or injury. In my case, it started a year ago after
I had infectious mononucleosis. It’s still poorly
understood by the medical community, difficult
to treat and there’s no ‘cure’.
For one glorious month this year, I had no pain. I was on
Baclofen (a muscle relaxant) and Naprosyn (an NSAID). I could work freely and
didn’t feel like I was missing something. I had energy for projects at home and
cleaned out cupboards and painted furniture. I couldn’t have done that before.
I was so happy to be pain free. My husband came home and asked his usual,
“How’s your pain?” I said, “What pain?” He was shocked. Then the medication suddenly stopped working
and the pain returned worse than before. I was so upset and frustrated. If I
would have known I’d only have a month, I’d have done more.
I felt I was falling apart and no one could tell me what was wrong with
me.
My doctor told me it was possible for the medication to stop
working. I also stopped the Naprosyn which caused the gastritis (inflammation
of the stomach). She switched me to new medication, which took a while to find
the right dose. They also caused some dizziness
and not quite as good pain control.
I am trying to learn all I can about this illness and what I
can do to help myself. I bought a book
by Dr. Alison Bested called Hope and
Help for Chronic Fatigue Syndrome and Fibromyalgia. I also joined a
facebook page support group for
Fibromyalgia sufferers called Fibro 360 Community | Fibromyalgia and Fatigue Centers. All these things help to validate that I do have a real illness with real symptoms. The
problem often with FM is that you begin to feel
it’s all in your head.
To ask, “Where does it hurt?” is harder to answer than,
“Where doesn’t it hurt?” I hurt all over.
There’s the short
answer to how it feels to live with Fibromyalgia.
