After many years of having an autoimmune disease (Behcets), I developed a chronic pain condition called Fibromyalgia. I lived with this condition for a year before finding other people in my country living with the same condition. In my search for support, I was lucky enough to discover ‘The Mighty’ https://www.facebook.com/TheMightySite/, an online support group for people living with various chronic diseases. I found comfort in this group through interaction with people going through similar symptoms, and I learnt that some things which did not appear as symptoms, were, symptoms of the disease. For example, extreme sensitivity to touch and smell.
to Mayo clinic, “Fibromyalgia is a disorder characterized by
widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood
issues” (https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780). There
is no clear cause of Fibromyalgia yet, but research has found that people with
autoimmune diseases or those who have experienced physical or emotional trauma
through for example, accidents or surgery, are more prone to Fibro. In the
above description, they mention widespread pain, which is something I can attest
to. My whole body aches every day, including my eyes and my face!! Pain
intensity varies from day to day, but on bad days, it is so excruciating you
can’t move, sleep, cry, eat, talk or do anything really. On such days, I’m
ashamed to say, I don’t even shower! For me, it is further complicated by pain
from nerve damage I developed due to diabetes.
“Researchers believe repeated nerve stimulation
causes the brains of people with fibromyalgia to change. This change involves
an abnormal increase in levels of certain chemicals in the brain that signal
pain (neurotransmitters). In addition, the brain’s pain receptors seem to
develop a sort of memory of the pain and become more sensitive, meaning they
can overreact to pain signals.”
I have learnt that some symptoms vary from person to person.
But some of the common ones include that I also experience are:
Widespread pain all over the body. Sometimes,
the pain can be limited to one side of the body. For me, my left side tends to
pain more than the rest of my body.
Brain fog. It becomes increasingly difficult to
think through things, to remember things, etc. most of the time you find it had
to remember the simplest things. And forget about mathematics! Simple addition
can be a nightmare. This symptom has been particularly hard for me to accept
because I have always been a scholar, and my career demands a lot of reading
and recalling because I’m in healthcare. However, most of the time I can’t
remember basic things. This has left me feeling useless, and as if my IQ has
dropped. A very painful thing for me.
Pins and needles (tingling) all over the body.
Insomnia. Yet, ironically, sleep is a vital
part in Fibro management.
Sensitivity to touch and smell
Stiffness. At some point, just before I got my
diagnosis for Fibro, my legs and back would get so stiff I couldn’t walk. I was
afraid that I was becoming paralysed. Luckily, my mobility came back after
treatment and physiotherapy for 12 weeks.
Fatigue. I have no words to describe the levels
of tiredness I feel every day! I go to bed exhausted and I wake up even more
Morning stiffness. Every morning I hobble
around the house because of stiffness.
I have chosen not to write about treatment because different
doctors follow different paths in treatment of Fibro. My rheumatologist likes
to follow a holistic approach. Therefore, I take Gabapentin twice a day, he also
asked me to sleep well (take a sleeping pill when I need one), try to exercise
(mild exercising), keep a positive attitude, eat a healthy balanced diet, and
massage. So far, this has helped reduce my pain levels, although lately, I seem
to be heading to a flare-up (that is when all the symptoms, especially pain,
exacerbate). A flare-up happens when something triggers it, such as, change in
weather, stress levels, illness etc. Triggers vary in people, and as you live
with the disease and understand it better, you can point out what your triggers
are. However, I have found weather, stress and lack of enough rest to be common
triggers among many people.
Fibromyalgia is a disease that can make life difficult and can
destroy relationships. I hope this article will help someone understand a bit
about Fibromyalgia, whether you’re the one living with it, or living with
someone who is living with it. It is a very concise article, and if you would
like to delve deeper, there is more information on Fibro in Mayo clinic and