FIBROMYALGIA

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.

What is Fibromyalgia?

According 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.”

Reference: Mayo Clinic https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

Symptoms of Fibromyalgia

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.
  • Numbness
  • 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.
  • Irritable bowel
  • 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 exhausted!
  • Morning stiffness. Every morning I hobble around the house because of stiffness.

Reference: WebMD https://www.webmd.com/fibromyalgia/guide/fibromyalgia-symptoms#1

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 WEBMD websites.

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