harrowing journey

My Harrowing Diagnostic Journey With FibroMyalgia

Diagnosing fibromyalgia is challenging and tricky which often causes agony in patients. This happens when the public lacks awareness of fibromyalgia which resulted in a reduced quality of life. This is also the main driving factor why I decided to step up as an advocate to raise awareness as a form of support to all fibro warriors. It is not okay to brush off idiopathic pain. We deserve to live a pain-free life.

 

Chronic Pain Isn’t Just Physical

Prolonged physical pain that no one understands can lead to emotional distress which affects relationships and self-esteem. It is important to have a circle of support, be it family, friends, or a support group that shares the same experience and feelings. Remember, fibromyalgia is a lifelong battle and we don’t have to walk this alone.

 

Listen to Your Body for Warning Signs

First warning sign
6 years ago, what seemed like a normal backache was my very first subtle warning sign. I went for massage therapy at TCM and wellness spa and was told that it was reversible muscle knots due to poor sitting posture.

Second warning sign
4 years went by, the pain never recovered and both my wrists started to experience tingling sensation one after another. Suspecting of Carpal Tunnel Syndrome (CTS), I consulted 5 general practitioners over a span of 4 months only to be prescribed a variety painkillers with increased dosage each visit. There was no sign of CTS and I was dismissed with the possibility of wrist sprain. For the next few months, I lived with that frustrating pain wearing wrist braces on both hands every day which restricted my hands movement and affected my ability to work.

Third warning sign
When my wrists did not recover and the tingling sensation spread to other body areas – my entire arms, neck and occasionally legs, I was recommended a physiologist who told me the possibility of slipped disc. Desperate for a cure to end the pain, I consulted a hand surgeon specialist for Nerve Conduction Study (NCS) and x-ray in one of the public hospitals in July 2020 but was dismissed with long-term painkillers when no abnormality was discovered.

 

Trust What Your Body Is Telling You

I vividly remember telling the doctor, “If my results do not show any trigger point, there has to be somewhere else that needs to be examined as I am feeling the pain every day for the past 1 year.”. The fact that my doctor wasn’t keen on investigating further made me feel helpless, brushing me off like I was a hypochondriac. To make matter worse, this doctor told me that no other specialist was able to help me as I clearly had no issue.

 

At that point in time, I had enough of the pain and didn’t want to be dismissed again as I knew the pain was abnormal. I went ahead to consult a neurologist in a private hospital where the truth began to unfold after I was hospitalised for 3 days. I was examined head to toes with repeated NCS, 2 MRIs, daily blood draw including the rarest form of cancers. Everything was cleared except for antibodies and immunoglobulin tests which were signs of autoimmune disorder but that wasn’t the entire cause either. Studies have however shown that fibromyalgia has close relations with autoimmune disorders. It was only after I consulted my 4th rheumatologist before I was officially diagnosed with fibromyalgia.

 

I filed a formal complaint to the first hospital as it pained me to wonder how many patients had been dismissed and never came back. What if I had not persisted and pushed for further examination with another doctor? No patient deserves to be treated this way. This could have been prevented if there was more research on fibromyalgia in Singapore. A low prevalence of cases does not mean there is none. It simply means many of us are suffering in silence after being brushed off.

 

Connect The Dots

Once you understand what fibromyalgia is, you will realize that your body has given you plenty of subtle warning signs that you overlooked. Pain is an obvious symptom but subtle symptoms include fatigue, sensitivity to weather change or brain fog which is the inability to concentrate or think, or poor short-term memory. Now everything makes sense, doesn’t it?

 

My first sign of brain fog started before the start of my wrist pain but I was quick to dismiss that as simply due to a lack of sleep or what people often joked as a sign of aging. Yes, symptoms are that common with tons of logical reasonings but your body is smart to respond to changes before the ultimate warning signs set in. Keep track of all your symptoms, pain scale, and frequency. It will help you understand how your body responds to changes accordingly.

 

Doctors Matter

Just when I thought that a diagnosis is the beginning of a healing journey, it is just the beginning of another nightmare. Considering that fibromyalgia requires lifelong treatment, I consulted 5 rheumatologists over a span of 6 months to give myself plenty of alternative treatment plans. Unfortunately, the treatment process was extremely tough. Due to the lack of strong evidence in the study of fibromyalgia, doctors may perceive fibromyalgia differently. The treatment process was pretty much trial-and-error using anti-depressants to alter the central nervous system. As far as anti-depressants are concerned, there will be unpleasant side effects.

 

Read on what to expect and what kind of questions to ask during rheumatology consultation.  In one of my upcoming posts, I will also be documenting all the different treatment plans that I was placed on with details of the common side effects.

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