Written by The Bimblers, January 18, 2023
This is a blow-by-blow description of what Fibromyalgia is like for me.
You and I might have the same symptoms, similar stories about how we were diagnosed with Fibromyalgia, and even the same treatment. But, our experiences of living with Fibromyalgia are often quite different.
With that in mind, and because I haven’t seen many men with Fibromyalgia sharing their stories, I thought it would be interesting to share what living with Fibromyalgia is like for me.
Before I do, here are some facts and observations about men and Fibromyalgia.
A rough estimate is that seven times more women than men get diagnosed with Fibromyalgia, yet there doesn’t seem to be a gender explanation.
So, given that as many as 1 in 20 people are thought to have Fibromyalgia, it must mean plenty of men go undiagnosed.
Many studies have been done, and the consensus is that men are less likely to visit their GP, especially with aches and pains.
It’s thought that men try to ignore their symptoms and, from experience, don’t even want to talk about them until they are extreme. This could be because men stupidly don’t want to appear weak.
By the way, having watched how Bridget has dealt with pain over the years, I have never met anyone stronger, so that debunks that theory!!!
This unscientific explanation could explain why men are less likely to be diagnosed with Fibromyalgia.
So, Fibromyalgia remains a bit of a mystery.
But I can tell you, it is real. It is all-consuming, it’s as frustrating as it’s painful, and it’s life-changing.
Can Men Get Fibromyalgia?
Yes, men can get Fibromyalgia.
Fibromyalgia Symptoms
The easiest way to explain my Fibromyalgia symptoms is to show a list I wrote for my GP.
Top Tip: Keep a diary of your symptoms by writing them down on your phone or a piece of paper.
I thought I was going mad, so I wrote down where it hurt and how I felt. That way, I knew my GP would get the whole picture, not just a snapshot.
Here’s my list of symptoms
- All movement causes pain and discomfort.
- When I do nothing, I’m in pain and have discomfort
- Burning pain in upper arms, muscles in both arms
- Aching pain in both forearms
- Pins and needles and numbness in my right hand
- Aching right wrist and thumb
- Aching pain in fingers left hand
- Pain in both elbows with a burning sensation
- Discomfort in ribs on both sides
- Aching pain in both upper back muscles
- Aching and sharp pain in my buttocks
- Pain in both thighs
- Pain in both calf muscles
- Acute pain in both knees, mainly the right
- Pain in the back of both knees
- Headaches
- Change in toilet habits
- Aching pain in my neck
- Side abdominal discomfort
- Constantly tired/fatigued
- I can’t sleep properly
- Burning sensation after walking very short distances
- I feel like there is a bubbling heat going around my arms and legs
- Feeling miserable
- Feelings of dread
- Feeling like I’m not in the room
- Forgetful and vacant
- Aching Collarbones
- Nauseous
- I feel like I’m drunk when I wake up after a nap
- Morning stiffness in knees, hips and shoulders
- Puddles in eyes
Getting a Fibromyalgia Diagnosis.
Initially, my GP thought I had, in her words, “a significant heart problem.”
Ironically, she was right because I was diagnosed with heart failure shortly after.
But that didn’t explain my widespread pain.
So, alongside referring me for Cardiology tests, she also organised an appointment with a Rheumatologist. Thankfully the appointment came through quickly.
After discussing my symptoms, examining joints and pressing pain points, the Rheumatologist diagnosed me with Fibromyalgia.
Now, I had no idea what Fibromyalgia was. Even when the consultant explained it, it was still as clear as mud.
Was it musculoskeletal, immune system disease, nervous system illness, neurological or something else?
It turns out; Fibromyalgia can affect all of these bodily systems at different intervals. But, as of yet, it is not pinned down to one specific system.
This means Fibromyalgia symptoms are often mistaken for and attributed to other illnesses. I can’t tell you how often I’ve heard of people being misdiagnosed.
Fibromyalgia Treatment
Successfully treating Fibromyalgia is more by chance than design, not least because the treatment for one person may not work for another.
And a treatment that works today may not work next week!
The treatment I was given was a tablet called Pregabalin. I started on a low dose. Over time, I became immune to its effects, so the amount increased to the clinically accepted maximum.
I have been on the maximum dose for years. All it ever does is take the edge off my pain, but it never eradicates it.
I was considered for a 12-week pain management program, but my other illnesses and caring responsibilities meant I wasn’t suitable.
The pain clinic recently said they would investigate a more tailored program, but the global pandemic hit was the last I heard of it.
I try to self-help by using CBD oil. Again, it has taken the pain down a notch but not enough to say I am pain-free.
I know other people have been offered treatments with varying degrees of success. Here are just a few of them:
- Pain Management Medication
- Pain Management Course
- Antidepressants
- Meditation
- Yoga
- Cognitive Behavioural Therapy (CBT)
- Counselling
- Exercise Programmes
- Acupuncture
And I’m sure there are many more treatments, some more successful than others, some probably quite wacky.
The truth is, treating Fibromyalgia is often a case of trial and error.
Here’s what Fibromyalgia is like for me.
The easiest way to explain how Fibromyalgia affects me is to walk you through a typical day.
I won’t take you through a flare-up day because it simply involves staying in bed, writhing in agony and being at war with the world.
So an average Fibromyalgia day for me looks like this: