This is a blow by blow description of what living with Fibromyalgia is like for me.
You and I might have the same symptoms, similar stories about how we were diagnosed with Fibromyalgia, 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 seems to be that men are less likely to visit their GP, especially with aches and pains.
It’s thought, 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.
Men with Fibromyalgia
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 and 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 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
- Sharp pain in both knees, mainly right and right feels as if it is about to give way
- Pain in the back of both knees
- Change in toilet habits
- Aching pain in my neck
- Side abdominal discomfort
- Constantly tired/fatigued
- Can’t sleep properly
- Burning sensation after walking very short distances
- 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
- Feel like I’m drunk when I wake up after a nap
- Morning stiffness in knees, hips and shoulders
- Puddles in eyes
Initially, my GP thought I had, in her words “a significant heart problem.”
Ironically, she was right because not long after I was diagnosed with Heart Failure.
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 is. Even when the consultant explained it, it was still as clear as mud?
Was it musculoskeletal, an immune system disease, a nervous system illness, neurological or something else?
It turns out, Fibromyalgia can affect all of these bodily systems and at different intervals. But, as of yet, 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 many times I’ve heard of people being misdiagnosed.
Successfully treating Fibromyalgia is more by chance than design. Not least because the treatment that works for one person may not work for another.
And, a treatment that works today may not work next week!
The treatment I was given is a tablet called Pregabalin. I started on a low dose. Over time, I became immune to its effects, so the dose got 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 for it.
The pain clinic recently said they would investigate a more tailored program, but the global pandemic hit, that 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 other treatments with varying degrees of success. Here are just a few of them:
- Pain Management Medication
- Pain Management Course
- Cognitive Behavioural Therapy (CBT)
- Exercise Programmes
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.
How Fibromyalgia Affects My Daily Life
The easiest way to explain how Fibromyalgia affects me is to walk you through a normal 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:
Bed – The first thing I do when I wake up is to think about pain.
Don’t get me wrong, I’m not a pain junky. It’s more of a head to toe body check to see where it hurts.
I start from the top of my head, work my way down through my body to my toes. I’m looking for obvious pain.
The second thing I do is start moving my joints. Depending on where and how much it hurts determines what kind of day I’m about to have.
I move my neck side to side, roll my shoulders, extend my arms, shuffle my hips, bend my knees, rotate my ankles and wiggle my toes.
Doing this means I can sometimes relieve morning stiffness and it helps me take a tally of where it hurts the most. This dictates how soon I’ll be able to get out of bed.
Getting out of bed involves dragging myself up into a seated position. I then need to sit on the edge of the bed for some time.
Once I’m able to get off the bed, I hold onto the radiator and pull myself up to a standing position. Almost immediately the pain in my feet, ankles and hips intensifies.
I have to be careful when I start walking because often an ankle or knee will give way. As a general rule, I support myself by holding onto bedroom furniture.
I find it almost impossible to get dressed while standing up. So, despite knowing it’s gonna hurt, I sit down again to get dressed.
Talking about getting dressed, I mean light clothing which in theory should be easy to put on.
Bathroom – It’s time to head to the bathroom.
It’s not that far, but the walk may as well be miles because every step takes its toll.
Without getting too personal, sitting down on the toilet hurts my hips. Getting back up again hurts my hips, knees and ankles.
Fibromyalgia can make even the smallest of movements painful. Simply having a quick wash, brushing your teeth and combing your hair can put you out of action for hours because it involves movement.
Fibromyalgia pain can involve your joints, nerves, tendons and muscles.
It’s not always an obvious pain. It can be a tingle, it can be hot, it can feel like bubbling under your skin and it can be extremely sensitive to touch which makes wearing clothes uncomfortable.
Most of all, it’s frustrating because on any given day it could be one or all of these types of pain.
Stairs – My next challenge is to get downstairs.
I know that sounds dramatic, but when you stand at the top of the stairs not knowing if your knee is going to give way or you’re going to be dizzy it’s a challenge. Both have happened to me, thankfully I wasn’t seriously injured.
Stairs have become a mental battle. It’s hard to force yourself to take the risk. I hate the fact I have to think about how I’m going to make it up and downstairs.
We have a stairlift fitted for Bridget. But, I have decided that only in an extreme flare-up will I use it.
The reason being, I want to be able to keep my body moving. I want to stay mobile, even slightly because it keeps my heart pumping. Short bursts of exercise like walking or stairs help my heart failure so I want to keep doing it.
Kitchen – It’s time for a cup of coffee.
We have lever taps that we can use with the palm of our hands. Turning them on and off isn’t too difficult.
I have to be careful not to overfill the kettle because I won’t be able to carry it. I usually use a jug and fill it one cup at a time. We also have a water urn which once filled can keep us in drinks most of the day.
I keep meaning to investigate those Single Cup Water Heaters (Affiliate Link)
I make a coffee then sit down at the kitchen table. I usually get frustrated sitting at the table because it gives me time to think about what just happened.
All I did was get out of bed, go to the toilet, come downstairs and make a cup of coffee but it feels like I’ve just finished last in a marathon.
Stairs – I’m a creature of habit so it’s now time to brave the stairs again.
It sounds extraordinary, but climbing our average stairs is like going for a long-distance walk. I say long distance because it involves painful joints, burning muscles, breathlessness and frequent stops.
I’m able to use the stairlift to reduce my pain and frustration. But, frustration is replaced with feelings of grief because losing your mobility and independence is like losing yourself. I grieve for the old me daily.
Shower – I’ll be honest, there are days when a trip back upstairs is too much.
It’s important when you’re living with Fibromyalgia to maintain some kind of routine. So, I make a point after my morning coffee of going back upstairs for a shower.
We’re fortunate because we have a full wet room. Taking a shower although uncomfortable, is much easier than taking a bath.
There are days when water falling on my body is like little daggers. I’ve had plenty of days when I stood in the shower and cried because it’s such an ordeal.
All of the movements needed to wash my body are painful. Some days, taking a shower literally means standing under the water without moving and just letting it run off my body.
Drying myself involves a lot of effort. Sometimes, I wrap myself in a towel and just sit on the toilet (lid closed) until I’m dry!
Food – I’ve always been a morning person. I like to eat a proper breakfast to get me through the day.
I used to cook a full breakfast every day. Now, it’s too much effort so boiled eggs are my staple because they are the easiest to cook.
Losing my cooked breakfast is one more frustration, one more part of me lost and the list keeps growing.
This seems like an opportune moment to mention Fibromyalgia and mental health.
It’s not often I see the mental health side of Fibromyalgia discussed so here it is.
Fibromyalgia chips away at you. It lurks in the background, slowly stripping you from being you. These little things build up throughout the day, over weeks, months and years and eventually wear you down.
I have yet to meet a Fibromyalgia patient whose mental health hasn’t been compromised in some form or other.
Rest – So, we’re not that long into the morning and it’s time to rest.
Regular rest is important when you have Fibromyalgia. If you listen to your body it’ll tell you when you need to rest. Ignore it’s warning signs at your peril.
When I talk about rest, it can be a simple sit down for ten minutes or going from functioning to must lay down before my brain and body shut down. It’s not a gradual thing, I’m not simply tired. It can be an all-out assault commonly known as extreme fatigue which is common within the Fibromyalgia community.
My mid-morning rest involves sitting and thinking. For me, it’s the thinking part more than the physical part of rest that makes me angry.
I find it hard to focus on nice things, instead, I focus on what an ordeal the morning has been so far. Rest breaks can last 10-minutes or as quite often happens fibro fog kicks in and before I know it an hour has passed. During this time, all I do is wonder what I was meant to be doing?
Fibro fog is confusing. It’s almost like somebody pumped thick fog through your ears and it messes with your brain function. You’re not able to concentrate or think in a straight line.
Fibro fog is frustrating both for me and the people around me. Sometimes I come across disinterested, sometimes even a little bit thick. It’s not something I can control, I generally just have to wait until my head clears.
The challenge for me is to not let rest stops take up too much of the day. So, when I remember, I plan and leave post-it notes around the house to remind myself what I was supposed to be doing.
Let me tell you, living this way has stripped me of every last shred of pride but needs must!
Work – As you know, I work from home and to be productive I must be able to focus.
The old me could multitask. Now, one thing at a time is more than enough if there is to be any chance of success.
If you’ve been reading the blog for a while you’ll know that because of other illnesses (heart failure and kidney cancer) I haven’t been as active as I used to be.
I haven’t been travelling, nor have I done much writing. I hate the fact that chronic illness has robbed me of two of the most important pleasures.
It takes a gigantic effort to sit down and write something, certainly something which makes sense.
I am working on procedures to help me increase my output. I will explain what they are in the “Working from Home” section of the blog.
Toilet – I have to maintain my liquid intake to help my remaining kidney.
But, I also have to limit my fluid intake to 1.5 litres a day for my heart’s health and to avoid fluid retention. This means frequent visits to and the ordeal of visiting the toilet. It just repeats the pain and frustration of my previous visits.
Rest – Believe it or not, it’s time for another rest.
I often reminisce of the life I had before Fibromyalgia. Those days involved getting up, getting dressed, getting washed, going to work, doing a full day’s graft, coming home and socialising.
So another rest so early in the day just compounds my grief for the life I’ve lost.
Outside – A luxury these days is being able to go outside. Pandemic aside, going outside involves a lot of effort.
It’s important to get fresh air and a change of scenery. It’s also a fine balance between conserving energy and trying to live something even close to what I would describe as a normal life.
As a general rule, assuming both Bridget and I feel physically able and mentally strong enough, we try to get a couple of hours outside a day.
This mainly involves driving to the seaside to look at the sea. It’s not that exciting but at least we’re out of the house.
I used to be able to push Bridget’s wheelchair for hours. These days, I can just about manage to get her wheelchair out of the car. Again, thanks to Fibromyalgia we both suffer.
If I ever get the money, I’d like to buy two folding electric wheelchairs to help us get back out bimbling.
Dinner – Cooking dinner is a royal pain in the arse because eating healthy food means chopping, preparing, lifting and more effort.
Whenever possible we buy prepared vegetables and chuck everything in the slow cooker. I have also developed a liking for easy to prepare, homemade soups.
The main problem arises when I’m too tired to cook. On these days, I get down because I’m the main carer and things have to be done. As a man, I feel it’s my job to provide and that includes food.
To say our diet has suffered is an understatement. However, it’s a work in progress and I’m developing a weekly menu that I can cook in bulk.
I’ll be writing more about healthy eating in future blog posts because I enjoy making healthy soups and fresh salsas.
Rest – The final rest break of the day involves curling up on the couch and pondering the day gone by.
I know I shouldn’t because it makes me feel sad. Sad for the things I was unable to do, sad another day has gone by and I’ve nothing to show for it.
I cling onto the hope that tomorrow will be different, though most of my tomorrow’s are the same as my yesterday’s.
Deep down I know too much “pondering” can be self-destructive but I can’t help myself.
I used to believe that if you wake up in the morning you’re in with another chance. Nowadays, I simply hope tomorrow will be better than today.
Bathroom – The final trip to the bathroom should mean brushing my teeth and using the loo.
Instead, by the time I’ve dragged myself up the stairs, prepared my CPAP, tried to brush my teeth without holding my arm up in the air and used the loo I’m beyond shattered I’m finished.
Bed – Fibromyalgia is well known for causing sleep problems.
For me, fibro coupled with heart problems meant I was diagnosed with two different types of sleep apnea. My diagnosis is obstructive sleep apnea, central sleep apnea, restless leg syndrome and periodic limb movement disorder.
I use a CPAP machine to try and get a night of restful, rejuvenating sleep. Oh, and so I don’t stop breathing for too long.
If you don’t know what a CPAP machine does, it’s a small machine and mask that blows air down your throat whilst you sleep. The idea is to reduce the number of apnea’s you have during the night. An apnea means your breathing is obstructed or you forget to breathe.
I know it sounds horrendous. In truth, if you persevere, you get used to it. It does help me get a better night’s sleep. Fortunately, for me, I’m exhausted by the time I get into bed and I’m able to drop off quite quickly.
Sadly though, my final thoughts are always reflecting on the difficulties Fibromyalgia caused throughout the day. If I could control that I’d probably sleep better still.
What Did We Learn About Men with Fibromyalgia?
As you can see, when you live with Fibromyalgia, there is a lot to contend with during an average day.
As well as being physically difficult, it’s emotionally draining. It feels like you are grieving for a lost life. Over time it takes its toll.
As a man living with Fibromyalgia, it strips me of my masculinity. I want to be the strength, dare I say the hero. But, I’m neither and it hurts me to my core.
This post isn’t all about me. I’m also a carer and Fibromyalgia has impacted on that too.
Almost every part of our life is about living with the least amount of effort. Where once nothing was too much trouble, today everything is trouble.
I’m obliged to do things as a carer, want to do things as a carer, but my body and brain have different priorities.
In a future post, I will write about what it’s like being a carer when you have Fibromyalgia. I think this post is long enough so we’ll save the caring aspect of my life for another day.
I want to end this post on a positive note because so far it’s all been doom and gloom. So I’ll leave you with these thoughts:
One day, Doctors might figure out what causes Fibromyalgia. Someday, they could develop a cure or if they don’t, at least find a treatment which works for everybody.
I know this post has highlighted the negative side of Fibromyalgia and I did want it to reflect the truth about being a man living with Fibromyalgia.
That said, there is always hope.
For me, hope means giving me my dignity back. Until then, I sincerely hope more men speak out about living with Fibromyalgia.
I appreciate you taking the time to read this very long post and I genuinely hope, even in a small way, it helps.
If you think it’ll help somebody you know, please help me to share and spread the message that Fibromyalgia affects men too.