Tag Archives: chronic pain

My own ME/CFS/Fibromyalgia story


I am writing this with the benefit of 20/20 hindsight, in the hope that someone else may recognise the symptoms I had (and ignored) and do something before it is too late.

When my first symptoms appeared I did not rest but ‘fought bravely on’, or so I thought. The truth is I made it much, much worse for myself……

Let us start at the beginning.

By all accounts I was a precocious kid who was also very shy.

About the age of five or six (maybe seven?) I came down with glandular fever. I did not know it at the time but this was very bad news and quite possibly the beginning of my current condition.

I remember feeling incredibly exhausted and in pain all over my body. After I was diagnosed I had six to eight weeks off from school and vaguely remember being so tired that I couldn’t do anything, spending all my time in bed. Not much fun without the smartphones and laptops we can enjoy now.

I was very young for my class, as my birthdate of early February allowed me to start before I was strictly of school age. This meant I finished Year 12 when I was only sixteen.

After the glandular fever I was a fairly normal kid. I spent ages outside playing with the kids up the street, running around with the best of them. In fact my parents had to tell me, on many occasions, to calm down and not make so much noise.

I wish I had that energy now!

In grade eight, from memory, I started to ride my bike to school. This was no mean feat when you consider we lived five miles away as the crow flies, and there were not many crows around to give me a lift so it was probably a six mile trip for me and my bike.

I participated in all sports, cricket and football being the main ones, and ran the 800 metres on sports days.

The only symptom I can recall near this time is that when I became a teenager I would sleep (when on holidays) until two or three in the afternoon. My Mum chided me for this, and why not because it was not normal behaviour. The beginning of CFS?

I exercised a lot, including a 1.5 kilometre run most nights (yes I know I’m mixing metric with imperial, I was at school when it changed so give me some latitude here!) so I did not lack energy.

When my University days began I do remember waking up feeling more tired than when I went to sleep. I had to drag myself to go to boring lectures and tutorials. However I thought the tiredness was because of my hatred of University. Another big mistake.

Then I started my first job as a Management Trainee at a bank. I quit after less than two years when I thought I was underutilised (I had taken to bringing a book to work because I got my work done too quickly).

In hindsight I was monumentally stupid. I was in their marketing department at the time, a role I would kill for now.

However I knew better (I didn’t) and since I had got my first job at my very first ever job interview, how hard could it be to get another one?

Bloody hard, especially if you quit your job during a recession. More fool me.

I spent the next two years doing odd jobs (storeman, pizza delivery, market research) before landing a role in retail sales. Oh, and waking up exhausted. The CFS continued and I knew no better so I soldiered on. Another big mistake.

My personal anxiety at this point was through the roof. I finally got a full time, steady job, but as a retail salesperson. Every day for the first few months I’d have to psyche myself up just to get out of my car and walk the few remaining steps to work.

My anxiety was stratospheric.

My morning tiredness by this point was out of control. Coca Cola was my staple drink, three or four cans a day to keep me awake…plus I loved it!

Fast forward a few years to my thirties, still changing jobs every two or three years because I would get bored. My first marriage had imploded and my morning exhaustion had me eating a Mars bar with a can of Coke for breakfast, just to get going. Yet another clear signal (with hindsight) missed.

This went on for a few years.

After my failed marriage, which meant I could only see my son (who was the light of my life) every second weekend, my stress levels were on another planet.

During the twelve months directly after my wife and I separated I suffered tonsillitis three times, was made redundant twice, had my wisdom teeth out, a knee operation and almost died from liver failure due to an auto-immune disease. Stress galore and even more tired in the morning.

Looking back now the stress was so enormous it was always going to pay me back, big time.

At this stage I definitely had what would be diagnosed today as CFS. They say the best thing you can do at early onset of CFS is to rest. However I was going through a divorce and had shamefully had to move back home because I was broke, so no rest for me.

Fortunately another good job came around and I was spending more time with my son (50/50). He kept me going when I was totally exhausted. How could I stop with a young (three or four year old) wonderful, incredible child to care for?

I had a lot of sales roles early in my career and as a sufferer of anxiety this was not good. However I persevered because I liked unemployment even less.

Waking in the morning was becoming a far more serious issue, as I had to force myself to roll out of bed to make sure I wouldn’t go back to sleep. Days were just a blur and I couldn’t wait to get home and lie down.

Sound familiar?

My fault entirely, as some management consultant had given an IQ test to everyone at a place I worked whilst in Sydney (another story). The good news was that he recommended I join Mensa and he told me that if I found myself in a room of two hundred people then I would, on average, literally be the smartest guy in the room. After the ego died down I put enormous pressure on myself to succeed (in anything, I just had to!).

After my return to Adelaide I was working a normal nine to five job, then at the end of that day I went to an office I shared with a friend, in a startup business we saw promise in. After just over a year of this and having a local distributor steal the exclusive rights to what we were selling, we decided to call it quits.

I was so damn tired I could hardly think straight. But I HAD to succeed and be a millionaire by the time I was thirty-five! This was the worse thing I could of done to my now very fragile body and mind.

Then I met my second wife (still married eighteen years later) who is very much into health. She became very concerned over my morning tiredness and the stress I was under.

After actually waking up feeling refreshed (the only time I can remember doing so in my life) on Kangaroo Island on a holiday, I readily agreed to see if anything could be done. I wanted more mornings like that one!

My first doctor diagnosed me with anxiety induced depression and I was put on a drug that, again in hindsight, made my ME/CFS condition worse. I took Zoloft for the next fifteen years. Zoloft can lead to ME/CFS and Fibromyalgia.

A few years later I joined a very small business and invested a lot of time and money into it. The business was in the finance industry, and I joined exactly one month before the Global Financial Crisis wiped us out.

My timing, when it comes to money, has always been atrocious.

Even more stress now, as we faced the reality of possible bankruptcy and losing our dream home. For the next three years I worked every single day (yes including Christmas Day) networking and chasing clients for my own sales and marketing consultancy, as there were simply no jobs during this time after the GFC. Money was great one month and terrible for the next two or three.

Even more stress.

Then I started teaching international students all about business, team building, leadership, finance and marketing. I loved it. However I was still waking up feeling exhausted.

Then in about April of 2016 I had what I thought was the flu. I felt like I had been hit by the proverbial bus but strangely did not have a blocked or runny nose. I now believe this is when my Fibromyalgia began, with this virus triggering another that had lain dormant since my glandular fever, causing my ME/CFS and Fibromyalgia to explode.

The GP I went to for this ‘flu’ told me to rest and wait it out. I tried to talk to him about my exhaustion for the last thirty years but he dismissed all this, telling me to get a good night’s sleep and take up exercise. The worst possible advice for the condition I had.

I went back to work a week later when I should have stayed in bed. If I had I probably wouldn’t be in the situation I am in now.

Then my legs started to feel incredibly heavy, as though made of concrete, and I began walking crookedly, uncontrollably, crashing into walls and, most embarrassingly, walking into student desks. The pain in my legs started soon after.

Finally I was getting the message my body had been trying to tell me for the last thirty years…”Stop! Rest! You are an absolute wreck!”.

The next doctor (I did not bother going back to the unbeliever) was sympathetic and actually believed in ME/CFS and Fibromyalgia. However she told me she did not know enough about it and so referred me on.

In so doing she did me an enormous favour and I will always be grateful.

The next doctor was a godsend. I first saw her in July of 2016. She had no preconceptions about my condition and was treating other patients with the same symptoms.

I had a five week break over Christmas that year (2016) after struggling to get through every day beforehand. I did nothing but stay at home and rest, but at the end of those five weeks I did not feel any better.

My suspicions were confirmed on my first day back at work as my symptoms were as bad as they were before my break. This way the time when I knew something was seriously wrong.

My new GP sent me to a Neurologist, fearing MS, whom I saw in January 2017.

The Neurologist shared the suspicions of my new GP and booked me in for an MRI. It showed lesions in my brain but it was inconclusive for MS.

My all over body pain (Fibromyalgia) got steadily, and significantly, worse. Eventually every day when I arrived home after work I had to ring my wife to come into the garage, and help me to get out of my car. I could not get out without her help.

Eventually I asked my boss at the time if I could work from home every Wednesday because of my illness, as Wednesday was my admin day. I had taken increasing numbers of days off before this just to try and cope. Unfortunately he did not believe me, instead he asked if I had my own business outside of work or was I working for someone else each Wednesday. That relationship was therefore doomed, and I must my part that with everything that was going on in my life I was probably not being a model employee

Shortly after I parted company with my sceptical boss, and had another teaching job within days, working just three days a week.

Unfortunately my condition continued to deteriorate so I started working just two days a week, then one. Finally I had to tell my employer that I couldn’t even do one day a week because it was taking more than a week to recover from just that one day.

With fear and dread at the consequences, my wife and I had decided that I simply could not work in my my condition.

In June of 2017 my Neurologist ordered another MRI which showed no change. Just in case she had missed something she referred me to a Specialist Physician. The good news was that she did not think it was MS, which was a relief.

The Specialist Physician diagnosed me with ME/CFS and Fibromyalgia. I finally had my diagnosis! I felt relief and dread in equal measure.

While all this was going on I was dealing with superannuation insurance claims and the reality that we were going to have to sell our dream home. Keeping our house clean for open inspections was a never ending task for my poor wife, as I literally could not raise a finger to help her.

This all happened from April to September last year.

Then our house sold, a bittersweet moment filled with regret, sorrow and extreme guilt for me. After all it was because of my illness that we had to sell.

I suffered more stress since July 2016 through to when our house sold in September 2017 than ever before.

And now we had just thirty days to find somewhere to buy or rent.

Fortunately we found a beautiful place in Nairne, about another fifteen minutes out from the city. It is smaller than our last home but we are loving it more and more each day (to my eternal relief!).

However prior to knowing that we would love this new home, but feeling a little excited because it was so new, the packing and moving happened all around me as I looked on helplessly and with much guilt.

Yes, stress levels even higher again. I know now that had I taken a few months off after my ‘flu’ in April 2016 I could possibly have recovered completely. Unfortunately I refused to give in and kept dragging myself to work. The alternative at that stage being far too terrifying as I knew how much my wife loved our home, as did I. I was also not sure if we had any insurance that would help us.

My wife and I had visions of a tiny unit in Elizabeth. Or even worse, asking to stay with my parents for a while!

After we moved I spent my time chasing Centrelink and insurance companies, and suffering worsening symptoms. The pain was intense over every square millimetre of my body and I had not had a day without this pain since April 2016.

At one of my visits with my new GP in around August of last year I told her I felt as though I was slowly dying.

We kept trying different drugs but the opioids gave me very bad side effects. One night I almost asked my wife to call an ambulance for me, as I was experiencing severe gyroscopic dizziness and was not sure where I was.

Today as I write this I am in ‘forced retirement’ while my poor wife, who has been an angel through all of this (as has the rest of my immediate and incredibly supportive family), has to keep working.

We have about eighteen months of Income Protection payments left, after which I will receive less than half that until I turn sixty (I am fifty-four now). Then it is the Disability Support Pension which took ten months and the submission of about one hundred pages of information to approve.

My GP has been trying some different drugs lately and one has given me some small relief. Unfortunately my days are still filled with sleeping, reading, watching Netflix, taking drugs and trying to take a shower.

And yes, when I tell that to some people they respond by saying it sounds like a wonderful holiday to them. Then they look at me, see (on the surface) a healthy looking person and either turn away or give me that stare first, the one that says; “You’re a lucky bastard.”

If they had to spend just twenty-four hours in my skin they would be begging to return to their previous lives.

Boredom is a major part of my life. I cannot walk more than 500 steps a day without having a crash the following day. A crash is even more pain, a migraine, incredibly painful feet and hands (so I cannot walk anywhere or hold anything), dizziness, insomnia (wired-tired), not to mention the pain on every square millimetre of my body.

Basically I spend the day in bed taking as much medication as I am allowed and go through three or four cold compresses for my exploding head.

Back to some good news. At least now I know what illness I have and all the uncertainty, forcing myself to work when feeling like death, disbelieving doctors, sceptical employers and the stress of losing our dream home because of my illness, is all behind me.

I have no idea what I will, or can, do for the rest of my life. However one thing I am sure of is that I want it to be a very, very long one.

Hey??

Every moment I spend with my beautiful wife and family is worth all the pain and suffering. I hope that you have someone in your life that makes you feel the same way.

Good luck to us all, and may a cure not be too far away!

An Awareness Poem for CFS/ME and Fibromyalgia sufferers


Suffering chronic pain in silence

Yet not even your medical licence

Makes my illness visible

I can hardly walk

And yet you talk

Of exercise, you’re so derisible

Spend a day with me

And you will see

What I do, just to survive

And yet you doubt

What my disease is about

You think you are so wise

What do I have to do

So I can prove to you

That my illness is very, very real

Perhaps spending a day in my skin

Would allow you to begin

To know exactly how I feel

Only other sufferrers like me

Can really see

The pain I suffer every day

So take your scepticism and leave

Until you come to believe

Because this may be you one day

No known cure nor cause

I deserve a round of applause

When I stand and walk five paces

Pain and headaches go on and on

Can’t tie laces so now wear slipons

A stranger to my favourite places

Now add dizziness, nausea and much more

To understand why my soul is so sore

Your disbelief is ignorant and baseless

Ninety plus per-cent of my days spent in bed

A cold compress and pills for my head

I pray for the day this will all end

Perhaps then you will welcome me

And be ready and willing to see

That this is real, my dear ex-friend

Bloody Migraines!!


Well, 3.35am and my latest migraine is now ‘just’ a bad headache.

I had one last night too. In fact they are so regular, I do not think I have gone a whole week without one since my illness started around June 2016.

It nearly always starts the same way. I am asleep, I wake up and need to pee (please excuse my crude language but I do have a very bad headache) and at this stage I feel alright, in that I do not have a headache. Then I get out of bed and it hits me, hard, usually on one side of my head.

This causes me to stumble and crash into the walls, furniture, basically everything, when I am trying very hard not to wake my wife (fail!). She gets up at 3.30am for work so she needs her sleep. This makes me feel guilty and my headache responds by pounding the side of my head even harder. It is the right side today (just in case the suspense of not knowing was too much for you).

So, I go and get the ‘beans’. We always have two packets of beans in the freezer, wrapped in tea towels so I can rest my head on them. Yes, two packets, as some of my migraines last for quite a while.

So now I am at the point (this point arises, at some time, with every migraine) of deciding whether to take a Maxalt, which is a tablet specifically for migraines. I place one tablet on my tongue and let it dissolve. The reason I hesitate is because they used to cost just over $6 a tablet, which quickly adds up when you have several migraines in a week.

Fortunately now I have qualified for the Disability Support Pension and with that comes cheap medication. So, now they cost me just over $2 each.

So why am I waiting, you ask?

Just take the tablet and get rid of the pain? Well, you see, if I took a tablet for every headache (as all my headaches can turn into a migraine within seconds, literally) then I’d be taking around 4-6 tablets a week, or between $468 and $624 a year.

My illness already costs me enough in Doctor and Specialist visits and all the other medication I have to take.

So I hold off on taking them until the pain is so great, and has been with me so long that I cannot stand it anymore.

I know that many people with ME/CFS and Fibromyalgia experience these same headaches, which I take some weird comfort in. So thank you, but I hope your headaches leave you for good.

And now the time has come. I cannot stand this any longer so I am going to crack open the piggy bank and take some drugs.

I really hope they work! They do most of the time, but sometimes…well, I better not think about that.

My fellow sufferers of broken sleep and agonising pain, may your headaches be mild and your painkillers cheap!

Amen.

I was King of the world… temporarily


So, I’ve been on a new drug for several weeks and yesterday (it’s just after midnight) morning I woke up feeling a bit better.

Sure, my hands and feet were still in a lot of pain (7/10) and when I tried to read I kept falling asleep and hallucinating while reading. Oh, plus my terrible itching from just below the knees down and a headache that was trying hard to become a migraine, and my skin (yes everywhere, all over my body) was still very sensitive and in some pain and all my joints are incredibly sore… but apart from that not bad at all.

Possibly the best I’d felt in a couple of years.

So what did I do? I overdid it of course, as we all do.

Hey look I can walk 30m with just a stick and don’t need my wheelchair!

So I ended up walking just over 700 steps when I’ve been under my 500 limit for ages.

Oh, and it felt good!

Until I woke up just before midnight (twenty minutes ago) with excruciating pain in my knees. And yes the itching, hand and foot pain are all still there and have been joined by neck and back pain.

And insomnia.

Why do we do this to ourselves? Because for two years I had pain all over my body, head to toe, and today (well, technically yesterday) my middle felt reasonable. Not in a ‘let’s go dancing’ reasonable but in a ‘hey, my pain is not as bad in places’ type reasonable.

And now I am paying for it. Just 200 steps over my self-imposed limit (try walking just 700 steps in a day and you will realise how pathetic my 500 steps are) and my knees are on fire.

So did I learn my lesson and will I take it easy next time I have a ‘good’ day??

Of course not!

Centrelink – epic fail!!


Centrelink is there for the needy, sick and disadvantaged, and yet provides the worst service of any government agency.

The top level of management needs to be sacked immediately, along with their middle management that publish outrageously incorrect phone answering statistics.
Then, and I know this will cost us, but there needs to be a Royal Commission into the whole Department and the policies currently in place. It could easily be a case of the right people being tied up by stupid beaurocracy. Until such a public, complete investigation is done those most in need of help in our society will continue to be treated with disdain.
We should all be ashamed (especially the policy makers who make it so difficult for Centrelink staff to do their job) for treating our people so badly.

Fibromyalgia – complete body pain


The sleep paradox. I do not sleep well at night yet cannot keep my eyes open during the day.

 So, do I not sleep at night because I sleep during the day? No. From the time my wonderful wife gets up until around midday (or later) I find it almost impossible to keep my eyes open, no matter what you might threaten me with!


To try and stay awake I will play a movie…..and have to restart it at least half a dozen times because I keep nodding off. Even loud action movies.


So what is the difference? At night when I am lying next to the most wonderful, selfless, caring and beautiful woman in the world it is completely quiet. This enables me to hear clearly the loud ringing tinitis in my ears, and exquisitely feel the pain all over my body (even with prescribed pain medication). It makes sleep very difficult, so I lie here and try to rest, and wait until morning when noises begin and sleep can come my way through distraction.

The accompanying picture to this post is almost accurate as the red parts indicate where my chronic and extreme pain is in my body. The only error is that it is not all in red, as my pain is everywhere. Even my skin is so sensitive that when it touches the bed sheets I get an extra ‘kick’ of pain.

I do realise that there are millions of people worse off than myself, yet unfortunately that thought is little comfort in the middle of the night when I cannot even touch my wife, as the extra pain is too much to bear.

So what is the point of writing all this, apart from ‘poor me’?

To the 90 per cent of doctors who do not know anything about, or indeed believe in Fibromyalgia, ME or CFS (Chronic Fatigue Syndrome) I suggest some light reading as the research into these conditions increases daily. Just because you do not know what your patient is suffering from is no reason to simply prescribe some pain medication and recommend the three old faithfuls of – ‘get more sleep, eat healthier and exercise regularly’. This seems to be their mantra for any condition unknown to them.

If I tried to exercise I would crash within the first minute and take weeks to recover, so no thanks. Your 10-15 minute appointments that are meant to somehow allow enough time to diagnose every conceivable condition are a joke, as no-one can diagnose accurately more than 60 per cent of the time given that money-induced timeframe. Whether it is Medicare that needs increasing or your realisation, and admission, that you are wrong many times is arguable.

Just remember we are people, and if you had our condition for just a day you would not be able to work, or diagnose yourself, would be swallowing the highest dose of painkillers you could get your hands on, and perhaps then we would receive the attention we deserve.

The movie ‘Unrest’ is an excellent place to start your real education into our condition.

I wish you luck, as I do your patients.