Fibromyalgia - Fibromywhatnow?

Imagine, if you will, a day where you wake up with every single inch of your body in pain. Feeling like someone sticking needles in you from top to bottom, while your skin is on fire. That your muscles feel like you’ve run a marathon the day before. That your hair feels like someone is pulling it out from the roots.

Imagine on another day you wake up and you feel so exhausted that you just can not function. Like you’ve been running for 24 hours non stop, and you just have nothing left to give. Your body is shut down for the day, and no matter what you want to do, you just don’t have the energy to do it.

Well, friends, for me that happens on some days. I have an illness called Fibromyalgia. Many people are not aware of what Fibromyalgia is, so the aim of this blog post is to tell you a bit about my journey with Fibromyalgia and raise awareness of the condition.

The Start

When I first started experiencing symptoms of Fibromyalgia was in 2009. I didn’t know at the time what it was, but I just put it down to “bad days”. I’d wake up feeling like I was run down — a bit like the after effects of a cold or flu. It wasn’t anything in particular, but my muscles were aching, and I felt just generally ill. Nothing in particular… just… well, ill.

Eventually those days got closer and closer together. I spoke to a friend of mine about it, who suggested it might be fibro (as it’s often called), and suggested I spoke to my doctor. I went and spoke to a doctor, and that was the start of a long long journey. You see, a Fibro diagnosis is the elimination of all other possible causes.

Ruling out other conditions

If your GP thinks you may have fibromyalgia, they’ll first have to rule out all other conditions that could be causing your symptoms. These conditions may include:

• chronic fatigue syndrome (also known as ME) — a condition that causes long-term tiredness
• rheumatoid arthritis — a condition that causes pain and swelling in the joints
• multiple sclerosis (MS) — a condition of the central nervous system (the brain and spinal cord) that affects movement and balance

Tests to check for some of these conditions include urine and blood tests, although you may also have X-rays and other scans.

If you’re found to have another condition, you could still have fibromyalgia as well.

For me i had to eliminate these with blood tests, urine tests, mri scans, x rays and other rheumatic tests. This left only one option… but that wasn’t the end.

Criteria for diagnosing fibromyalgia

For fibromyalgia to be diagnosed, certain criteria usually have to be met.

The most widely used criteria for diagnosis are:

• you either have severe pain in 3 to 6 different areas of your body, or you have milder pain in 7 or more different areas
• your symptoms have stayed at a similar level for at least 3 months
• no other reason for your symptoms has been found

The extent of the pain used to be assessed by applying gentle pressure to certain “tender points”, where any pain is likely to be at its worst. But this is less common nowadays.

That was exactly what happened to me — over the period of 1 year, I was tested, poked, prodded, twisted, scanned and examined by 5 different doctors to get a diagnosis. Each test brings its own pain (due to the underlying symptoms) and each time the doctor apologises that there’s not a better diagnosis for it. It physically hurt to go through the process, and I couldn’t be given any useful medication until the diagnosis was achieved. The best they could do was standard analgesia (paracetamol) until I got the diagnosis.

The Diagnosis

In 2012 I finally got the diagnosis I wanted — Fibromyalgia. This was 2 years after experiencing the first symptoms. During the intervening 2 years symptoms were getting worse and worse. To the point that the day I got the diagnosis, I needed to use a walking stick to walk even a few feet, and I’d already wound up my business. At that point I was in a deep depression — hiding it well — but I was very depressed.

The day I got the diagnosis, a letter was sent from the hospital to my GP to advise that I needed other medication. 2 months later (that’s a whole other story) my GP FINALLY agreed to allow me to have the medication advised by the specialist at the hospital.

So What Does It Feel Like?

Fibro on a day-to-day basis can have multiple different symptoms and feelings — here’s just a few of them.

Hypervigilance

This is the state of being constantly tense, on guard, and exceptionally aware of your environment. Hypervigilance is an unpleasant feeling — Not only do you notice sensations more readily, but you’re also likely to be unable to divert your attention from them.

Heavy Sweating

Heavy perspiration can cause you to believe you have a fever. This is due to what is called an autonomic dysfunction in the hypothalamus, the almond-sized area of the brain that controls sleep and regulates sweating, bowel movements, and other automatic bodily functions. Heavy sweating, including night sweats, are often less discussed.

Allodynia

This is a pain response to a non-painful stimulant — like clothing.

Hyperalgesia

This is an increased pain response to a painful stimulus — like a cut.

Paresthesia

Numbness, Tingling, pins and needles — constantly,

Random Roving Pain

Pain with no known cause that moves around the body for no obvious reason.

“Knife In The Voodoo Doll”

There’s no better way of describing this — its an intense stabbing pain that seems to cut through you with no stimulus causing it

“Sparkler Burns”

Tiny pin-pricks of fire-like pain that when scratched turn into Allodynia pain

“Rattled Nerves”

Aching all over, with nausea, dizziness, anxiety — often a lot like the effects of flu

Spoon Theory

One of the greatest explanations of what it’s like with Fibromyalgia (and other illnesses) comes from the Article “Spoon Theory” by Christine Miserandino found at?https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I strongly urge you to read the article. It will help you to understand some of the daily troubles with Fibromyalgia.

So What Has Tech Done For Me?

I’ve seen the best and the worst of how a chronic illness like fibro can be harmed or aided by a workplace. I’ve had episodes in my career that have forced me to stop work for a week or more at a time — and that in itself is harrowing enough, but with other people’s actions, these have at times been made better — or made worse.

At one employer, I was penalised for wanting to take time off to recover from a Fibro Flareup — at another employer, adaptations were made to assist me over the winter period (allowing me to work from home, before this was the norm).

At one employer, I was told “oh, he’s making it up” — at another employer I was told “we don’t understand this, tell me more”

At one employer, I was told “it’s all in your head” — at another employer, I was told “this must be horrible”

Tech, on the grand scale of things, is one of the best industries for those with a condition like this — there’s adaptations that can be made much easier in tech that couldn’t be made in other industries.

Every employer will be different, but generally speaking, I’ve found employers in the tech industry to be much more understanding than others.

What can be done to support employees or colleagues with Fibro?

Talking! Simply listening to someone and letting them know you support them can make the world of difference to someone when they are struggling.

Be adaptable and fluctuate working hours when needed. Maybe allowing them to start later, or finish earlier occasionally could help them manage a flare up of symptoms a little easier.

Is their working space comfortable? Minor changes can really have an effect on aggravating fibro pain and symptoms.

Is there a work from home plan that can be initiated when needed?

So, as you can probably imagine, Fibromyalgia isn’t a fun experience at all — but here in the tech industry, things like this are made just that little bit easier.

This May 12th, remember that there’s people out there with Fibromyalgia and other conditions that really affect their day to day lives, and just understanding a little bit more about what it’s like can really help.