Fibromyalgia diagnosis – How it felt

In the midst of all this madness I received some news, news I’d long suspected. Even though I knew in my heart of hearts; receiving the news still felt strange. After years of going back and forth, doctors appointments after blood tests after investigation, I was finally diagnosed with Fibromyalgia.

What is Fibromyalgia?

The NHS website states: “Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body

And the symptoms include but are not exclusive to:

As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • extreme tiredness (fatigue)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS)

My experience

In some ways, it’s difficult to pin point when I started to feel like this. Back in 2008 I had a gastric bypass which had a profoundly negative effect on my health. I’ve written about my experience both here and on the Navabi magazine site, Plus Size.

By stripping me of the ability to absorb calories fully, the operation also inhibited my ability to absorb any vitamins or nutritional value from the food I eat. Which, as you can imagine, leaves me feeling tired and lacking in energy.

But it was after I had Pops in 2010 that my health really started to take a hit. My periods had always been problematic, heavy and painful, but after having Pops they were happening every other week, I would be a week on, week off. My energy levels were at an all time low, I was struggling to stay awake. My body ached all over, I often felt like I’d gone 10 rounds with a championship boxer.

Thing was, I was a new mum, I just thought that was how it was supposed to be. I was tired, of course I was, I had a new baby! It never occurred to me that things weren’t right.

But as time passed by, this continued and never went away. My IBS became spectacularly bad, I couldn’t leave the house. I was being caught short in the supermarket, doubled up in pain, not able to get out of the car. Meals with friends would be cut short, instead of going for drinks after I’d go home and spend the night between the loo and my bed.

After having Pops my brain function seemed to deplete too. Once an avid reader; after giving birth, the words just seemed to dance on the page. A mist would descend and I couldn’t process what was there. It just wasn’t sticking.

At my most tired, I couldn’t vocalise. I knew what I wanted to say but the words wouldn’t flow. As someone who prides themselves on being well spoken and eloquent, it was heartbreaking (it still is). Although I often think that’s why I turned to writing. It enables me to think about what I want to say, and communicate effectively at my own speed.

Over the years, I experienced a lot of mystery illness, afflictions and obscurities. I was driving myself mad. I thought I was turning into some kind of hypochondriac. From rashes, to bruising, migraines and palpitations right through to monthly blisters in my nose, eye infections and sore throats. Not to mentions the aches, the pains, restless leg syndrome, shoulder injuries and body cramps. The list is endless, all of which after much research can be attributed to Fibromyalgia.

A life spent in the Doctors Surgery

I honestly feel like over the last 10 years, I’ve spent an inordinate amount of time in waiting rooms both at the doctors and the hospital. Every doctor different, every doctor unsure why I was experiencing these ailments. Now and then, I found the younger, more progressive doctors would throw around Fibro, but never follow it through.

With my vitamin deficiencies, and IBS, it was always just attributed to that.

But when I started experiencing specific joint issues (trigger finger, shoulder issues) I was finally referred to rheumatology. And from there the journey was lightening quick for me. I was referred in January of this year for an x-ray on my hands, I then received an appointment to see the specialist this month (March) and last week, I finally got the news I’d known all along.

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Super classy hospital selfie lolol

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In the consultants words I – “100%, 24 carat had Fibromyalgia, without a doubt”. The good news was I did not have any accompanying arthritic conditions, it was a clear cut fibromyalgia diagnosis. The bad news is, there’s not an awful lot that can be done.

It all felt a bit weird if I’m honest, and I think I’m still processing. It changes very little, it’s something I’ve lived with for so long that anything prescribed or that helps is a positive.

Moving forward

The consultant has prescribed me amitriptyline, which he indicated may help with my sleep. On further research it can be used for pain and depression, so it’s definitely got its work cut out with me! But I’m hoping, once my GP prescribes it, it’s going to really help.

He also informed me about a local support group who may be able to arrange hydrotherapy sessions, which is the dream for me as I love being in water.

On a personal basis, I’ve been taking CBD capsules. Something I’d wanted to do for a couple of years now, but I found the whole market really confusing. Thankfully my friend Lorna had experienced the same when looking for help with her Endometriosis pain. She then took the time to research the whole CBD market and decided to start her own business. In short, I’ve found them really beneficial, but that’s for a whole other post, which I’ll be bringing you in the following weeks.

I’m most definitely not an expert, and I wish I had answers. But should you want to know more, I can only give you a clue to my personal experience. But a quick google will open up a world of websites, support groups and forums. It’s a case of trawling through the information and trying to figure things out for yourself. From what I’ve read, and of course, know, it’s not an easy journey, but if you suspect you may have Fibromyalgia, consult your GP, do your research and be persistent.

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