Thursday, 28 March 2019

A Diagnosis At Last



For the vast majority of my adult life, I've suffered regularly with various health niggles.

A gallstone attack during my first pregnancy which put me in hospital for a week while I was on holiday.

A particularly nasty bout of shingles in 2017 which left me with permanent vision damage.

A bad case of kidney stones toward the end of last year which saw me spend a few days in hospital.

Never anything terrible enough to cause serious concern, but regular experiences of poorliness and general ill health.

All of which were always put down to my Graves disease - an autoimmune disease that I've been living with since I was 18, which causes my my body to attack my thyroid gland. It means that my metabolism is basically non-existent and I have to take a concoction of steroid-based medication daily to keep my thyroid working.

When you have one autoimmune disease, you're statistically more likely to develop others and you're also more at risk than the average person of picking up lots of infections and viruses too.

So I guess that's why, for the past few years, I've written off the many symptoms I've been living with on a daily basis.

Symptoms such as:

*Fatigue beyond anything I've ever experienced in my life, which isn't eased even after a full nights sleep.

*Constant throbbing and shooting pains throughout my body, but especially around my legs, fingers, shoulders and neck. Sometimes the pain in my legs feels as though something is crushing me, like a literal weight pressing down on me.

*Regular bouts of IBS which never seems to be eased by diet

*Poor memory and concentration, and a feeling of "fuzziness" in my head - lack of ability to hold the thread of a conversation, or remember certain words

*The worst insomnia I've ever experienced - feeling exhausted but never able to sleep. And even when I finally do drift off, struggling to stay asleep or feel at all rested when I wake

*Pounding headaches which seemed to be occuring every single day and are never eased by painkillers

*Mystery rashes appearing on my legs for no apparent reason

To name just a few.


So finally, just before Christmas - when I was feeling particularly unwell, struggling to stay awake most days - feeling a level of bone-tired exhaustion far beyond anything I'd ever experienced before - I decided to go along to see my GP.

I didn't hold out much hope of any help if I'm honest.

 My past experiences with my Drs office have been less than positive to the point where I now actively avoid going there unless I'm desperate - and over the years I've seen many GPs with these symptoms only to be brushed off and sent home with an explanation of it "probably being linked to my Graves disease".

But desperate I was, and so - accompanied by my partner for moral support - I braved a visit there.




My Dr referred me for some blood tests to rule out certain conditions that these symptoms might apply to. I was tested for everything....full blood count done, checked for rheumatoid arthritis, diabetes, lupus, anemia...my thyroid function was checked, my liver and kidney functions were tested - and every single test came back to show that I was completely healthy. In fact he went as far to say that my blood results were some of the healthiest he'd ever seen! (Take that fat shamers...)

So..then, what could be the issue?

Well, after a couple more blood tests to rule out yet more things and an appointment with a rheumatologist, I finally have my answer.

I have fibromyalgia.

And while it's absolutely a relief to finally have a name for it...to know what is causing all of these issues, and be able to read up on it...the downside is, that there is no cure.

Nobody fully understands it, and very little is known about what can be done to improve the symptoms.

As with most things...everyone and their dog has an opinion on how best to ease the symptoms!

"Exercise cured mine completely!" some declare, while others counter with "Whatever you do, don't go down the exercise route - it made mine so much worse!"

There are contradictory suggestions of foods to eat and avoid. Stories of various pain relief which works wonders for some but yet has made others more miserable than ever thanks to its side effects.

In short...it is a minefield.

And it's hard enough to wrap my own head around it and try to figure out the best pathway around it for myself, without the constant input from other people weighing me down too...even though I know they're just trying to be helpful.

Fibromyalgia is a condition which is different for every person who suffers with it - everyone seems to have slightly different symptoms, and different experiences of what helps and what hinders them.

When you add all of this muddled advice to my existing health condition - which in itself is not the easiest of conditions to live them and has a list of symptoms as long as my arm -  it becomes even more difficult. Because often what is rumoured to help one of my conditions is known to exacerbate the other.

So here I am...with a diagnosis at last, but no closer to really knowing how to make life more manageable or how to feel better.

I was incredibly lucky that the last GP I saw had specialised in rheumatology and so was able to give me some advice . His main piece being to avoid the fibromyalgia groups on Facebook like the plague as, in his words, they are filled with people sharing their tales of woe and will apparently leave me feeling hopeless about it all. Something I'm happy to take his word on for now, as I don't feel that hearing about other people's struggles would do anything but depress me at this point. Although I may look into them in the future, when I'm feeling less overwhelmed.

He also reassured me that my complaint about the excruciating pain I feel when my children climb onto my lap for a cuddle was the most common one he hears from parents with Fibro - and he sympathised about how guilt inducing this must be.

He's not wrong.

Of all the physical symptoms I have, by far the hardest one to live with is the guilt this condition makes me feel.

During it's worst moments (known as "Flare ups" which can last for days or even weeks at a time) this condition has left me barely able to move off the sofa, often in tears with the pain I'm in and unable to properly engage with my three very young children who don't understand why one day Mummy is running around the park with them and the next she can barely lift a finger without whimpering.

I feel heartbroken and consumed with guilt when I have to ask the boys not to hug me too tight, or to give me some space when I'm feeling in pain and overwhelmed.

And although I know I have done nothing to bring this condition on, I can't help but feel a misplaced sense of guilt at having it...as though by falling victim to it I've somehow let my children down.

The mental health aspect of this has been quite intense, and I've been looking into services like BetterHelp for some support with this.

For the last month or two my time has been spent trying to learn how to manage it.

At least now that I know what it is, I'm able to look into the common symptoms - which has helped me to realise that many of the things I experience regularly which I thought were simply little quirks of mine are actually more symptoms caused by Fibromyalgia.

For example, I always thought the fact that I feel overwhelmed to the point of a panic attack when there are too many sounds going on at once was just a strange "thing" of mine...I also thought my tendency to get dizzy and light headed in supermarkets when the lights feel too bright and there are too many people around me was another quirk. But actually, these things are symptomatic of the sensory processing/overload difficulties that many fibromyalgia sufferers experience.

I also know now that periods of stress or high activity are likely to lead to flare ups...so I'm trying to learn how to balance my schedule more, and schedule in periods of rest after active or stressful days to reduce the after-effects.

Sometimes this seems to work, sometimes not...but it's a learning curve.

My Dr has referred me on to a Fibromyalgia information session held at our local hospital which is held periodically to help sufferers learn more about the condition and how to manage it, so I'm hopeful that I might find that useful. It certainly can't hurt.

But for now...at least I know what's causing the problems I've been having. And at least I can stop convincing myself that I'm dying of some exotic disease!

Always a silver lining, right?!

Do you have experience of fibromyalgia? Please leave a comment below and let me know.


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4 comments

  1. I am so pleased you have a diagnosis. Obviously it would be better if there was nothing at all wrong with you but knowing what it is at least you can research, work our what works best for you to improve the symptoms and manage it. Sending love and hugs xx

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  2. Hi H :) the word got mentioned for the first time for me at my last docs appt. And snap I’m avoiding any Facebook groups. What I have so far gleaned useful is looking to reduce inflammation generally and increasing self care : mindfulness - happy to catch up for a natter anytime :)

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  3. Big hugs my daughter was just diagnosed with the same. You are in my thoughts xx

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  4. So Sorry to hear youve been suffering with such horrid symptoms Hayley but I'm really glad they've worked out what it is. A fellow school mum has Fibromyalgia and has very similar symptoms. I was diagnosed with hypothyroidism just before Xmas, I just didn't feel right at all and so so exhausted constantly. Now on levothyroxine. Hope you manage to find a way to ease some of the symptoms. Xx

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