So Sick of My Hat of Many Rocks.

Banging My Head on a Brick Wall

I've been relatively quiet of late for fear of boring readers with all that ails me, but I just feel the need to vent my spleen one last time before undergoing a transformation (hopefully.)

I have had pain, ranging from excruciating to agony to severe to livable, twenty four hours a day, three hundred and sixty five/six days, for over thirteen years. Can you imagine that? If not try to imagine the pain you might feel if you were to wear a hat with a bunch of two pound sharp rocks dangling from it on varying lengths of rope - all strategically placed to bash into various points in your back, neck, shoulders, thighs, guts, knees, ankles, feet, arms, hands, wrists, fingers and toes as you move around - some days individually, some days all together at the same time but at different intensities - some pounding into you, others niggling, others constantly embedded on a pressure point. Now imagine trying to function normally with all those rocks hitting you throughout the day, then imagine going to bed physically beaten and exhausted but being unable to sleep soundly because you're still wearing your rock hat and, no matter how you position yourself, there's a rock digging into you somewhere on your body. Just imagine that hat, and while you're imagining that hat imagine also being bombarded by an additional, bigger and sharper rock straight into your stomach and intestines causing them to cramp, become sore and irritated and giving you horrendous diarrhoea, nausea, painful trapped wind, bloating, constipation. Imagine having to live with those rocks for just a short period - say, a month. Do you think you might go a little off the rails? Become depressed, anxious? You'd kill for a cure wouldn't you? Well. that's me for the past thirteen years. I'm not saying it's that intense every day but I kid you not when I say that I've been getting pounded by at least one of those rocks every day for thirteen years - sometimes the niggling ones, sometimes the two pound sharpies!

I've tried virtually every treatment known to man, have undergone more invasive tests than any person should have to endure, have taken pills and potions, tablets and lotions, with infinite hope and ultimate despair. I have had enough.

I don't want pity. God knows there are so many more people who've lived with it longer than me and who have it even worse than me - at least I can still work, albeit part time.

The time has come for a different approach. I have signed up to do something radical in a last ditch attempt to overcome fibromyalgia, crohn's disease / IBS, insomnia, anxiety and depression. I'll be writing more about this new radical approach in the coming weeks. It is going to take a monumental personal effort - and, no doubt, it's going to be unpleasant for a while, but I have to see it through to the end or fibromyalgia will be the end of me.

Hopefully I'll soon be able to remove my hat of many rocks. Wish me luck!!

Time for a Time Out to Tame the Black Dog

It's fair to say that, over the past few weeks, I've become disinterested in being ill, or at least I've become disinterested in writing about my illness.

Don't get me wrong, I do enjoy writing and maintaining this blog, it's just that I've reached the point in my illness where I want to focus less on it and more on myself. Is this a common feeling among the chronically ill? Is it just a phase I have to get through in order to reach the next level?

I don't know.

I feel like I've written all I can about being ill - regardless of the never ending array of new and strange symptoms - I can only write so much about sleep deprivation, back pain, restless legs, brain fog, headaches, irritable bowel syndrome. Nothing is new. Nothing inspires me to write.

This could, of course, be a symptom of that other invisible illness which is hounding me at the moment -  that big black dog depression (for which I have now been prescribed Prozac, as I couldn't tolerate Duloxetine, and some counselling - we'll see where that takes me!)

In short, what I think I'm saying is: "I need a break from focusing on how ill I am!"

In short, I'm saying au revoir for a while. It could be a short while or a long while - it depends on when and where I find inspiration (so I may be back next week!!)

I have a post scheduled for Monday morning - a sponsored post about a product I think you'll find worthwhile - and then I'm going to focus on taming that black dog!

Fibromyalgia and Depression

Having an invisible illness seems to lead to other invisible illnesses.

I have fibromyalgia. I also have IBS / Crohn's Disease. As my fibromyalgia was diagnosed first I assume that the anxiety and stress that placed on me, both at home and in my work, led to the turmoil in my guts. And it's been that way ever since.

Almost thirteen years have passed since I was first diagnosed with fibromyalgia and, in that time, I cannot remember a day when I didn't have symptoms from it. Of course it ranged from mild to moderate, moderate to severe, but always there. After four years of constant pain I eventually began to experience symptoms of IBS which, I assumed, were related to the lower back pain and I instantly thought I had cancer. After many weeks of putting it off I eventually went to see my GP and after a few more tests I was diagnosed as having Crohn's Disease an incurable inflammatory bowel disease. Oddly all tests since initial diagnosis have shown no inflammation so my gastroenterologist has 'downgraded' my condition to Irritable Bowel Syndrome - but it affects me no less because of this downgrading!

So, having lived with chronic pain for almost thirteen years and bowel disturbances for the past eight and a half years, I thought I'd had my quota of 'invisible' illnesses but it appears that I was wrong. For the Gods have decided to test me, yet again, to see how I cope with another layer of invisibility.

This new invisible illness came out of nowhere - as did the other two - but rather than hit me with symptoms all of a sudden - fine one minute, stricken the next - this cloak of invisibility crept up on me over a period of about two weeks. I'm talking about depression.

Obviously, when you live with chronic pain 24/7 for 365 days a year you're going to have times when you feel a little down and fed up with yourself. I've experienced times like that before but I've always snapped out of it fairly quickly and resumed as "normal" a life as I could under the circumstances.

But this depression has gone much deeper than my previous bouts of 'fed-uppedness' (if that's a word?) This depression has really knocked me for six. This depression has been the most invisible of all of my invisible illnesses - with fibro and IBS my family and work colleagues can see me physically wincing with pain or running off to the loo or holding my guts - sometimes they can hear my symptoms too, so as far as invisibility goes they're somewhat apparent to the outside world.

Depression is a whole new ball of wax. Externally there is nothing to see. I laugh at funny TV shows, I act the fool and joke around at home and make pleasantries with my customers and colleagues at work. My face and body show no outward signs of being ill.

In my head I want to explode. I want to shout at people who annoy me - the ignorant customers who don't say please and thank you when I have to fawn over them like they were royalty, the stupid ones who change their mind halfway through a transaction or wander off to get something else leaving me with a growing queue. I want to curl up into a little ball and hide away instead of facing these people. At home I join in because I have an obligation to do so, not always because I want to. I'm short tempered with the ones I love most and I hate myself even more because of it - and so it builds up and up and up until, one day, I know it surely must explode. Yet all the time I fight it so that, externally, my face looks 'real' and 'normal' just as I've tried to hide my chronic pain and gut turbulence for so many years. I try to be a valued member of society but I value myself less and less each day - I feel unworthy of praise, of love, of life itself. Things I love to do are being abandoned - art, drawing, photography, cooking for my family all feel like the most arduous of chores now whereas, six weeks ago, they were my life.

Depression is the most heinous of invisible diseases because there isn't a scrap of evidence of its existence. It's all in my head. I should snap out of it. I should think positively. It could be worse. I could be paraplegic - all the things we're told never to say to someone with depression I've told them to myself over and over again - and it's right they are definitely the wrong things to say to someone with depression because I can't snap out of it, or think positively and it couldn't be worse (surely) and I'm sure most paraplegics feel the joy of life sometimes and I know it's all in my head because it's a mental illness, to do with the brain, which is found, in most people, in the head!

I have not, as yet sought treatment for this depression, prefering to try and fight it myself - but I think I'm losing the battle. My reasons for not seeking treatment are that my GP thinks I'm a malingerer already and I'm worried about the side effects any medication might have on my already feeble guts. I know in my heart what I need to do - I've told many people in my position in the past to get treatment as soon as possible so I'm going to have to bite the bullet........ before I take a bullet.

Welcome to H.M.P Fibromyalgia. You'll Never Leave.

Fibromyalgia is akin to a prison. Not a nice, open prison, or even a high security pampered lock-down with all the comforts of home. Oh no! Fibromyalgia is prison with hard labour. No chance of parole. No time off for good behaviour. No chance of ever regaining your freedom. Fibromyalgia is a lifer prison, with bells on!

HMP Fibromyalgia has everything you need to live a normal life, a lovely home, comfy furniture, nice surroundings, you even get to live with your family if you have one, you might even be allowed to work in a real job, for a while. In fact, from the outside, no one would ever know you had been convicted and sentenced to life. But, inside, it's a living nightmare, a daily (and nightly) walk through hell.

I was 'imprisoned' over twelve years ago, locked up by invisible, sadistic guards who seem to want to punish me for daring to dream of being pain-free, stabbing at my intestines, twisting my muscles and tendons to breaking point, forcing cotton-wool into my head, switching on my brain just when it wants to go to sleep, allowing me the strength to plan a family outing and then cruelly intensifying my pain levels on the day of the trip, or feeding me something which, ordinarily, does not upset my delicate gut lining - except on this occasion, denying me the very basic human right to be pain free and lead a 'normal' life. 

HMP Fibromyalgia is the most vile and terrifying of all prisons because it gives you the outward appearance of being free whilst surreptitiously removing all of your freedom.

The evil and sadistic invisible guards have the upper hand at all times. You never know they're there. You never know when they'll attack but attack they will, and it will be when you least expect it. This makes you anxious every day, and that anxiety never leaves you. You may be spared punishment for an hour, a day, a week or more, but the anxiety of an imminent attack never leaves you. This psychological torture, combined with constant pain, eventually breaks you and you become depressed - as I am now - adding yet another dimension to your life sentence in another wing of HMP Fibromyalgia.

Welcome to HMP Fibromyalgia - Depression Wing. We might let you leave one day.


Hang on, No, we won't.


Oh, alright then.


Nope, just kidding!.

Blood Test For Fibromyalgia

King's College, London published the following article in May 2015 which reports they were funded by Arthritis Research UK to research and develop a reliable blood test to identify fibromyalgia and potentially develop new treatments.

Fibromyalgia is common pain syndrome causing widespread muscle and bone pain, as well as fatigue and disturbed sleep. It has no obvious physical cause, is poorly understood and difficult to diagnose, treat and manage. For years there was doubt among the medical profession whether fibromyalgia actually existed – except in the minds of patients.  (Sadly, this is still true of some medical professionals!!)

There is still no specific blood test, scan or x-ray that can confirm a diagnosis of the common pain syndrome, although blood tests are often carried out to rule out other conditions.

Now scientists at King’s College London, funded by a three year grant of £171,000 from Arthritis Research UK, are hoping their latest research will lead to a reliable blood test to enable doctors to make a proper diagnosis. 

The research team will examine samples and measurements taken from 400 twin volunteers from the 13,000 Twins UK Bioresource in which one twin has chronic widespread pain, to try to identify biomarkers in the DNA associated with the condition. It will be compared with the DNA of their healthy twin, to establish differences.

“Currently there is no blood test for fibromyalgia which makes diagnosis difficult,” explained lead researcher Dr Frances Williams from the Department of Twin Research & Genetic Epidemiology. “And treatment is limited, and in many cases unsatisfactory.

“Our research will help patients in two ways. First it will contribute to our understanding of how fibromyalgia – and other chronic pain syndromes such as irritable bowel syndrome – develop – and point to pain pathways, which we may not have suspected. 

“Secondly, we hope it will lead to identification of a biomarker which we could work into a blood test. As well as enabling the condition to be diagnosed more effectively, it could help to ‘stratify’ patients into groups depending on disease severity, which will help in clinical trials of potential new treatments. It might even help us predict how the condition will progress.” 

Fibromyalgia is known to have genetic influences but there are many complicated steps between the genes which are responsible for fibromyalgia and the condition itself. The King’s team hopes to explore these steps in more detail and shed light on the underlying biology of the condition. 

Specifically, this study will focus on identifying markers on the outside of DNA that are associated with the switching on or off certain genes. DNA ‘switching’ is very important to health, as it prevents inappropriate processes from occurring in the body when they should not.

The project aims to assess the profile of DNA markers in healthy and affected twins. If there is a difference between these marker profiles on certain DNA regions associated with chronic pain onset between twins, then this DNA marker could be used as an indicator for disease.

 

Dr Natalie Carter, head of research liaison at Arthritis Research UK commented: “Fibromyalgia is notoriously difficult to diagnose and treat, partly because we know so little about why it occurs and how it progresses. Being able to diagnose it would be a major step forward, and understanding more about the influence of genetics will allow us to develop treatments specifically for people with fibromyalgia in the future.” 

I'm keeping my fingers firmly crossed that they are successful - and soon!!

You can read the full article HERE.