Fibromyalgia - What's in a name?

Well, a great deal it seems, with Fibromyalgia. It means the difference between being able to buy food, medication and continue paying installments on your credit card, or, declaring yourself bankrupt.

My finances were in a precarious state, I had been ill for 6 months, living off my ever dwindling savings and couldn't see an end in sight. I had a diagnosis but was far from establishing the cause. I rang the Department for Work & Pensions to get some advice and they suggested that I make an application for Incapacity Benefit and Income Support; as I would probably be eligible for one or the other. However, this process would involve a telephone interview lasting about 45 minutes.

This was not a comfortable prospect; I could barely hold my toothbrush long enough to clean my teeth, let alone hold a telephone receiver, for 45 minutes - what an excruciating thought. I asked whether a family member could do the interview on my behalf, "No". I asked if a DWP representative could come and interview me at home, "No". What kind of a useless, unhelpful system is this? "Look", I said, "I can't guarantee that I will be able to get through a 45 minute phone call because I am not at all "well", which is why I am making this claim in the first place. Can you send me a form to fill-in?" "Yes", came the reply, "We will send you a form to fill-in but then we need to go over the answers that you have given on the form, during the telephone interview and input the information onto our computerised system. Obviously, we will ring at a time that is convenient for you. You'll have to spell fibro-mile-ja, I've never heard of that before". "Don't worry", I said, "it's news to me too".

"Remember", said the advisor, "you will need to get a sickness certificate from your Doctor, every 14 days, otherwise you will not receive your benefit; which is paid directly into your bank account". This was the only helpful sounding part of this process so far. I just had the impression that this benefits "lark"was going to cause me the sort of added headache that I could probably do without. It wasn't like I had a mortgage or 3 kids or a husband; but, it was bad enough. We all have personal financial situations and it is stressful which ever way you look at it when you are in a situation where you have had to give up work, indefinately; this is the worst part about it, not knowing how long the illness is going to last; months? years? and the possibility of becoming disabled and wondering how on earth you are going to get through life. The long and short of it was, I had bills to pay. So, i decided to break it all down into bite-size manageable pieces. The first step was to ring the surgery and get an appointment with Dr No 1; that coincided with a relatively good day - as opposed to a day when I was confined to bed - it's not like he is ever going to come out and visit me. You need to be bleeding to death for a Doctor's visit these days.
So, I rang the surgery...
(photo by snapdragon6 for "frou-frou" photography/copyright 2008)

To sleep, perchance to dream...

"These are a growing army of the walking wounded, the vertically ill who are too sick to function adequately but are commonly not sick enough to become 'horizontally ill', actually bed bound, although this is all too often an outcome in severe examples".

Leon Chaitow, N.D, D.O

In the six months between falling ill and being diagnosed, I was really lurching around in the dark, trying to work out what was wrong with me and how best to deal with it. I knew that this was not just a case of "coming down with the flu"; I'd had all the symptoms for months, but it never actually manifested into flu! Not even a head cold.

A typical day started the night before, because the quality of my sleep determined the exact type of waking life that I was to experience in the following twelve or so hours. I knew, that without making certain preparations before retiring to bed, then the following day was guaranteed to be a horrid round of painkillers, not having the strenghth to eat a meal (eventhough I was ravenous), keeping all physical movements to a minimum: to avoid using up energy that was in short supply - avoiding going back upstairs once I was down; it was a staggering effort - and deciding whether I could get away without washing my hair (it had been two weeks), which would set off a train of thought......I could lie down in the bath I suppose, just one shampoo, but, would I be able to massage it in? Not really, I just can't muster the strength - it's making my brain tired just thinking about it -slowly, is better then nothing, oh, but ma is out at work tomorrow and what if I can't get myself back up? I can't lie there for four hours. Well if the worst comes to the worst, I could....no don't be daft, I'll leave hair washing for now...perhaps Wednesday....And so it goes on.

My goal was to try and improve my quality of life, which would then give me, hopefully, enough strength to try and sort out how to treat the illness, but, I dreaded going to bed. I no longer watched TV of a evening, it was a festival of pain for my eyes and ears, it scrambled my brain and left my nerve-endings jangled. So, I would sit in bed after dinner and try to read a book. My body had gone to pot, but I was determined not to lose my mind along with it. However, what had once been a pleasurable pastime was now an instrument of torture as far as my brain cells were concerned, albeit, an occasionally comedy form of torture (at other times I really felt like I was fighting off the start of dementia). If I managed to visibly untangle the mess of words on the page, re-read the blind spots, reverse the sentences that had been processed backwards and go back to that word that looked like 'bugger' , but on closer inspection and after much concentration actually said 'began', well I could make myself so tired that the urge to sleep would envelop my brain and I would snuggle down with a sense of optimism at the depth of sleep that the night might bring.

Then it would start, a sound, a sensation like a metal blade being dragged across a blackboard (the wipeboard generation will not understand this reference, they have missed out!), then the realization that this grotesque feeling was actually taking place inside my head, inside my brain. Then the sound changed to one of a train, as it hurtles into a station, doesn't stop and then changes pitch, as it hurtles out the other side. Next, there were the little popping explosions, like a chinese firecracker under one's shoe, "pop", then another and another...ooh, that was like a firework, exploding into a shimmering cascade of little stars...ooh, no, that one was more like cannon fire, on a dark, smoky battlefield. I realized, that out of fear, I was holding my breath and clutching the duvet cover, tight, over my legs, waiting. "This is it", I thought, "my brain is exploding, bit by bit. Am I dying? What a funny way to go!", I mused to myself. This was as bad as it got, but it did become a routine nightly experience, alongside the insomnia, the painkillers every three hours,the palpitations and breathing problems. But no actual sleep. No actual, deeply satisfying, refreshing, full-on complete re-energizing, dream-scattered sleep. In fact, no dreams of any kind. I didn't notice this at first, but, being someone who has always remembered vivid dreams and always had enjoyable visits to my own private dreamscape, the absence of them was suddenly significant. By 5.30 am, I would be so exhausted through just having had hours of deep, but constantly interrupted dozing - pain episodes and gasping for breath, convinced that I'd stopped breathing - that I would finally drop off, into somewhere between dozing and sleep; a sort of fibromyalgic induced limbo, and then come round at 9am, feeling like death; but seriously needing to pee. Urinating demanded a special technique. My 'pee' mechanisms couldnot function properly - as fibromyalgia gradually starts to shut down the various bodily functions and runs others on reduced power - it was a case of squeezing out at intervals. There was no irrepressible torrent, my pelvic muscles were on strike till further notice. It was a start, stop, start, stop approach. If I managed to completely empty my bladder, it was somewhat of an achievement and signified a better than average start to the day.

Catch 22 - Part 2

In the words of Dr No1, "We don't know what causes it." Was it the 'Royal we'," I asked myself? At least he was honest. A wave of euphoria swept over me like one of my regularly abnormal adrenaline rushes. "It has a name?" I said. "You mean I'm not going mad, I'm not imagining it?" After 6 months of blood tests and years of ill health/and frankly weird health problems, I had scored 11 out of 18 on the Tender Point Test and "Ow!" that hurt. I couldn't bare to be touched since this illness had taken hold, I felt bruised all over, right to my core. The Tender Point Test was akin to some sadistic Japanese feat of endurance involving hanging heavy weights from one's extremities, while having the soles of your feet burnt!!!

However, while I revelled in my diagnosis of Fibromyalgia and the satisfaction that I felt from being told that I was indeed NOT a hypochondriac, I didn't realize that I was unwittingly about to set in motion a series of events that would effectively cut me off from the support of Dr No1, any recognition of my illness, by anyone, and any chance of financial support from the DWP. But at this stage I was oblivious.

Dr No1 prescribed me with antidepressants, Amitriptyline to be precise. He said that it was not licensed for use in treating Fibromyalgia, but it was being used to treat the sleep and pain problems of the dis-ease, its function being to regulate the production of serotonin and norepinephrine; the neurotransmitters in the brain responsible for sleep, pain and the immune system. Ok, that sounded a promising start, but I can't say that I was particularly reassured by this approach. Treating the symptoms is one thing, but what about ascertaining the cause? Dr No1 then said that the Amitriptyline was a very small dosage and would take up to 6 weeks before it started working. I would then need a blood test to check for possible liver damage and if all was well and my symptoms were improving, then the dosage could be increased. My euphoria started to wear off. I couldn't wait 6 weeks for a proper nights sleep and no pain. I was already gobbling paracetamol and becoming immune! I suddenly had visions of reaching a peak of pain torment and ram-raiding the nearest chemist in the early hours. The Police would find me knee-deep in little boxes, scoffing hard-core painkillers. Was Dr No1 still talking? He was pointing at his computer screen. My face was visibly disappointed."This is a cop-out, he actually has no intention of investigating this any further on my behalf," I thought to myself.

Dr No1 suggested that I look at the website for the Fibromyalgia support group and said that I would be well in 3 to 6 months (I kid you not). I then asked him about my problem with anaphylactic shock brought on by swimming over the last 4 years (the last episode was just before this illness became full-blown). Dr No1 didn't see any obvious connection with my illness and when I asked him for an explanation for a possible cause he said that the best course of action would be to take an antihistamine tablet 1 hour before I went swimming. He has misunderstood me. I'm not likely to be going swimming now am I? His body language was clearly saying "subject closed." And that was it, that was all he could offer. His air was dismissive in fact. I could see that he was thinking," well, she's got a diagnosis, got some pills, i've honoured my part of the bargin." And that's what it felt like, some sleazy bargin, whereby if I took the drugs and he monitored my progress it would all look very good on his reports and I would then qualify to be on the fast track for all manner of other NHS goodies.

I made sure all my clothes were on the right way round and made my way to the pharmacist down the hall. I felt totally let-down. Perhaps my expectations had been too high? Does he just want me to take responsibility for my own recovery? Well that's no bad thing, but I will need feedback from him at some point. He has admitted that he doesn't know what causes it, so what exactly can he do? Dr No1 had just 'one' solution and not an entirely appropriate or satisfactory one at that. What about side-effects? Yes, he had said something about side-effects, dry mouth and stomach problems I think. I started to feel annoyed, angry. It was a catch 22. I could do it his way or take the highway! What exactly could a support group offer me anyway? A specialist with lots of other drugs? Or perhaps they could advise me on how to avoid impending financial ruin. All I knew, was at that moment, I wanted my life back and in my brain fog (which was bad enough without the additional burden of the sedative nature of antidepressants) I decided that I was going to search for the answers myself. I had nothing to lose and hell I might even make some fabulous discoveries. The shiny gauntlet had been clearly thrown down at my feet. I was watching the pharmacist put my pills in a paper bag and I thought, with the anger rising inside of me, "I don't take, 'DON'T KNOW' for an answer."
(photo by snapdragon6 for frou-frou photography/copyright 2008)

Catch 22 - Part 1

Why am I writing this blog? I ask myself this question countless times before I actually get started. In short, it's out of sheer frustration. The frustration at the amount of mis-information (some of it seriously irresponsible: see graded exercise. All well and good but would 'you' want to go walking when you wake up EVERY morning feeling like you have just run the London marathon? and just getting down the stairs is a feat of buttock stiffening proportions! As for swimming, I swell up all over as soon as I come into contact with the water!) that is published about Fibromyalgia, the impotency of various elements of the medical profession ( not all of them, just the ones I have come into contact with) and the unholy ignorance and lack of support demonstrated by the Department of Work & Pensions in regard to patient claims. Harsh? Yes, because Fibromyalgia is not part of 'the system' and I am continually banging my head against a brick wall! (the pain is immaterial compared to an average nights non-sleep!).

Dr No1 told me that Fibromyalgia is also known as Gulf War syndrome. If my memory serves me right, those damaged veterans had a hell of a time getting recognition for their health problems. They left one battlefield and then found themselves fighting an entirely new battle. And that is what it feels like, a battle. Fibromyalgia is a genuine ruddy large spanner in the works for thousands of previously go-getting, life-loving individuals. Fortunately, I am a fighter. The British Medical Association have officially recognized this nomansland of a dis-ease, however, there is as yet no single, definitive official line as to the cause or causes. St Barts Hospital; London, Guys Hospital; London and the Fibromyalgia/ME/CFS support groups in the UK are all involved in pioneering research to provide a cure and thank God (many gods, not just 1). But this research doesn't find it's way down to the 'sticks' and I can't afford, literally, to hang around waiting for research findings. I need to get this sorted, fast.
(photo by snapdragon6 for "frou-frou" photography/copyright 2008)

A Lesson in Pain Management - Part 2

Now that relief from this latest Fibro myalgia pain episode was within my grasp, I began to relax, however I just kept hearing the same phrase repeating over and over in my head, "We have a new Epilepsy drug that you could try." Dr No2 might as well have said "Would you like a new Epilepsy drug with that? We're doing a 2 for 1 offer at the moment, side effects included!"

How did it all get to this? I'm 42 years of age, I fell ill in November 2006, had to leave my job; in a career I loved, move in with my parents (my mother has been my carer) and then live off my savings (which have almost expired). The future is uncertain, although financial ruin is looming rather too large for my liking ( I'm not eligible for any benefits. More on that thorny subject later). To add to this, my partner of 14 years decided that my illness was an inconvenience with regard to his sudden biological urge to procreate, (perfect timing that one!) so he left me for a veritable babymaking machine ( she loved pregnancy and wasn't too fussy about the sperm end of things, having already engineered 4 children from as many fathers). My Ex then sold our home to save Babymaker's house from the bailiffs ( after all, being in love is a form of madness). I was too ill to fight it and had actually reached the point of being past caring anyway.

Don't get me wrong. I'm not in the least bit bitter towards my Ex. Babymaker is welcome to him. In hindsight; after discovering in 2004 that my partner was incapable of the most basic of nursing skills; during my 12 months of Pernicious Anaemia ( the prelude to my current condition) there was now no way that I would have allowed his sperm anywhere near 1 of my eggs!

"In sickness and in health." My Ex had said from the start that he didn't believe in marriage. When it came to the sickness part, he meant it.

(photo by snapdragon6 for "frou-frou" photography/copyright 2008)

A Lesson in Pain Management - Part 1

Welcome to my blog where I take you through what life is 'really' like living with Fibromyalgia (although I shall cease to call it by that name through the course of this blog). I am writing for the benefit of fellow members of this strange and oddly expanding club and for all those who know/or help to care for someone experiencing this dis-ease.

My intention is to write with humour whenever possible because tackling this dis-ease with a positive frame of mind is the only way to go. As I said to my family at the onset of my illness:

"I don't want sympathy. Sympathy is of no use to me, but I do need you to understand.To understand what I'm up against."

*********************

So let us begin...


"We have a new epilepsy drug that you could try. It's an effective pain killer, but ......"

Dr No2's words trailed off as i raised my eyebrows in angry frustration, all the while cradling my jaw in my hands.

"No, you don't want epilepsy drugs do you?" he said briskly.

(No I don't, I thought to myself but I will have an 'EPI' if I have to sit here any longer in excruciating pain!!!)

"NO! I JUST WANT PAINKILLERS NOW! THE STRONGEST YOU'VE GOT OR JUST GET THE VET AND PUT ME DOWN!!!!" I said as politely as possible. "I've been like this for 5 days now, I can't take it any longer."

"Right, you can have some codeine and then you need to go to the dentist, just to eliminate the possibility of an abscess or infection. Although, examining your gums there is no obvious inflammation, It's more likely to be Temporomandibular Dysfunction."

As Dr No2 launched into the definitive explanation of TMD as opposed to Trigeminal Neuralgia - bless him, very thorough - I nearly passed out from the pain. He noticed my obvious slumping movement and urgently scrawled something in 'Doctor speak' across his prescription pad and gave me leave.

(photo by snapdragon6 for "frou-frou" photography/copyright 2008.)