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)
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)
No comments:
Post a Comment