A tentative... Hello

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A tentative... Hello

Postby Painintheneck » Thu Apr 12, 2018 3:29 pm

Hello to all FM sufferers. Straightaway I would like to say I’m not sure I should be here. I’m a bloke who’s never been diagnosed with fibromyalgia and doesn’t usually do forums. That said, I’ve been told by my GPs (several of them at the same practice) that all of my symptoms could lead to a diagnosis of FM, if it weren’t for their honest and forthright professional belief that FM, along with IBS, TMJ and ME, is often merely a “label” with which to dismiss patients. Now, I’m not really sure how FM sufferers feel about this matter – there probably is no consensus of opinion. So, is their attitude helpful and sympathetic, because it means the patient – me, in this case – will be investigated further and offered various treatments? Or is it just another way for them to say that the patient – me, in this case – has no medically determinable illness and should stop wasting time and resources? Or is it simply irrelevant?

Whatever point of view you hold, I’m still looking for answers to a medical conundrum which began in 1980, when as a fit and healthy young man, I had what I believed, at first, was a bad case of ‘flu but was given a diagnosis of neurasthenia (yes, really!). I never fully recovered from whatever it was that struck me down. Despite my having numerous investigations, tests and treatments over the years, I’ve become increasingly debilitated by bizarre aches, pains and apparently inexplicable symptoms…. That’s the gist of my story. Perhaps it will resonate with someone.

PS: My name isn’t really Painintheneck, but I have one and therefore I am one!
Painintheneck
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Re: A tentative... Hello

Postby perseus » Thu Apr 12, 2018 7:38 pm

Welcome Painintheneck (I literally have one BTW).

Yes your experience very much resonates with me. My problems started after undertaking a self imposed tough exercise regime back in the late 80s. Then I began to suffer symptoms typical of a cold/flu infection which wouldn't clear up. After various tests and antibiotics eliminated on ongoing virus and straightforward metabolic problems, the easiest diagnosis for the medical profession was a psychological one. One that couldn't easily be refuted and I was stuck with. It transferred the responsibility from them onto me. It's only then when my real nightmare began and the frustration made the diagnosis self fulfilling. It was a bit usual because I didn't suffer from severe fatigue, only a feeling of illness and inflammation like a virus.

After being kicked out of my practice for insisting on more specialists, I saw a private GP, and he send me to a NHS hospital GP who he thought was good at diagnosing these sort of problems. He instantly saw that my neck could be causing the symptoms and suggested stopping exercise rather than continuing, as was being recommended by everyone else. It did clear up over the period of a year after that However, it returned in FM form after being in a car accident and suffering neck compression.

I think the Medical profession are a bit more careful nowadays, but at the time it was easy to get trapped into repeated diagnosis of depression or psychosis. Of course a fraction of patients diagnosed with ME and FM might really have serious psychological issues and might respond to 'graded' exercise, thereby giving the psychiatry theorists the evidence they seek. This leaves the rest of us with an additional frustration on top of what we have to put up with.

If it is FM the treatment can be similar to depression (antidepressants) since they act on the central nervous system to block pain, although with FM the most effective antidepressants are more specialist than the common 'happy pills'. I only mention this just in case they recommend these drugs, they aren't necessary fobbing you of as a manic depressive.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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Thank you, Perseus

Postby Painintheneck » Fri Apr 13, 2018 4:55 pm

Thank you, Perseus, for your reply to my message-in-a-bottle. I knew there must be others out there in a similar boat to mine. Over the past thirty-eight years of being worn away by whatever it is, I have seen a dozen GPs and perhaps even more Specialists of one sort or another, along with their associated assistant staff, diagnostic technicians and behind-the-scenes people – a considerable amount of human resources. Generally speaking, I have been treated with respect and professionalism. And yet I now feel I have never come even close to finding anything resembling a definitive diagnosis.

You’re quite right about the old days (crikey, that sounds as though I’m about ninety!). Back in 1980, I was given a week’s course of oxytetracycline antibiotic, a repeat prescription for diazepam and a month off work – nowadays, not on your nellie! I spent the following four week sleeping sixteen hours a day and living on tiny meals of beef broth, boiled eggs, malt loaf and Lucozade. My hair came out in handfuls every time I combed it and I developed tinnitus. Towards the end of this first abysmal period, when there was little if any improvement in my condition, another GP gave an alternative diagnosis of glandular fever and told me to take more sick leave. I declined, saying I would rather go back to work and do whatever I could (I actually really enjoyed my job back then and my employer was quite reasonable with me). He shrugged and told me to see him again if I had further ‘problems’…. It took nine months for me to recover sufficiently to be able to do any sort of energetic activity – motorcycling, fell-walking, the everyday things that young blokes do in their twenties. But I never felt right. I had become awkward and clumsy, and every bit of exertion provoked aches and pains that would not go away. I saw my GP again and tried to explain that, despite my best intentions, I wasn’t getting any better. Without further discussion, he prescribed Sinequan, which I found out years later was doxepin hydrochloride – a tricyclic antidepressant. It turned my world blue (literally; everything looked slightly blue-tinged), then knocked me out. And it did absolutely nothing to alleviate my burgeoning health ‘problems’. I think that’s where my frustrations began.

Anyway, after years of further ‘problems’ and their investigation, here I am bang up-to-date, being prescribed pregabalin, primarily for neuropathic pain, but also GAD and transient agoraphobia. I’ve had to give up on SSRIs and SNRIs because of the seriously adverse effects they provoke. Pregabalin is controversial in all respects. But at the moment it is the only medication which, for me, has benefits that marginally outweigh its notorious dark side. I know this cannot be a long-term solution – there is often pain breakthrough and it feels like I’m living in a state of vague dissociation. So I’ll keep searching for that elusive answer.

I apologise for the length of this tract. It’s very easy to start rambling when reviewing one’s past.
Painintheneck
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Location: England

Re: A tentative... Hello

Postby perseus » Fri Apr 13, 2018 6:00 pm

I found more side effects with Pregabalin than Cymbalta which I'm still on. Be careful when coming off Pregabalin, all GPs aren't familiar with withdrawal side effects.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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