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The UKFibromyalgia Forums • View topic - Hello, my story!



Hello, my story!

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Hello, my story!

Postby Knackered » Wed Jun 13, 2018 11:20 pm

Hello everybody,,, perhaps as an introduction I should tell you a bit about myself.
Im one of those rare males with fibro.
I've had this "DISEASE" for about 15 or 16 years now but it was only diagnosed about 12 years ago.

My Story,, and as all good storys begin:



My mum developed Alzhimers I gave up my average 50 to 60 hr working week and went to part time work as things were not going well in my parents house.
I finaly gave in and moved back home and gave up work and any notion of normality as It rapidly became clear that I was not going to be able to manage the bit of PT work unless I brought mum with me to work,,,,,, Computer Says NO.
Mum was unable to recognise Dad at this stage but strangly she always knew who I was. Dad was profoundly deaf couldn't understand what she was saying but it was usualy something along the lines of, she did not want that man in her house,,,,so it was irrelevant,,,,, it was also alot of fun. NOT
Most of the time Dad had to hide from her at the top of the house to keep the peace,, it was an impossible situation and I was stuck in the middle translating and moderating and the situation rapidly assisted me in becoming a gibbering idiot,,, well at least, when I wasn't too busy tearing my hair out to do the gibbering bit,,, I have never been one of those people who can do two things at once.

Sleeping during this period was a strange event,, it consisted of lying with one eye open as mum was prone to making off in the we small hours of the morning to look for her mother,,, there was always the underlying worry she would have gone down stairs and set the house on fire trying to do something silly with the cooker.
It was during one of these new one eyed sleep experiances that Fibro not so gently introduced it's self into my life,,,, like a flash of lightening I was quietly howling in agony trying not to wake anyone up. Right down my left side the pain was radiating from my neck,,, I thought it was a cervical disk problem and but I really didn't have the luxury of sitting in one of those A&E departments to have someone look at my neck. Osteopath and Chiropractor with mum at my side was the answer and I don't regret it at all,,, I didn't go near the GP for a very long time,, I didn't have time to waste on running to Dr's and hospitals,,, I suppose my head was well gone by that stage,, I was just a functioning bit of meat that held things together and there was nobody to relieve me for a few hours!

When Mum died I had it in my mind that somehow my life would just sort of start to come back into shape and the pain would disolve back to where ever it came form once all the stress was gone. Sadly Fibro had other plans and leaving me alone was not one of them and by this time I really was in pretty bad shape.

Dad was not in great shape by this stage either and had developed breathing difficulties,,, which turned out to be small cell lung cancer it was diagnosed a few weeks after mum died. He couldn't understand what the Dr had said,,,, I and I was left with the very difficult job of gently telling him he had a "we touch of cancer" without using that Cancer word,,,,,, and a prognosis of 3-6 months with agressive treatment,,, I didn't tell him the prognosis bit,,, for once his deafness was a plus and saved him from the Dr's heartless words.
Much to the surprise of the Dr's lived for over four years without their agressive treatment but I have no doubt he would have obliged the Dr and died within the expected time frame had he accepted the agressive treatment,, to be honest we didn't bother the Dr's very much until a few days before he died.

There is something very humbling having your 82 year old father who can't get a breath trying to help you into bed or going to get groceries,, cleaning or making me food but that was the way things were much of the time by this stage, and it tore the heart out of me not being able to manage things, still dose to a degree I suppose but it was something I was in no position to change.
Perhaps my health situation was what kept him going for so long who knows, he always felt bad that he could not be more involved in helping with mum and that it was all left on me.

When Dad died I came tumbeling down ,,, ended up seeing a CPN who was as intrested in me as he was in the dust on his shoe.

I resent this misterious ilness called FI-BRO-MY-ALG-IA so much. I have tried to see Fibromyalgia in more friendly terms than i currently do but eventualy gave that notion up.
It is a crual ilness that Dr's that seem to have little intress in it and understand less,, unless they are private and while I may have been able to afford their fees at one time it is no longer a possibility. I have learnt that Dr's generaly have the greatest difficulty getting that word out of their mouths. FI-BRO-MY-ALG-IA.

I have tried many things over the years and the best thing I did to date was to stop eating Wheat Barley Oats Rye,,,, All Dairy,, apart from the occasional little bit of egg,,, I also stopped Soy,,, I think I might probably be dead at this stage If I hadn't changed my diet so drasticly,,, I would recomend it to everyone as a first step to try ,,, if only to do it for one month,, I really doubt you will ever be able to eat anything containing gluten again,,, no one can digest the stuff.
I have tried just about everything at this stage,,, apart from a Witchdoctor,,, if anyone can recomend a good one I'll give it a go especialy if they can do a telephone consultation !

You now know a we bit about me and how I got here.

Night Night,,, Knackered
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Re: Hello, my story!

Postby Painintheneck » Thu Jun 14, 2018 4:06 pm

From one newby to another, let me say I truly sympathise with you!

Reviewed and revised by the author.
Last edited by Painintheneck on Mon May 27, 2019 3:25 pm, edited 1 time in total.
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Re: Hello, my story!

Postby *Lisa* » Fri Jun 15, 2018 9:06 am

Hi and welcome to the forum.

Like you I have tried near enough everything possible you can. I recently visited the pain clinic where I practically ended up having a long conversation about all of my 20 years worth of self management to the point where the consultant was fascinated and very interested to what I was saying and listened with great interest even questioning me on things!... needless to say I was told he couldn’t help as I had exhausted all areas myself! Apart from looking into dieting and eating healthy.

I knew this was one I had to tackle although exhausted from other illnesses also on top but then decided I needed that kick up the ass and try. It’s bloody hard as you know to keep a strict healthy regime when all you want to do is give in, give up...

I’m not long into my healthy eating and OMG I am struggling! But managing to stick to it although it feels like a huge task to take on and more so keeping the motivation! So easy to give up and reach for those comforting foods when your mental strength is poor.

Anyways I must say that although it’s a daily battle amongst the illnesses I am keeping to it and feeling much better. The fatigue has certainly improved. Can’t say much on the pain levels tho but it’s a start.

I’m not sure what you have tried or what you know but I find a combination of meds, light exercise, healthy diet and therapy can help symptoms. Therapy in the way of things like physio, acupuncture, massage etc... or even CBT.
As a Public Moderator & Admin 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...Lisa
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Re: Hello, my story!

Postby Knackered » Fri Jun 15, 2018 7:48 pm

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Re: Hello, my story!

Postby Knackered » Fri Jun 15, 2018 8:53 pm

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Re: Hello, my story!

Postby *Lisa* » Fri Jun 15, 2018 10:12 pm

I totally agree with what you say, the electrics and the other commen triggers as well as all sorts of things they add into foods to make it look, taste and smell nice and last longer etc... then as you say the gluten.
As a Public Moderator & Admin 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...Lisa
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Re: Hello, my story!

Postby Painintheneck » Sat Jun 16, 2018 9:57 am

Reviewed and removed by the author.
Last edited by Painintheneck on Mon May 27, 2019 3:26 pm, edited 1 time in total.
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Re: Hello, my story!

Postby Knackered » Sun Jun 17, 2018 6:43 pm

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