Hello, my story!

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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:

Once upon a time

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 bloke on this forum to another, let me say I truly sympathise with you! Four times I’ve gone through all the anguish of caring for loved ones as they declined into the end stages of various terminal illnesses and died. I was told years ago that as we get older we cope better with death. Like heck we do! For me each time has been worse than the last. Now I can’t really put into words my feelings that are so simply covered by the term ‘bereavement’. It might sound wimpish, but I find it all just too overwhelming.

Gluten seems to be cast as the man-in-the-black-hat at the moment. But many folks who have all sorts of health problems apparently improve when they avoid it, so there seems to be something there that needs further investigation and research. The problem is, unless a person has a positive gluten sensitivity/intolerance test (tTG-IgA test), that person won’t be considered medically as having any sort of gluten problem, even though they might be better healthwise if they don’t eat it. However, gluten-free is a very difficult regime to follow – it must take the determination of a pilgrim and the patience of a saint to follow. And then add to that dairy-free…!

Try Googling which witch doctor or voodoos-r-us.

Failing any success with that, try telling your GP that all of your problems are psychosomatic and your pains are psychogenic – he/she will almost certainly believe you and possibly offer you medications and treatments that wouldn’t otherwise be forthcoming. Not joking!
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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

Thanks for the Reply Painintheneck.
I have no problem accepting death but it was difficult as I had been in caring role for over 12 years,,, We human folk are creatures of habit,, and trying to form new habbits while dealing with the ordeal of Fibro,, when the life you knew is gone, your health is questionable to say the least it dose compound ones thoughs.
Somehow my life has always been focused around caring for others,, I think it is either in you or not.
I think the referance to accepting death as we get older is perhaps in relation to ourselves and our own mortality.

I am delighted that gluten is getting recognised as enemy no one,, I think it should be, I doubt that even rumenants can digest some of the peptides in it with their extra stomach. I think the research has been done,, unfourtunately unless research is about selling drugs it is not research.
At one stage I had a constant cough,, couldn't get a breath,, and when coughing could taste blood,,, the stomach was constantly upset and lets not attempt discribing symptoms at the bottom end. They shoved camera up and cameras down,, took samples and could see nothing (that they were intrested in)
The Dr was prepaird to throw Omeprazol and Lanzoprazol down my throat like there was no tomorrow and it did help with the pain,, but my food was comming out much as it went in,,, undigested,, the stomach is acidic to break down food. The Dr tried to tell me that these drugs were harmless,,,, Hello! I don't know what they are learning in medical school today but it seems to have little to do with health.
When I go things settled with the dietary changes and weaned myself slowly off the PPI drugs I tried to tell her but her ears were closed,,, she said that "As a profession we do not believe in food intolerances" I asked if she treated anyone with alergies,,, "Oh Yes" Then why are you using the words "Food Intolerance" they are not words that I used,, I am only telling you of how my body reacts to them and belief has not place in fact.
She didn't try to reply. I talked a friend into stoping all forms of gluten for a trial period. He is a nurse and as been suffering for the last 5 years with his stomach,, and lesions in his oesaghus. They have been doing ODG's every 6 mthjs to see if the lesions had truned cancerous yet,,, which they haden't but were getting larger.
He had an ODG a few weeks ago,,, the lesions are gone. He is working at getting off the PPI meds but you have to do it slowly,, by opening capsules and getting rid of some of the contence. He is now a commited believer and those nurses and Dr's are the most resiliant in their BELIEFs of medicine through their years on indocternation. To be honest I now see what is called medicine today more as a religion than anything else,,, I believe a very high percentage of it is more quackery than fact.

Like anything dietary change is about learning,, lets face it there is probably about 10 things that we repeatedly make for dinner,, so change is not to bad, I use to search Vegan recipys and then adapt things to remove the gluten and add in meat.

I had great success with googling Voodoo-is-us,, I found a "PROFESSOR of vodoo" who even works with evil eye,,, he's obviously the real thing as he also speaks French and just what I needed Telephone consultations,,, but I won't be rushing into that one,,,,yet!
Life and experiance has made me rather cynical,,, there is just no helping some people,,,, but it did give me a chuckle!

Ray



Painintheneck wrote:From one newby bloke on this forum to another, let me say I truly sympathise with you! Four times I’ve gone through all the anguish of caring for loved ones as they declined into the end stages of various terminal illnesses and died. I was told years ago that as we get older we cope better with death. Like heck we do! For me each time has been worse than the last. Now I can’t really put into words my feelings that are so simply covered by the term ‘bereavement’. It might sound wimpish, but I find it all just too overwhelming.

Gluten seems to be cast as the man-in-the-black-hat at the moment. But many folks who have all sorts of health problems apparently improve when they avoid it, so there seems to be something there that needs further investigation and research. The problem is, unless a person has a positive gluten sensitivity/intolerance test (tTG-IgA test), that person won’t be considered medically as having any sort of gluten problem, even though they might be better healthwise if they don’t eat it. However, gluten-free is a very difficult regime to follow – it must take the determination of a pilgrim and the patience of a saint to follow. And then add to that dairy-free…!

Try Googling which witch doctor or voodoos-r-us.

Failing any success with that, try telling your GP that all of your problems are psychosomatic and your pains are psychogenic – he/she will almost certainly believe you and possibly offer you medications and treatments that wouldn’t otherwise be forthcoming. Not joking!
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Re: Hello, my story!

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

Thanks for the Welcom Lisa.

At 20 years you are a veteran!

The hardest bit about dietary change is just doing it and not wavering,, and doing a bit of searching.
The great thing is that when you stop doing alot of the carbohydrates the cravings just sort of disapear,,, Cheese is one thing that I would like to be able to do but when you just don't even look at the dairy section anymore there is no temptation.
To be honest one of those little gluten free bags of bread would do me for about 10 days,,, as I only eat the stuff very occasionly perhaps toasted and slathered with coconut oil (a little bit of natural sea salt on it and you wouldn't miss butter) a bit of bacon rocket and tomato,,, or avacado and bacon makes a nice breakfast.
I eat alot of avacados,,, and nuts,,, and seeds,,,, Breakfast today was Avacado I then nibbled on sunflower seeds with a cup of black earl grey. I picked up a friends tea a few weeks ago and took a mouthful,,,, I can hardly discribe just how repulsive it was.

As I say any dietary change is more difficult as it is as much about learning about new things to eat as anything else,, so much of the diet today is based on wheat and dairy. I honestly look at peoples shopping baskets in disbelief of what they are full of.. Don't get me wrong,, I still eat things like potato crisps.
In all honesty I think that if anyone were to keep all gluten out of their diet for a month they would not be able to eat it again as they would see what it is doing to them when thy try to go back on it.
I also will not eat after 6pm,, so If I have not eaten by then I just omit food until the next day and just have a cup of tea. The only way I can discribe it is,,, do you remember when you were a teanager and you went out had a few drinks and a bucket of KFC or a Kebab a taxi home bed and got up for work 6 hours later,,, well eating after 6 leaves me feeling like I had one of those nights.

You probably are aware that there are three forms of stress and that they all have the same effects on the body,,, I always think that people with fibro should be very aware of this.
Mental stress seems to be the only one that people think about but there is also
Systemic stress and that would be things like dehydration or having your body try to eliminate toxins,,, break down drugs or deal with alcohol,, I also bellive that Radio signals,, EMF is included in this and we are bombarded with this,, even if we can't see it,,, our nerve system is electrical. If I do nothing else I switch the router off at night.
The last is physical stress,, and that would include things like weight lifting and the likes,, pushing your body more than it should.

I think a totaly dark bedroom is important as well,, in the hope that melatonin will be produced.

If you use LED lighting I think it is important to keep one incandessant bulb going around where you are in the evening as the eyes need the near infared to repair but you will get it form candlelight , or a real fire. I honestly wouldn't have flouresent type lamps in the house because of both the radiation and the risk of mercury in the air as they do pop. You can't get that mercury out of the body again, it is neuro toxic and it ends up in the CNS brain and spinal cord.
I think things like this are underestimated in their potential for harm,, sadly people assume that because things are sold they are safe.

I found no benefit to accupunture.
Stretching is enough for me,, it takes everything else I have just to manage about the house,, I have learnt not to push things or I get bit back so hard so It is just not worth it.

Ray.

*Lisa* wrote: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.
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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

No difficulties facing my own death - at times it seems like a welcome option.... As Nietzsche explained, thoughts of our own death can often be very comforting. My struggle lies with having seen, and seeing, loved ones going through those end stages of life. There ought to be a switch that a person can flick into the 'off' position when they've reached the end.
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Re: Hello, my story!

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

Painintheneck wrote:No difficulties facing my own death - at times it seems like a welcome option.... As Nietzsche explained, thoughts of our own death can often be very comforting. My struggle lies with having seen, and seeing, loved ones going through those end stages of life. There ought to be a switch that a person can flick into the 'off' position when they've reached the end.


I agree with you totaly,,, perhaps not entirely sure about that switch, to many may hit it accidently or in a moment of panic.
I do think death is something that we grow into and become more comfortable with.
Not a great one for TV but I watched a program on Ram Dass a few months ago,, and he was very much enjoying his decline into death,,, mind you his care was not in an institution and cost did not seem to have to enter into the matter.
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Re: Hello, my story!

Postby johnsharp » Wed Oct 31, 2018 5:48 am

Well Knackered, I am so honored to meet a guy who was so respectful and dutiful to his parents right at the end. This is very rare to see now and such persons who value the lives of his parents(even though it took a great troll on your health) and did whatever he can to comfort them.
John Sharp's essay help service page.
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