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The UKFibromyalgia Forums • View topic - You tell me..



You tell me..

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

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You tell me..

Postby planetmaker » Fri Jun 24, 2011 12:57 pm

Hi, Im new here and rather than post in the introduce section and reply to 20 threads, I hope you don't mind I do everything with this thread! Sorry if its long winded but I would like to hear everyones thoughts..

Over approx 10 years I have suffered with chronic stiffness/aching all over my body particularly my legs. Over time this has got massivly worse and in the last 2 years its been almost unbearable I have been to the doctors about individual aches such as lower back, shoulders, achilles and calves. I have been diagnosed with sleep apnoea and use CPAP but I am still tired ALL the time. My legs feel like they are going through a rock crusher when I wake and after I have sat down for 10 mins. (In my job I sit down all day)

Having been brought up with a "just get on with it" mentality, I now feel like I am ready to admit to myself that I cannot go on like this.
My doctor suggested I might have fybromyalgia and I am in agreement because I suffer from all the classic symptoms. I am booked into see a rheumatologist next week so hopefully I will get a clinical diagnosis.

My wife has problems with her knees in that the are suseptible to recurring dislocations. She has had surgery quite a few time but she is now has massive problems with arthritis in her knees. She is only 33 and usually cannot sleep at all because of the pain which is constant. She is practically housebound because of it. This is one of the reasons why I have just got on with my syptoms as I have had to sort out our 2 primary school age kids take them to school etc race to work, get stressed, erac back help the wife, kids etc even though I have been in constant agony.

My memory is shocking, so bad it upsets my wife and reduces her to tears because she thinks I don't listen to her.
I can't concentrate on anything other than what I am doing right now, you know what is in front of me.

My work, I hold my hands up and say that my performance has really dropped in the last 4 years but no one has said anything about it.

However work have been suspended me because my flexi is not accurate and they think I have been falcifying time sheets. I told them(and they know about the sleep apnoea) my memory problems and they just say that I can jot down my time in 1 second but I saythat I am mithered by support staff the moment I walk i (I work in IT), have calls and emails to answer etc and complete the timesheet when I remember to and sometimes I get confused when I leave/arrive thus where a discrepancy is.

Despite my GP writing a letter to explain that sleep apnoea, possible fybromyalgia, anti epileptic meds, stress (my mother had a severe stroke in april) my wife and kids to care for they are not having any of it and I think they will sack me. This I will appeal about thats why I need a diagnosis for fybrmyalgia and will be getting letters from the sleep apnoea and epilepsy consulants I see because to me it accounts for why they are not accurate.

It will probably lead to me going on benefits, a debt management plan (btw my wife cannot work) and a mortgage rescue plan.

You might think this is really bad but to me now it is a huge relief to be able to say (if only to myself) that this is why I am like this.

My nice house, good job etc might have gone up in flames but I'm 38 now and I finally have learnt that life should be about quality, sharing, and caring about others.

I plan to be my wife's carer, for as bad as I am she needs more support than me. Despite all this I remain fairly upbeat.

I have been prescribed Naproxen (?) and co-codamol though neither help.

Sorry for the brain dump.

If anyone could provide an guidance in any of the areas I have discussed I wiould be very gratefull. :twodrinking1:
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Re: You tell me..

Postby snoozybunny » Fri Jun 24, 2011 1:50 pm

Hi Planetmaker,
Poor you what a mess !! But what I also want to say is WELL DONE YOU for keeping so upbeat and everything running at home. I know you are awaiting diagnosis but reading through your post I think I can say welcome to the world of Fibro. I'm afraid it sucks big time but your positive attitude will most certainly be your biggest help.

I've been diagnosed with ME for eight years and with Fibromyalgia since the begining of the year. My life bears no resemblence to the one I had before either of these things and the most difficult thing I have found is accepting that I can't change what has happened and finding contentment within my new circumstances ( still a long way to go with that one !!! ).

Accepting that you can't continue the way you have been is a biggy. You have got to try and be kind to yourself which is difficult I know when you've got a young family and other people depending on you - I'm a single mum and my mum also had a sroke a couple of years ago so I do empathise with you there - but if you don't take a step back it make you worse in the long run then you won't be able to help anyone ! Drug treatment is obviously different from person to person but there will be much more efficent pain relief available which youe GP should be able to sort. It can take a while to find what works for you but you don't need to be in quite so much pain. Other than drugs I find heatpads absolutely indispensible but, as I said to begin with, your positive outlook will be your greatest help. Good Luck ! :D
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Re: You tell me..

Postby FluppyPuffy » Fri Jun 24, 2011 5:37 pm



If your dog doesn't like someone, then you probably shouldn't either
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Re: You tell me..

Postby planetmaker » Fri Jun 24, 2011 6:15 pm

Last edited by FluppyPuffy on Fri Jun 24, 2011 8:53 pm, edited 1 time in total.
Reason: Removed duplicated quoted post
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Re: You tell me..

Postby planetmaker » Fri Jun 24, 2011 6:19 pm

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Re: You tell me..

Postby FluppyPuffy » Fri Jun 24, 2011 7:47 pm

Don't worry, you'll soon see what we're like on here................................football, PAH :tongueout: :tongueout: :tongueout: There's only one sport to follow :f1-car: :f1-car: (and yes, I am as pink and fluffy as my screen name and avatar might suggest, I just like the smell of high octane fuel :clap: :clap: :clap: )

We do have a lot of understanding on here, as we've all experienced our versions of the things you're going thru. For ways to manage and cope with things, again we've all found the little things that help us which we could tell you about, but they may not be relevant to you. Maybe looking thru some of the posts could be somewhere to start and asking about things that you feel are important for you to deal with could be an idea. Same with anything else you want to know about as you usually don't have to wait too long for someone to reply, and if we don't have an answer, we often break out the [chocolate] [chocolate] :cake: :cake: :wine: :wine: or maybe you'd prefer :twodrinking1: :twodrinking1:

And yes I have been on some of the :f1-car: forums, which have the typical petrolhead type names, even then I managed the cute and fluffyness as Jenson Bearton with a cuddly avatar :f1-car: :f1-car:

Be afraid, be beary afraid :crazy: :crazy: :crazy: :yikes: :yikes: :yikes: :tongueout: :tongueout: :tongueout:


If your dog doesn't like someone, then you probably shouldn't either
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Re: You tell me..

Postby planetmaker » Fri Jun 24, 2011 8:17 pm

haha thanks :lol:

Not had a beer for 4 years though, dehydration & tiredness can trigger my seizures !! lol oh well :facepalm:

but I'll have a nice long ice cool Vimto :clap:
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Re: You tell me..

Postby FluppyPuffy » Fri Jun 24, 2011 8:55 pm

Vimto, no problem :!: :!: :!: :clap: :clap: :clap: All :wine: :twodrinking1: :beer: :twodrinking2: [chocolate] [chocolate] :cake: :cake: are guilt free on here and don't cause you any health problems or hangovers :wave: :wave: :wave:


If your dog doesn't like someone, then you probably shouldn't either
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Re: You tell me..

Postby loubie » Fri Jun 24, 2011 11:40 pm

hi :wave:

welcome to the mad house :crazy: :lol: :lol:
:fingerscrossed: for your appointment :fingerscrossed:
hope things start to calm down for you soon :hugs:
loubie xx

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no more valid than those of other members and not necessarily those of
UKFibromyalgia.
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Re: You tell me..

Postby budda » Sat Jun 25, 2011 1:00 am

:welcome: to the forum, so glad you have come to join us in the :crazy: house :tongueout:
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Re: You tell me..

Postby FluppyPuffy » Sat Jun 25, 2011 10:27 am

Managed to find my "making a bit of sense" head so we have to make the most of what it comes up with :facepalm: :facepalm:

For your appt with the rheumy, write down all your symptoms, areas that are affected pain wise, how it generally makes you feel etc etc and any questions that have. Doing this will mean you're less likely to forget things and will help with giving a clearer, overall idea of how you are to the rheumy. And if it's possible, get someone to come with you to the appt. Not only is having someone with you good for moral support, they may think of things that you had forgotten or hadn't considered, and having an extra pair of ears with you can help with remembering what has been said during the appt.

Work wise, have a look at this linky as it explains about the Disability Employment Advisor. It might be worth you contacting the one at your local Jobcentre Plus to see if they can help with your work situation :fingerscrossed: :fingerscrossed:


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Re: You tell me..

Postby planetmaker » Sun Jun 26, 2011 1:14 am

Thanks again! I have a pretty extensive list already of everything that I feel affects me written down (even the fact that I have had a new chair at work, been to physio, wear insoles, etc etc and still no change) like you said so I dont forget !
I sometimes think that my memory and concentration issues are a bigger problem than my pain :(

Ta for the link re work too
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Re: You tell me..

Postby FluppyPuffy » Sun Jun 26, 2011 9:36 am

With how individually people are affected by symptoms, it is possible for the memory side of things to be your biggest problem. For me it tends to be the mental health side of things wrestling for prominence, altho fatigue/tiredness is making itself strongly felt at the moment :shock: :shock: :shock:


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Re: You tell me..

Postby shazq » Sun Jun 26, 2011 12:22 pm

:welcome: to the forum. :wave:
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Re: You tell me..

Postby planetmaker » Wed Jun 29, 2011 3:57 pm

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