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The UKFibromyalgia Forums • View topic - Hi..



Hi..

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

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Hi..

Postby selene16 » Fri Nov 04, 2011 12:59 am

Hey.

I'm not quite sure where to start at the moment - I had an appointment with the Rhemy yesterday as I've been suffering from pain a lot and been having trouble walking etc.. and my GP no longer through it was just the original PVF I had been diagnosed with and he has said he believed it is most probably Fibromyalgia - he's sent off bloods to count out something else I believe though.

At the moment I'm feeling a bit lost - I don't know what to do first now. I know I need to redo my DLA claim (I already receive it for mental health problems and last one had the PVF listed so now I assume that needs changing?) I'm living in a first floor flat with outdoor steps that are very slippy so I don't know if I should put in an application to move, I was thinking I would have to but I guess I always believed I would get some pill that would make me better and it would all go away.

Pain's awful today I tried doing the washing up and I ended up screaming and crying in pain - I feel out of control at the moment. I'm not sure where to go or what to do. :cup1:

I'm sorry this is a bit of a ramble. I just don't know what to do.
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Re: Hi..

Postby loubie » Fri Nov 04, 2011 1:33 am

hi selene :wave:
welcome to the forum
what did the rhumie say ?
sorry what is PVF ? it is possible to have all sorts of things along side FM so i would wait a little longer until
you do DLA but you could put your transfer in for a better place to live, ask your gp to support it for you. :wave:
loubie xx

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Re: Hi..

Postby selene16 » Fri Nov 04, 2011 1:47 am

Hi Loubie :) :wave:

He poked and prodded and looked at my feet and said I had flat feet so I have to go and see someone for that and that I have general tremor but it's not linked to anything it's just their. Then he basically sat me down and said he was almost certain that he knew what was wrong with me and it was Fibromyalgia but he wanted to send off some blood tests to just recheck a couple of things as I had a slight raised level in one but he didn't think that was anything out of the ordinary and as I couldn't tell him when my last thyroid check was he wanted to check that as well.

PVF is post viral fatigue - I think in essence it's the same as CFS but they can link it back to what set it off which for me was swine flu, he also thinks the Fibromyalgia was most probably set off by the Swine Flu as well.

I'm going to wait a week or two to see my GP I think - give it time for a letter to reach him from the Rhemy, he's a lovely doctor so I know he will support an application, just a bit worried of where we might end up have lovely neighbours at the moment who look out for me, and my other half doesn't really want to move - I think he always thought we would be here until we had more of a choice in where we moved to.

Again sorry for rambling and talking a bit of rubbish heads everywhere and no where at the moment lol.
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Re: Hi..

Postby loubie » Fri Nov 04, 2011 2:11 am

my head is like that all the time :crazy: so don't worry your in the right place :lol:

is there any way that the steps could be turned in to a ramp or a very soft slope
have you had OT out to assess your living space to see if they can make the changes for you?

cfs and fm are very very similar and a lot of peeps on here are dx with both.

its great you have a nice gp it makes such a difference to have one that understands fm
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Re: Hi..

Postby selene16 » Fri Nov 04, 2011 2:21 am

Glad it's not just me.

I'm not sure if they could do anything with the stairs they look something like this:

Image

but shall defiantly ask :) I've not really had or done anything since seeing the Rehmy - I only saw them on Wednesday, and really just left after the diagnosis and blood tests, he didn't really say anything about what I should do next - or even if I would see him again, just that he would send me a letter if anything was wrong with my bloods, and to exercise and lose weight and that would make everything better? So feel a bit like a fish out of water lol.
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Re: Hi..

Postby loubie » Fri Nov 04, 2011 2:40 am

yes sounds like a typical rhumie visit :roll:
ask your gp about having an OT visit to see if anything can be done for you
still worth a try, maybe a lift of some sort :dunno:

:fingerscrossed: for you :hugs:

have a good look round the forum and read as much as you can, you may find things very helpful
lots of great tips to try and help with the pain.
and if you want to know anything else we will help as best we can :blowkiss:
loubie xx

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Re: Hi..

Postby denys » Fri Nov 04, 2011 4:26 am

Hi Selene and :welcome: to the forum :wave: :wave: :wave: :wave: :wave: :wave: :wave:
Denys

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Re: Hi..

Postby shazq » Fri Nov 04, 2011 2:46 pm

:welcome: to the forum Selene :wave:
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Re: Hi..

Postby FluppyPuffy » Fri Nov 04, 2011 4:02 pm

:wave: :wave: selene and :welcome:

Sorry you've been told you have FM, but on the slightly brighter side, it means you've joined us which, if it isn't a good thing, will at least send you completely :crazy: :crazy: :crazy: :crazy: :crazy:

As loubie has already said, there is a lot of advice and info on here, hopefully there will be something helpful to you :fingerscrossed: :fingerscrossed:

If I was in your situation, I would hang on a little while where the DLA is concerned. It will give you a bot of time for everything from your GP and rheumy to filter thru, hopefully get you started on a treatment program and give you a decent idea of how FM is impacting on your life and other illness.

With you sounding so happy about where you're living, look into every possible option available to you, and make sure they have all been ruled out before you start thinking about putting in for a move. With some help, you may well be able to stay where you are :fingerscrossed: :fingerscrossed: :fingerscrossed:

anything you want to know, just ask and we'll try to help you with it :clap: :clap: :clap:


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Re: Hi..

Postby selene16 » Sat Nov 05, 2011 12:03 am

Thank you all so much for your lovely replies :)

I'm feeling more positive today - which is good, managed to clean out hamster 2 so can go to bed happily knowing he is all clean at least till morning lol.

Have made an appointment to see my GP in a few weeks time just to catch up with him, need to talk to him about my other meds anyway so if nothing else is through at least I can deal with that - one thing at I time I guess :)

:fingerscrossed:
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