Fibromyalgia

somebody_else

Careful_with_that_Axe wrote: »

Also, now I've cooked the potatoes, I've gone off the thought of all food. So annoying when that happens and you're aware you need nutrition.

Doncha just hate it when that happens? Put all that effort into cooking a meal and just before it's ready you realise that you're too tired to eat it.

Thank Sod for cheese on toast, is all I can say.

Unity

peachespeaches wrote: »

Hi, I have just discovered this thread. I was diagnosed with fibro about 4 years ago, but its likely I have had it longer. I also gave up teaching after a disc injury 6 years ago. I get IB, but despite having had the CAB fill out my forms for DLA, and asking them to look at it again, I only get lower rate care.

I was told recently by CAB that I could have a go at getting the mobility component as I rely heavily on a car, but I risked losing my care component if everything was assessed again. I asked my current GP if she would support me for DLA and she said well, you can try, but I doubt if you will get it. I asked her if I could see a specialist about my fibro and she said that there wasnt anyone who really liked seeing people for fibro and I might as well stick with them. She is normally very sympathetic so this surprised me.

I know the DLA thing goes on how far you can walk. Is it 50 metres or something? I can make myself walk that far, with some discomfort, but it is the afterwards that I am incapacitated for having walked somewhere, and have a lot of pain, have to lie down etc.

Can anyone suggest someone to help with a further DLA claim, whether this be a website or an organisation.

Hi and welcome Peaches, I don't know if you've seen this thread - you probably have, but just in case: http://forums.moneysavingexpert.com/showthread.html?t=1320071

I got my DLA back in 1998 and at that point 20 meters was the cut-off for the distance you could walk. I had to go to a tribunal and my Welfare Rights advisor pointed out that the visiting DSS GP had stated I could walk 100 meters over any terrain, when he had only asked me to walk across my living room floor and had verbally noted I had difficulty. The tribunal chairman instructed the panel to disregard his statement. I have spinal disabilities and an ankle disability which means I am in pain before I start to walk so I was told to write:

"I am unable to walk without pain, the pain starts as soon as I begin to walk, but at around 15 meters it becomes unbearable and I have to stop and rest."

I hope this might help.

somebody_else

bigzippy wrote: »

You've all been quiet today. Everyone alright or are your brain's/fingers beginning to freeze? I thought I'd have loads to catch up on!

Ah, well, you see alternate Thursdays my house fairy comes, so I put my laptop and all the cables away so it doesn't get in her way. So I'm off line for about 3 hours then.

And I've been putting the finishing touches to my DLA forms, so that's kept me away from the 'net as well.

And, I've just remembered that I'm having a new carpet fitted tomorrow, so I've just had to shift all the clutter off the floor in the hallway, and now I'm knackered and everything hurts like, like, like something really painful [I'm not sure how rood we're allowed to be here, and hell just doesn't do it justice].

somebody_else

Unity wrote: »

I had to go to a tribunal and my Welfare Rights advisor pointed out that the visiting DSS GP had stated I could walk 100 meters over any terrain, when he had only asked me to walk across my living room floor and had verbally noted I had difficulty. The tribunal chairman instructed the panel to disregard his statement.

One has to wonder if this is common practice or if we ended up with the same doctor. When the doctor who came to see me wrote her report she stated that I could walk in excess of 100 yrds. When I appealed I pointed out that she didn't see me walk that distance the whole time she was with me, so how could she come to the conclusion she did.

Unity

I haven't been around much due to increased pain/spasms and twitching since the MRI.

It might be psychosomatic or as a result of unconsciously tensing up because I hate confined spaces (I used to have to look away on Star Trek when they were crawling through ventilation shafts ). But I've been in agony since the event.

I just wondered if it is possible that MRI's can affect FMS/CFS? I know vaguely that it works by turning all your hydrogen particles into little magnets that show up on the scanner, so I wonder if this is a good idea?

I am fairly certain that it affected the Durogesic patches because I should'nt have needed to have them changed until tonight - but last night I could barely manage to get on the stair-lift to get to bed and was having what I can only describe as bad withdrawal symptoms as I get these if I forget to have the patches changed when I should. DH changed them and after 30mg of Baclofen I managed to fall asleep for a couple of hours.

Anyway the results should be with the consultant by next Monday - but when I will get them is quite another matter. I suppose that if the nerve compression is bad enough they will be in touch sooner rather than later as I will need an op - but I'd rather not be in over the festive period if I can possibly avoid it .

Oh yes - forgot to say that I awoke to a winter wonderland this morning - about five inches of snow :eek:. Then someone ran into DH at the traffic lights:eek:. Thankfully no harm done to either hubby or car - due to a very slow action shunt. Kind man that he is, he just told the other bloke to forget about it. When he got back, because we are on a slope the car started to slip back down the drive, despite the hand brake and a full set of brand new tyres fitted last Thursday. He managed to stop it by standing behind it and physically pushing against it - but just shows how icy it can get up here.

Worst news of all of course Roy Keane has left us - now that's tragic. He might have been having rotten luck, but at least he was the sexiest manager in the Premier League!

Love,
Unity
X

somebody_else

Unity wrote: »

I haven't been around much due to increased pain/spasms and twitching since the MRI.

It might be psychosomatic or as a result of unconsciously tensing up because I hate confined spaces (I used to have to look away on Star Trek when they were crawling through ventilation shafts ). But I've been in agony since the event.

I just wondered if it is possible that MRI's can affect FMS/CFS? I know vaguely that it works by turning all your hydrogen particles into little magnets that show up on the scanner, so I wonder if this is a good idea

Bearing in mind that the MRI scanner is basically 1 humungous magnet, I don't suppose it would do someone in our position a whole heap of good, even if for most people it has no noticeable effect.

It could be because you had to lie on your back for 1/2 - 3/4 hour - if you've already got a dodgy back that's not going to improve things, either.

If it helps you feel any better, the last time I had an MRI, I felt incredibly dizzy and unwell when I got up afterwards.

Unity

somebody_else wrote: »

Bearing in mind that the MRI scanner is basically 1 humungous magnet, I don't suppose it would do someone in our position a whole heap of good, even if for most people it has no noticeable effect.

It could be because you had to lie on your back for 1/2 - 3/4 hour - if you've already got a dodgy back that's not going to improve things, either.

If it helps you feel any better, the last time I had an MRI, I felt incredibly dizzy and unwell when I got up afterwards.

Thanks S/E, it does help - not to hear that you felt unwell of course - but just to know I'm not going completely mad! :rotfl:

somebody_else

Unity wrote: »

Thanks S/E, it does help - not to hear that you felt unwell of course - but just to know I'm not going completely mad! :rotfl:

Yeah, but, how do you know that I'm not totally doolally?:D

bigzippy

somebody_else wrote: »

Ah, well, you see alternate Thursdays my house fairy comes, so I put my laptop and all the cables away so it doesn't get in her way. So I'm off line for about 3 hours then.

I want a house fairy.

Humph.

(How do you survive for 3 whole hours??!)

Somebody_else wrote:

Yeah, but, how do you know that I'm not totally doolally?:D

Dammit, S/e, you beat me to the punchline!


And can I just say, (well I'm going to regardless! ) what on earth is going on with us lot and our cars at the moment?!:rotfl:

purplecatlover

morning,

hope you have all had a good night.

at least its not so cold this morning.