Fibromyalgia

Unity

Hi Everyone,

Firstly thanks for all the birthday wishes - i am now officially going backwards like Merlin .

Well I survived the MRI despite my appointment being much later than expected. They'd had a fire alarm earlier in the day and it had left them with a huge back-log. I pity the poor sod who was stuck in the machine when that happened:eek:. I kept my eyes shut the whole time and imagined I was lying on my back in a big field of wild-flowers, with the sun streaming down - I have a very vivid imagination .

The journey home was the worst bit, a very bad snow storm:eek:. As usual the gritters weren't out until after the worst of it :rolleyes:.

Sharon, I hope you feel better soon - touch wood I've not had cystitis in a lot of years but I remember it well - like peeing broken glass :eek:.

Ah yes Raeh - it was you that was the Hamster fan - I have not seen anything quite as cute in such a small bundle - ever!

CWTA - Please can we share Spike? - I've been a fan since he first appeared on Buffy, I thought he stole the show and was amazed to find out he was American - although there are a couple of dead giveaways that I can't for the life of me remember :rolleyes:.

Roxsi - My accent is from North East England, although I'm likely to get a tad touchy if someone calls me a 'Geordie' :rolleyes: - not the same thing at all. DD1 used to live in Edinburgh, but she's now in Glasgow which she reckons is considerably warmer.

Good night all - I'm shattered yet again and aching everywhere but isn't everyone .

Careful_with_that_Axe

Unity, of course we can share Spike. He is just sex on a stick isn't he. :rolleyes:
Good that the MRI went OK. For me, it's the waiting for things that's worse than the actual reality of them. For anyone who's claustophobic, it must be an absolute nightmare.
I ended up taking Ami last night as my head was pounding dreadfully and nothing else was touching it. I thnk I slep a little too deeply as have woken up with awful back/side pain on left hand side. Had a few things I had hoped to do today, but never mind. And still have headache.
BZ I have always aligned CBGT with NLP. To eventually train the brain pathways to follow a different route to allow you to react differently to certain stimuli. It certainly doesn't sound as though you are benefitting from your appointments and are merely feeling the tiredness from the getting there and back. I don't think anyone would argue with you saying that you've tried it and it just isn't working for you. You've given it a good go.
Raeh Hope the head is better today. Wouldn't it be wonderful if wind blew away the fibrofog the same way it blows away real fog :eek:

Sorry if I've missed anyone. Not quite compos mentis, so, hope you're all OK and catch you later.

somebody_else

bigzippy wrote: »

By no means am I advocating CBT, so don't get me wrong, but I've not been told anything - yet - that would suggest the "all in my mind" or "ignore it and it'll go away" was the route they're going down. Having said that, I find it somewhat intriguing that before going for CBT (as the only recommended treatment) I could find no information as to exactly how CBT is supposed to help and having been for a good 6 sessions I'm still none the wiser! Surely there's something wrong there. Plus, my impression of CBT was that it was to basically give people coping mechanisms for specific things (like phobias for eg.) - and therefore don't get how it's supposed to help people with long term chronic conditions like ME.

The thing is, ME, CFS, Fibro, etc were (and in some places still are) seen as psychosomatic problems - ie, you're not physically ill, you're actually mentally ill. (Now I don't have a problem with being mentally ill, if I am mentally ill.) So Cognitive Behavioural Therapy became the 'treatment' of choice for a lot of doctors, for patients who had been diagnosed with these conditions. And it's sort of stuck - it's about the only treatment that's ever offered to those patients. If it works, then chances are the patient didn't have one of those conditions in the first place. Or they would have recovered from whatever it was that ailed them, anyway.

bigzippy wrote:

(Incidently, my SIL's psychotherapist also raised this concern, so it's not just a non-psychobabbler then) Funnily enough, when I asked this of my CBT therapist - basically the very same wording - she said I was taking a reductionist view!
She also wasn't impressed when I told her that my GP had, at one point, said that for a dx of ME they may as well call it Mystery Illness X - as it is essentially a name given to a collection of unexplained symptoms with no known cause or cure. She said he had a reductionist view too.

Sounds like your therapist is a touch on the defensive side with this. You asked a perfectly valid question, and she's effective dismissed your query. Your GP is right - ME is also known as a 'dustbin diagnosis', 'cos that's the dx given to people who have had numerous tests (if they're lucky, I've known people be diagnosed with it who've been tested for precisely zilch) and nothing definitive has been found. Dunno what it is? We'll call it ME.

bigzippy wrote:

She then asked me if he was helpful. I said yes, he is actually - if I ask him for something he'll either oblidge or explain why he can't do so. She was less than impressed with that answer also.

Again, a somewhat defensive attitude, which isn't good in someone who's supposed to be providing therapy. It suggests to me that she's the one who has a problem with what she's doing. In your case at least.

bigzippy wrote:

Funnily enough I think me and this particular CBT therapist will be parting ways in the not to distant future. I did tell GP a couple of weeks ago I didn't gel or particularly like her and questioned whether I'd be able to get someone else on that basis. The answer was a pretty expected no, but funnily enough I can get someone else on the basis that my current woman is 14miles away and I don't want to be required to go that far on a day I'm not doing well on when OH is working.

Well, you've given it a fair trial - there's another problem, if you've got a diagnosis of certain problems, if you refuse a 'treatment' you're effectively accused of not wanting to get better. Which is why I eventually gave in a few years ago and let my then doc put me on anti-depressants. I suspect the fact that I wasn't actually depressed might have some bearing on why, not only did they not work, but they actually made some of my symptoms a lot worse.

bigzippy wrote:

My parents we trying to tell me that I'd be well again and this wouldn't last forever the other day. You can imagine how well I reacted to that. Mum went on to say that she knew someone with fibro who'd recovered and was doing well, that she works with her. After further pressing and questions, it turns out that this person works as a sessional teacher... ie part time.
Another woman extolled the virtues of Bvits to mother-dearest. You can guess what the content of the next phone call was. :cool:

Oh yes, had that one as well - my parents saying that my B-i-L had been diagnosed with ME and he could do x, y and z. Well, bully for him, perhaps he doesn't have it as severely as I've got it (except it's since been established that I didn't have it). Plus, the fact that he recovered after 6 months suggests to me that he had post viral fatigue, not ME.

Magenta

Hi all,
I have jsut been reading thru the posts trying to catch up again as usual.
After anotherr marathon sleping session I woke up to find a letter from a debt collection agency for £109.
Well after freaking out. I set to work on the phones for several hours (all premium numbers of course!!)
It seems that I am a victim of Identity theft.

To cut a long story short I have now applied for a credit rating thing to see what else has been going on, the police agreed with me that this debt was probably the tip of the ice berg. (they may have opened bank accounts, applied for loans etc)

So now that I am worried sick and a MIgrane is whacking me on the head I am going to have to retire to the bathroom for about 10 hours(that's the usual, head in loo)
So fingers crossed for me please.

Who said God only sends us trials he knows we can overcome!!!
Well, please God I think I have had my fair share so PLEASE take my name off the list.

somebody_else

Magenta wrote: »

Hi all,
I have jsut been reading thru the posts trying to catch up again as usual.
After anotherr marathon sleping session I woke up to find a letter from a debt collection agency for £109.
Well after freaking out. I set to work on the phones for several hours (all premium numbers of course!!)
It seems that I am a victim of Identity theft.

To cut a long story short I have now applied for a credit rating thing to see what else has been going on, the police agreed with me that this debt was probably the tip of the ice berg. (they may have opened bank accounts, applied for loans etc)

So now that I am worried sick and a MIgrane is whacking me on the head I am going to have to retire to the bathroom for about 10 hours(that's the usual, head in loo)
So fingers crossed for me please.

Oh Magenta! I hope it's sorted out sharpish. It might be worth checking out more than one credit agency though - they have been known to hold different information on different people.

Magenta wrote: »

Who said God only sends us trials he knows we can overcome!!!
Well, please God I think I have had my fair share so PLEASE take my name off the list.

Well, you see, this is where my theory comes in. The thing is, the bible was translated from a different language (if I remember correctly, more than one), so it's actually a translating error. It's not God - that word originally started with an S.


[My apologies if that offends anyone, it's intended to be light-hearted.]

Careful_with_that_Axe

Ooooh, contraversial s/e!

I do hope you get it all sorted Magenta. How awful. You might want to cancel all your cards etc and get new ones in case they've been compromised somehow.

Bit fed up here as when taking sticky things (technical term) for leads for heart monitor off, I tore the skin on my chest. That's chest, not chesticles. Sore!
Also on inspecting car tyre that looked a little deflated, I have a bleedin great nail in it. Will have to replace it before I do any long journeys.
My fave saying is "what doesn't kill you makes you stronger". Just how blinkin, blimey, boogerin strong am I suppose to get?:mad:

OK, rant over. An hour or so of tidying seems on the cards, but then I know it'll be back to this state by this time tomorrow. :mad:

Took a furtle (:p ) round MFI out of interest today and looks like the scavengers descended as soon as the news was announced. Nothing left in terms of furniture. Did get a wooden chopping board and nice wooden jar [strike]to clutter the place further[/strike] for £2.50.

Right, 1, 2, 3, heave! That's just me getting off the sofa

peachespeaches

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.

Careful_with_that_Axe

Hello peaches and welcome.
I'm not by any means the expert on DLA as I'm only just applying for it myself, but someone has mention an organisation called Dial, and is there a Welfare Rights Officer for your area?

I'm sure someone who knows more will be along shortly. Stick around and enjoy the fun!

somebody_else

peachespeaches wrote: »

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 peaches, welcome to the thread.

Now, I'm not a nexpert on DLa, but I have put in a couple of claims - the first time I was turned down flat, so I appealed which was also turned down so I went to Tribunal, which resulted in an award for the Higher Rate Mobility for 2 years.

How much information did you give them? The thing is, unless you've got certain conditions (ie, amputation, confined to a wheelchair), in my experience, the form alone doesn't allow you to give enough information for them to make (for want of a better word) an informed decision. If I relied on the form alone (which I did for my first claim) then I'd also be turned down.

On top of the form, I also keep a diary - pain levels and how they correspond to activity levels, mood levels, injuries sustained, the things I can't do (eg, I've recently had 2 bulb blow on me, neither time have I been able to flip the trip switch myself because I can't reach the meter cupboard, and I can't change the bulbs myself, again, because I can't reach them and I can't climb safely - so I have to wait 'til someone who can do these things is around. Theres the added complication that if 1 bulb goes, all the lights on the circuit go out so I'm left in the dark) which go to build up a more comprehensive picture of how my problems affect me. I also include a full list of symptoms and triggers, and link the symptoms to the answers on the form. You also need to establish the knock on effects of doing things - okay, it might not hurt today if you walk as far as the nearest bus stop, but you might be in agony tomorrow because of it. Or having walked as far as the bus stop, you're so tired with the effort, that you can't do what you intended to do when you reached your destination. That sort of thing.

You also have to decide what's more important - the care component or the mobility component. For me it's the latter - without a car I'm effectively housebound unless someone can drive me to where I need it. Even with the car I'm limited in what I can do andwhere I can go, because I can only drive short distances, and I have to be aware of my energy and pain levels when I'm out or I can't get home again. I think what I was leading up to here is, is it worth the risk to you of losing your care component, in order to fight for the mobility component?

I'm not saying that all this information will result in a higher award, but it won't do your case any harm if you give it a go. And yes, I know it's really difficult to do this - I'm currently in the process of renewing my claim, and I'm hating every minute of it, and keeping the diary is incredibly distressing 'cos it's focussing my mind on what I can't do, instead of what I can get done from time to time.

Good luck.

Careful_with_that_Axe

s/e We bow at the feet of the master.
I could never have given such a comprehensive answer and it has also helped focus my mind on the best way to fill in the form. Thank you.
Is it quite rare to get both the care and the mobility awards? From what I know of most of us on here I would have thought we would meet the criteria for both.