Fibromyalgia

somebody_else

purplecatlover wrote: »

i feel like ive heard that a lot this year

And you've got to do your best to ignore it! I'm sure I'm not the only one who's made herself worse trying to prove that I do want to get better.

tom9980

somebody_else wrote: »

Morning folks, 'fraid I rather dipped out of yesterday cos I felt so rough, but I'm feeling a bit better today.

Will respond to other things in a mo, but just wanted to pick up on the Lightening Therapy thing first.

I don't know what, exactly, is involved in this, but I have heard a couple of things that make me wary of it.

1) Like a lot of 'alternative treatments' for things like ME, CFS, Fibro, etc it's very expensive.
2) If it doesn't work (and it doesn't for a lot of people) it'll be because 'you weren't ready for it just yet' - or in other words, you haven't got better because you don't want to get better. Does that sound familiar? That in itself is enough to put me off the whole idea completely.

There was a programme about it on Radio 4 either earlier this year, or late last year. What those who offered the 'treatment' wouldn't do was explain what was involved in the treatment. They just kept saying that those who wanted to know more about it would have to sign up for the course.

I'll see if I can find any links to it.

The Lightning process (as explained to me by people who like me have M.E and have undergone the course) essentially is everytime your in pain or having anything negative happen you stop and tell yourself its not really happening using the process, at first this is 100's of times per day and this lessens in frequency as you progress. It is of course a lot more complicated than that but frankly reprogramming yourself isnt exactly getting to the route of the issue now is it?

somebody_else

tom9980 wrote: »

The Lightning process (as explained to me by people who like me have M.E and have undergone the course) essentially is everytime your in pain or having anything negative happen you stop and tell yourself its not really happening using the process, at first this is 100's of times per day and this lessens in frequency as you progress. It is of course a lot more complicated than that but frankly reprogramming yourself isnt exactly getting to the route of the issue now is it?

Erm... So it's a case of, 'you're not really ill, you just think you're ill'. And people pay to be told this? You can get that for nothing on the NHS and from the DWP.

suep

Sorry I havn't been around over the weekend, I havn't felt too good and yesterday had a houseful of family which left me exhausted. I've stopped taking the Tramadol for now as it's making me feel sick and given me an bad stomach, but I dont want to go back on the co-codomol as it doesnt help me at all.Ive read the last few pages to catch up as best as I can and thought Id best add my two'pennorth to the baldder question from Poohbear.

I get severe frequency and bladder pain, at times Im on the loo every 10 mins and the pain is similar to cystitis but it doesnt sting when I pass urine and the pain eases a bit when Ive emptied my bladder, also no infection shows up in tests.
I found lots of help at www.cobfoundaton.org and found cutting out citrus fruits,caffeine,tomatoes and yoghurts has helped, I only drink red bush tea and water and can only eat bananas and pears for fruit. Ive seen a Urologist several times and tried different meds which either didnt work or worked too well and gave me urine retention.
Ive now been told I have interstitial cystitis which is inflammation in the bladder lining and a common Fibro symtom and in january Im starting a 6 week course of instills which Im not looking forward to.
I hope any of you with problems find the cob site helpful.
sue x

tom9980

somebody_else wrote: »

Erm... So it's a case of, 'you're not really ill, you just think you're ill'. And people pay to be told this? You can get that for nothing on the NHS and from the DWP.

Pretty much yes, as with most of these so called cures which have never had a proper scientific study you shoudnt rush to try it. Mostly they are just preying on desperation of the sick. This doesnt mean i think its wrong for anyone to try new or different things to help get better or relieve the pain because if we sit on our !!!! all day nothing would happen just be wary and do your research.

The NHS and DWP make me sick to be honest, most neurologists dont want to see M.E patients (doesnt matter that it is defined as a neurological illness) because they have been brainwashed by a school of thought of a certain Dr and his "Team". Giving CBT and GET to these patients hopefully will be proved to be criminal in next years High Court case and more people will take notice of the injustice. I'm hoping the media picks it up and its not just some sound bite on the news.

Enough ranting.....

Careful_with_that_Axe

At the risk of speaking too soon, I wonder if I've tamped the Job-seeking area of DWP. They insisted I go in to see them after last IB assessment to discuss how they could help me back to work even though I had been signed off for foreseeable future :rolleyes: . I twice had to cancel appointment as was too poorly and was told if I didn't attend third time that IB would be stopped. I turned up, on crutches with my wrist splints on barely able to stand without passing out as I was having a bad flare up. Cue cups of tea, solicitous care and being told if I felt too poorly to make it in next time just to tell them! The effort of geting there, probably cost me another couple of days in bed to recover. i do understand that they have to police the system, but if my GP, Rheumatologist, Cardiologist etc say I'm sick how dare they say they know better!

have another IB assessment in Jan and not looking forward to it. First time I went the doc said she couldn't find anything wrong with me :mad: , although 2nd time, the bloke was actualy very sympathetic and was encouraging me to remain in a positive frame of mind.
I've set myself the task of finally applying for DA - gawd I hate the form. If I can get it completed and submitted before 20th Dec, I can go away for Xmas and congratulate myself.

Oh, I got sent a MetroCity Standard Issue Police T-shirt today, so I have the authority now and you must listen to me when I say ......












eat chocolate
Love you and leave you
x

Careful_with_that_Axe

p.s. my new obsession for listening to when I'm doing housework is audiobooks. Because of short term memory and mind drifting, I'm not past disc 1 although I've been listening for a month
Picked myself up a how to knit kit and also a how to crochet one, so what's everyone gonna get for Xmas? :eek:

sharon59

I am back feeling c**p but keeping going.Doctor yesterday evening said l had a "very nasty UTI" -l could ave told him that!!! so its more antibiotics.the more l read though the more l wonder if l have got the intestial(?)cystitis thing as symptoms all fit.think maybe my bladder prolapse is bit of a red herring and not connected to the problem.
Hope everyones ok -think l too will give Lightening therepy a miss!

Careful_with_that_Axe

sharon59 wrote: »

I am back feeling c**p but keeping going.Doctor yesterday evening said l had a "very nasty UTI" -l could ave told him that!!! so its more antibiotics.the more l read though the more l wonder if l have got the intestial(?)cystitis thing as symptoms all fit.think maybe my bladder prolapse is bit of a red herring and not connected to the problem.
Hope everyones ok -think l too will give Lightening therepy a miss!

Aww, shame sharon. Hope you perk up soon. My gut feeling, although it may be wrong, is that perhaps the bladder is more susceptible to infection because of the prolapse? Is the prolapse being treated at all?

Sue, take it easy for a couple of days and be nice to yourself eh?
Big [STRIKE]Gob[/STRIKE] Zippy must still be wrapped up warm and toasty dreaming of weddings today methinks.
Just cleared out the pill drawer - amazing what you find tucked away at the back.
x

LameWolf

:hello: Hi everyone.

I've not been around for 3 days, did anyone notice I was gone??:D

CwtA, I'm older than you, mate!:D

I've had a busy weekend, opera Friday evening, scratting around doing whole weekend's housework saturday, then meeting an old friend for lunch in a pub on Sunday. I can't visit her house anymore, as it's a steep flight of steps to up to her door, and I can't manage them now - hence the pub. She lives 40-odd miles away, and we only see each other about once a year. She doesn't visit me, as 1) she hates driving and 2) she has many rescue animals that can't be left for long.

Anyway, having bored you all to tears (might help those with insomnia?:D ) I'll go and sit in my basket in the corner.:rolleyes: