the uncurable chronic fatigue according to nhs

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the uncurable chronic fatigue according to nhs

Postby sjc » Thu Feb 02, 2012 8:40 pm

Hello,

When to a chronic fatigue clinic recently in Derby but I have also spoken to my GP regarding the problems I am facing with chronic fatigue related problems - this is a result of my other conditions....Basically I have now been told that nothing can be done for chronic fatigue, and there are no medications or treatments out there for chronic fatigue sufferers.....

I kind of know this anyway, but kind of makes me rather sad.......there are cures and medications for other conditons out there for other medical conditions, some even life threatening, but there are none for chronic fatigue related sufferers....

I think personally we need more research on chronic fatigue but we need more doctors perhaps looking at similiar conditions to chronic fatigue, and giving similiar treatments and medication to cfs sufferers that will be used in similiar conditions. But that is just my theory on it....Don't know what you guys think.

This makes me sad and wonder how people with CFS/fibro will manager their debilitating symptoms if their is very little medical support out there......Anybody agree or have the same opinions....Love to hear from you all....All the best. Take care all.

Sick of being sick, if you know what I mean. Anger keeps me going! I love campaigning for the rights of those with hidden disabilities. Enjoys talking to other like minded people - well, if you are sane, anyway :)
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Re: the uncurable chronic fatigue according to nhs

Postby Ldyalb » Fri Feb 03, 2012 1:04 pm

One of the problems with CFS, ME and Fibro is that a lot of research into the conditions focus on psychiatric, rather than physical causes for them. There's a bloke called Wesley who gets alot of money to research Fibro and other similar conditions and he's convinced they are Psychosomatic. Which suits governments and insurance companies nicely as it's easier to deny people payouts and benefits if they have a psychosomatic illness, than if they have a physical illness.

I agree though, more research needs to be done but it looks like there are some people exploring the physical causes too now. Hopefully that will continue.

I think it's particularly interesting that Wesley etc keep insisting that ME is psychological, yet ME patients cannot give blood. So if there's no physical cause - what's wrong with their blood?
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Re: the uncurable chronic fatigue according to nhs

Postby Adele » Fri Feb 03, 2012 3:40 pm

i've had mixed results with the treatment i have received for my ME which i now have severely. my GP thinks i have to learn to live with it and just treat any infections i get as i go along. i did ask for some amphetamines to give me a bit of a boost in the mornings. strangely he said no :-?

my neurologist believes it's a psychological condition and i'm ok with that as long as someone can cure me. :crazy:

in rehab being kicked out of bed at 7 every morning was their cure. i just needed to get into a good sleep routine and then my quality of sleep would improve and i'd need less of it. i started going to bed at 7 just to survive. :sleep: :(
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Re: the uncurable chronic fatigue according to nhs

Postby fibro-lu » Fri Feb 03, 2012 4:09 pm

Ldyalb wrote:I think it's particularly interesting that Wesley etc keep insisting that ME is psychological, yet ME patients cannot give blood. So if there's no physical cause - what's wrong with their blood?


that's very intersting indeed
thanks for that
(might have known before and forgotten)
all the best :cow-wave: Lu
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Re: the uncurable chronic fatigue according to nhs

Postby Ldyalb » Sat Feb 04, 2012 1:30 pm

It was mentioned on here a while back when people were debating whether or not to give blood. I think some blood banks accept the blood of Fibro patients, but some don't (it can also be refused dependent on which meds you take).

The government et al did try and say ME patients are only banned from donating blood because giving blood may make them feel worse, not because they think it's contagious. But that doesn't make sense, if so then Fibro patients, and other people with similar conditions should also be banned as it could make them feel worse. Or even more simple - don't ban them giving blood and let adults decide whether or not they want to donate - if someone with ME is happy to risk feeling worse for a few days to give blood then why should they be stopped from doing so if they know the risks? Lots of people with no health problems decide not to donate their blood after all, why refuse the blood of someone happy to give it if there's nothing physically wrong with it?

If I live long enough to die of old age *touch wood* I think I will live to see firm evidence of the physical causes of Fibro, ME etc be discovered.
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

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Re: the uncurable chronic fatigue according to nhs

Postby sjc » Sat Feb 04, 2012 2:24 pm

:-D Hi there, I totally agree with you in saying that NHS seems to think that CFS/Fibro/me sufferers need pyschological support - I understand what the NHS means as both physical and mental well being is supported in fibro and CFS sufferers.....But we all not that fibro and cfs is not a mental disorder.....i think that what frustrates me is that cfs and fibro cannot be founded by blood tests/x-rays so doctors then assusme it must be a mental condition.....hope we can find what causes cfs one day...take care folks.
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the uncurable chronic fatigue according to nhs

Postby bexfitz » Sat Feb 04, 2012 7:19 pm

From what I have researched, there is a chemical thing going on in the brain of fibro patients. It has been suggested that we do not make enough dopamine (could be dobutamine) which I think is a feel good chemical, hence why we are all given anti depressants. I think that there is also an issue with our levels of adrenaline and noradrenaline production, so, it. Can be argued on this basis that fibro is a physical condition, as it is a chemical production and pathway problem.........nothing psychological about that is there..
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Re: the uncurable chronic fatigue according to nhs

Postby Adele » Sat Feb 04, 2012 9:58 pm

i am in a dopamine catch 22 situation. i am on antipsychotics for obvious reasons. they work because they are dopamine antagonists. dopamine agonists are used to treat fibro but would make me psychotic. stopping my meds would probably help but again i would become psycotic. i have been on ant-p's for 16 years and suffered varying degrees of dystonia as a result. sometimes i want to chuck all my pills away and start again. neuropathophysiology sucks :twisted:
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Re: the uncurable chronic fatigue according to nhs

Postby sjc » Sun Feb 05, 2012 4:37 pm

Hi there, adele....I am anti-pyschotics at the moment as well....yes, they are good in the sense that they help with your dopamine levels....but they can be a nigtmare when coming off....I made that mistake last year, and boy I knew about it....but that is a another story altogether.....Dopamine antagonists medications are hard to get from nhs unless you are diagnosed with restless leg syndrome, parkinson, narcolepsy, adhd, etc....I tried to get some stimulant based medication from nhs from various doctors, gp's, etc....but they didn't want to give me any thing for the medication....yet on the internet, it says people with fatigue issues can have off label medications that make them more alert....I find that nhs just want to keep giving you anti-depressants all the time, but people with fibo/cfs are soooooo sensitive to medication....so it is hard to treat fatigue....people say to me, well do exercise/eat properly, etc...but when ya feel absolutely rubbish, i don't feel like doing any physical activitiy at all....wish there were more research on fibro and cfs, so they know why it happens, etc....Take care. xxxx All the best. :)
Sick of being sick, if you know what I mean. Anger keeps me going! I love campaigning for the rights of those with hidden disabilities. Enjoys talking to other like minded people - well, if you are sane, anyway :)
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Re: the uncurable chronic fatigue according to nhs

Postby Ldyalb » Sun Feb 05, 2012 6:45 pm

The thing with Fibro is that sometimes eating well etc can help, but after a while Fibro just comes back full on again.

When I first went Veggie I felt fantastic, I'd managed to get a job in my dream career too which helped to be fair. But I had loads more energy, lost a few pounds, felt lighter, healthier and more energetic. I was less constipated (although it switched to Diarrhoea instead which wasn't great either, but it was a change at least). I knew I was benefitting from an excellent diet, without going Vegan which is healthier, but harder to do.

After two months - massive flare, that was early August and I'm still in that flare.

I think all we can do is try to be as healthy as we can within our limitations and hope for the best. I think if diet and exercise could cure Fibro then we'd definitely know about it. And we wouldn't be on here because we'd all be de-Fibroed. It's very easy for people who don't have Fibro to say 'eat well, exercise, get more sleep'. They don't have to try and exercise with fatigue and pain. Or try and eat a perfect diet when you can barely stand to make food. And they certainly don't know how much we'd desperately like a good night of refreshing sleep. I can sleep for England these days. Still got horrendous fatigue though :evil:
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Re: the uncurable chronic fatigue according to nhs

Postby animalhouse » Mon Feb 06, 2012 12:25 pm

i know what you meal ldyalb,

i was up at 7am witht eh big kids checking the radio and internet to see if school was cancelled, bus etc.

heard them leave at half 7 next thing i knew it was half past 9 - had fallen asleep and little lad was sat quiety at his computer doing his bbc bitesize safe and sound. so you see mf judge i can homeschool and have fibro/cfs. :nono: :nono: :nono:

anyway go up and dressed, back in dressing gown and am now on settee. people don;t get we just cannot fight our bodies and work thorugh it. had stilled slept last night but couldn't get to sleep becasue of pain in my neck and arms.
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Re: the uncurable chronic fatigue according to nhs

Postby sjc » Tue Feb 07, 2012 9:42 pm

Hi folks - thanks for all your great replies.....Just out of curiosity folks, which do you find the worse with dealing with, tiredness or pain issues.....??? I find the tiredness really hard to deal with, personally....I don't like pain, but I know that I can take a painkiller, rest, pace myself, use hot water bottle, etc.....Just brought a vibration message mat from Argos, which is quite relaxing for the pain and stress.....But do not seem to know what to do with the tiredness....My tiredness is sometimes physically, but mentally I struggle as well....Mentally I have low concentration levels, and my motivational levels these days are really poor.....The nhs have told me there is nothing I can do apart from getting myself in society again....i know one has to do so, but wish there was a cure out there for fatigue....take care folks, and great replies from you all.....keep them up!
Sick of being sick, if you know what I mean. Anger keeps me going! I love campaigning for the rights of those with hidden disabilities. Enjoys talking to other like minded people - well, if you are sane, anyway :)
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Re: the uncurable chronic fatigue according to nhs

Postby masonsbarms » Fri Feb 10, 2012 6:01 pm

hi i am sure i have read that there is some evidence that fm is to do with the central nervous system and lose of grey matter in the brain or have i dreamt this ?
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Re: the uncurable chronic fatigue according to nhs

Postby sweetleaf2 » Sat Feb 25, 2012 1:56 pm

This guy has something to say on the subject, American of course, so not much use to us in GB , but interesting nonetheless
http://drbradshook.com/2010/01/14/liter ... romyalgia/
I`m not over the hill I`m still climbing it, thats why I`m so tired all the time
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