Chronic Fatigue Syndrome or M.E

[Jayjay027]

I can totally understand this. I have ME/CFS and it took me years to be diagnosed as no doctors would take me seriously. I struggled massively at work and my sickness record was ridiculous because there were some days that I just couldn't physically get up out of bed.

To whoever said a change of diet and a positive attitude cures it, all I can say is, its obvious you don't have it! Treating people with it isn't the same as having to deal with the fatigue, achey joints and raised eyebrows from people thinking ur just lazy to name but a few. Until you personally have dealt with it urself, u can't say things like that. It sounds like ur saying there's a cure but we're ignoring it. Which just absolutely is not the case!!

I will admit, a change of diet did help me slightly. I saw a nutritionist (which cost me £30 because my doc wouldn't refer me either) who wrote me out a plan, and I cut out dairy. But it certainly didn't cure me!!
It also helped that I left my office job and started working for myself because making my own hours is a God send, but I can appreciate not everyone has this luxury.

It is such a terrible thing to live with, and bad enough that people don't take it seriously, but coupled with the fatigue of pregnancy, its not been easy!
I didn't work for over 4 months from when I got pregnant because of the morning sickness and then the CFS.
I've gone back now but not doing as many hours as I was before.

So anyway, sorry for the rant. But to the OP, I just wanted to let u know that ur not alone in dealing with this. U can PM me anytime because I know only too well how debilitating it can be xx

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[willowwisp]

I never said a change of diet and positive attitude cures all. I think those words were twisted from my own. Nor did I claim to know everything about anything.

As someone who managed in her early 20's to hold down a full time job, manage a life threatening medical condition which required 4 major ops in an 18 month window to keep me alive (after three years of being told I was attention seeking, making it up and a hypercondriac by various doctors whilst I was propped up exhausted and in agony), keep my car on the road and a roof over my own head, suffered a severe B12 anaemia for months and couldn't have the injections, cared for a relative with ME who lived 45 miles from where I worked (all the cooking, cleaning, washing, ironing, lawn mowing, taking to appointments etc on top of my own) and manage to research both mine and my relatives medical condition and retrain at the same time to help us both. So I am in no circumstances not understanding of the condition, or what it is like to be in a position where everything is a struggle regardless of the medical condition. Neither did I say it was easy.

You can roll over and waste all your energy getting cross at the injustice of it all, the crapiness of the NHS, feeling misunderstood, side swept, and the worries of money and getting better. Or you can do what I did, which was just keep putting one foot in front of the other and trying to improve things.

You should never knock something until you have properly trialled it either. 2 weeks on a different diet is pointless, with long term conditions you want at least 12 months. I don't know how anyone can say with 100% certainty that something won't work for them without even trying it.

My posts where made in good faith with the attempt to relay some experiences which are true to my life, at no point did I say eat a carrot and be cured, in fact I never mentioned the word at all. I refer to my first post where I stated I managed to get people to the point of feeling well enough to work, not cured.

There is no cure for my condition either. I battle daily to control the things that I can control which reduce the occurrence of serious events. I've been all over the UK and even abroad to see specialists with no joy, but the things I can do to help myself I HAVE to do, or next time the chances of me pulling through are seriously slim.

 

[Jayjay027]

U talk about people putting words in ur mouth and then say '2 weeks on a special diet isn't going to change anything'
Where did anyone say that they only tried a diet for 2 weeks? I've been on a special diet since Jan 2009, and was only diagnosed with CFS last year!

I don't know what you've been though, nor do I claim to, and I was never 'cross' at u. I just said it seemed like u were saying there was a cure that we were ignoring.

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[wifeywifey]

I never said a change of diet and positive attitude cures all. I think those words were twisted from my own. Nor did I claim to know everything about anything.

As someone who managed in her early 20's to hold down a full time job, manage a life threatening medical condition which required 4 major ops in an 18 month window to keep me alive (after three years of being told I was attention seeking, making it up and a hypercondriac by various doctors whilst I was propped up exhausted and in agony), keep my car on the road and a roof over my own head, suffered a severe B12 anaemia for months and couldn't have the injections, cared for a relative with ME who lived 45 miles from where I worked (all the cooking, cleaning, washing, ironing, lawn mowing, taking to appointments etc on top of my own) and manage to research both mine and my relatives medical condition and retrain at the same time to help us both. So I am in no circumstances not understanding of the condition, or what it is like to be in a position where everything is a struggle regardless of the medical condition. Neither did I say it was easy.

You can roll over and waste all your energy getting cross at the injustice of it all, the crapiness of the NHS, feeling misunderstood, side swept, and the worries of money and getting better. Or you can do what I did, which was just keep putting one foot in front of the other and trying to improve things.

You should never knock something until you have properly trialled it either. 2 weeks on a different diet is pointless, with long term conditions you want at least 12 months. I don't know how anyone can say with 100% certainty that something won't work for them without even trying it.

My posts where made in good faith with the attempt to relay some experiences which are true to my life, at no point did I say eat a carrot and be cured, in fact I never mentioned the word at all. I refer to my first post where I stated I managed to get people to the point of feeling well enough to work, not cured.

There is no cure for my condition either. I battle daily to control the things that I can control which reduce the occurrence of serious events. I've been all over the UK and even abroad to see specialists with no joy, but the things I can do to help myself I HAVE to do, or next time the chances of me pulling through are seriously slim.

I get the feeling your wording hasnt been the best in this thread you have come across as saying its simple and that we feel sorry for ourselves, anyone who suffers knows everyday is a fight. Im sorry if I came across harsh your post does seem to contain the negativity I spent everyday fighting against which is why I was so offended however I believe your intentions were probably good.

Im sorry for what you are going thru and wont pretend to understand just hope they find that cure.
I didnt intend to start an argument its just a touchy subject for me. X

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[Gayle30]

Wow.....where do I start with this can of worms.

Really sorry to have brought the subject up. I only wondered if anyone else was a 'silent sufferer'. Think everyone means well and for every one of you suffering too, thank you for your kind words and for offering support. CFS is so complex and unless it's happening to you I really don't think it's an easy one to grasp. No diet in the world will cure this. No ammount of exercise helps (my oh is a personal trainer and believe me for the last 3 years he's tried). In fact I am lucky if I can do any as fatigue sets in and I just can't. It's not about being lazy despite what some have suggested. I wish I could enjoy exercise, I wish I could go out and dance the night away 3 nights in a row like the rest of my friends. In fact, some days I wish it was that easy to get out of bed. And yes your right, the nhs are not great at diagnosing and supporting this illness. There is no blood test to confirm what it is. It is a series of different ailments, aches pains, muscle fatigue, weightless, insomnia, over sleeping and depression. I could name loads of associated things. think that's why it's just so hard to diagnose and accept as there is no actual test to diagnose.

Mine started after a catalogue of failings in my life. I split from my fiancé of 11 years, moved out of our family home, lost that side of my family, changed jobs and had a simple operation which left me with a horrible virus which destroyed my immune system. In the end I had such debilitating infections and needed my tonsils out. I have had 2 5 month periods off work as a result in 2 years And only went back to work as I couldn't support myself on half pay. I went on to have 5 operations in the 3 years since diagnosis for one thing and another and each time I find it harder to 'bounce back'.

Anyone who knows me will tell you how lively and happy I am....but inside I am knackered and often get depressed. Having CFS is not something I am lying down to, I did not chose to have the illness and nobody in their right mind would chose to lie down to it and not want to get better. So if I'm honest willowwisp-that's the bit that saddened me the most. U say nothing can be done unless the patient wants to get better. That's maybe true for some people but I'm willing to bet my life not one person on here wants to feel like utter shit and invite the doom and gloom into their life. I certainly never asked for this....guessing we are all the same.

Thanks to the girls who also share my want for CFS to be taken more seriously and as much as that would be great I seriously don't think we have much chance. I'm lucky to have the most amazing support from my very loving family and circle of friends but I realise some people have no support which must be impossible. I guess their love is what gets me through.

Life is tough but I feel like I have been given the most amazing, lucky, special chance to think about something else other than CFS for a change... I honestly can not wait to meet our little person. Im Actually counting the sleeps till 7th June when we see D at our next scan. I bet you ladies are the same. What an amazing reason to get out of bed!

CFS is Rubbish-that's my fav way of describing it too. But then so is any chronic illness so for that I really am sorry for anyone who suffers from anything, not just cfs for I would not wish this on anyone!

Just wanted to say thanks again for the support. We should start a wee CFS club. Haha! Hope everyone gets as much rest as they can and the remainder of their pregnancies goes well. I know the love for my little D will keep me going through it all.

Sorry for rambling......sending LOTS of love. Xxxxxxxxx