CFS/ME

SuffolkSally

Hi, anyone out there with diagnosed CFS or ME?

I'm currently still label-less while some more testing goes on, but it's looking likely that CFS will be the formal diagnosis and I'm looking for information...

So I'd be really interested to hear from people who have this condition. I've been trying to eat as well as I can manage for some months now in a bid to help myself - has anyone else had any improvement with diet changes?

How do you manage the exercise v excessive fatigue balance?

Anyone else had symptoms fitting the CFS profile but also abnormal bloodwork?

Any other thoughts to share?

bethmillerwilson

What a person eats is around 80% of their weight problem usually. You should be able to see results from a diet change alone. Hopefully, once your weight is reduced you will start to feel a little more energy and can maybe start walking to kickstart it even more. I do not know what your specific situation is, but you may have to attempt to force yourself to walk, when it's time. I do not envy your situation, it is a hard road, with no clear cut answers. I hope you find what works for you, but know that changing what you eat WILL help.

Good luck on your journey!

PaulieUK

Hi there,

CFS and ME are the same thing really, or so my GP tells me. I have it and Fibromyalgia and Rheumatoid Arthritis. For me food and calorie intake aren't an issue but exercise is. I have good days and bad days...usually more bad than good if I'm honest...but you know, sometimes it has to be 'mind over matter'. If I tell myself over and over that I'm fatigued, in pain and experiencing a long list of conditions and can't exercise then I won't exercise.

All conditions like this are very hard work but it is possible to train yourself GENTLY to exercising regularly. Start small and work your way up. I try and do Jillian Michaels 30 day shred...which is laughable when you consider what is wrong with me but I started small and worked my way up. I just do as much as I feel I am able to. Some days I can barely manage the warm up and other days I can almost catch up with the girls exercising on the DVD.

Sometimes weeks will go by when I've not been able exercise at all; even walking or getting out of a chair is a struggle. That can affect my mood making me feel very low which then aggravates my conditions.

As far as diets are concerned; I don't diet or cut out any food - I eat a balanced meal with plenty of water. I have tried different things but nothing helps with CFS, RA or Fibro - but exercise does. It is hard to begin with, it's VERY hard, but I do a little bit regularly. Overall don't sweat it. Just do as much as you can and don't compare yourself to anyone on here.

jenbenefit

I used to "suffer" (hate that term) with ME from the ages or 12 to about 19, only did 6 GCSE''s and took my a levels over three years. I was off school for so much of years 8-10 (ages 12-15 i think?) , i remember one time i was determined to get out of the house today, got about five minutes down the road, and literally had to lie on the floor whilst i rang my mum to pick me up.

It really, really is NOT a joke, and just because there isn't a "ME test" or because it'snot something you can see, does not mean you can take it lightly

Sorry to sound so overbearing but it's so important to listen to your body.

Yes, I would love for you to be thin and healthy and fit. But right now, atleast to a certain extent, that can't happen.

That doesn't mean it never will, and remember that, too. For me, I've been to uni and I'm working now with uni part time. I honestly didn't think that would be possible for many years.

You WILL get over it. And as silly and weird as it might seem the best way to go forwards ot to avoid taking steps backwards. Yes, if you're having a good day, go for a walk, do some yoga, swimming. But listen to your body, always, ignore what your mind wants and focus on what your body needs. Your body needs good food and lots of water. It needs to recover from ME and it can't do that if you run a marathon (or your equivalent) every day. Like if you have flu and run a marathon, you will only end up worse.

But sometimes when you feel down and you do a little bit, it really helps and it improves your mentality, knowing you can do things.

Deffo try and eat right. I know i would have days when I couldn't get out of the house, so i would comfort eat and comfort eat, and feel worse for it.

But everyone is different, you might be reading this thinking "Mate, i walk 5 miles every day, chill out" and if you do that's brilliant, just relate it to you and your situation

Just stay strong. i don't know how severe your ME is but just know that you're going to get through it.

If you want to message me atall then feel free, sorry this is such an essay! :flowerforyou:

SuffolkSally

@Paulie; did you see there was someone on the threads earlier saying they were researching "clusters" of autoimmune diseases? They might be interested to hear from you..

I know it can be very debilitating and painful... amazing to hear people's stories. I've mainly got joint pains, headaches, sleep disturbance and excessive fatigue but it's not so hugely disabling as some people are describing. I don't have all that much weight to lose really, nearly in the healthy BMI category and aiming to lose another 15-20lbs. I do walk every day, at least half an hour, and I can do more strenuous activities but tend to overdo it and then be shattered for a couple of days. I've been trying to do some strength training as well, and also I work on a casual basis as a painter (for friends, which is great as I only work when I feel well enough, and I only manage a few hours per day and not consecutive days, so I can manage the exhaustion level).

Jen you're quite right. I'm used to being an active energetic high functioning multi tasker, and I find it very hard to accept that I'm not, for one thing, and I'm having to learn new habits (like difficult house guests who need looking after would have been a breeze two years ago, now it's beyond my coping ability.

I think mine was triggered by stress - one major trauma and several other highly stressful events in a very short time frame. Is that the case for anyone else? Suppose I'm selfishly hoping that as it was stress induced I may make more of a recovery and sooner than people who've got it associated with other autoimmune illnesses as well.

I've had a campaign of better nutrition since January - can't say I've noticed much difference really, but at least it makes me feel I'm doing what I can to help myself.

The odd thing is that my bloodwork shows variable abnormal results, particularly on netrophils and B12 , whereas I always understood with CFS/ME it was a kind of elimination diagnosis with no diagnostic tests, but what's left when the symptoms are still present and everything else has been ruled out.

AlexandraLynch

I've got fibromyalgia and arthritis, Raynaud's and some odd endocrine symptoms that I haven't had checked out because I'm an American.

Eating light and less processed seems to help a whole lot. I suspect that losing weight will too; or, at least, there won't be so much of me to lug around! and it will be easier on the arthritic foot joints.

I have the weightbearing issues to work around, too. I do yoga twice a day as a necessity to keep from stiffening up, and try to walk for about thirty minutes three times a week. That's what I can do, and I accept that. It's better than the doctor said I would after the initial foot injury, which makes me quite happy.