M.E. or chronic fatigue syndrome info plz

Murtle

my ex-MIL had diabetes, two of the problems it caused her were that it made her tired and she put on weight. She eventually accepted that she had to have a mid-afternoon nap! This was when it was being monitored and maintained with drugs and food. There were other symptoms too, but they were the main ones!

Good luck, monitor how you feel on the diet, and if it helps, that's a good thing, if it doesn't then speak to the GP.

Blood sugar drops make me very tired and I can go from wide awake to asleep in less then 5 minutes!!!

Stink_Pod

Sorry, this is a long one!

This is my first post here, until now I've been a lurker. However, reading about the number of people who have CFS/ME or are caring for someone with it, I felt compelled to tell you my story, in the hope that if it helps just one of you, it will be worthwhile

At the age of 29 I started getting tired, very tired. Frequently so tired that I couldn't remember if I had eaten during the day, or if I had walked upstairs I couldn't remember why I was there, once upstairs would have to fight the urge to get into bed, even if I had just got out of it. I had never known tiredness like this - I did my best to ignore it until one day I woke up in my car, thankfully parked in a layby, but I couldn't remember why I was there or how long I had been parked. The marks on my face, made by buttons on my sleeve suggested I had been asleep several hours, all I knew was that I was still very very tired and now quite scared. My doctor said it was a combination of a highly demanding career leading to nervous exhaustion. I was duly signed off work for 2 weeks and told to do "nice things, eat well and rest, it'll pass".

A year or so passed and I never felt well, always feeling as though I was running at about 70% power, most worrying for me was that I was unable to concentrate. My career was becoming all I could manage - weekends and evenings were for sleeping not socialising. Again, another visit to the doctor who ran blood tests for diabetes, thyroid, glandular fever etc etc etc. Nothing. "Go home, book yourself a holiday, don't skip meals, and come back in two weeks if you're not better"

At 31 I was convinced I had either cancer or a brain tumour, I was so weak, tired and depressed. Too afraid to tell anyone, I carried on as much as possible, but life was slipping. I was forgetting to do important things and I would attend meetings but only retain about 50% of the information. Then one day in early January my body decided it would make me take notice; I woke up with a rash that looked like sunburn, really it looked as though I had been left on the beach all day, without suncream. My skin hurt, my joints hurt, my knees, ankles and wrists were swollen and painful to move. I remained in this painful state, on and off, for over 5 months before getting a diagnosis.

The medics say I have either have Lupus or Stills Disease. Both of which result in on-going CFS and fibromalgia and there is no cure at present. To date my symptoms have mimicked both illnesses, other than the severe bruising associated with Lupus - for which I am grateful!

Having been in bed (asleep!!) for over 5 months my spirits were low and so was my energy. After diagnosis I was treated with steriod injections, anti inflammatory pills, antibiotics etc etc, but none of it made me significantly better. For the following year I slept lots, hurt lots and generally got very very depressed. As I've said on numerous occasions, I was so tired, if someone had told me eating cat litter would've made me better, you would've found me at the litter tray with a spoon!

I've always believed that "every action has and equal and opposite reaction". At age 31/32 my body just couldn't be left to malfunction - there had to be a reason and alternative way to get well again. So I started reading and making lots of notes (those forgetful days had not gone away!!) Much of the homeopathic/naturopathic information I read suggested that auto immune illness can be associated with a poor diet, resulting in poor liver function. I thought this was an insane suggestion, I wasn't a heavy drinker etc etc.

I enlisted the help of a professional - a Medical Herbalist who gave me herbal tinctures that would support my recovery and further advice about my food choices. This was the best thing I have ever done for my health.

So.... long story short..... I have made some radical changes to my eating and drinking habits. Due to the tiredness I wasn't eating regularly and in hindsight, nor was I eating for nutrition. I was eating 'comfort foods' to compensate for the fact that I was miserable and feeling ill, although healthy(ish ) they weren't the foods my body needed to repair itself.

From then on, food became my medicine, I started to really think about what was going into my body and whether it was good for me. Initially I had to rely on my husband to prepare the meals I had planned as I was still too tired to do all of it myself. However, within a three weeks there was a noticeable improvement; my concentration levels were up, my sense of humour was returning, joint pain was decreasing but best of all, the brain fog was lifting and I could go a whole day without needing to have a nap. It was like someone had switched the lights back on. _party_

To bring you right up to date, I still have the odd tired day - but I can usually pinpoint why - either my sleep pattern has been changed or I've wondered off my eating plan, neglecting to give my body the fuel it needs. I still take a couple of vitamin/mineral supplements once a day and a herbal remedy three times a day. But... the good news is, I'm feeling well enough to cope with life again. No fog, no afternoon naps, no pain.

I have kept a journal of everything that I've eaten, how I felt and how much sleep I've needed. Far from being a chore it has been my way of tracking my progress and noticing trends. The first entry describes how low I felt, how I sobbed my way through my first herbalist appointment...... Today's entry is somewhat different.... "I've ironed my tennis whites, for the first time in a long long time I should be able to get out on court this weekend. I really can't wait. I am smiling at the mere prospect of being out there... " Getting a racquet back in my hand will be a huge milestone for me. :j

So, for anyone out there who is suffering with one of these miserable conditions, there is some hope - you really don't have to spend the rest of your illness in that 'fog' of CFS. Making the changes isn't easy, but trust me, it's worth it. I thought my health was gone forever - I was wrong.

Good Luck on the road to recovery.

Jo

PS: If anyone wants to know more about my diet/illness feel free to ask here or drop me a PM if you'd prefer.

EDIT by board guide mini to remove link

blue-kat

Hi Loopy
wherabouts in the country do you live?

as a result of the govt working party on ME/CFS there are various centres being set up, maybe there's one in your area?

I've got ME too, had it a long time, and 2 of my kids have it too.
I've been doing wheat free GI-aware diet for 3 yrs and it's helped a bit.

Dr suggested I watched the GI of foods as was at risk of developing diabetes, but then I gained a lot of weight over the years. I've lost 5 stones since changing diet which has got to help overall health. Still got the usual yucky ME though.

I had a fit-like episode which may have been triggered by combo of low blood sugar + stress.

I am currently trying gabapentin for pain relief, been using co-proxamol for years but it's being taken off prescribable list

I do think diagnosis is important, even though there isn't a cure, but there are management techniques. Plus diagnosis is important for benefits. Being in limbo and not-knowing is the pits.

I am Trustee of https://www.SheffieldMEgroup.co.uk, which runs various services for people with ME : an info line, info packs, a help line, conferences, etc which *anyone affected by ME/CFS* is welcome to avail themselves too (plus extra services for members).
bests
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blue-kat

blue-kat

M.E.2 : thanks for mentioning http://www.easytoswallow.co.uk/
exactly what I needed - cheers ! :beer:

I was just asking on the Old Style board about ideas for food for my underweight teenage son who has ME and finds sitting eating hard work on bad days.
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blue-kat

M.E.2-2

blue-kat wrote:

Hi Loopy
wherabouts in the country do you live?

as a result of the govt working party on ME/CFS there are various centres being set up, maybe there's one in your area?

I've got ME too, had it a long time, and 2 of my kids have it too.
I've been doing wheat free GI-aware diet for 3 yrs and it's helped a bit.

Dr suggested I watched the GI of foods as was at risk of developing diabetes, but then I gained a lot of weight over the years. I've lost 5 stones since changing diet which has got to help overall health. Still got the usual yucky ME though.

I had a fit-like episode which may have been triggered by combo of low blood sugar + stress.

I am currently trying gabapentin for pain relief, been using co-proxamol for years but it's being taken off prescribable list

I do think diagnosis is important, even though there isn't a cure, but there are management techniques. Plus diagnosis is important for benefits. Being in limbo and not-knowing is the pits.

I am Trustee of www.SheffieldMEgroup.co.uk, which runs various services for people with ME : an info line, info packs, a help line, conferences, etc which *anyone affected by ME/CFS* is welcome to avail themselves too (plus extra services for members).
bests
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blue-kat

Hi blue-kat,
Was it just the one "fit like episode" as I suffered those for a few years (thankfully not now) and my GP put it down to the stress of M.E. The one time I was blind for I think about 40 mins (but you know what my memory is like so without asking OH I will say about 40 mins)They stopped when I realised I had to stop fighting it and change my lifestyle.

blue-kat

Hi ME2

yikes at going blind ! :eek:
must've been scarey for you...and your OH too.

what changes have you made to your lifestyle?

I have frequent uncontrollable electric shock spasms/twitches, def. worse when I don't rest enough, but you know sometimes life happens ! I've been checked for epilepsy and MS ( MRI scan and a flashing light test) but the cause is unknown - 'just ME'.

I also keel over every so often, not exactly faint, just can't stand/sit any longer, and body goes on shutdown.

Life is getting in the way of my rest schedule + sensible pacing at the moment, as hopefully will be moving to a house with downstairs loo and somewhere to store my mobility scooter very soon. Currently anxiously waiting to Exchange Contracts, and planning everything. We're having the removal company in to pack as I'm in a bad enough state as it is.

I went for an accupuncture + chinese herbs treatment last weekend as was feeling desparate about the pain. It set me back £65 and don't want to take the herbs, it eased the pain but feel bad about the expense as it cost over the odds.
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blue-kat

loopy_lass

ive tried accupuncture but it made me take a fit like episode.... since then ive have 5 or 6 of them, been tested for epilepsy & nothing showing... interesting thoght its related to ME... usually my IBS makes me faint! so changing the diet will help all ways... whateve this GI diet is ill give it a go...

thanks loops

scrimping_steff

I hope the diet works, but just a warning I went on the slimming world diet and was on it for 6 months, my symptoms escalated, especially panic attacks. Have been off it about a month and am already feeling much better and have more energy. So keep an eye on it. Thing is if it is diabetes or low blood sugar that diet should improve it, maybe helpfuly in diagnosis.

Cat72

Hi
My doctor has recommended me to the practices dietician as I have been having problems with a lot of foods I have been eating ( I spend about 4 days every week vomitting etc due to food intolerances ). If you have a sympathetic DOC it is worth asking about as I have been doing hundreds of wheat free dairy free, holistic diets etc and too be honest I dont really have a clue ! The ME association do produce a book about £ 6.00 which was written by someone with ME to help them .But everyone varies so I think some expert advice is best as you might end up doing yourelve some damage plus special diets are soooo expensive.
I have to wait a few months but I appreciate the chance of some good advice.( My doctor warned me I mgiht be harming myself by cutting out all these foods and not eating foods that I require- ie having a totally unbalanced diet) .

loopy_lass

ive cut sugar out of approx 90% of my diet, feel more shakey & unsteady now than before!... so... had a couple ... ok had 4 squares of chocolate last nite & was shaking even more.... tried some more this morning... and started shaking again.... wonder what on earth is going on....

loops