A short sad history of ME/CFS

chopandchange

cepheus wrote: »

I only became better once I stopped exercising against medical advice.

I'm interested to know what you mean by this, but the ambiguous wording is somewhat unfortunate, as it's not clear what you mean. Do you mean that:

1. Against medical advice, you stopped exercising, and subsequently became better (i.e. the medical advice had been that you should exercise)? Or

2. You stopped exercising, which you had been doing against medical advice, and subsequently became better (i.e. the medical advice had been that you should not exercise).

It may sound like I'm tying myself in knots, but that's the effect your sentence had on me when I was trying to figure out what you meant.

prettypeach_2

chopandchange wrote: »

I'm interested to know what you mean by this, but the ambiguous wording is somewhat unfortunate, as it's not clear what you mean. Do you mean that:

1. Against medical advice, you stopped exercising, and subsequently became better (i.e. the medical advice had been that you should exercise)? Or

2. You stopped exercising, which you had been doing against medical advice, and subsequently became better (i.e. the medical advice had been that you should not exercise).

It may sound like I'm tying myself in knots, but that's the effect your sentence had on me when I was trying to figure out what you meant.

I'm wondering if cepheus meant (s)he was being advised to excercise (as that's one of the things NICE is advising doctors to 'prescribe' for M.E.) and that the excercise was hindering, not helping, the condition?

TOBRUK

Around 10 years ago I tried the 'pacing' thing that they were on about - the gradual excercise. Back then the M.E. wasn't half as bad as it is now. However, it made me a lot worse and they told me to stop doing it as it wasn't helping.

Mojisola

TOBRUK wrote: »

Around 10 years ago I tried the 'pacing' thing that they were on about - the gradual excercise. Back then the M.E. wasn't half as bad as it is now. However, it made me a lot worse and they told me to stop doing it as it wasn't helping.

Pacing is not the same as graded exercise although I know of cases where physios and GPs have used the terms interchangeably.

Pacing is where you listen to your body and make sure you never overdo it. That might mean that this week you hardly get out of bed, next week you manage to walk round the garden every day and the following week you have two days of rest, one visit to the shops and some light gardening. The aim is to use only about 90% of your energy so your body has a chance to heal itself. What you can do obviously depends on what your underlying level of ME is.

Graded exercise is a system of gradually increasing your energy output, week by week, regardless of how you feel. The theory is that you "work through the tiredness". Many people have been made worse by sticking to a graded exercise programme.

prettypeach_2

Graded excercise for M.E. is such rubbish. It's pushed because the view that M.E. = depression is so prevalent among doctors.

TOBRUK

Mojisola, Sorry yes I remember I was put through the graded excercise and was seeing a physiotherapist years ago - this was a disaster and did more damage.

I have also done the pacing as you described and I suppose I am still trying to do this but my body hasn't healed itself.

sunnyone

prettypeach wrote: »

Did you get tested for vitamin and mineral deficiencies privately then Mrs P?
As far as I know, the NHS don't do this so maybe everyone can't easily afford to go down this route.

These tests are done at the drop of a hat if you have any symptoms that may suggest you need them, my son has them 4 times a year or more if hes sleeping a lot.

prettypeach_2

sunnyone wrote: »

These tests are done at the drop of a hat if you have any symptoms that may suggest you need them, my son has them 4 times a year or more if hes sleeping a lot.

No they're not.

Bloods are routinely done for symptoms which could end up being diagnosed as M.E. and which can also be symtptoms of deficiencies, but not bloods which test for vitamin and mineral deficiencies.

mardatha

Try asking for them. My doc does anything I ask for in the way of blood tests. She says maybe just once, we will find something that will help with the ME.

prettypeach_2

mardatha wrote: »

Try asking for them. My doc does anything I ask for in the way of blood tests. She says maybe just once, we will find something that will help with the ME.

I think I've gone as far as I want to with doctors and M.E. mardatha.