A short sad history of ME/CFS

texmex

I too have ME and sleep apnoea, the ME was diagnosed around 16/17 years ago after many different tests after having a throat infection. The sleep apnoea was diagnosed a few years later, and again the two illness don't mix well.

In the last few years I have now been diagnosed with a handwriting stammer, think of someone with a speech stammer and I have the same trouble putting pen to paper, which causes me loads of problems when out and about and have to fill in forms etc, and now I have a back problem and am waiting to go for an operation in October to straighten my spine.

But still I try to carry on as much as possible, without all of these problems getting in the way, and some days it's just not possible.

clouty

Hi texmex, sorry to hear you've been ill for so long. If the ME came first, then it may well be the cause of the sleep apnoea, many people get that a few years in to ME. The handwriting stammer is likely caused by the brain inflammation of ME, cognitive difficulties are part of our illness, and tremors are common.

The one thing that most ME people agree on is pacing, staying within your energy envelope. Not overdrawing on energy. If energy was money, our bank would charge us 200% a day interest. Look after you.

lyniced

Getting right diagnosis can can take many years, particularly with neurological conditions - mine took over a decade. After years of strange symptoms I was told there was nothing wrong. AFter more years I was finally given the diagnosis of MS, with a huge question mark, because the tests were inconclusive. So I spent another 9 years thinking I had MS only to be rediagnosed last year with FA. And this only came to light when my brother started to get the same symptoms. FA (Friedreich's Ataxia) normally affects peolel between the ages of 5-15, but both my bro and I had late on-set (in our 20's) so it was dismissed from the initial tests I had. Luckily for my bro he saw a genetic (it's an autosomnal recessive genetic condition) neurologist who was able to diagnose his condition quickly.

Mrs_P_Pincher

I was diagnosed with CFS/ME three times, twice by consultants and once by a GP.

This was incorrect. My blood tests showed quite clearly that I had a Vitamin B12 deficiency, a Vitamin D deficiency, a serious ferritin deficiency, a levekl of adrenal fatigue and an underactive thyroid.

With a range of supplements and treatment for the thyroid issue, I have gone in 18 months from someone who was looking at giving up work, couldn't do housework, couldn't have a social life, all the usual stuff, to being someone who is working full time, exercising , enjoying going to gigs again etc etc.

If you have been diagnosed with CFS/ME or Fibromyalgia, please get your blood test results looked at by someone who knows what they are doing. WHo knows - you could get your life back.

Mrs P P

Trialia

Mrs_P_Pincher wrote: »

This was incorrect. My blood tests showed quite clearly that I had a Vitamin B12 deficiency, a Vitamin D deficiency, a serious ferritin deficiency, a levekl of adrenal fatigue and an underactive thyroid.
...
If you have been diagnosed with CFS/ME or Fibromyalgia, please get your blood test results looked at by someone who knows what they are doing. WHo knows - you could get your life back.

Unfortunately for me, fixing the vitamin deficiencies and the anaemia didn't fix the chronic fatigue; what caused my fibromyalgia was something else entirely. But it's a good suggestion.

clairibel

Mrs_P_Pincher wrote: »

I was diagnosed with CFS/ME three times, twice by consultants and once by a GP.

This was incorrect. My blood tests showed quite clearly that I had a Vitamin B12 deficiency, a Vitamin D deficiency, a serious ferritin deficiency, a levekl of adrenal fatigue and an underactive thyroid.

With a range of supplements and treatment for the thyroid issue, I have gone in 18 months from someone who was looking at giving up work, couldn't do housework, couldn't have a social life, all the usual stuff, to being someone who is working full time, exercising , enjoying going to gigs again etc etc.

If you have been diagnosed with CFS/ME or Fibromyalgia, please get your blood test results looked at by someone who knows what they are doing. WHo knows - you could get your life back.

Mrs P P

This sounds like me, i've been diagnosed with ME but symptons were changing and going worse, legs not working and other scarey stuff.

So i decided to take vitamin d to see if it lifted the depression and i've felt much better. Just bought some B12 as have read many get diagnosed with ME, MS, CFS etc when its a b12 deficiency. I am self medicating and vitamin b12 has made me feel worse but i have read if you have nerve damage you will feel worse before feeling better.

I'm taking methyl 12 as this is not synthetic and can be dissolved in my mouth for better absorbtion.

Could you let me know what protocol you had/have to help you please just out of interest, i so want to feel better.