M.E. anyone? Experiences and advice please!

[mynametoday]

I was really quite ill a year or so ago and it was thought I had glandular fever but the test was negative (when it eventually came back!). Some abnormal liver results came back though which was presumed to be from long(ish) term anti-depressant use. Since I wasn't feeling too low ('just' ill/shattered) I was taken off them. I honestly don't feel any lower without them (it's been some months now).

I've still felt continually shattered though and generally unwell as well as all I can describe as fuzzy around the edges. I have also put on even more weight as i have found myself eating to try and give myself energy.

I have been pushing myself assuming that it had to be in my head since there wasn't another physical cause (although I am peri-menopausal). I have managed to keep down a (part time) job during all this but sleeping as soon as I get home before getting my dc and then sleeping as soon as they are again.

My gp now thinks I have ME and has referred me to an ME/CFS clinic.

ME is quite rare though isn't it? Surely I can't have it. I havent got a choice but to keep going.

Thank you in advance for any advice. x

Mynametoday - bear in mind, GPs in general, however nice and supportive they are, know very little about ME. My 17 year old DD has had ME since April 2007 (currently housebound and has been bedbound)and the level of lack of knowledge in the medical profession is staggering imo.

Doctor's diagnose ME by eliminating all other possible causes. (Basically, when they don't know what is wrong with patient).
You really have to rely on alternative medicine and listening to your body as conventionally the only medicine on offer is AD! I did have ME 9 years ago and seeing alternative doctor is the only thing that got me on the road to recovery. I don't want to preach what supplements, herbal remedies I took, mainly because it may not work for everyone and they are expensive. Chocaholic, it must be heartbreaking watching your DD in this position. Just don't give up hope.

hi im 22 with a 3 yr old and a 1 yr old and i was diagnosed with me 2 years ago.the last 2 months have been my worst ever. iv been refused a disabled badge as its not perminent !!! im still waiting to see if i can get incapacity or disability allowance . im going to a social serveces nursery to introduce my kids to the staff today as they now agreed to 2 hours in the afternoon so i can rest. no 1 who hasnt had the illness understands and i hate having to 'prove' im ill all the time.

mynametoday Do you have any pain as well?

look here

There are a few of us here that suffer from it, your Symptoms are very familiar.

It does sound like M.E. I was diagnosed in 2003 and at the time was very bad. I couldn't fight any bugs and got one after another and they just completely exhausted me. I did lots of natural medicines, went to lots of doctors and "specialists" but nothing really helped until another friend with M.E. talked about life management. I cut down on work, I tried to learn my limits and pace myself, I ate small and often, I accepted that there were things I couldn't do etc, etc. This helped immensely and by the time I had my first ds I was able to function fairly normally albeit getting tired a little easier than most my pairs. I have managed really well but since getting pregnant with number 2 have been a lot worse again. I know that exhaustion is part and parcel of pregnancy but it is definately deeply influenced by the M.E. I have given away the activites that I can, am only working one day a week and have ds with a childminder 3 days(I was working 2 and having a housework/shopping day) I really struggle in the afternoons with ds at the moment as I am just too exhausted to do much with him and he is used to a lot of input. Any rate, what I wanted to say is it can come in waves and there will be times that are more manageable than others. Do what you can to balance your life to a level where you can start to recover a little and then very slowly build back up again (this can be a slow process) Accept your limits and just make the most of what you can do and when you can do it. All the best ym

I would deffo recommend the Lightning Process.
I had ME for over three years and initially reluctant to try this treatment as sounded a bit cult-like.
However I was encouraged to learn of people doing the course and fully recovering and so decided to do it earlier on this year.
I am completely better and have returned to full time work.
Previously I could barely get out of bed to take my children to school and then spend rest of day resting 'til pick-up time.
The downside is I am now to busy to mumsnet.(I used to be on here all the time -under a different name as didn't have the energy for engaging much with real life.)

Hi..I too have M.E and have beena sufferer for 21 years on and off. I've managed to work in that period but atm i'm off sick and have been for 18months.

I'm particularly bad atm, not able to get out of bed during the day most days.

Luckily i have a very supportive DH who looks after DD and i can just rest if need be.

I'm currently seeing a psychologist at the M.E clinic.i have been under the M.E clinic for the last 18months. I previously saw a physiotherapist to try and build my fitness up and learn to pace myself...very difficult! (for me anyway)

It is a very frustrating illness and a misunderstood one. I have learnt that you do have to listen to your body and rest when you need to. I sleep an awful lot atm. But i know i will feel better at some point, it is a very up and down illness. It's difficult to manage.

This is the latest i've been up for absolutely ages, and that's probably only because i have slept all lst night and all day today.I was still dead to the world when my DH came in from work at 5.30pm. Got up about 6.30pm this evening.

I'm also on a fatigue management course which is supposed to help you manage your fatigue (not quite working with me yet obviously!!)

It's good to know there are other people out there with the illness because like you say you often feel you have to prove you are ill because you have no abvious illness! I'm always being told i look well but my response to that is that they'd look well if they slept for 20 hours a day and put a bit of make-up on!

I try not to dwell too much on it because there are loads of people with much worse things wrong with them but it is very frustrating.

I hope you feel better soon xx

What type of clinics, or consultants etc can you be referred to? What type of doc specialises in ME?

Hi LWP - I am under a clinic that is designed specifically to treat M.E.You have to be referred to a M.E clinic by your GP. It has to be proved that it is M.E (as well as it can be proved as everyone with M.E knows there is no specific test for M.E, the Doc has to illiminate loads of other things first)..

I suppose it depends if there are such services in your area. But i have to say they are brilliant.I think it's just reassuring to know that you have a real illness and someone is taking you seriously.

Check with your doc if you have such facilities.

How is everyone else?xx

Hi, sorry i've not been around. I've been knocked for six by a bug. I've given in and have actually taken today off work (and some of last week) as i'm so very exhausted and need to shake this off.

The clinic i've been referred to as an 'me clinic' so i've been told. I've still not got my appt through.

I do feel guilty complaining as I know it could be so much worse. I also keep trying to do more than I should and I know i'm making myself worse. I'm finding it hard to accept it if i'm honest.

Thanks so much for your kind words and I hope this makes sense!

mynametoday - so sorry to hear you are under the weather? What sort of bug have you got? I tend to suffer a lot with my throat and glands and if i get a cold it knocks me off my feet. I have the flu jab every year now because i have been so ill with that in the past and it has took me weeks to recover.

Hope you feel better soon xx

How is everyone? x