Chronic Fatigue/ M.E

[Swinks]

Does anyone have any experience of this? I have a condition with my mobility that with this alot of people get CFS/M.E. I have spoken to a Dr i work with recently and family members who are medical professionals and they all say the same that they feel i have CFS/M.E.
I am on crutches to get around, and i am a person who previously could run half marathons and climb 46 flights of stairs for charity despite other chronic conditions. I am now looking at getting a wheelchair for extended periods of activity like shopping etc.
I told my GP a while back that i was completely exhausted all the time, that if i slept 9 or 14 hours at night, i didn't wake refreshed and half way through the day i'd have to have a sleep to be able to function- she tested me for other stuff which came back negative then nothing more was said. I have alot of the other symptoms such as poor body temperature control, bowel/stomach problems, concentration problems etc. I just don't know how to approach this with my dr. Several professionals have all said it points to the same thing, and i would for once like to get it sorted out. The night before last i slept 13 hours. then at lunch time i slept for 2 hours. by 9pm i was asleep again. I'm fed up of it
I know you aren't doctors and i'm not looking for professional advice, i'm just wondering where i should go with this?

Any advice would be greatfully received xx

[howling]

i dont know very much about m.e or cfs but have the same symptons as you!!! i have gone from having insomnia to now not being able to get enough sleep. my doc said it was my meds. im on ad's. had a full body mot and nothing came back. im due to see the doc again so i think the only thing you can do is keep pushing your doc and say what you think it is. like the idea of wheels, its important to stay as mobile as you can. sorry im not much help so hope you can get a solution to this. its awful so do understand how you feel about it. xx

[Swinks]

Nice to know there is someone out there in the same boat. I used to be a really bad with insomnia, i'd be up for 2 weeks straight then sleep for 2 weeks straight. I do try stay as mobile as i can but i'm on really strong pain killers and my joints are quite bad now especially my spine. I've been told to try and pace to try and rest and keep mobile, atleast if i get a wheelchair i can push it and then use it when i need too. It won't be a case of using it all the time. It scares me though. I'm not even 20 and facing this. I want a life

[Savannah]

Hi Swinks. I've got it n it's b***** awful (as you've found out). I've been dx about 5 years though I've been ill longer. As the years have gone on I've got worse n quite often have to take to my bed after doing tiny bits of activity (I washed 5 things n was exhausted the other day).
I'm currently doing a CFS/ME course and it's helping (well I'm more aware of how knackered I get anyway). There's some info here http://www.tin.nhs.uk/local-networks/chronic-fatigue-syndrome-network/management-information/ that's really useful.
Also try www.afme.org.uk

Hope you find the stuff useful. It's all about pacing, sleep management n eating really healthily.

[Swinks]

Thanks Faithy. It's a little scary it being real. But i do believe it's the right dx. Since my anaemia etc is all under control theres been no explanation for it and it's just got worse. I'd visit my best friend in hospital and after all the travelling there i'd struggle to stay awake

Thank for all the info and advice, being sent to a specialist in M.E so may get more answers xx

[Savannah]

Big hugs. Hope the specialist can help (let me know if he comes up with any useful suggestions). Could have done with an electric wheelchair today...been in so much pain I could barely walk

[Tania]

I was diagnosed with it when I was about 21. I was exhausted and never seemed to feel like I'd slept even though I had for hours and hours. Some days my muscles would ache as if I'd been bench pressing weights but had only actually brushed my hair. I would force myself to try and get motivated to go out, get ready and then never actually make it out as the getting ready just wiped me out. I stumbled over words all the time and would read a paragraph and have to re-read it many times before giving up totally exhausted and still not having retained a thing I'd read. As a student also having a part time job non of that was ideal! I wold have a 'viral illness' quite literally once a month and be signed off by the doc for a week from study and work. I ended up having to repeat a year at uni not because I hadn't passed, because I passed everything with good grades, but because they couldn't pass me regardless with such allow attendance rate. Work were excellant, really understanding and gave me a glowing reference when I left, but for a part time job I had a 30% absence record! Someone suggested to me it could be m.e and in the end I went to the doc and was just forceful.

I pointed out I was just not right, made him look at my attendance rate at the doctors and that they were all for virus's (your immune system is actually over active as opposed to nderactive so your body overdoes the production of antibodies when it comes into contact with something and instead gives you a dose. The outcome of my Rubella booster was interesting!). I said he had to refer me to somewhere. He did a full (negative) blood test and sent me for both a chest X-ray and a psychology assessment followed by an occupational therapy appointment before they finally diagnosed m.e. it was at a time when it was only really just becoming recognised and I got a place on a course at st.james hospital in Leeds, who were pioneering chronic fatigue management. I was very lucky to get it. They taught about graded activity.

Basically learning your fatigue levels and how to balance activity against rest periods so you can actually attempt to plan a day. I'm now 18 years on. I have the odd bout of feeling wiped out and some 'bugs' can hit me harder than they might others but on e whole I lead a very full and active life. Things got gradually better over a five year period then seemed to settle. When I got my diagnosis I cried for two reasons. The first was because I didn't want to be ill. But the second most important was that I had some validation and realised I wasn't cracking up!! There is no actual 'test' for it. Things would be a lot simpler if there was. It's a process of elimination and a thorough review of the symptoms.

My advice is get back to the doc, lay it on the line just how bad things are and that they cant just be left and push to be referred to someone that specialises in m.e.

X

[smiler]

hugs hugs

i dont know much bout it
i know people with the illnesses and its a b*****d
wish i knew what to say
hope oyur able to et some help

hugs hugs

[Swinks]

Thanks guys i've been referred to a specialist in M.E and just waiting for an appointment, they have a grading critera and i'm down as moderate- severe, the only thing that they couldn't tick was that i'm still in uni (just) i'm a little scared

[angeldevil123]

Yep I am in similar position myself on/off for quite sometime and docs are looking into possibilities.
My advice would be to stick to a limit you can realistically manage and learn to read the signs your body is exhausted.
google pacing and it should help you. Do you have a calendar or diary on your mobile etc, make use it of it to note things down and use it to schedule everything in.  Remember you are not lazy you are ill