Anyone suffer with ME?

[NewLeaseofLife]

Just had a chat with ex h who was researching into ME and he said that he thought I fitted a lot of the symptoms. I lookd it up and seem to... Am going to book to see Doctor asap but wondered if anyone could help me initially? Am I just fitting myself into the symptoms????

Hi all,
Feeling very crap today. Think the dubling of the anti d's isnt helping at all. Havethis horrid kind of cramp all up and down my spine, making me feel very sick...

I have read bits of all you posts but not read properly but from what I have seen you are all quite amazing and thank you so much for your support.

I plan to sleep as much asi can over the next week or two and catch up slowly on the housework etc, get things straight.

Have a great weekend.
x

you too - take it easy

Hi all

I have just been diagnosed with ME after 6 months of being fobbed off with 'its a virus' I had a severe throat infection back in January and since then have had recurring bouts of exhaustion, left sided neck and headaches and my limbs feel like lead weights, this past weekend i have struggled to get out of bed and funcion in any sort of way. I have had many blood tests all coming back negative. I finally saw a doctor who diagnosed me with Post Viral Fatigue Disorder.

So what now? My Dr said that there was nothing that could be done and i simply had to sit it out, that it could take months or years. He did not refer me to a specialist, is this something i should push for?

Sorry if this is a bit of a ramble, i am relieved to have finally be diagnosed but feel like my gp has just said this is it, nothing we can do, off you go

hi puddy
yes its a tough one.imo gp is correct.
you have to rest and do as little as possible while still trying to do something each day if you can.peace and quiet and no pressure are all key for me.
I think you will find most people on here and in RL have been ill for years with this, have tried many things to improve and not much makes a difference.
It does improve slowly over time I think.
Pacing yourself is probably the way forward.
Don't overdo it otherwise you will feel a lot worse.
There are various supportive organisations who can offer advice - google ME if you haven't already.
Are you working ? Claiming benefits yet?
You may be entitled to Incapacity Benefit and DLA.
BTW I have never seen a specialist but I am pretty much a textbook case (all the symptoms with no other health issues so after a while it was pretty clear this was what was wrong)other people I know have but I can't see any benefit in it tbh.
Horrible when you are first ill as its an awful lot to take in - good luck.

Hi Sharbie

Thank you for replying so quickly, it feels like a double edged sword at the moment, i feel vindicated that i have not been making the last 6 months up but am terrified of where i go from here.

Some days i find i have no choice to rest as i physically cannot find the strength to do anything other than move from the bed to the sofa. I get so cross ith myself as i SHOULD be able to do things. I feel like i am wasting my life/my childrens lives.

I work part time at the moment, i have spoken to my employer and we are going to have a meeting to get plans in place so that i can try and continue to work as much as possible, some days i almost feel like nothing is wrong, then all of a sudden i just get hit with overwhelming headaches and tiredness and just seem to stop functioning . I am lucky that i have a very understanding and supportive employer.

Hi all, my mum has ME - took ages for diagnosis too...but she was recommended the perrin technique and I wondered if anyone else had tried this/ heard of it? "We at the Perrin Clinic believe that Chronic Fatigue Syndrome/Myalgic Encephalitis and Post Viral Fatigue Syndrome is a physical disorder that leads to a build up of toxins within the brain and the spine. The Perrin Technique? has been developed to diagnose CFS ME by identifying definite physical signs and to treat the disorder by improving drainage of these poisons from the central nervous system."

Puddytats - yes do ask for a referal to a specialist, either a ME specialist or if there isn't one locally then the Rheumatologists tend to look at ME as well. I have seen a specialist and it has helped with getting further information. not everything on line is accurate although many of the charities/support organisations seem very good. everyone has there own theory and there is a lot on the linternet that can mislead you. If possible ask to be referred to an occupational therapist - they are excellent at helping provide techniques for pacing and additioanl support at home. As Sharbie has said as well there may be benefits eg DLA you can claim but from hearing about others difficulties this can be very hard. On good days don't try to do too much because you are feeling good other wise you will end up having more bad days!!
Is there anyway you can work from home for the same employer? The other thing to consider when you are in work is your working conditions. many EM sufferers cannot tolerate flourescent lights well or "noisy" environments - can you have the lighting adjusted or work in a quieter environment.

Mrs S

sorry popmum, but this really sounds like woo to me. There are an AWFUL lot of people trying to make money out of people with M.E and I think you have to tell yourself that if it was a cure, then we'd all know about it and doctors would be recommending it.

Anytime someone mentions draining toxins, etc. I steer well clear.

well said bathbuns - I am not as polite/diplomatic as you on this subject .

bathbuns and sharbie - i would tend to agree, googled the clinic and had a quick scan. There is only the one research paper and no empirical evidence on there of success. i suspect the success they may have had is the same as for other techniques that help promote relaxation - i know that if i were to have massage regulalrly i would feel better some of the time as well. However everyone is an individual and different things work for different people. i have tried a fair few tried and tested and also wacky techniques (cryotherapy shorts!) - some of which help a little and some of which don't. i think a lot of it is down to the individual patient as to what helps ease their symptoms. none of it is a cure though and that's what we are all searching for.

Hope eveyone is having a good day - I am really struggling with muscle and joint pains at the moment as well as excessive tiredness and lack of concentration. Glad I am in a really quiet job now - couldn't cope with being busy. i am however grateful i can still get into work. always something there to be positive about!!

I had ME and was completely bed ridden for over 9 months. After that still very poorly for a few years. But I did get better with LP. Now back at work and have an active life - just got back from walking the dogs after being at work all day and went for a run this morning.

I did not get better straight away with ME but it took about a year for all the symptons to go but that was a while ago so it does last!

I do not want to be controversal but there are so many suffers with ME that are not able or prepared to try treatments yet still have an opinion on how they work or not. I didn't care how LP worked just hoped that it would as I had no life before it and did not want to continue as I was. I wanted to be back being the Mum to my children and doing the job I loved.

I have also tried other things NLP, Reverse therapy, acupunture, CBT, pacing, anti depressants etc non of which helped me long term. The specialist that I saw for ME encouraged me to try LP as many of his patients had done so and got better. He did say he did not know why it worked but he had seen for his own eyes that it did.

I am saying what happened to me and do not in anyway want to upset others especially if you are suffering from this awful awful illness.

I too have had to fight with Drs etc but as my initial illness was very severe they had no choice but to believe me eg I passed out if I sat up! Was unable to speak and swallow had to be tube feed etc etc.

I wish you all well and hope that you can gain hope that something will help you to get better - don't stop looking!

Can anyone advise me? quote from puddytats "Some days i find i have no choice to rest as i physically cannot find the strength to do anything other than move from the bed to the sofa. I get so cross ith myself as i SHOULD be able to do things. I feel like i am wasting my life/my childrens lives.

some days i almost feel like nothing is wrong, then all of a sudden i just get hit with overwhelming headaches and tiredness and just seem to stop functioning

I had to quote you as this is me! This is exatly how I feel, I have been suffering with exhaustion for months now, I finally went to the DR last month had blood test done and I am anemic hb 11.1 but I think it is more than than anaemia as I cannot function most days I am too exausted to do anything,

The last month it has gotten worse to the point I feel too weak to go into work, (I'm full time in very busy job on my feet constantly 12 hour shifts)

my head hurts and my muscles feel weak, Sometimes I feel like I'm going to collapse. my brain feels foggy cannot concentrate on anything. This is ruining my life and I know there is something wrong with me! even little tasks like putting washing out exhaust me that I need to lie down after. Does this sound like ME?

me23 Yes it does but also if you read the beginning of this thread it could also be many other things. Hb11.1 isn't that low but will make you feel tired and run down. I would usggest you go back to your Dr with a list of how you feel, maybe keep a diary for a week of activity vs symptoms and ask for further investigations. It could be thyroid or just exhaustion from doing to much. however it could also be ME. there are some links further up to some of the ME websites with more infomration on. Brain fog and muscle weakness are common symptoms of ME so make sure you mention these to your GP. good luck and try to have a restful weekend!

Hi all,
I havehad the blood tests back and tested positive for glandular fever... I had a really bad sore throat back in March and turns out it was glandular fever. The thing is that it can take up to two years to leave he system! That is why I have been feeling so awful (honestly thought I was going insane) (well more than usual anyway lol)I have been signed off work since I saw the doctor, it has made such a differance. They will test again and if I am still as exhausted etc when I test negative the will then look at CFS.

I also have an alcohol intolerance!!!!!!!! . Dont have sex, given up smoking, trying to diet, im skint, tired and NOW cant drink!? Think I was very, ver bd in a past life!

I hope you are all having a good weekend.
x

Hi NewLeaseofLife good to hear from you again and glad you have something identified. Sorry you are not feeling any better though. You weren't bad in a past life - this comes from being too good and trying to carry on working when you were clearly unwell.! You will get better - try and rest and recover as much as you can.

Oh you are lovely, thank you. Feeling very useless... Thank god for my mum, she has been a real saviour. Hope you are all ok. X