Has the forum got M.E again ??

Insomnia !!! The bain of my life, for me its the worst part of M.E, ive had to live with it since i got M.E, ive read up on so much to do with insomnia including sleeping pills (which didnt work) and to this day ive still no answers on getting a good night sleep!! When i was working i would go to sleep the minute i got in from work due to exhaustion only to wake up a few hrs later, but then i was up till the early hrs of the morning only to be up at 7am for work, wasnt a good experience as i had 2 nights in one day and lived like that for years, but even if i forced myself to stay awake when i got in from work as my doc recomended i would still be awake till the early hrs, for me it was the main reason for giving up my job as it was getting dangerous for me to work being soo tired and exhausted, but to this day i still suffer from insomnia and my doc has ran out of ideas on helping me to sleep reguarly, the only thing that helps me cope is chatting to ppl online or my other hobby is watching films, ppl do say thats not gonna help but without that id still be awake and proberly going insane

I wish i had some answers for you donna but i dont

Hope to spk again soon

Take care

Jay xox

Yea, sleeping or lack of is an absolute pain. The one thing we need is long, refreshing sleeps, but noooooo - ME won't allow us to have that. :twisted:

I suppose I have a slight advantage (?) that having done years of nights as a nurse, I've never slept for more than a few hours at a time and have forgotten what a good night's sleep is. I do find though that the Dosulepin

(anti-depressants but used for pain relief for fibromalgia) have a sedative effect and are taken at night for this reason. I'm on quite a high dose now 150mgs, - but I'm certainly not planning to give them up.

Unlike you two, when I'm awake I tend to stay in bed as a) the house is too cold at night to do anything and b) if I do get up the cat thinks it's breakfast time and pesters me and also, my eyes are too blurred to read or type (no, Donna, it's not 'cos of the wine either) :roll: :roll:

Like you Jay, lack of sleep is one of the reasons I have stopped working -

'cos if you know you've got to get up early it makes the whole situation worse. I do hope you get some decent rest this weekend Donna - I know what it's like, you almost dread going to bed - it then becomes a horrible vicious circle.

Yea, hasn't the wind and rain made a mess of things - sorry about your precious bike, Jay - hope it's now sparkling again! I thought I would have a go at cleaning our patio, which is horribly green - I managed four squares and then had to give up.

Donna, you mentioned that you had been referred to an Occupational Therapist - well, I've just read a letter from someone with ME that found it really helpful and enabled them to pace their lives so much better. So it might be worth a try, and then you can report back to us.

Well, I'm still waiting for my cheque from Reader's Digest - it's definately me that is going to come up trumps - I'm in the last 1% to win so I've been told!! Watch this space!!

Have a great weekend.

Katie xx

I can barely read tonight let alone sleep! I came home from owrk and went straight to bed today and slept for 2 hours but kept waking up with pain all over my body! Now I am tired agian but cant sleep. Sometime I NEED to go to bed and rest but then if I do that I cant sleep at night! Infact, I cant sleep even without a pre nap!

I could scream! It's so annoying. ARGH ARGH ARGH

Sorry readers I needed to let off steam!

Donna :cry:

Well all i can say is DITO,,,, your experiencing what i was when i was working, well im still not sleeping but was harder when i was working , so i really know how your feeling right now and its not nice, i found when i do wake is to get up out of bed cause theres nothing worse than laying in bed trying to sleep cause you wont, i normally stick a movie on to take my mind of things or go on the net and chat with friends,

Again today when i was walking to the toilet block someone on the site whom ive spoken to a couple times asked why i wasnt at work, but when i told him i had M.E he just shrugged his shoulders and said whats that ??

as if were not suffering enough we have to constantly explaine our illness to people as if were trying to find excuses for not working

i personally think its about time we all got recognition for what were all going through and how much we suffer both physicly and mentally, and make it more public to people about our illness

Good thing with this site is you can have a good old whinge and let some steam of

Take care and spk soon

Jay xox

Well, I don't quite know what is happening to the three of us, but I had the worst night's sleep ever last night!! Tossing and turning and bashing pillows to try and get comfortable. When I did eventually doze it was only for an hour or so and this morning I felt as if I had been run over by a bus. :cry:

Maybe, we are just all too excited by our plans for when we win the big money?? But, seriously, it really is a pain, especially for you Donna, with your work load. I think you ought to see your GP and ask for some form of sleeping medication - something like Temazapam - and just start off with a low dose and see if it helps. You've got to get help somehow 'cos the worse your insomia gets the more you are going to worry about it.

Jay, I know exactly what you mean about lack of understanding of the illness by others - are they thick!! :roll: Surely, by now most folk must realise that it is a genuine illness.

There are several well known folk who suffer - like Clare Francis. In her opening paragraph she says 'to have ME is to experience hell twice over, firstly through the devastation of the disease itself, and secondly through the lack of diagnosis, information and support that most sufferers are still having to endure'. Too right!!

What we need is for someone like Posh Spice or Wayne Rooney to end up with it and then the coverage would be fantastic! It's all sooooooooooo

frustrating! :cry: And it's far worse for you youngsters! At least I've been around for a bit. But I am now a 'kept woman' and I hate not having my own income and my independence.

Going back to sleeping, or lack of, of course the fact that we are unable to exercise doesn't help - it's all so unfair!

Anyway, take care and 'sweet dreams' - hopefully!

LOL

Katie xx

I really appreciate having a site to visit like this. I have had a terrible day. Had a headache nearly ALL day, not happy with noise, cant get my words out and sometimes they are wrong and just confused :? I went to lay down for an hour today and was shivering and unable to sleep - even though my body was crying out for rest. When I did drop off i kept waking with my body in sheer pain. I am SO fed up! Its time like this I really want to just curl up and die (not literally).

Jay I am sure you have mentioned before but why are you living in a caravan on a site? You dont have to answer I am just intrigued :shock:

As for the insomnia I drop off to sleep and have a VERY restless night and frequently wake and drop off, so I am not up all night for long periods just disturbed sleep - often feeling in pain when I do wake up.

On a happier note my dad told me he has a readers digest letter and he's in for a good chance too - so I am feeling more optimistic that someone I know is sure to be soming into the money soon :diva:

Thanks for all your support at this naf time for me I really do appreciate knowing I am not alone and other sufferers are unwell too!

Donna x

Well what can i say, it must be the weather, last night was proberly my worst night ever, i honestly though i wasnt gonna make it to today, my whole body was shaking even though i wasnt cold, i was sweating, i felt sick and my energy level was so low when i got up my legs were shaking, couldnt concentrate or think about anything, my teeth felt as if they were all gonna fall out ??, i was the walking dead last night, am abit better now but still feeling really delicate

The reason for me being in a caravan is : and i dont mind you asking

i had my own bungelow 7 years ago but when i first fell ill i was bed bound for 9 months, hence my mortgage dept was to high to pay back so luckly i managed to go back to work after a year and sell my bungelow and buy a flat, but cause i was a bad payer i had to get a high interest mortgage and i couldnt get insurance for my illness, so 2 years ago when i had to give up work i couldnt pay the mortgage and couldlnt get any help from soicial or council, i sold my flat and managed to by my caravan in the park were i am now, but im told by the council who pay part of my rent that im only entitled to £25 a week, even though my rent is £70 a week cause aparently the incapacity benefit i get is to much?? so out of my incapacity benefit i pay £45 towards my rent, have got my local M.P to look into it but is taking a long time, i saw him in november last year and still waiting to hear of any results, will let you know what happens when i hear

going to lay down now so spk soon

Take care

Jay xox

Really sorry that you are feeling so bad. We all seem to be particularly crappy at the moment - so let's all be crappy together! I wonder why we are all feeling so achey (mind you, I think I've probably overdone the hula hoop practice just a bit - I feel as if I have been punched in the stomach). Not such a good idea after all. :cry:

Actually went out the other evening - big mistake. I'd slept all afternoon and didn't feel too bad, and as I didn't want to seem a wet blanket, I went

to the local theatre with some friends. I just couldn't cope with the noise, lights and crowds and sat there with my dark glasses on and fingers in my ears (hoping no-one would notice) just dying to get home and into my bed. Shan't be doing that again. I don't know how I am going to manage with my daughter's wedding in May - perhaps I'll borrow a wheelchair and then folk could actually see that I was ill - that's a good idea!! :wink:

I do hope you get some help from your MP with your disability allowance, Jay - aren't they planning to change the whole system? :? I hope this doesn't make things even more difficult for you. It's just not fair that you've lost so much over the years through no fault of your own.

Anyway, take care and let's hope we all feel better as the week goes on and can think of something funny to cheer us up!! It always works for me!!

Lots of love

Katie xx

This seems to be a typical day for me and it all only started 4 weeks ago!

I am a very busy self eployed 39 yr old mother of 3. I am bust both in work, social and home life. My children take after me and are very busy socially and have many honours in lots of sports, dance and musical theatre.

About 1 month ago i went to my doctor complaints included severe back pain, joint pain, headache and a tiredness I just could not shake off. He done every blood test under the sun and they have all came back negative. His only explaination is post viral condition ( I have not had a virus). I have only been out a few times over the past month as i am in a lot of pain or just too tired...?

Other symptoms include not finding the correct word to finish my sentences, upset stomach and feeling constantly cold.

I asked my doctor how long i am likely to feel like ths and his only reply was 'How long is a piece of string?'... Well, not good enough and answer really. My life has been turned upside down and I still have no answers.

I have to admit to being very negative at the suggestion That I could have ME and surely not someone as fit/energetic as I could possibly become ill, but I am mostly to tired to even think.

It's usually fit, active high achievers that end up with ME - no one yet seems to have worked out why? My theory is - that we just burn ourselves out.

Hopefully, your condition will soon improve - and not turn in to full blown ME - but I have to say your symptoms sound very similar to those of us who post regularly on this site.

ME often starts with a viral illness - but not always. I had just a simple sore throat and then sinus problems over a year and a half ago now and was diagnosed with ME after six months - my life has changed drastically and sometimes I just want to scream with frustration at the unfairness of it all. If you have time to read through some of the previous experiences they may be of interest to you - either that or thoroughly depressing!

I do hope for your sake that your illness will be of a short duration.

Best wishes

Katie

Like you I am a busy mum with a rather responsible and stressful job. I was diagnosed, offficially, Last October after suffering with joint/muscle pain, poor memeory, poor cognitive abaility and very tired - often sleeping when I got home from work and sleeping much of the weekend!

I suggest that you continue to have regular contact with your doctor and to build up a portfolio of your symptons. Sadly many doctors like to of seen a history of symptons before they actually diagnose. It also helps to rule out any other causes for your symptons.

I wont bore you with all my story but if you read some of the posting here on this site you will earn to understand you are not alone. As Katie mentioned there seems to be a regular small group of us me (Donna), Katie who's a wino and Jay whos a speed freak! I am sure they wont mind me posting this as we have all grown to understand pull each other up with our poor sense of humour!

Keep in touch and let us know your progress

Donna x

P.S I went on a staff training day today with the Youth Offending Team! Yeah they nearly took me back with them becasue I am sure they thought I was under the influence of something becasue the words just would not come out in the correct order and for the life in me I couldnt remember peoples names :shock:

so sorry to hear your feeling so low at the moment.

Like yourself and many others Rachel my daughter was a very active energetic person when she started with M.E, she played Rugby for Yorkshire and football with constant training sessions through the week.

Her M.E did not start with a virus as such, she just became more and more drained of energy and developed constant bouts of thrush,which she had never sufferd from before. After a few weeks she felt flue like and developed severe pain in her arm and leg which she was given pain killing injections for. Eventually the whole thing developed into full blown M.E and a diagnosis was made after 8 months.

She said she felt very bitter and desperate but that (in her words) once she accepted what was happening and what was wrong with her , she learnt to cope.

Thats not to say she doesnt have days or some times weeks when it all gets too much, but she gets on with it as she says and takes one day at a time.

There is light at the end of all this and you will improve, it just takes time.

Hope things get better for you soon.

Take care Sue

I'm a 34 y.o. male, married with 3 children of 1,4 and 7. I also coach football at weekends so I'm out on Saturday and Sunday mornings. I work in the IT sector as a project manager and helpdesk manager and work is very busy. If I ever work more than the "normal" hours then I tend to go to work early and leave on time. for the past 6 months to a year my sleep has been much better but at one point (about 18 months ago) I was stressed in home and work life, had awful sleep patterns (go to bed in the evening, wake up for 3 hours then go back to bed for another 3 hours sleep) suffered from heart palpitations but I always kept reasonably fit. For years I have played football twice a week and I run 5k almost every week in addition. I don't drink excessively, I don't smoke either.

Over the past 6 months, my tiredness has gotten worse. During the day I'm tired, I can barely start let alone finish sentences, meetings are awful for me as I so badly want to sleep. If I am at home at the weekends I can sleep for 2 hours after lunch and still get a good nights sleep. Recenlty I suffered joint pains (like I'd played football and I hadn't), diahorrea, stomach pains, headaches, bloating, overheating (leading to sweating) and nausia. Not all at the same time but just varying parts of the past 3 months,

I've already had 7 days in 2 weeks off work and I'm fed up of being tired. I saw my GP and had them refer me to a specialist who did a long list of blood tests which all came back negative. M.E or not M.E, that is the question!

Keep in touch becasue this site is brill for support

Donna

I would be inclined to agree with Donna - your symptoms unfortunately appear to suggest ME.

It's so frustrating that blood tests come back normal (we've all been there) - hopefully the medics are on the verge of discovering a definitive blood test for the condition and we should all hear more about that in May).

In some cases some sufferers cannot pinpoint the onset of their illness, they just gradually become more tired and ill over a period of time. This seems to be so in your case, and from what you say, may have been triggered by stress. Once again, it is an active, very fit and busy individual who has been affected. We can all sympathise with your frustration.

There are many excellent books available on the subject - the best ones, to my mind, written by sufferers themselves.

Good luck and keep in touch. As Donna says this site is 'brilliant' and we are always there to give each other support when needed.

Best wishes

Katie