Has the forum got M.E again ??

Come on Katie! Chin up!

I know its hard but what you didn't realise was that the people running past your window laughing and joking FELL, suffered concussion and nasty muscular injuries and are now suffering like us - fed up, tired, aching, muscle pain and mostly confused!

Donna

Hi Donna

Thank for that - I feel much better now!! In fact I've rated you a 10 (plus 2 housepoints!!)

Be in touch soon.

Katie x

Can anyone offer advice! I met a great guy about 6months ago that I am crazy about who was diagnosed with CFS a couple of years ago. He doesn't talk about it a lot and to me it doesn't seem to disrupt his life too much - he still manges to work and socialises occassionally.

What do I need to know? What can I do to help (if anything) and what should I avoid??

I dont want him to think I'm nagging by asking lots of questions but I do care and feel I should know more about CFS to make sure I dont do anything that will make the condition worse!

Any suggestions would be greatly appreciated!

Thanks

hi emma,

well it sounds like hes one of the lucky ones, i mean still being able to work and socialise is great if he can cope with it. The best advice is to read up on it on sites like theses, but just remember everyones experience is different, i can give you a list of symptons which i will post on a new forum for everyone to see.

Just being there for him is the best thing you can do, but dont push him to talk, he might even feel a little embarresed about his illness (its a man thing), sorry i carnt be more help but i struggle to explain things too

Jay

Hi Emma

As Jay says, you really just need to be there for him. He may look fine and appear to be functioning normally, but there may be times when he is feeling really wretched but perhaps doesn't want to let on. My partner is always able to tell when I am feeling really awful because I suddenly become very quiet and I just want to be left in peace, and, thankfully he respects this. Many ME sufferers prefer not to talk about their illness, and personally I hate it when people ask me how I am - I feel like saying "still very ill, thankyou!" We can be a bit touchy at times, partly because ME is so FRUSTRATING! That's why it is so good to have a site like this where we can vent our feelings and know that others understand how we feel. People with ME don't want to be ill - we just want to get our lives back and it can be really distressing not to be able to do the things we used to enjoy. It sounds as if your boyfriend manages his condition fairly well and is lucky enough to only be mildly affected - I'm sure he will appreciate the fact that you have been finding ways of understanding and helping him. Good luck!

Katie

Hi to everyone with ME/CFS

Just to wish you all a VERY HAPPY NEW YEAR :D and let's hope that 2008 will be the year that a diagnostic test is discovered and better still, A CURE - and then maybe we will finally be BELIEVED!!

Katie x :D :D (Have just discovered how to do the emoticons - there's no stopping me now!!)

:cheers: Happy New Year to all :cheers:

Would be great if they did find a cure for M.E/CFS.....And the flu as im suffering at mo with it.....Fingers crossed for 2008 :cool:

Jay xox :sleepy:

Hey Happy New Year

:diva:

My aspirations are the same as yours Katie & Wolfe.

Had a great Xmas & New Year but as suspected its catching up with me, aches, insomnia, mega tired, cant concentrate for long etc etc

Oh well never mind it was fun whilst it lasted :bubbly:

Off now to try AGAIN to sleep :zzz:

Bye for now

Donna x

Been off work now since October . Got CFS through having a throat infection . After weeks of going to see the doctor and many bloods taken was diagnosed end of November / early December .

Also have been diagnosed with pernicious anemia and it has been suggested that this itself can lead to CFS . Will have to be on B12 injections every 3 months for the forseeable future .

Symptoms range from the usual tiredness , disrupted sleep , muscle aches , headaches and lack of concentration ( i used to read books constantly but can't get past the first few scentences and takes me about 5 mins to realise im thinking about something totally random)

What i find most frustating is when I find im having a good day ( which is still not great ) to find im confined to bed for the next 3 days .

I also find it greatly frustrating that many people make you feel like a fraud and even on occasions have you doubting yourself . Unfortunatley us " sufferers" are the only people who know how it feels and as its not a wildly recognised illness and others can't see there is something wrong with you and as of yet there is no treatment for it we have to put up with the stigma of having it . I am frustrated with the constant explanation I feel like a need to give even to family & friends . Although probably being honest I feel the need more than they do as CFS not only robs you of your normal live but also leaves you feeling like you constanly need to explain yourself .

Probably starting to ramble now but feel a bit better now actually for writing this . Just wondered if anyone else had these feelings and also if anyone has also had to take the B12 injections permently and if they have found they have made a difference .

On a happier note ( I can do happy if pushed ) I wish you all a great 2008 & heres hoping they find one hell of a super duper injection that will cure us all .

L :roll:

Hi there!

I can identify with you completely and I know there are many others out there who know exactly how you feel. It's so hard to explain to others that we may look okay but we are far from it. I actually resigned from my job just after Christmas - I was feeling particularly poorly - probably due to the added stress of TRYING to be merry - and then felt better in the New Year and withdrew it! I am now going to have a career break of six months to hopefully improve my health - the crazy thing is, that at the meeting with my managers to arrange this, I actually looked by far the healthiest - and I ended up feeling really, really pathetic having to explain that in fact, I was feeling really unwell, AND HAVE BEEN FOR THE LAST B***** YEAR AND A HALF! iIt seems impossible for people to realise that although we appear to be functioning normally, many of us are in a lot of pain, feel as if we are walking on marshmallow, and every step, every phonecall, every conversation, every light, every smell, every noise is exhausting and unbearable. Sometimes, I feel as if I just want to scream out loud for hours with frustration, but haven't got the energy for that and I would just end up feeling far worse. So, we just plod on - hoping there is a miracle cure around the corner. Yes, so lots of us know exactly how you feel!

Katie

Hi there

I have been reading all the messages and see that they have help a lot of people so I am hoping that I too can get some advice.

Six months ago, I kept waking up early morning with severe cramps in the back of my legs and had to get up.

One morning after getting up, I collapsed and my husband found me lying behind the front door when he came in off night shift. We do not know how long I had been lying there.

I was taken into hospital and they did blood tests and sent me home.

Since this has happened I feel exhausted all the time even when I wake up in the mornings. My legs are still painful most of the time and I am suffering a lot of headaches.

I used to do keep fit three times a week and I am a very keen gardener but now even to think about it, I feel exhausted.

So far I have not had a lot of help, just one blood test after another.

Could anyone please give me any advice.

hi roz,

I think in your situation alot of ppl on here would be scared to give you advice as were not medical experts and would be horrid if we gave you the wrong advice, but, we can help you to understand whats going on, to me it sounds like you had a virus of some kind that caused you to collaps, especially as blood test have rulled out other illness's, M.E in most cases is triggered by either a virus or a opperation. The trouble is the experts dont normally diagnose M.E for atleast 2 years of you suffering from the symptons, my advice is to keep pestering your doctor to find answers, even if they've done all the blood test's, also you can check out my sympton list ive posted on here http://experience.patient.co.uk/discussion.php?t=19380

i hope this helps

Jay

i think i can speak for all M.E sufferers that we think ppl think were frauds, i gave up work 1 1/2 years ago after having M.E for 7 years, i got so fed up with phoning in sick for a couple of days, then when i went back to work ppl would ask how my holiday was !! if only they new how much i was suffering, ive had the elderly (whom i did respect) ask why im not at work, "ive got M.E" oh,,,,,thats that lazy mans illness!!,,,ive even had a nurse call me "lazy git" when i was in hospitol last year because i had trouble waking up for breakfast after being awake all night,,,,its the healthy ppl who make us feel like frauds,,,,,,,i then often question myself if there right!!,,,,,,i dont like claming money or living of the tax payers and feel worthless doin so but i have no choice,,,,,,and it seems like a full time job just trying to keep the money coming in from them

i do think its about time they studyed this illness indepth so others can start giving us the respect we deserve!!

Jay

Hi there Roz

Welcome to the club!! I would agree with Jay (Hi there, Jay!) - it sounds as if your original problem was probably some form of virus which could have been the trigger for your possible CFS/ME. It is so hard to actually get a diagnosis and depends so much on your GP - if you find him or her unhelpful it would be worth seeing another one - some of the younger ones tend to be much more sympathetic (and knowledgeable!) than some of the olders ones (who really need to be pensioned off - but as they are now earning such vast salaries hang around - but that's another story!)

You have obviously had lots of tests to rule out other conditions. You have probably seen in my last postings that I have recommended an excellent book - ME - A Practical Guide by Dr Anne MacIntyre (a fellow sufferer). I can understand just how frustrated you must feel - your lifestyle sounded very much like mine. Hope this is of some help. Let us know how you get on. Katie

Hello I am hoping someone can help I have been looking at some of the posts on the site and I feel I might have ME.

I have suffered with persistent tiredness for nearly a year now it's the classic story of getting up in the morning feeling good for about an hour or so and then bang I suddenly feel exhausted.

I also suffer from chronic pains in the joints of my legs and in the muscles. I have been given all the usual blood tests and surprise surprise they all came back negative, I have repeatedly been back to see my doctor on almost a weekly basis and asking for help and a diagnosis I myself feel I suffer from ME. Every time I see the doctor I am told he is not sure what is causing my symptoms but is happy to get me antidepressants, Dihydrocodeine (which I am now addicted to),Co-codamol and various other medication.

I have also been to see other doctors within the practice and all that I get told is i need to see my own GP and once again the cycle begins.

I would like to know if any body else has had the same or similar experience and I am very interested in the way people feel they have been treated by their GP.

Thank you for taking time to read my post and I look forward to any replies.