Has the forum got M.E again ??

My son contracted CFS/ME after being bitten at school camp. From then on he has had joint pains neurological problems nausea fainting hot cold temp changes headaches u name it he has had it or still got it.

He is barely able to manage school 10-2 2 days let alone the four they want.

He was once tennis champ and is now losing friends and confined to his computer and his parents. Sleep is disrupted and he says he wishes he was dead. He can see no end to it. We spoil him to compensate yet I am now almost unable to work often having to have time off.

Anyone been there and got through it?

Anyone want to share their story

Considering home education from January!!

(Sorry but Patient Admin have removed an email address from this posting, as it is the policy of Patient UK not to publish these on this forum.

If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)

I have been suffering from ME for l6 months following a throat infection and like all fellow sufferers my life has literally changed overnight. I am so grateful to have found this site and to know there are others out there who feel like I do. It's so very hard (and exhausting) to try and explain to others that yes, I may look okay, but I'm NOT. I feel absolutely wretched most of the time, in pain, foggy head, blurred vision - exhausted after even one phonecall - to name but a few of the ghastly ME symptoms. I feel like having a teeshirt printed with "I may look it, but actually I'm not well thankyou". I have found great comfort from a book byDr Anne MacIntyre simply called M.E. - it has become my. bible and when people query my illness, I ask them to read the forward by Clare Francis. Also, having been ultra-fit and active with a six pack stomach, I am despairing of watching my body slowly disintergrate. Must close now, as my brain is shutting down ......

Hi Lou

I know EXACTLY how you feel! I'ts such a frustrating illness and no one seems to grasp the fact that we can feel fine one moment, and then a simple thing like a telephone conversation can render us really, really unwell. I have been battling with ME for the last 16 months and I get so exasperated when people say, "but you look so well!" when in fact my eyes are so blurred, my head is bursting, I've just walked in to yet another doorway,adding to my already impressive bruises! Sometimes, I just feel like having a darn good cry, but can't even do that because I know I'll just feel worse. So, if it's any comfort Lou, you are not alone!

Ive had M.E for over 7 years and am still struggling to come to terms with it and adjust my life style for it. Ive have had to give up work reluclantly about 1 1/2 years ago, ive had to sell up and move into a caravan, its taken me all this time to get the finacial benifits im entitled too but was hard work fighting through my brain fog and fatigue. Its a hard road as most people dont realise the strengh needed just to do everyday tasks, its a true saying "kick you when your down" as ive found out alot since being diagnosed.

The best advice from me is to seek the proper finacial help fast, i know its hard "all the forms just read blank to me" but in the end its one less stress. i went and spoke to my local MP as my housing benefit dropped conciderably who was a great help. Ive also being on incapacity benifit for a year as your company are elegable for the first 6 months which happens automaticlly, all i had to do was turn up to a medical from the job centre+ "all" i must have spent a week recovering from that!!

Unless your 1 of the lucky few you WILL have to cope and deal with this illness on your own as ppl just wont except you as someone with M.E / CFS including your family, its a very lonely and cold exsistance living with this condition, my family are still there for me but will never except me as someone whos seriously ill

This all may sound harsh but its the reality of it all, theres no point in wrapping it up in cotton wool,

just remeber your not on your own!!

From

Jay xox

Ive being asking myself that for over 7 years "why M.E"

like you i was very active, out all the time, the life and soul of any moment.

its like ive spent the past 7 years in a washing machine, but its all just a blurr, i just wish there was something positive i could say to you all but there isnt, well apart from i can stare at my screen for 5 mins without blinking

i do think a caption on your t-shirt is a good idea though

"may look fit and healthy

but im seriously ill"

perhaps then ppl might be a bit more sympothetic

i feel like my pc at mo, need a good defag and virus check

so on that note im loggin off

Hi Jay

Well ive had M.E/CFS for over 7 years and the symptons you've got does sound like M.E/CFS.

Providing your doctor has ruled out all the other illness's related to your symptons then you can pretty much say you have it,

the best advice is to see your doctor and ask him to refur you to a M.E support group who will ask you diagnosis questions and give you a better understanding and living with M.E/CFS

From Jay

ive being there but not got through it after 7 years, i must admit ive never heared of some getting M.E from being bitten, generaly its starts from a virus, operation or berevment, but then they all relate to your imune system being pushed to the limits

Like your son i was very sporty, but too i lost all my friends and my girlfriend my job, my home, and yes most nights i pray to not wake up in the morning, the sun never shines anymore, its is a lonely cold and dark place to be and you feel your the only one suffering

the best thing id want is support, understanding and love, if only i could get my family and friends on these sites and see its not just me making theses storys up. i do feel for your son as i was 30 when i got M.E so did enjoy abit of my life first, but with support and control he can have a better life style.

Seek a M.E support group, they offer all kinds of information and guids to daily living

Jay

Hi Jay

It sounds to me as if you are a classic case. Definitely ME/CFS! (Trust me, I'm a nurse - or was!). It's just so frustrating that there is no official test - I'm sure there will be someday - but that doesn't help us now. My symptoms are very similar to yours (I was interestedli to hear about your yawning - even your mention of it has set me off! And the very deep, afternoon sleep - I also have the most amazing dreams - but some so intricate I wake up exhausted).

I was diagnosed after being unwell for six months following a throat infection. I went privately to see a specialist for a diagnosis (the NHS waiting list was so long - and I needed it for work) and within 5 minutes of the consultation (with a psychiatrist - great!) he confirmed that indeed I had ME - cost me £250 for something I already knew. The only way he could really help me was by increasing my nightly dose of Dosulepin to 125mgs which does help me sleep and also takes the edge off my wretched fibromyalgia - mainly affecting the back of my shoulders and is ever present particularly during the evening. I find I can cope with the pain and the tiredness (sort of) but the worst aspect of this awful illness is the brain fog and feeling out of touch with reality.

-

I do feel you should find a sympathetic GP and get an official diagnosis (hopefully without having to pay!). There are also some excellent books on the subject, and my absolute bible, which I've mentioned previously is a book by Dr Anne MacIntyre entitled M.E.- A Practical Guide - she is a fellow sufferer so knows exactly what she is talking about.

I wish you all the best and let's just pray that one day we will all be free of this ghastly illness.

Katie.k.

Hi

Sorry to hear your son is suffering with ME/CFS. Altough a sufferer too I work in education - just!!! Our local education authority holds a provision for children unable to attend schools due to illnes ours is called LEMS Lancashire Education Medical Service and the provision supports children who aren't able to attend or who haven't attended schools for 3 weeks or more. However, the child is referred to the provision via a variety of professional bodies such as an hospital consultans etct. If you haven't already done so make enquiries at your childs school. I really admire your dedication you show towards your child. Having ME is SO frustrating and quite often not understood by others around us. I wish you all well and reccomend that you visit this site for advice and support from the people who live with this illness every day!

Best wishes :D

Hi Jay x2, Hi Katie

I was diognosed a couple of months ago and like you didnt know too much either. This is a great site for people suspecting or diagnosed with ME/CFS.

I really cant offer much more advise than what has alreay been said I can only emphasise the need to find a good doctor. Mine is fab she really supports my choices. Infact I am going to see her on Friday for a check-up and we are are on first name terms!

Katies book she mentioned is great I have just ordered it as highly reccomended.

I wish you well and keep in touch with this site it's truly reassuring to know you are not alone.

Donna

p.s Katie

I also have been told I have Fybromialgia (very achy neck and shoulders/upper back) is this actually related to ME/CFS?

Hi Donna

Yes, our fibromylgia is definitely linked to ME as you will see from Dr MacIntyre's book - my specialist also confirmed this - a sort of 'double whammy' - one we could really do without. I find the pain excruciating at times, particularly in the evening and absolutely no pain killers help. The only thing that I find eases it slightly is massage and I am lucky enough to have a husband and daughter who are happy to do this.

Also, (and I know that many ME sufferers are unable to tolerate alcohol - it doesn't seem to make my condition any worse) and I do find that a glass or two of wine takes the edge off the pain - probably, not something that I should recommend - but what the hell.

Yes, it's realy great to have this site and I plan to make a point of visiting it most days (now that I have so much time on my hands!) - ME is such an isolating illness and no one realy understands what hell we are actually going through, unless they have experienced it themselves. I felt very sad to read Wolfe's comments - we must all keep in contact and try and support each other as much as we can - no one else can do it.

Best wishes to everyone with ME!

Katie

Hi Katie

Thanks for the reply! Hope you dont mind me asking but how old are you?

I was first diagnosed with Fibromialgia then ME soon after. I had my first night out with friends last weekend! Probably had too much Bicardi and Coke but like you - what the hell! With the weather being so cold I felt rather "achy" the day after! As you probably noticed my postings are late at night because I struggle to sleep - making me feel and look great the day after! ha ha

I am in a full-time job at the moment (project manager) working with kids at risk of exclusion so my days are quite stressful! I am feeling rather fed up at the moment because I dont know how long I can keep this up! The stress seems to be a factor to my ME and feel that working gives me a purpose in life. Besides 2 kids and a pony that my daughter takes to shows I feel saddened by the thought of not providing for my family. Like you I have a fab hubbie that massages my shoulder and feet too. He is really supportive BUT being independant the thought of giving up work is playing heavily on my mind. I find it really hard to pace myself becasue when I feel well I want to catch up on jobs I havent managed to do -like a huge pile of ironing staring at me now!!!!!! Do you still work?

I enjoy visiting this site because everyone is affected in some way or another with ME and when my nights are disturbed I feel reassurance I am not alone.

I haven't recieved my book yet but it should be here soon. I have some other books on order too and when read I will converse.

Well I guess I better get back to wrapping some xmas prezzies!

Take care

Donna x

Hi Donna

Nice to hear from you I actually wrote to you yesterday, but somehow managed to send it to myself as a private message! Very clever. I am actually quite new to this computer stuff and with my befuddled brain am taking time to find my way around this site.

Anyway, you were asking my age - it's 54 (postively geriatric) but I really own feel about nineteen - well at least I did before I fell victim to ME.

It was interesting to hear a bit about your background and that, like me you have got good family support - I don't know how I would manage without (must remember to ask my husband about foot massage!!)

I too work, but only part-time, as a Sheltered Housing Officer (I used to be a nurse in a London Hospital) and now manage 38 flats with 45 elderly residents (well, at the last count, anyway!) Like you, my job is very stressful and I am continually multi-tasking. This never used to bother me but I now find it almost impossible at times and leave with my head bursting, limbs aching and only just able to drive home. Then, if I can, I just have to go to bed for a couple of hours. I find I am absolutely hopeless at pacing myself - a good day and I'm racing around packing in as much as I can! Stupid, I know! I have been considering handing my notice in but like you Donna, I value my independence and am reluctant to quit. I do plan to ask my Line Manager in the New Year if perhaps I can have, say, a six month career break to see if my health improves. My 25 year old daughter is getting married at the end of May and I am really worried about how I will be on the day having to TALK to loads of folk. I'm sure I will be talking absolute rubbish at the end - and that's something people really don't understand. Also, even the thought of having to start looking for an outfit to wear is a worry as getting dressed exhausts me without having to start trying on loads of outfits!

I just can't believe that only a year and a half ago I was power walking with girlfriends most days, attended three extreme spin sessions at the gym each week (I was faster than most of the boys - they used to call it my saga cycle!) as well as looking after three gardens and dog walking. I feel like crying when I open the drawer with all my old gym gear in - I don't think most of it would even fit me now - I feel lumpy and bumpy - but on the odd occasion when I've sneaked into the garage and had a go on my own spin bike, I'm dead after five minutes and then feel ill for days!

B***** it. Do you find that one of the symptoms of ME is that you can now swear like a trooper? I can! Funny that, I've never actually seen that mentioned in any medical books!!

Yes, sleeping is a real problem - but I do find that my nightly fix of Dosulepin 125mgs helps a bit. I still wake up several times during the night though, which, as you say, is a real pain when you have to get up for work in the morning. I wear tinted glasses most of the time these days which covers up the dark circles, and I feel look a bit racy - who am I kidding!!

I suppose we should be grateful that we are not affected as badly as some. I was at a drinks do the other night (about the second time I've been out in the evening this year) and I was chatting to someone I hadn't seen for a while, and was blabbing on about having ME, and then she told me that she had just been diagnosed with motor neurone disease! It made me feel really ashamed.

Anyway, better sign off now as my shoulder ache is getting the better of me. Are we supposed to be chatting like this on this site?? And I don't quite understand the rating business - I keep expecting to be give a couple of house points or even a gold star one day !!

Have a lovely Christmas and try not to overdo it - not easy!

Katie x

Errrrrm not sure about our postings? Poor Jay only posted one question and we have gone off on one!!! Sorry Jay

I will try and post an email privately to you.

Best wishes

Donna x

P.S You know your little problem with swearing...Well I think you ought to go back to your GP and ask about Tourettes HA HA HA

Hi to everyone with CFS/ME

God, am I FED UP!! The fact that it's almost Christmas really brings it home to me just how much I am missing out of in life due to this horrible illness - and it's so FRUSTRATING that ,unless a fellow-sufferer, no-one understands how awful we actually feel. I've just seen groups of folk jogging past my house, laughing and giggling - and I feel so JEALOUS! I'm exhausted after just peeling a few flaming parsnips, let alone lift the turkey!

Don't know why I'm writing really - I just feel angry and cross - but I know that many of you will be able to relate to how I feel.

Hope you all have a reasonable Christmas and are a lot more cheerful than I am!

Katie