Has the forum got M.E again ??

Thanks for your input folks, I have decided to reply back to the specialist (send a copy to my G.P.) with a print out of the CFS/ME webpage and a more detailed history of my issues comparing symptoms. All I need is some sort of confirmation (as a starting point) as I'm fed up of work thinking I'm pulling a sickie for the sake of it.

I'll keep you posted and thanks for your replies.

Sandman

Hi again Donna

Meant to say in my last posting that it was interesting that pregnancy seems to be a 'cure' for ME. It's a bit late for me but might be worth a try for you). :roll::wink: :wink:

Note to Sue: You mustn't feel guilty about Rachael having an injection containing adrenaline - you weren't to know. Most dentists aren't aware of the connection - well not yet, anyway. I'm just lucky to have a super duper one in London who is really up to date with everything. Trouble is, he costs an absolute fortune - not sure I can justify seeing him anymore, now that I have had to give up work. Dentures, here I come!!

Take care everyone,

What's happened to Jay, hope he is okay.

Katie x (I've just decided ME stands for Massive Effort Syndrome!)

Hi all,

I have been ill for ages and GP finally agreed last week that it looks as though I have ME and I hav been referred to the ME clinic although there is a 4 month waiting list. I am finding it really difficult to cope with as I seem to be getting 1 virus after another just to add to the fun! My GP says its because my immune system is down and not having chance to recover, is this usual for ME sufferers or am I just especially lucky? :?

Also really struggling to cope with the headaches and dizziness, I have a dull ache in my head all the time and migranes triggered especially by lights such as the sun. Have been prescribed Diclafenac and Pizotifen but don't seem to do anything except make me tireder and dizzier, today GP prescribed Imigran but again no joy. My head feels like it is full of cotton wool and my legs feels like they are made of jelly. i can't even bear being around my 10-yr-old daughter as her voice slices through my brain.

I feel like the worlds worst mum and float between feelings of anger and frustration at myself for being so useless, I feel pathetic and like I'm constantly moaning and feeling sorry for myself. I also get really frightened and upset at the way my life seems to be deteriorating and things I previously took for granted are now a major trauma. I don't know what to expect from the ME clinic, GP doesn't tell me anything, says it will confirm diagnosis and discuss treatment options. Does this mean I haven't actually been diagnosed yet then? :o ?? Does it get better, can anyone offer advice and help me feel human again, thanks

Michelle

Hi michelle & Hi to everyone who are both new and old to this site!

Sadly if your doctor thinks you have ME and has sent you to an ME group then it's likely you have but I suggest you book an appointment to get clarification that he definatly thinks you have it. HOWEVER, many GP's cant do a simple blood test that identifies ME and there are no outward symptons either which makes this illness so cruel. Like you I was only diagnosed last October and have had a variety of symptons such as fatigue, confusion, short term memory loss and insomnia to name but a few. I also felt like no-one believed me and I was just a hypercondriac. This has been the biggest barrier for me to accept with this illness. I am a tough cookie and try my best to handle the pain and fatigue but I struggle greatly with the impact it has on my life too. Like you I have children and a 11 year old son who like your daughter has hobbies and wants my attention. I know its very hard for you right now and I truly understand. My best advise would be

Family/Children - Print off an ME Patient information sheet from this site and hand a copy to everyone you know and explain that whilst you come to terms with this illness there is something they can take away and digest. Also, being a child behavioural consultant, I suggest that you explain very clearly to your daughter that mummy is very tired and needs to rest alot. Ensure everyday you spend an allocated time with her and maybe together you can discuss you illness through drawing pictures because children dont always know how to express themselves verbally. This can be done on the sofa or in your bed. Reassurance is the key!

Medical Help - We are all in the same boat as there is no magical cure for ME but like Katie has mentioned an article was published in the Daily Telegraoh about ME this week and if you go on to the site you should be able to search and read about it - Its very interetsting. If you cant be bothered then keep in contact with fellow sufferers (such as this site) and until you reach your support group you will find some amazing support here. NOt 100% sure about the severity of your headaches but I get them often but not frequent migraines??? My biggest piece of advise is to make sure you have a good relationship with your GP because for me its VERY important to have someone who understands.

I hope this gives you some comfort at this distressing time.

Take care everyone

Donna x

P.S Hi Katie - Where is Jay? I hope he is ok? Oh and NO MORE kids for me thanks I cant afford them - or maybe when you win the readers digest I might be able to mmmmm leave that thought with me :shock:

hi Donna,

your advice and reassurance is greatly appreciated and I will certainly try discussing things with my daughter. At present all she has been told is that I am poorly but nothing specific as I just don't know how to explain whats going on especially when I am unsure, the novelty of 'mummy's poorly' has worn off now with her. I would very much like to stay coonected to this sight as candice is not the only member of my family struggling to understand which as you know causes more strain and negativity.

Do you know what they do at the ME clinic, I've already had a million blood tests which were clear, although I do have a borderline B12 deficiency but as its not very low and occasionally reaches the low end of the 'normal' range they just want to keep an eye on it for the moment.

Thanks again and take care

Michelle

Hi Michelle

I'm truly sorry that you have been diagnosed, with what definately sounds like ME, and I do hope that you continue to find advice, support plus the occasional laugh from this site! (We may all be poorly, but we haven't lost our sense of humour!)

I can really appreciate how difficult it is, feeling how you do, to try and make life as normal as possible for others around you, especially children. Donna, the expert in this field, has given you some very sound advice and I implore you to follow it.

I had my first 'attack' of ME when I was in my early thirties following a bout of flu. It lasted just over three years - at the time I was bringing up a very bouncy four year old girl - pretty much by myself, as my husband was abroad so much. I was the mother from hell - and I will never forgive myself. My symptoms were identical to yours (but ME wasn't recognised in those days and my GP told me to get a grip on myself!). In hindsight I was obviously deeply depressed and having moved to a new district had very few friends who could help. I too, couldn't bear my daughter laughing or shouting - I couldn't even bear her touching me because everything hurt. I just couldn't wait to pack her off to school so that I could go back to bed in a darkened room. I am still haunted by the way I treated her - but thankfully, she has grown into a really lovely young woman and we are now very close. If only I had had someone like Donna to advise and talk me through it.

I am now 54ish and have had a recurrence of ME following a throat infection 20 months ago. I find I can just about cope with the tiredness and the pain but for me, the worst symptom is the headpain and dizzyness. It's not a headache as such and does not respond to any analgesic. Like you, my legs often feel like jelly - I would describe it as walking on rubber and the feeling of dizzyness is truly awful. I do find that by almost permanently wearing lightly tinted sunglasses I feel less giddy so this is perhaps something you could try. Also when my brain feels really foggy, I find that an Alka Seltzer helps a little - my GP mentioned that some of her ME patients find that a low dose of Asprin also helps, so I suppose that amounts to much the same thing.

It's probably not much of a consolation, but after a while you probably will find that you get 'used' to feeling how you do, and there is no real alternative but to just get on with it. It is very hard though to get others to understand, but hopefully the media will be full of articles about a possible breakthrough in diagnosis in May and this may at last highlight the misery of the condition.

I'm not sure exactly how a ME Clinic will help - I wasn't offered anything but I should imagine you will be given advice on pacing yourself etc.

I'm sure your GP is correct in saying that the various other ailments you have had are caused by your suppressed immune system - perhaps a healthfood shop could advise on something to give it a boost. I take slow release Vit. B, Coenzyme Q 10, and a high strength cod liver oil tablet - oh, and milk thistle (for the liver!).

If you get time, it might be worth reading through some of our earlier posts.

Do let us know how you get on.

Katie

Note to Donna: Hi! Still no sign of Jay - will send him a pm to check he is okay. Maybe he has won the RD cheque and is keeping it quiet!!

Hi everyone!

Thankyou for your kind comments :oops:

Donna x

P.S Might come back online later all this read has given me a headache :shock:

Hi Katy,

Thanks for your reply and advice, it makes such a difference to be speaking with people who truly understand. My partner does try, bless him, but I know its impossible for him to fully appreciate how I feel, especially as its such an invisible illness, with the exception of my pale face and bags so dark I look like a panda, I don't actually look ill which makes me feel more like a hypochondriac. I will definately be keeping in touch with this website as I no longer feel so alone, thanks again both Donna and Katy, your kindness has made such an amazing difference. Take care and be ind to yourselves

TTFN Michelle :D

Hi Michelle

Thanks for your comments. Yes, do keep in touch - this site has been an absolute godsend to me! It's great for when you are feeling really down and really just want to sound off!!

Katie

Donna: I've sent Jay a private message, but still no response. Perhaps his computer is down - or, OMG :shock: :shock: maybe he has just done one wheelie too many!! :shock: :shock:

Happy Easter everyone - get your sledges out!!!

WELL, Where do I start?

I had the best nigts sleep in ages! BUT it was such a weird sleep that everything seemed SO real! That much so that I thank the lord for my new 4x4 with tinted windows! 8) Yep I had a dream that my butcher wanted to kill me with his knife so when i passed the shop this morning when droppinh my daiughter off to her sat job in the bakery I put my foot down. :run:

Oh it gets better - in my dream I also dreamt my neighbour wanted a rondezvous with me. :love: So you can imagine my face when I returned home from droppig my daughter off to see his stood on the drive in his lovely paisly dressing gown and matching slippers! :shock: :shock: :shock: :shock: :shock:

Anyways I feel well today and as ays I am off to enjoy my day - probably be in bed this afternoon but whilst I feel well I am going to enjoy it. :diva:

Bye for now

A very cheery Donna :biggrin: :run:

P.S Maybe Jay couldnt handle the pressure of such invalids in his sidecar and has taken off alone - solo

What mad dreams! I've been feeling particularly well today - the best day I've had in months. Been cramming in as much as possible in case it doesn't last but so far Good Friday is certainly living up to its name :D :D

Hope you manage to enjoy the good spell and continue to be weary of mad butchers and amorous neighbours :P

Take care all

Michelle

Good morning. This morning I have found this forum for the first time. I wish I had found it before. I have read some of your experiences and I could have written them myself.

However I think I am fortunate. My GP has been supportive and I am in receipt of incapacity benefit and low rate DLA. I was turned down at first but I enlisted the help of the Citizens Advice Bureau and I would encourage anyone to do the same. I just don't have the physical and mental energy to deal with the bureaucracy involved. I prefer to use my limited resources on living.

I developed this after a severe respiritory infection 7 years ago and I was not diagnosed for 3 years. In the end I paid for my own diagnosis at the National ME Centre in Middlesex because I was so fed up with being fobbed off.

I did ok until my mum died in 2004 and then I relapsed badly. I have never got back to where I was before her illness and, although i am now stable, I don't think I ever will. Neither does my consultant. There is a CFS/ME clinic at a hospital not too far from where I live and I have been fortunate to be able to go there, but at the end of the day they can only advise and teach coping strategies to live with it, but I am trying to do what I am told now.

My GP has just asked me to try HRT for my symptoms that are obviously due to the menopause and I have agreed on a very low dose. I am waiting to see how this will affect me in any way.

Does anyone else have experience of ME, the menopause and HRT?

Hi Everyone

Well, I've gone and overdone it as per usual! I've invited people for lunch on Sunday, ( I don't believe I did that!! ) and have been giving the dining room a good going over, since it hasn't been used since Christmas! And I am now knackeroood!

This illness if so frustrating!!!!! I just feel really irritable and bad tempered and definitely not nice to know at the moment ! :evil: :evil:

So there!!!

Katie:cry: :cry:

I'm still worried that we haven't heard from Jay.

Hi Alicia

A very warm welcome to the forum! I too, found this just by chance by googling around on my new laptop (I'd never had time to sit and fiddle around before I was ill!), and it has been a great source of help, comfort, entertainment and information!

I joined last October having been diagnosed 14 months previously - like you I paid for a private diagnosis (for what it was worth!) - but already knew what was wrong with me. So many people seem to get ME following an upper respiratory tract infection, as we both did.

I'm sure you have probably seen my 'Stop Press' posting following the article in the Daily Telegraph last week - I think we are all very excited at the possibility of a diagnostic bloodtest and all the media coverage it will hopefully involve. All we guys ask is that the general public have a much better understanding of the illlness and what it involves - and it can finally be a recognised illness by all.

I was interested to see that you attend an ME Clinic. My GP hasn't offered anthing like that to me but, to be quite honest, I really don't see how it can really help. We all know what we should be doing - or not - particularly when it comes to pacing ourselves - but it's not always very easy with the busy lives that we lead (or would like to!).

I too am menopausal, but so far, don't seem to have had any real symptoms (although I'm sure my husband would say mood swings!!). I have night sweats occasionally but I'm sure that's the ME - infact I blame everything on ME I hope, however, that you get some relief from the HRT and are able to tolerate it.

Anyway, look forward to hearing from you again on the forum.

Katie

Hi katie, donna and everyone else on here

Well what can i say,,,,,,this is proberly my worst week ever,,,,,,,after haveing a hard weekend last week ive spent most of this week in bed sleeping,,,,,,,,,,only getting up for a quick bit to eat, toiletries and a wash,,,,,,,then back to bed,,,,,,,,,,havnt being able to focus my mind on anything this week,,,,,all i can blame it on is some kind of virus or intection i caught.

Wooow and what a week ive missed,,just reading through all the posts ive missed,,,,,,nice to see a few new faces on here,,,,,,,glad to you that you've found this site and i hope it helps you along alittle as it has me

Id love to reply to all your post but id be here all night but my heart goes out to you all and as katie posted about the diagnoses there is light at the end of the tunnel

I hope your all ok and will catch up with you soon

Take care

Jay xox

P.s sorry if i worried you (you know who you are) but as you know some times you have to block life for a while to recope xox