People with CFS/ PVFS/ ME - how did you get diagnosed?

[Grockle]

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

I know, Solo. I've wished that in the past. People know what MS is & you can do things to make it better. But ME is just a 'get on with it the best you can' thing.

I'm 94 34. Til next week!

I've wished for a diagnosis of anything, no matter how serioous just so people would believe it isn't all in my head, and then they could give me something to help

Thank you solo it arrived this morning can you pm me your address please?

Grockle your week sounds lovely if rather busy.

Yes I too wished to find something treatable. I had a type of obliterating pneumonia that is usually a rare later complication of AI disorders such as SLE and MS (and a raised ANA blood test -can be a sign of SLE) hense the investigations. Once I had got my head around the possibilities ( of MS/SLE)I was disapointed not to get to the bottom of it all. ME is a bit of a limbo land - and unrecognised for the level of debility that goes with it. The lack of knowledge - uncertainty and not being able to plan is very difficult.

Hope you all have good Christmases.

No diagnosis for ME.im still bonkers (its all in my head ME!!!)........im not quite sure how i am going to get to wednesday at 1.30pm when i finish work for xmas week.......... so much going on...this week i have been out playing taxi or doting mum everynight which is so lovely but im literally fucked(sorry close your eyes if my curisng is curse!!)... only all day tomorrow with kids, neice sleeping over tomorrow night, sorting DD pig sty of a bedroom then works xmas do........2 big meetings monday, clinic in wok tues and weds as well as dentisit back to school at 6pm for panto drop of and back to school at 10.30 to pick up what will be a tired moody 11 year old. and then at looooooooooooooooooooooong last a day of just for me where i can sleep all day................

oh and a partridge in a pear tree.

OMG.....just had a thought, your not all going to desert me are you if you get new diagnosis.......( im not been selfish, well ok maybe a little,but you are my life line!!!) I had a mini breakthrough the other day when it comes to some one in work, who happens to be a GP actually understanding CFS. Lead GP said he hadnt seen me for a while, so explained i had CFS and hadnt been too well, low and behold his son suffers too, so he gets it........... he understands the not sleeping, been to tired to get out of bed to eat, pain the lot.......small breakthrough but still a breakthrough...hope he is as understanding when my contract ends in 18 months...

Happy spoons to you all.just one more week to go and then work \9 for some of us might be off the list for a week or two!

belle I was worried you were all going to kick me off the thread if I do get a confirmed diagnosis

I actually feel closer to you all than I do to most of my friends now, you've all heard me moan, cheered me up when I've been at my lowest and never judged.

Never................ and you lot despite what ever we all have are the only people that know how shit days can be but never judge!!!

Who cares what dx we have (IYSWIM) - we all have similar symptoms anyway!

Managed a full day today. Saturdays are more chilled though (eg can wear jeans and trainers and I even wore fingerless gloves all day because the cold was making my hands hurt!) and we had a choir in today, singing lots of carols, it was fab - the whole 3-storey library filled with festive cheer :) we were all singing along!

My feet really ache now.

Exhausted today - I slept through the pantomime & dragged myself through town with my walking stick. Have felt groggy, fuzzy & dizzy all day. I've wobbled all over. like I'm drunk & have been generally horrible and miserable.

A diagnosis makes no difference really - the problems remain the same. And this thread has been great so I'm not going anywhere

Happy spoons x

Oh grockle sorry you had a bad day, try and rest up tomorrow, I know it doesn't help much but try and remember to be kind to yourself x

fuzz glad you had a good day sounds like your getting in the mood for christmas

I've had a nice day, I had to get up early (6am) to take my mum to the train station and pick up her dog who is staying with us for a few days, came back and had a lovely breakfast with DP, fell asleep on the sofa and had a very nice 2 hour sleep, managed to take the dogs on a fairly decent walk was stupidly proud of myself watched a christmas film, then DP helped me at the stables.

I am now feeling very tearful when I saw the gynae he suggested I should have a mirena coil fitted, I've just googled it and although I haven't read anything bad about it, I couldn't stop crying, I'm guessing that means it isn't right for me, the thought of it actually makes me feel physically ill.

DP and I decided a couple of months ago to save for a vasectomy reversal so we can try for a baby, now I might have endometriosis and may have fertility problems and although I want a diagnosis I'm struggling with this one, my heads all over the place and DP just keeps telling me to take it one step at a time which isn't helping even though I know he's right

Grockle ....so sorry you had a shit day, at least you went which if its no good for you DS would have loved it

Fuzz ...... im so missing carols, when i worked in the hospital the salvation army used to come in at christmas and sing at the end of every ward corridor i loved it...... i did love DD sing along at school the other day thou

Smiling ....... we only get once chance at life, and i think no regrets. if your saving then try the mirena.. i have two very gorgeous goddaughters, and their mum suffered terribly with endo. dont give up of you really want a family....my other friend is in process of adopting 2 little sister aged 2 and 8 months......i cant wait.

as for me yesterday was a really odd horrible day. i recieved a card from a lady who was like my mum when i 1st moved away from home at 20... her husband as got early onset dementia.........i was knocked side ways by this news, then my mum collapsed at home last night so was rushed into hospital.....she had a brain haemorrage years ago,and isnt well following 3 or 4 brain ops...so my relaxing night in was spent in A+E.... thankfully she is ok, but i just feel a bit like "what next"

Today will be a pj day me thinks......xxx

So sorry everyone had crap days yesterday ((((hugs and spoons to all)))) (d'you reckon we could petition MNHQ for a Spoon emoticon?! :o) Belle, I hope your mum recovers quickly, what a shock.

Smiling I totally understand about the coil, it freaks me right out too. I get really anxious at the thought of a piece of metal there. But then I also don't even like the thought of taking the pill or anything else that messes with reproductive hormones. A tad hypocritical really seeing as I'm fine with ABs, ADs and painkillers I do think you should try it though if it might help with pain! And I agree with Belle - I think when looking back you don't regret the things you've done, you regret the things you didn't do.

Thank you for my Xmas card, solo :) I'm afraid I've been far too disorganised to do cards for anyone this year :(

I am, for once, actually doing something with my day off today - taking DD to the cinema. It's her first ever trip (she is 5.6) and she is super excited. I haven't been myself since Harry Potter 6! Taking 14yo DSDs too for a nice girly morning and probably mcDs too. We are watching Rise of the Guardians but in 2D. Will need to resist the temptation of shopping afterwards even though I need a few bits, as I am back to FT hours tomorrow, starting with an 8.30-7 shift! I've really enjoyed being back on reduced hours but I am really worried about increasing them. I will try and get through though - I have 5 days straight but then a few days off for Xmas. Can't believe it's 9 days to go! I am so not ready!

Thankfully DS managed to sleep in his own bed for the first time in a few weeks and he seems to be feeling a bit better. Hopefully now we can actually have the evenings to ourselves and wrap all the presents which have just been chucked haphazardly in the cupboard... have a feeling I will be vaguely horrified at the amount I've bought. But I'm justifying it with the fact it has been an incredibly shitty year!

belle I'm sorry you had a horrible day but glad your mums ok, that must have been really scary .

My fil has alzehemers, so if you need to talk I'm happy to listen.

fuzz have a nice girlie morning.

After 4 hours sleep I'm feeling a bit tired so am going to have a pj morning, we are going to pil for dinner so at least I don't have to worry about cooking.

I've decided I'm not going to have the coil fitted yet, ill wait till I have a confirmed diagnosis, if it is endo then there is treatment options which I'd rather explore and if its not then I will reconsider the coil.

There's no proof that the coil will help, In the past I have been on the pill, had the injection and implant because the drs said it would help but they haven't made any difference to the pain.

Smiling - DP & I talked about saving for a vasectomy reveral but then I got ill. I coudn't manage a small baby now

So sorry you may have endometriosis. My mum had it & had laser surgery which helped. I've just realised that my periods are very heavy. From googling, I've found that average flow is 30-50ml each period. I currently have 2-3x that per day I never realised.

Belle, how is your mum today? Sorry yestedary was so horrible.

I second a spoon emoticon! Enjoy the cinema, fuzz.

Cinema was fab, we all really enjoyed it, and went to Pizza Hut after. I have basically quit my degree but still have the NUS card til July so got a discount on it all!

I used to have really heavy periods but they seem to have settled since having my 2nd baby. Cycle is a bit shorter, but I only have one heavy day rather than 3 now.

I would love to have more DCs but it would be a bad idea on so many levels. DH is happy to have a vasectomy but I am not ready to take that final step yet - I'm only 26! (DH is a lot older)

sounds like you have ahd a fab day fuzz, thats god to hear.

my weekend as been topped off with my brother breaking his foot.he is off for operation tomorrow..im supposed to nbe going on xmas night out tonight......everyone keeps saying get your self off you will enjoy it when your there.......truth is i wont in knackered..........am i miserable

Hi, a while back I think Kate linked to a DA notice, do you know where that link was? Thanks

belle your not miserable I turn down most invites because its to exhausting to pretend to be enjoying myself and even close friends get annoyed when I leave early.

I thought long and hard about having a baby because of the way I am, I do worry that its selfish but I'm 29 years old and have made a career out of bringing up other peoples children, I'm fortunate to have lots of support and at this stage we are just saving, that is going to take at least a year and then we will assess how I am if im the same or worse then I will have to make a very hard decision but if I get a diagnosis and have treatment which I'm praying for then there's no reason not to add to our family.

I'm not ready to accept I won't ever be a mum

Hi all...I'm exhausted today! not going to write more now.

isnt life shit my mums best friend died tonight.......she was diagnoised with cancer 5 weeks ago....

So sorry belle :(

Belle I'm so sorry

So sorry belle :(

Really struggling to get up today, keep hitting snooze button. Did 8.30-7 shift yesterday and am really suffering for it already. I got through it but all the aches kicked in towards the end and had thoroughly set in once I got home. Didn't even have dinner as I went straight upstairs. For some reason my hands were numb/tingly all night. Thankfully am only doing half a day today but it feels insurmountable. But I can't go off sick after one day. I enjoyed being back properly but at the same time I feel like an outsider there now.

1 week til Xmas and suddenly I don't feel festive at all!