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

(995 Posts)
Grockle Wed 11-Jul-12 22:27:59

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.

Jen1fa Mon 09-Feb-15 22:19:18

Hi everyone.
Your stories are heartbreaking. You express how it feels to struggle with ME so eloquently it has given me great insight. I have a young lady on my staff who has ME/CFS and I can see she's really struggling but I don't know what to do!
We talk, I allow her late starts and early finishes when she needs them without question but at the end of the day the job needs to be done. I hate seeing her suffer and I know she's terrified that she might have to give up her job.
I know many of you are also struggling but has anyone found anything that helps, that we may not have tried....?
She's a teacher by the way. Thanks for any help and I send you all virtual hugs xxx

somedizzywhore1804 Sun 25-May-14 05:52:34

Hi all- sorry to hijack... Anyone have any info on cfs and pregnancy?

sanxi23 Sun 25-May-14 05:14:48

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Grockle Mon 24-Dec-12 23:31:29

Whoops blush

New thread here

Grockle Mon 24-Dec-12 23:30:57

[ New thread here]]

smilingthroughgrittedteeth Mon 24-Dec-12 20:00:38

Merry Christmas xxx

Grockle Mon 24-Dec-12 18:18:12

Merry Christmas & spoons to all x


belleshell Mon 24-Dec-12 12:54:20

Ouch my head hurts! i cant get rid of it and it isnt even a hangover!! oh well the crib service will kill or cure me, or will that be the little christmas spirit i have after!!!xx

fuzzpig Sun 23-Dec-12 22:43:10

I've barely done anything today. Except wrapping presents - there are still a few unwrapped blush but they aren't needed til after the 25th. I didn't get to town in the end as I have been very achy and dizzy since yesterday. Really hoping that most of tomorrow (after a brief train journey in the morning) will be fairly relaxing.

I have decamped to the sofa as DS is playing up and DH is with him in our bed. So I am watching vicar of Dibley and eating mini muffins!

belleshell Sun 23-Dec-12 17:13:27

wishing you all a lovely christmas and more spoons for the new year....... i too have cleaned, pressies wrapped dog bathed!!! ( she went for a muddy walk this am) bring on boxing day.we are celebrating a day late with all kids........grin as for thread crap too but agree we should use the word sppons..xxxxxxxxx

smilingthroughgrittedteeth Sun 23-Dec-12 09:09:40

Yayyyyyyy fuzz and grockle, I'm not one to say I told you so but didn't I tell you it would all be ok winkgrinthanks

I had a fairly relaxed day yesterday and didn't do much but have woken up exhausted today, I've got to drop off some christmas presents and bake some cakes for DP to take into work but I'd quite like to spend the day in bed.

fuzzpig Sun 23-Dec-12 07:25:31

Yay well done grockle! I learned to do knit/purl stitches earlier this year but I am not a natural at all, and now my hands get achy a lot so I haven't carried on with it. I would like to try crochet instead one day. At work we get loads of amazing craft books and I could spend hours gazing at the amazing creations that I haven't a hope in hell of recreating! Same with cookery/baking books grin

Your festive day sounds lovely - we do similar with my DSCs and it works really well. We do the whole big roast, crackers, presents, games etc like a whole other Xmas day.

I am not sure of an exact title but it should definitely involve the word 'spoons' smile

Grockle Sat 22-Dec-12 23:17:30

I've FINISHED! Hurrah!

When I said 'only', I meant a blanket in 1 colour & 1 stitch is quite simple, nothing complicated. I learned to crochet when I had a bit of a breakdown a few years ago & it's something I can do when I am feeling agitated & need to keep my hands busy. I like the rhythm of it & can do simple projects without having to concentrate. I'm rubbish at other crafty things.

Your day sounds lovely, Fuzz & you sound very organised smile

We're planing a little festive day tomorrow. I've made all 3 DC a little stocking that they can open when they wake up. Then, we'll do christmas presents & have a birthday party lunch (so that all 5 of us can celebrate mine & DP's birthdays from last week).

Yes to new title but I'm rubbish at stuff like that so am opting out!

fuzzpig Sat 22-Dec-12 22:38:20

Oh and we really need to come up with a name for thread #2 grin

fuzzpig Sat 22-Dec-12 22:37:09

Arf at 'only' a crocheted blanket! grin I couldn't do that in a million years!

I feel a bit less stressed too. Sorted out presents for Xmas eve - both are very practical straightforward people (in a good way!) and are more than happy with vouchers.

We put the tree up - I barely did any but it was lovely watching DH and DCs do it and listen to carols. This evening DH and I wrapped loads more presents. More to do tomorrow and I think I may need to nip to town, but not for much. We've placed our grocery order too and have decided what we will be eating. Things are shaping up nicely now smile

Grockle Sat 22-Dec-12 20:29:23

I feel very much less stressed now - I iced the christmas cakes, made mince pies & finished wrapping presents and am more or less ready. I do need to finish making my sister's present. I started it in May and it's STILL not done. If I'd concentrated, I could have made it in a week. Must stop putting it off - it's only a crocheted blanket so it's not difficult!

Hoping everyone is ok. Love & spoons to all.

fuzzpig Fri 21-Dec-12 17:03:13

Well I made it through a whole week of FT!!! smile

Am slightly stressed as both we and the friends we are seeing on Xmas eve are both mega procrastinators so we have not organised a thing in terms of gifts. Oops.

Grockle Fri 21-Dec-12 15:04:29

We're going to need a new thread soon!

You're all right about Christmas. I think, as parents, we put a lot of pressure on ourselves to make it perfect but the DC won't care at all... it will be magical and exciting anyway. I think I've found it hard this year because I haven't done all the things I usually do - I've bought mince pies, not made them (although I made the mincemeat back in September) etc.

I'm meant to be out tonight but I'm so tired now, I feel sick. I spent the entire day wrapping gifts. This weekend is going to be busy because DSSs are here - 3 boys aged 7,7 & 6 the weekend before christmas with a forecast of torrential rain. Yikes!

Love & spoons to everyone.

fuzzpig Fri 21-Dec-12 12:11:39

Thank you smiling!

I know that really. My DD is especially excited anyway and unless I am truly grumpy on the day (which I don't think I will be) I don't think anything will take that away from her.

Have had a festive morning anyway - the managers made us bacon butties and Buck's Fizz at tea break! Ho ho ho grin

smilingthroughgrittedteeth Fri 21-Dec-12 08:29:08

Oh and in case that's not clear enough Grockle and Fuzz YOU ARE NOT FAILING ANYONE {stern look}

smilingthroughgrittedteeth Fri 21-Dec-12 08:27:00

Imo its impossible to fail at christmas, all the presents you have brought and everything you do no matter how small will be done with love for your families, how can that be failing?

It took me 3 days to decorate the tree, DP put lights around the window and I have some christmassy candle holders on the fireplace, certainly not my usual standard but its good enough to make it feel like christmas.

Food in this house is from tesco, they make cakes so why stress yourself out making them. Get online and have everything you need delivered, millions of perfectly healthy people do it so how can that be failing?

fuzzpig Fri 21-Dec-12 06:51:25

Yes it is my last day today! And I'm actually awake enough to have a shower for once blush last night I only just managed to stay awake for new Big Bang Theory and went straight to bed. I actually managed to eat dinner for the first time this week.

I was just hoping to be a bit more Christmassy, because in the past it's been a bit like 'Sunday with presents' IYSWIM, we have no family here (we have DSCs on a separate day - which is always fab - as they spend 25th with their mum) and I struggle with the day anyway even before I got this stupid illness.

Haven't even decorated yet! House a complete tip again too even though we decluttered lots this year. I'm just doing the tree tomorrow, not the bannister etc like I often do, because I know my arms will hurt as it is. Need to wrap loads more presents, I have gone overboard again blush I don't even know what food we will have on the day!

Right I really need to get up now!

belleshell Fri 21-Dec-12 04:20:56

Im am up and wide awake thanks to something spooking the dog, (who is now laid at side of me snoring!!. Grockle, have you failed xmas....? ??grockle eat cake the yorkshire way with cheese!!! saves icing, and i havent even done cakes this year, much to my mothers disgust, i will do it next year! have been buying for months.....the kids and DH will love anything you have bought... I think for everything you have been through and still working (last day today i hope) you 2 have probably done more than others without this Fecking condition..........

I had counselling again this week (CBT!) i dont really think its doing very much, i know what makes me tired and i know i need to pace......but in the real world, i cnat take a 10 min break in the middle of a busy clinic, or school run, or whilst makeing tea!!! and it was suggested i iron whilst sitting down.. with my grip as it is the iron ends up on the floor at least once every session i do!!! ill end up with more scars than i have already.( i am becoming so clumsy!!)

What i will say is that when i visited the psycologist at my last ME group during a crash, ( i was crying so much i had snot!!!) the one to one we had helped me make the biggest decision of my life and one i havent regretted till now, and that was to move home.........he never suggested it just talked to me and i made my own mind was almost like he gave me permission to come home....... so dont lose faith all with the groups.......i feel because what they tell me really doesnt fit with my life, (and i also tell my patients very similar things which i really need to change) i switch off.

I was congratualted this week for lowering my depression not depressed, but questions like do you look forward to social events are gunna score high (no's) when i cant literally get out of bed...

good ive ranted on there........sorry.

love and spoons to you ALL X

Grockle Thu 20-Dec-12 22:55:22

Welcome, wherethewildonessnow. Sorry you have to join us sad

Fuzz, back in the summer, when I was really struggling with everything, I ran away. I needed to get was listening to me & I felt hopeless & scared. I stuck DS & the dog in the car & we drove 200 miles. No-one knew where we were but DP panicked & it got complicated. BUT I am very tempted to do it again. For a few days, I had nothing to fret about (other than being found) & we ate & slept when we wanted & did as much as I could manage.

I am failing at christmas too. By this time, I am usually ready. I haven't iced the cakes, wrapped presents, written cards or anything. I hate feeling so useless & disorganised.

My birthday has been lovely, thank you. And I have finished work for 2 weeks. Yay!

belleshell Thu 20-Dec-12 20:56:14

Welcome wildone.......xx

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