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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.

Grockle Mon 26-Nov-12 20:30:07

I thought I was the only one with lists for lists grin The theory of OCD tendencies being related to poor memory make perfect sense to me. I check things repeatedly because I don't trust myself. I'm terrible for buying multiples of things because I thought I hadn't bought it - DS has 2 xmas cards for his Dad, he had 2 '7' candles for his birthday and we have had 49 toilet rolls in the cupboard before now!

I'm also a control freak. It's a bit of a problem (not for me!), quite probably due to issues in childhood & cheating exH.

I worry about DS - he's such a worrier & I fear that he has inherited a depressive side from me. I don't want him to go through any of what I have. I'd be devastated. So, when he said the other day, he thought it'd be better if he killed himself, I was shocked & pretty much distraught. Poor baby. Well, 7 yr old.

Yes to mouth ulcers - it's a new thing.

I think you are right about DP sad Today has been lovely & calm without him & DS has been lovely. It's hard work but quite pleasant without DP. But then I get all silly and think 'but I love him...' & then I don't understand why I love him when he makes my life so difficult confused To be fair to him, he has had severe depression for about 18 months and winter is a bad time for him, especially in December with his birthday, DS 1&2 birthdays, Christmas etc. But still, he's so unreliable & self-indulgent. I don't get to hide away for 4 days when I feel shit.

belleshell Tue 27-Nov-12 17:40:03

ive got chuffin chicken pox......................role on 2013 its surely got to be a healthier year!!

smilingthroughgrittedteeth Tue 27-Nov-12 18:13:43

Oh Belle poor you

fuzzpig Tue 27-Nov-12 20:40:05

Bloody hell belle! How crap sad

Hope it passes quickly. thanks

I got a call today inviting me back to st barts on Thursday to see the research trial coordinator. It's based around GET, so I'm a bit apprehensive, but will try to keep an open mind!

Grockle Tue 27-Nov-12 21:24:59

Oh belle sad

But yay Fuzzpig!

magso Tue 27-Nov-12 21:52:33

Oh Belle thats the last thing you need - unless it reboots your immune system somehow.
Fuzzpig thats good - at least you should be at the cutting edge so to speak. It is more than a year since I was diagnosed and have not got as far as you so well done!
Grockleso I'm not the only one that stockpile loorolls. Mums can't hide away when ill. My DH is away for work often, and although I miss him (and would struggle over holidays or weekends) it does simplify life for Ds and I. Know I could not manage alone with energetic ds for long though. Ds needs to be out and about. At last have worked out how to use bold for names!

fuzzpig Wed 28-Nov-12 18:25:31

Aaaargh does anyone else sometimes just forget to eat? It is most unlike me, normally I'm the 'always knows where my next chocolate meal is coming from' type, but sometimes I just neglect to eat anything and get what seems to be a blood sugar crash, or something? Happened in town today, very uncomfortable. Even after I'd eaten, I was useless and dithery so didn't even get anything done angry

Got my hours for next week - 4 days of 10-2, then Friday off as it's my birthday. Dreading the return to work sad I had been feeling optimistic but now I hurt again. My elbows are killing. Why my elbows FFS? I hate that there seems to be no rhyme or reason to the aches hmm

smilingthroughgrittedteeth Wed 28-Nov-12 18:35:04

I don't forget to eat I just can't be bothered, the effort of choosing something, making it and eating it seems too much sometimes.

belleshell Wed 28-Nov-12 19:41:05

amitriptyline makes me eat like a horse.......... i cant stop. i try to choose healthly but i sometimes need crap sugar filled biscuits etc..

I itch.......... and im so pissed off!

fuzzpig Wed 28-Nov-12 19:42:41

I know what you mean. I am indulging in more prepared food now, the odd ready meal, lots of sauces in jars, grated/sliced cheese etc, it's so expensive though.

Mind you now I have to up my salt intake I feel less guilty indulging! DH got me two packs of carrs water biscuits which are amazing with lurpak grin and I don't even have to stand around doing anything... I can just take the packet and tub to the sofa with me <slovenly>

fuzzpig Wed 28-Nov-12 19:44:26

Aww belle have you got calomine?

Also, if you have an old stocking/pop sock type thing, stick a load of porridge oats in it, tie it up and leave it under the tap when you're running a bath.

Bicarb in the bath also good IIRC.

fuzzpig Wed 28-Nov-12 20:45:23

Bugger, it's now started in my knees too. FFS. I really, really thought I was past this, and the ami was working, I've had very little pain since upping to 40mg. And I genuinely haven't been pushing myself. I have managed a little extra like cooking, but always stopped when I felt bad, and now a very short trip into town has fucked me up again. I didn't even have bags to carry.


Not looking forward to London quite so much now! To think that a couple of years ago I would've relished the chance to wander round the city on my own all day. I really want to go to Chappells (music shop) but not a chance in hell.

I need to discuss how compatible GET is with working in a physical job. I can't control how much physical activity I do there. They are already getting a bit impatient to drop my 'special adaptations' like having a chair.

Enough ranting from me... will let you all know how it goes.

Grockle Thu 29-Nov-12 14:04:13

How is a chair a special adaptation? My work were fab and offered me the use of a spare wheelchair.

How're you, Belle?

I've had to come home because DS has tonsillitis, so yet more time off work. He's now jumping around the front room, singing christmas songs. hmm

My Blue badge arrived today, yay. BUT it is too big for the wallet I bought. I splashed out on an expensive holder and it is useless sad

smilingthroughgrittedteeth Thu 29-Nov-12 16:15:17

Anyone mind if I have a bit of a rant?

My lovely fil has alzheimers, due to this my equally lovely mil has paid out a huge amount of money to have the bathroom redone, she has had the bath changed to a walk in shower, new suite, wall between toilet and bathroom knocked down to make one big room, floor and walls tiled, light switches changed, new door, new window, basically everything needed to make it easier to keep dfil at home for as long as possible. The builder doing the work is an old friend of dfil's so we thought we could trust him, how wrong we were, pil went away for a week so he could get on with the bulk of it, they came back to find he hadn't done anything, after a month he has finally installed the new suite and tiled, BUT its a mess, he hasn't grouted properly, the light switches are crooked, the support bars are the wrong height, it just looks like he couldn't be bothered.

Fil has got more and more agitated over it and has started to become violent towards mil, who decided on friday that she had, had enough and walked out, she has been staying with us until yesterday when she went back home (she just needed a break).

DP and his sister decided it was time for them to step in and between us we decided a course of action, DP is going to spend 1 of his days off every week with fil to give mil a break, sil is going to deal with arranging medications and hospital appointments and I got to deal with the builder.

If you've got this far well done, this is where it becomes relevant to this thread.

I rang the builder today and told him he would not be getting paid the full amount he has had 4 warnings 3 more than I would have given him and he still hasn't sorted out the mess so he needs to pick up any of his things tomorrow when dp and I are there and we will be deducting the cost of another builder who is coming to sort out the mess he has made from his bill, we had a brief but rather heated exchange and after I got off the phone I was violently sick, my legs and arms started to ache and I feel ill and exhausted to the point I can barely stand up.

I hate what I've become, I'm not upset by confrontation it is just how my body copes with stress now, and I know I'm going to spend the next few days in bed because my useless body can't cope and I feel guilty that dp is going to have to pick up the pieces at home because of me when he should be concentrating on helping pil.

Sorry for ranting blush

fuzzpig Thu 29-Nov-12 18:30:42

Oh smiling, how awful angry sad

Have you tried posting about this elsewhere on MN, maybe on legal board or something? Somebody may be able to advise. God, how stressful though.

Sorry DS is unwell grockle. Do you have to take unpaid leave? My 3yo had tonsillitis the other week, poor kid, looks like he's got his mum's shitty immune system! He's still not well, but has perked up now too hmm - still, it shows how effective calpol and nurofen are! Hope your DS recovers quickly although I bet he's enjoying having more time with you smile

Yes, a chair counts as an adaptation for one part of my job, where we are supposed to stand (for up to 90mins). sad

My news - hospital went pretty well and the journey wasn't too bad. Met the research coordinator who is lovely, spent about 90mins there as we had loads of questions to go through. Not for diagnosis, but for the study, so it felt a bit less pressured! Much of it was a mental health history thing, which given my massive fucked-upness took ages and really confused me as I wasn't expecting to be talking about it. Prof White dropped in which was nice, and was very surprised by my news about the OCD, as was the coordinator. Everyone seems to think different things about what is wrong with my stupid brain and it's starting to get me down again.

She also told me about the three different diagnostic criteria sets. They use the widest set, but in others you are excluded if you have for example a history of for example major depression. So I feel quite relieved that they aren't using that.

Anyway. I was randomly assigned to the experimental group, as opposed to the control group, so I am going to be doing GET, as a guided self help programme. I am not yet sure how this is going to fit in with work though.

Three more days til I'm back at work. Ouch.

belleshell Fri 30-Nov-12 14:46:56

mmmmmmmm so 1st CBT counselling session this am, i had it via telephone because its in the same building and same floor of my head office hmm anyway it seemed to go well, i thought i was doing well on cocentrating on the now not the future, but it seems im wrong, alot of what was concluded today is that i am still worrying about things that might not my contract been renewed because ive had alot of sick time or not getting a new job if thats the case because of my illness.......... suprisingly my fear as alot to do with social situations too, i am making excuses prior to event not to go so i dont let people down if i am feeling crap......... i have home work which is to record over a week my activities and my symptoms to help me pace.....I did try to tell her i cant pace, i have tried really tried and its either all or nothing.but i did say i would give it a go and that i will.
what you all doing this weekend

im putting tree up!!! yay i love run up to christmas.

magso Fri 30-Nov-12 20:14:47

BellesI had to keep an activity diary too - although I was too ashamed to own up to somne of my longer 'rests'. I thought I was very good at pacing but the first thing I was told was that I was doing too much. I think the aim is to even out the activities so you dont' have to just collaps with exhaustion for a few days. Some things I counted as rest are counted as activity.Frankly I think pacing is treally tricky if you are workinng and running How are you now?
Fuzzpig I'll be really interested in what you have to do for self help GET. I have been feeling mostly somewhat better since my sinus op (and treatment for longstanding infection once samples tested) so I am hopeful of building up my almost non existant muscles again. I've been deliberatly eating more salt and drinking more decaf tea ( for the postural tachycardia). Not sure if its helping or not.
Grockle how are you - hopefully avoiding the tonsilitis?
Smiling that sounds really difficult, and you sound pretty cross with your body - and the careless builder ofcourse.

fuzzpig Fri 30-Nov-12 20:31:30

I was mortified when filling out all the forms for the study. Having to work out how many hours I spent sitting etc. sad I have to do an activity diary too, and try and stabilise it.

I have spoken briefly to the physio, basically I am concerned that I cannot stabilise my days because my job is unpredictable - I don't get any control over what I do. In the example booklet, the lady's working day is entirely classed as low activity, but in my job there will be some sessions that are low, some that are moderate and even some that are high due to lifting.


belleshell Sat 01-Dec-12 17:30:24

Smiling thank you so much............ its my 1st...

smilingthroughgrittedteeth Sat 01-Dec-12 21:55:01

Your very welcome, hope it cheered you up a bit grin

Grockle Sun 02-Dec-12 02:58:56

Smiling, so sorry you have a nightmare builder situation to deal with. I had one a couple if years ago, when I wasn't so unwell & it was horrible then. Hope you are ok.

I find it hard to admit to how fat & lazy I am... How little I can do. I think that's why I push myself - because I don't want to manage so little. That's why the DLA form was so hard. I've had a letter from them saying they're contacting my GP for further info so at least they haven't dismissed me immediately.

DS is much better & I don't seem to have caught anything. I survived my awful week at work & it was much better than I expected.

I've been trying hard to write Christmas cards & sort gifts but I'm feeling a little overwhelmed. I love this time of year. I find Xmas day a bit stressful but love the run up.

fuzzpig Mon 03-Dec-12 08:23:25

I'm really glad I did most of my shopping online in autumn! But I wish we had gone the whole hog and done all of it - we stopped for a while, due to all the appointments etc... Now we are trying to get the last few bits done when town is horrendously crowded. Argh. And I am so bad at making decisions which just stresses me out more. I realised yesterday that it was the first time we'd all been out together (just town - quick lunch, a couple of hours shopping and a milkshake) for several months.

I woke up with a huge sense of dread today. I'm going back to work at 10. It shouldn't feel like this. I love my job, but now I fear it. I'm not ready.

smilingthroughgrittedteeth Mon 03-Dec-12 12:04:17

fuzz I hope work is going ok

I can't cope with crowds anymore, I get really disoriantated and panicky, thankfully I've finished all my christmas shopping and with the help of dp wrapped all the presents, we put the tree up on sat so my plan now is to rest as much as possible up until christmas so that I can get through the hectic christmas week we have.

I have had a fairly good few weeks but I can feel myself heading for a big crash, I'm very tired today and my back hurts, I can't concentrate on anything and I just want to curl up and sleep sad I've got 10 days off over christmas so am trying to just get through until then but I really just want to be at home.

belleshell Mon 03-Dec-12 12:36:46

im back to work tomorrow..... im looking forward to it but the thought of revising for exams in Jan is killing me........ i hate exams, my brain doesnt function underpressure... i know what im supposed to know but exams..eeekkkk and i have to tidy up my assignment.. i have actually do as much as i am doing with that.... just need to sort referencing out and appendix etc..........

Fuzz hope you got on ok..

Smiling how are your pil..

Grockle how was santa........xx

CFSKate Mon 03-Dec-12 12:49:03

fuzzpig - is that the GETSET trial?

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