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 really feel for you. I used to spend all day in bed / on the sofa hating myself and it is no fun at all. Really try not to be hard on yourself. Just rest if you need to and tell yourself each day spent like that is one day closer to the end of this phase. It won't be forever but if you try to overdo things while you're feeling rotten you will prolong the illness. Pretty hard advice to take I know because I totally identify with feeling like I was wasting my time, but resting is helping you heal and getting you towards your goal.

Thank you Anste - that website is great. I feel far too old to be looking at it!

Helen, that sounds awful. I'm glad you are better now. What a nightmare.

Belle, I hope the day in bed helped.

Smiling, I'm sorry you've had such a hard day. I often wonder 'why me?' It's very unfair, isn't it? I think of all the years I ate healthy food & didn't smoke. I don't really drink (very occasionally), I don't do drugs... what was the point in all that if at the age of 34 I feel like a 94 year old? I may as well just have sat on my arse all the time & eaten chocolate and doughnuts.

I think me & DP will be ok. I'm just struggling so much with everything & he said the wrong thing. I'll sort it on Sunday - I can't be bothered now.

Do any of you know about emplyment rights? I've started a thread in Employment but since you know the background, I'll ask you here...

I spoke to work yesterday and agreed to go back mornings next week. They said they'd check with HR in case it needs to be for more than a week & they'd call me today. They called at 3 and left me a voicemail saying I couldn't go back and they'd speak to me on Monday. I called back 30 mins later when I got the message but no-one answered. I'm not sure what to do... can they really say I can't go back? Can I just turn up and work a full day anyway? I don't know where I stand.

I guess it depends what you said when you spoke to work? Maybe they think you aren't ready in which case they can't let you go back yet. They probably have set procedures/structures that they have to stick to.

When I'd had a month off I went back on a phased return with the idea that if it was too much we would reassess. It may be that you do similar in which case occupational health should come up with a plan for you.

Hopefully people on the employment board will be more knowledgeable than me!

I don't really know anything about employment law, I don't have a hr department I just have to negotiate with my bosses but DP says that at he's work unless someone who has been on long term sick has a meeting with hr they aren't able to return to work so maybe its just that you need to talk to hr first to discuss a phased return.

I'm the same I have never smoked, don't drink, eat a healthy well balanced diet and excercised regularly and I think that's what I find the hardest to take it makes it seem even more unfair.

Ive reached a new low DP works nights and I've spent the last hour sobbing because I don't want him to go and leave me how sad is that?

Smiling, you're not sad, not in the way I think you mean anyway. I can totally identify with that sort of emotion. I used to call my husband back from work but that would mean he would end up working into the night to get his job done after he had looked after dd and me and then I would feel even more guilty. I wish there was some way we could relieve the guilt and self- destructive feelings we have when we are suffering in this way. Can I persuade you to not feel bad about yourself?? I really don't think you should! None of us should. We're just trying to survive on about 10% of the energy of a normal person!! Btw, I was fit and healthy and a very driven person too pre-cfs. I'm sure I read somewhere that cfs actually tends to hit fit healthy people more than lazy / unfit people. So if it is a judgement, it's sort of a compliment!!

Also, (sorry I'm a bit of a chatterbox) Grockle, I did a course in work about sickness and you would definitely have to be assessed for fitness to return to work after telling them you are long term sick. This should be a very good thing! They should be able to get a plan together that helps you and takes account of your situation. This should be the best balance of you working if you want to, but never working so much that you make yourself worse. If you don't feel you're getting that respect and fair treatment from them seek employment law help. If you can't afford a solicitor (I know I can't - I'm not judging you) get in touch with the citizens advice bureau. Take heart - this could be a huge relief for you.

smiling i dont think its sad either to want your hubby at home. so please dont feel bad about it..........

i have had a complete meltdown tonight, told DP a few (alot) of home truths, said if he wants to help then he has to do things without been asked..i am far too independant and stubborn to ask, especially more than once, after a shit week where i have nagged at everyone it seems my guard is well and truely up ( the one that says mess with me and see what happens me and my kids come first) the poor sod, i have never ever been like this and we have been together 2 year on monday. we was going to aim to get to the local for a drink last night ............that didnt happen instead i was tucked up in bed by 9pm feeling very sorry for myself.......... oh well DD and i might make it out for lunch today...... or a chip butty depending on just how far i can walk.i promised her a little treat cos i have been a cow all week..............i hate ME but actually this week i have made some decisions.i cant work 30 hours.i just cant so i need to go see my employers and try negotiate less...i have applied AGAIN for DLA i dont hold out much hope but im trying to be positive.....i have had an appointment for CBT assessment so lets see from here what happens....

have a good weekend all

Morning all. Are you ok, smiling? Is DP back now? I hate when my DP goes away (unless he's called me pathetic in which case, I shoo him away). I don't think it's sad at all. It's quite daunting being on your own when you feel very unwell.

It's nice to think that CFS tends to hit healthy people. It's shit but reassuring, I suppose. And I have so many blood tests etc that I know there is aboslutely nothing wrong with me (other than falling apart). At least I have nothing life threatening.

HelenKim, I've contacted my union for advice about work so hopefully they'll be able to help. Having fought to be allowed to go back next week, I feel horrendous today I think you've made some good decisions Belle. I hope you have a lovely lunch. I promised DS dinner form the chippie tonight!

I'm ok Grockle DP got home at 7.30am and made me breakfast in bed before he went to sleep.

I managed to drag myself downstairs and have spent another day on the sofa, am so exhausted I can't even stand up long enough to make lunch.

Had a phonecall from my mum who told me I would probably feel better if I got up and did something instead of lazing around, I'm afraid I lost my temper, I'd love to get up and do something/anything but its physically impossible!

How do you all cope with the brain fog, I have lists all over the house to remind me of things I need to do and discuss with DP but on days like today I forget to look at the lists and then get even more annoyed with myself

Belle good to hear you've made some positive decisions and hope you and dd had a nice lunch and it didn't tire you to much.

I'm glad you got breakfast in bed

I don't cope well with brain fog. I am incredibly frustrated with myself for forgetting things (I took a top back to a shop last week to return in. I made sure I had the receipt, parked the car, paid for the pay & display ticket, checked for the receipt. It wasn't there. So we had to go home to find it. When we got home, I remembered I had put it in my back pocket so we had to go all the way back to the shop! Argh!), I feel stupid. The forgetting words is embarrassing although my family are used to it. The worst bit is having absolutely no recollection of conversations people say I've had. I feel like I should make notes or something. And I forget people - I don't know who they are, can't place them or figure out how I know them which is awkward.

I'm exactly the same, words and names are on the tip of my tongue but I can't remember them, I forget what I'm saying half way through a sentence, I forget conversations too and often find myself staring aimlessly into space trying to remember what I was doing, the more frustrated I get the worse I am

The brain fog is the hardest to deal with for me. I was, unlike most of you, never a really active person rushing round doing everything - so I'm not grieving for that.

I am really, really struggling with the way my brain is deteriorating right now. I am (at risk of sounding mega smug here) a very intelligent person. And now I feel stupid. My brain is the ONE thing I ever liked about myself. And now it's falling apart before I ever really accomplished anything. It's not fair.

In a super bad mood now as it looks like I won't get a chance to retake the whole OU course I'm doing. Just defer the exam which frankly I have no hope of passing.

I'm sorry about what your mum said, smiling :( is she always unsupportive? I expect a lot of people think that about ME but you don't expect your own family to think you are lazy do you. Don't blame you for getting mad at her - I hope she took on board what you said.

Oh Fuzz

It's very difficult to adjust to all this, I think. Especially when there is the possibility that it is forever. It's a bit depressing.

I was never bound for Mensa but I used to be fairly intelligent. I read proper books, got my degree, did my job quite well, kept on top of paperwork and could hold a conversation with nobel prize winners without feeling too uncomfortable. Now I can barely hold a conversation with my 7 yr old and fit in quite nicely with the non-verbal children at work. They flap & point at things & I do the same. DP says it's the perfect place for me to work At least the children are known to be severely disabled. I'm just expected to function like everyone else. And. I. Can't.

I borrowed 2 books from the library this morning about CFS. It's ironic that they are big thick books with lots of text. For people with brain fog and concentration difficulties?

Is there anything we can do to help with the brain fog? There must be something?

I think for me the weakness and inability to do ordinary things is the hardest. The brain fog gets to me, but I suppose I can accept the loss of 'my' life (academic/work/hobbies all mostly put on hold when ds arrived) more than I can cope with the sheer lack of function as wife and mum! Ds (who has sn and no danger sense) has been put at risk a few times when I've not been able to run after him or fainted trying to.At work the younger staff tend to treat me as a hasbeen and I know I am struggling just to the routine stuff which is hard .But it keeps my hand in - in the hope I may recover enough to go back to research and teaching.
Sorry about your OU course Fuzzpig. How long can you defer?
Belle sounds like you have made a good decision.

I guess it will be a year deferral. But by then I won't know any of the stuff I am supposed to. My brain has always been a bit weird - those grades I got (3 of them above 90%, which my tutor has never awarded before) were achieved without actually understanding much of the course at all. I am hyperlexic (linked to ASDs) and can't necessarily understand what I read. But due to a very logical (too logical I often feel) mind I can work out easily what is required and get good marks without really understanding why. I have always been able to do that. But now I can't because my brain is mush. There are still subjects I do understand naturally (maths being the main one) but unfortunately this course is not one of them.

Fuzz I'm sorry about your degree its heartbreaking that this illness can take something you've worked so hard for.

My mum is supportive but is very much the kind of person who just gets on with things and she is struggling to understand that I just can't get on with it, because I'm not tired as in a nap will help but completely and utterly physically and mentally exhausted.

Let us know if the books are any good grockle, I found similar with a book on Aspergers, by one of the leading authors on it, I waited ages for it but I couldn't read it. Layout is so important if you have any kind of processing problems, I wish authors and publishers would realise this. I find similar problems with some websites too and I am really fussy about it.

I am waiting on a new edition of a book about CFS, can't remember the name but I think it's arrived for me at the library so I'll let you all know if it's any good. Unfortunately so many of the books are hideously outdated.

oh no my inability to do anything without feeling drained is my biggest issue!!! i used to work 3 13.5 hour shifts and never flinch......... im lucky to manage 3.5 hours atm, i actually think im scared to do anything now for the fear of how i will be afterwards........

we did make it out for our dinner ( or lunch depending where in UK u live) A and it was lovely but i wanted to come home afterwards.no browsing in shops etc!!!

tonight my biggest issue is headache!! im not sure if its too many or not enuf painkillers........ ffs

Skim read through, but don't have the energy to reply to each post.

Went to a very loud party on Friday evening. I was driving, so no alcohol (no big deal as I'm not a drinker anyway), but when I took my Uncle home, we went in; I actually curled up on the sofa and went to sleep! drove Mum home, then us...I am knackered!! It has made my Tinnitus worse and has made me feel really ill today too.
Got an email from work telling me that I will have to retrain. I don't honestly know how I'll get through that. I need to try to start running, but I know what will happen when I do...and I know what will happen if I don't. Feeling very scared which is not a feeling I like as it's just not me.

That sounds very daunting. Do you literally mean running? That would be unthinkable for me, which is a shame for me as I had started jogging a couple of years ago.

I'd love to start running again, its one of the things I miss the most but there's no way I could do it now, I'd get 100yds and collapse.

I have put on a stone and a half since I got ill and desperatly want to lose it but have no idea how to, I eat less now than I ever have but I I'm not as active as I used to be, I used to run, swim, take 2 long walks a day with the dog and horse ride now I just about manage a 10min amble down the road with the dog!

dear god running!!!! walking from car to office in work just about kills me.......... solo, will you have to do the whole po training!!! im not sure i could sit through all the mandatory stuff either like fire lectures, health and safety etc....i physically wanted to cry in my last fire lecture, it was torture......

today after 2 hours out with the family, i can barely walk today i feel like ive been out partying all night, headache ache from top to toe leadened arms and legs.........ggggrrrrrrr

my dd is bored!!!!!!!! i have sat in the kitchen whilst she has made flap jack, and curry for tomorrw.bonus tea is done, the mess is like a nuclear fall out!!!

oh well keep smiling, and will bed time to come very soon!

All I can say is ladies that in 2009, I was like you. I was in pain all over, every muscle, every joint, all the time. I was permanently exhausted and yet slept badly, sometimes very badly. My thoughts were so disjointed that I could not complete a sentence, I stopped recognising people I actually knew well, my memory was shot, I had forgotten how to drive (suddenly on a major road - very scary), I would get up in the morning, come downstairs (the only time I tackled the stairs in a day) and would sit down exhausted.

I was diagnosed with CFS by a consultant and this was confirmed by my GP. I was basically put on the scrapheap, offered antidepressants and, when I turned them down, sent away.

This morning I have walked for two miles to pick up a bike and then cycled for ten miles. If it wasn't raining now where I am, I would be gardening. Tomorrow I will be back at work.

I did not have CFS at all. I had a vitamin B 12 deficiency, coupled with severe vitamin D and ferritin (stored iron) deficiencies. All the doctors I had seen said that my test results were 'normal'. In desperation, I tapped into internet resources and, although it has been a fight, I am now probably 80% recovered.

If anyone would like to share their blood test results, I would be happy to help.

I've put on loads of weight too - I've never weighed this much.

RockinD, it's scary how many people say the same as you - Vit B12 deficiency. Why is it not picked up on? I'm glad you are ok now.