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.

Our direct debit is doubling too :( hoping that now we have new windows - as opposed to the rotting wooden ones with several broken vacuums (some panes actually had an inch of water in them!) - we won't need the heating on so much. As long as the landlords don't put the rent up again we will manage

DH got me some nice slipper socks today as regular socks just don't cut it. DSDs are staying this weekend and one has got a new giraffe onesie to wear for comic relief. They look warm - I'm tempted...

Pyjama day sounds lovely. We have pretty much had a week of them as the DCs have been off school with chesty coughs and in the case of my 3yo, tonsillitis :(

I live in my onesie! My mum bought me one and it;s SO comfy & warm. I don't sleep in it but wear it in the evening when I'm freezing. It's great because there's no exposed skin so no draughts but going for a wee is a bit of a palava and very chilly!

I think DH will disown me if I wear one :o

Well, tough shit really!

I told DP I'd get him one for Christmas

Both my Dc's love their onesies, but the one I got for me a year ago was too short in the body, so I took it back. Would love one though.

I have a cosy thick fluffy blanket I curl up in - although it is not practical for getting anything done around the house! I use the tumble dryer far too much because it always seem to be raining. The electric bill we just got was huge!

I can't quite bring myself to buy a onesie, I love my snuggy, if I need to do anything I just turn it around and wear it like a snuggly cape

Aaaargh I bloody hate my stairs. All eleven of them. I swear they are killing me!

Felt reasonably well most of the day, then I got up to get my phone from the top of the stairs, and couldn't make it. Instant severe 'head rush', instant heaviness (that's the only way I can describe what my body feels like, out of breath, heart racing. Had to sit on step 10 for a while before clambering back down and collapsing on the sofa.

I feel like maybe it's my fault for sitting down too long on the sofa, but I honestly don't know what else to do. Standing up hurts in so many ways. FFS.

They do say that moderate exercise is the way forward for us, but IME, it is too painful and leaves me weak and ridiculously tired out. Oh God! I don't know how I'll manage to retrain :(

Oh fuzz

I'm beginning to wonder if the pain & breathlessness I have when walking up hills & stairs is due to being increasingly in fit. I've put on loads of weight & the slightest physical activity leaves me shaky & out of breath. It's embarrassing now & I'm really not sure what to do. I have tried to keep on doing stuff but I'm in so much pain .

Solo, what are you training to do? Sorry if you've already said. My memory is appalling

I just don't know about the exercise thing. I know it wasn't lack of it that started this off as I was doing a lot of physical work. I actually thought work would make me fitter anyway.

I have always been very active, I have horses and until 2yrs ago rode everyday horse is now retired, went swimming twice a week, aqua aerobics once a week, dog walking everyday, walking holidays, now I can barely manage to walk up the stairs.

Even a small amount of exercise like a gentle stroll with the dog leaves me exhausted so I'm not convinced gentle exercise helps, my body obviously just wants to stop doing anything and no one seems able to tell me if I should let it and just do nothing or if I should push and start exercising again, I'd love to start swimming again, I've put on a stone, but last time I tried I managed 1 lap and felt so sick and dizzy that DP had to help me out, it was embarrasing and not something I'd willingly repeat anytime soon.

im sure i have read that graded exercise as been the way forward with cfs, but actually now it can do more harm than good.i know if i take dog and distance otherv than end of road, my insides burn.......and the heaviness is unbearable........ im not convinced exercise is good!!

I don't think exercise is good, either. My doctor asks every time I see her if I am exercising regularly. but it's kind of difficult when you can hardly walk up the stairs.

I felt a bit better the last few days because I haven't been able to do anything because I shut my hand in a car door last week. So yesterday I took DS4 to the psychologist and then popped into Aldi for the super six, some bread and milk on the way home. I had to get a taxi home and haven't been able to do anything since because I'm so tired and heavy feeling.

I'm so fed up with it, I can't do any of the things I used to and I can't meet my family's needs either. Even typing this wee bit is confusing me and taking ags.

I helped out at an after school event yesterday, something easy and not overly active and have been so ill all day today that I've been in tears.

I've made an appointment to see my GP next week, I feel like since the endocrinologist discharged me because its not thyroid related that nothing is being done!

My lovely normal GP has been away for a few weeks and the rest of them just don't listen, she is back on monday so I've pre-booked an appointment for wednesday.

Slightly weird question but do any of you suffer with sore eyes? My right eye often feels dry and itchy and feels swollen even though its not.

Yes, I get sore, stingy eyes quite a lot, especially when I'm tired. My eyes run a lot as well.

I am so cold just now. I can't get warm at all.

OMG, I've oe 2 days at work. I had to leave at 3 today as everything was fuzzy & my eyes were sore & stingy& I felt so sick. I came home, crawled up the stairs & slept til 5. I'm back in bed now. I need to finish my DLA form by the weekend and I have a mass of paperwork to do for work by Thursday. I'm really scared that I will have to stop teaching.

I've never been on benefits so ( have no idea what, if any, help I could get. How would I pay my mortgage (it's cheaper than local rent) & buy food if I can't work?

I can't remember the last time I walked the dog properly. DP takes her for 5-6 mile walks when he's here so I don't feel too bad for not walking her when I'm alone. Not ideal though.

(((Grockle)))

How frustrating. How did they react to you going home early?

I dream of a career in primary teaching but it's just not realistic for now.

Not sure about benefits - I know DLA is not means tested but others are, I've always rented (and not a hope in hell of buying now!) so I don't know about the mortgage issue, but I think housing benefit is only for tenants and not homeowners. There's other things though. Maybe you could see someone at the CAB or local town hall? They should be able to tell you what's available.

Completely shit isn't it. Memory gone blank, what's the latest with you seeing specialists, are they going to do more tests?

i worked 8 hours over 2 days last week thats all.....i spent sunday pm in bed...with DD watching tv at side of me, whilst DP went to see his stepmum in hospital....i felt so shit not going and so guilty DD was sat in bed all afternoon with me, when i was 11 i was never in im sure..

this week i have worked this am 4 hours and to put it in terms i feel say it all im F**KED off in every way, how in gods name will i get back to 30 hours.... i am now panicking about money too....

Housing benefit is means tested and is for tenants not homeowners.... i dont theink there is a cat in hells chace i will get DLA.

i would cry if i had the energy!!

Indeed, sometimes I do have a good cry but a lot of the time now I'm just too worn out. I was filling in a mood questionnaire as part of my pre-assessment stuff, and I realised I actually don't feel that depressed a lot of the time, which is unusual for me, but I know it's because I am so exhausted and can't even think!

hi

don't know if this is any use at all but i think my experience may help with the whole graded exercise thing

i have had ME for ten years and was v ill and off work from day one - the first three or four years i was ill in bed or housebound

when i started to feel a bit better i wanted to be able to get out and see people and do something nice and social and relaxing whenever i was able to

so i started going to a local cafe with support and someone who could drive me there - literally five minutes in the car.i went the best time of the day for me later afternoon after resting in bed or sleeping all morning and my aim was to go out to this place most days and be able to do this pretty much however i felt.it was almost like getting my body/muscles etc able to do this activity without thinking about it - the same as every healthy person does

it was soooooooooo gradual and obviously there were times when i couldn't go - sometimes for weeks at a time but after a few years i am pretty much able to do this whenever i want to and we do most days. i am v fortunate to have family who are available and willing to help with this - i can now go and meet friends too but have to stick to my resting morning and no more than five or ten minutes travelling in car.as you can see tiny tiny steps but it seems to work for me.

realistically if it has taken ten years to get this far there is not much chance i am going to ever be able to walk for miles again but this is so much better than how things were before - think really small goals but worthwhile ones and they may be achievable

That's what I'd like to end up doing really. I do believe that GET could help me (I am really trying to keep an open mind) BUT only when I'm ready for it. At the moment I feel like I just need to give in to it :( there have been several times lately where I have been in too much pain to even sit up.

What I want to know is, can GET actually work when you have a job to go to as well - in my job I have little control over which tasks I do each day, and some are physically demanding. The couple of books I've read have said you need to get your body stable - not getting worse - before you start GET.

Standing is a big problem at the moment, I am now trying to make the transition slowly because if I stand up fast I feel very faint. I really hope this is temporary.

i def felt ready to do it when i started - like i was ready to move on but it came out of nowhere so looking on the positive side it could happen anytime for anyone

i am really not sure that working is compatible there are too many variables each day and at the end of the day i am just talking about two hours v gentle activity at a time of my choosing each day

Grockle I am having to retrain in my job as I've been off on mat leave and a career break for 6+ years. I am a prison officer and it's very demanding.
During this career break, I have for the first time ever, been on benefits. It's an eye opener and a minefield! I too have a mortgage and my determination to keep my house has let a lot of other things suffer. I will tell you what I know, but you need proper and knowledgeable advice really.

I do believe that if your gp will help start the ball rolling, that you can get ESA, read about it here. I didn't have this.
You can, once you have been claiming for a set number of weeks (this was for me on Income Support/Job seekers allowance) claim for part of the interest (if you haven't remortgaged!) to be paid (hellish paperwork!). I had remortgaged and personally have to find 4/5ths of my mortgage payment myself ~ hence cutting back on so much else. You would probably also get CTC and possibly your council tax paid.

Graded exercise is what 'they' would have us do, but it's too much most of the time :( I just want to be normal again!