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'm in. :) I feel sorry for whomever is after me as I am rubbish at that sort of thing.

Also if anyone else wants to be in the FB group (it's set to secret) then PM me.

I've only just got up, worked all day yesterday, lay on the floor most of the evening and was asleep in bed by 9, so 12 hours sleep, but still very tired and massive headache

fuzzpig I can sympathise I'm still paying for the extra 3hrs I did at work this week, I managed to get up for 2hrs yesterday, and haven't got up at all yet today

Am working monday,tuesday,wednesday 7.30-6.30 this week and actually feel sick at the thought of it, I'm back to the stage I was at before I went off sick, where I just want to be at home so I can sleep/retreat to bed when I need to.

im not sure what stage im at..........i hurt from top to toe......inside out and back to front...................

Smiling, that sounds gruelling, even without being ill. Are you really sure you should be doing all that? I'm doing 5 hours Monday - Thursday & the thought of that is making me feel sick. I'm really scared that I'll have to permanently change my hours or even my job.

Belle

DOes anyone use alternative treatments? Or those copper bracelets? Or anything?

grockle I used to work 7-7 mondays, tuesdays, thursdays and fridays and do temp work most wednesdays plus babysitting on fri and sat nights. So I have cut right back, I can't reduce anymore as my bosses have to work certain hours.

The only thing that makes it even slightly bareable is that both children are now at school so I do get to rest during the day but its still really hard.

Grockle I keep hearing about alternative therapies etc, supplements in particular. I just don't think I am in a place to try anything yet. I just want to give in to it.

Sunday has not been enough to recover from a working week (despite having Friday off too) - normal people go shopping or to somewhere nice on their days off, have fun with their DCs or even just catch up in housework, but people like us just have to stay in and do absolutely nothing so our limited energy reserves are kept for surviving work. Not fair is it!

I see an osteopath and he helps with all the aches and pains, I try not to take medication if I can help it as they tend to set off my IBS but am with fuzz at the moment I don't have the energy to try alternative therapies and I'm convinced there is a reason I feel so awful so am focusing what little energy I have on finding the cause so I can treat it and feel like me again.

Oh Smiling.... hope it goes ok and you have enough time to rest during the day.

I've actually had a nice day. I felt horrendous yesterday but have been quite chirpy today. I baked then walked (with crutches) to see my sister & then up to the cliff. I love going up there - it blows away the cobwebs. I also made a seagull costume for DS and am about to crawl up to bed.

Hoping everybody has a manageable week.

1, Solo
2, Grockle
3, Smiling
4, Belleshell
5, Fuzzpig (I need your address please)

Anyone else?

I will do it soon, promise!

I have my occupational health assessment tomorrow- don't know what to expect. I'm achey today & so tired - I am really not managing work at all. Oh we'll, I'm tucked up in bed now so all is ok. Hope everyone else is alright.

hi everyone
i have got the drs tomorrow - a v rare visit there for me as i am never well enough to go
does anyone else suffer from these symptoms - not sure if these are ME related or not

severe pain in right hip - worse upon walking so much so now that i can barely walk
pain goes down leg when walking and hip almost clicks in and out of place
uncomfortable in bed when laying on either side but not all the time
also sometimes pinchy nerve type pain on inside/top thigh of same hip
i have had this pain off and on for about a year but assumed it was ME stuff as it came and went however, now it is pretty much constant

can anyone help - i am anticipating the drs confused face even now

thanks

I have very achey hips and sometimes get severe cramp in them, usually when I'm very tired opposed to just exhausted

I also get sharp shooting pains in my arms and down my legs but it isn't made worse by walking.

I get hip pain too. I thought it was to do with pg with my Ds which was when it started and I don't recall it so much after losing the excess weight I'd gained with him. It did come back though and I am most uncomfortable in bed, laying on it.

referred to hospital for xray to see if it is arthritis - dr not really interested tbh

At least the doctor refered you for an x ray and didn't just send you away with painkillers.

I'm lucky to have a really good GP who listens and is supporting me in finding out what is wrong with me but even she looks at me sometimes with a wtf now expression on her face, I can understand why, it feels like I'm there every week with a different problem

I have pain in my lower back and hip area but I assumed it was due to reduced activity/ getting stiff. Had a bad fall many years ago and knocked my coccyx out of alignment. I see a chiropractor regularly but it is expensive. I tend to cease up ( in severe pain) if I try to skimp on the visits. I tried Pilates but got iller so gave up.
Outolunch I hope the X-ray is helpful to your gp in helping you.

thanks magso

I saw the rheumatologist this afternoon. OMFG, I am now crapping myself.

She asked millions of questions, looked at me walking, moved bits about & poked me then said, rheumatologically, I am fine. Which is good. THEN she said she wanted to do more tests to rule out other scary things, so sent me for loads of blood tests and asked if it was ok to do an HIV test So, she's testing me for HIV, Hep B &C as well. I never ever even considered HIV & have more or less convinced myself that I have AIDS & am dying. I KNOW this is highly unlikely but, well, I'm going to panic. SHe also sent me for a chest & pelvis x-ray.

So, no helpful news, lots of new things to fret about but it all seems positive in the long run. Hopefully.

Oh Grockle I'm sure its nothing to worry about, just think about how many tests you have had done that have come back normal, She probably just wants to rule out more things.

I had the results of my last lot of blood tests today and they all came back clear, I had a bit of a cry, think DP and dr thought it was relief but in truth I was crying because they hadn't shown anything, I just want answers!

Eek that's scary, I am sure it is just to tick the boxes so to speak. I remember having a standard HIV test during pregnancy and it instantly made me panic even though I had no reason to believe I would be positive. It's just that even the thought of it makes you scared!

Good that you're being x rayed too.

Yes, all good, I suppose. I am tired of life being so hard. DS's school are very worried about him & his mental well-being. I'm so sad. My being ill has made my life very hard but has such far reaching effects - my poor baby

check out my council tax benefit in chat - it may be worth trying for.

Spent 6 hours shopping today with my mum and SD, had a lovely time but have come home and had to lie down, am sore already

On the bright side christmas shopping finished

That's impressively organised. I have no idea what to get anyone. DS is straight forward but no-one else is.

I've had a quiet day - my sister took me out for coffee & cake & a mooch round the garden centre (so middle-aged!). I came home and slept for 3 hours. Back in bed & aching. Off to London tomorrow with DS & to meet my mum. I love London but am a little wary because of how slow I am. Mum said she'd take DS off & I could stay in bed & read. Sounds good! And no cooking, cleaning, rushing about for 3 days which is even better.

Out2lunch - if I received DLA, I'd give it a go. Am glad it was worth it for me.

I couldn't do shopping anymore if it weren't for amazon! I get a few bits in town but I don't like doing it lots - even before the pain I have a lot of social anxiety too so crowds are a nightmare especially near Xmas.