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.

Hey all.

Just signing in to say hello. Hope you're all pain free tonight.

I wouldn't have attempted it if I hadn't been with my mum, we sat down after every couple of shops and stopped for a long lunch, I came home and slept for a couple of hours and have woken up barely able yo move.

The shops were fairly quiet and I figured if I get the shopping out the way now I can spend December resting up for christmas.

I love amazon! I hate crowds & shopping (so 3 days in London is not my ideal break) - I hope I can do my xmas shopping then & forget about it.

Hi, SirBoobAlot

I've been doing my xmas shopping over the year, so hoping I can avoid the worst of the crowds. Though I do just take out peoples ankles with one of my crutches if need be

i do theme shopping..ie one year its slippers another its ,boooks etc.everyone gets a variation of that....this year i have gone for the novelty factor everyone is getting onesies......lol.not sure how my mam is gunna cope in hers...hehehe

I like your style Belle at least that way no one can complain that someone else got more than them

Hi all :) have any of you received a card yet?

Any others up with insomnia tonight?

Not me! Sleeping trouble is one of the few CFS symptoms
I (thankfully) don't have. I am often asleep by 10. I have to stop myself napping in the day though, and am pretty much caffeine free, as they both really mess me up (luckily I don't like coffee or tea anyway but I miss pepsi max!)

Last few nights I've been sleeping propped up on the sofa with a DVD on all night, not good sleep hygiene but I always do it when I have a chest infection.

Hope you aren't too tired today x

Ended up sleeping on the sofa, dropped off about 3am in the end. Blah.

Sending (redbush) tea and cake to you all today.

yy to sleeplessness mine is getting worse i have about 3 nights a week now with no sleep at all so end up sleeping most of next day

i just don't feel tired or can't get comfortable enough to sleep

I fortunatly don't have trouble sleeping, my problem is more that I have trouble staying awake!

Sometimes when I ache to much to get comfortable in bed I have to sleep propped up on the sofa, usually once or twice a week

im up wide awake and have been for a afew hours........i did sleep all last night but the night terrors where terrible.......looks like a bed day for me [hsad]

hope everyone is doing ok

went out for a nice tiny walk around this afternoon to our nearest beach - lovely

I'm in terrible pain. Legs and arms. Not nice!

Sorry you are in pain Solo. I have gone back to achy legs ( its half term here so harder to pace myself). I take quite high dose Vit D3, B12 ( both by sublingual sprays),and magnesuim which Ihave been a bit forgettful with recently - can't help wondering if thats at the bottom of my aches! Its hard not to look for quick fixes!
Does anyone else get uncoordinated and wobbly ( my drunk legs) after walking up a little slope or a couple of stairs? Is this part of ME or something else?

how can i go back to work when i cant get outta bed till 3..and then it was only because i needed a wee and a drink!!! all this cos i had a girls night out on sat..wouldnt mind i was tucked up in bed by 10.30........and i was sat in theatre for 3 hours before that........

I have the stairs problem too, it's embarrassing. It's like all my weight sinks to my legs, I get dizzy and breathless, just from walking up our stairs. It's really bad at the moment.

muscle weakness causes the stairs problem also i get cardiac symptoms from time to time which make me v weak and breathless
all part of the me

my lovely afternoon yesterday resulted in a good nights sleep but unable to even think of getting out of bed til 2pm and just staying on sofa all day really stiff and sore muscles and joints

YY to the cardiac symptoms, I had a 24hr ECG last year due to this, but they couldn't find anything. My heart rate rockets when I stand up especially if I've been lying down - like if I get up for the loo in the night, I go into DCs' room to check on them as well and I am pretty much swooning around their room because I get so dizzy.

Seems like 'orthostatic intolerance', in fact a family member of DH's has had her 20+year diagnosis of ME changed and she's been diagnosed with the related postural orthostatic tachycardia syndrome (POTS) just the other month.

any treatment for that fuzzpig?

Interesting that others have the 'drunk legs'. I have variable tachicardia especially sitting or standing. So part of ME then. Anaesthetist at my recent op was a bit concerned (and suggested seeing the cardiologist again) but I knew it was 'normal' for me especially since I had to sit upright.ts embarrising getting wobbly and breathless like an elderly lady!

Not that I know of. I'll ask SIL next time I see her as it's her ex's sister.

well magso its normal for my me never spoken to dr or anyone about it but it comes and goes regularly over the ten years i have been ill

thanks fuzzpig - would be interested to know

I was a bit confused about the OI/POTS thing as I thought it was a symptom of ME rather than a disease in its own right, or maybe that's the difference between the two?

I'm hoping that the specialist will have some info on it as it is one of the things that gets me down most of all.