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.

Yeah I have stuck them in front of a DVD as usual and no bath tonight. DS is supposed to have one nightly because of his eczema but tbh it doesn't seem to make any difference. It is so high maintenance - he has bandage suits to wear every night too.

Dinner courtesy of my friend, she dropped off a massive tub of meatballs in sauce yesterday :)

I hope you don't mind me joining you guys? its been a really informative read so far.
I've got fibro. I had 2 wks in hospital with a flu like virus 3 yrs ago and about 6 wks after I came home developed toothache like pain in my bones esp arms, legs, back, neck. Tiredness was overwhelming - virtually bedbound for first 5 mths.
Luckily GP just accepted what I said re symptoms and gave me adequate pain relief. I see a pain specialist every couple of mths too. I no longer work as cut hours down and down to 5 per wk but that would still put me into bed for 2 days following (have chronic migraine too so the combination was too much).
I hate not working. Really hate it. My DH is wonderful and supportive but I know there are family members who think I 'should just get on with things'

I take morphine, gabapentin, tramadol and voltorol daily just so I can walk. Makes me so angry when I think that people don't believe I'm ill. Why would i want to live like this?

Luckily I am generally fairly happy - not the life I want but its the life I've got so making the most of it. DS is 12 and it upsets me that he does miss out on things due to this damm disease.

I did go to a local clinic and saw a psychologist but that didn't help my pain, funnily enough.

Hello kiwi :)

Will be back tomorrow but ATM I feel like I'm having a 'crash', could barely lift my fork at dinner, don't think my pacing was gentle enough but what else could I do! DH is still mostly bed bound so god knows how we will manage the next few days.

I've discovered that most things can wait. As long as children and pets are fed and watered everything else can wait.

I managed to vacumn the whole stairs in one go on Monday (usually can only do 4 and have to wait til next day) and I can barely straighten my arms. They are so sore. The muscles are solid and the elbow joint so sore. Definitely not in my head!

Hi kiwi lovely of you to join us, this theard is sometimes the only thing that makes me feel im not quite so sad mad or bad!! Fuzz, (((((HUGS)))) i so feel for you, maybe just do the bare essentials ie fed and rest, and same for kids...maybe even if it is for a few days, is there no one who can watch kids for you even if its just for one night. i spent most of Monday in bed ( i took annual leave knowing id be shit after weekend) i could barely walk let alone much more. i have pooped thou!!! thank heavens for small mercies!!! i am counting down the hours to my days off.... im still searching all for that magic wand.xx

You keep saying 'there is nothing wrong with me'. But there IS something wrong with you whether or not a blood test can detect it- there are still a lot if illnesses that can't be diagnosed with blood tests, ME being one. I know how you're feeling. My GP diagnosed ME after about 6 months of feeling like you do, but there's very little they can offer as they don't really understand the illness. Depression is also a very common side effect of ME/CFS
A bit if advice- be aware of the boom and bust effect ie doing too much one day and suffering for it for the next few days. The only way through this illness is to learn to pace yourself properly. I am 11 years on from diagnosis but manage ok if I'm careful. I must admit I can't work as I find two kids ,a house and husband more than enough to tire me out . It took me a long time to accept this illness but once I had I felt so much better in some ways. take care, and make sure your employer is aware as they may be more understanding than you think ( I hope )

I wish it had only taken 3 months for me to be diagnosed with something. 3 years on and still nothing. And now my rheumatology appointment has been cancelled. My GPs (my regular and the nicer one) refuse to prescribe anything else til I've seen the rheumatologist. I don't believe they can't & I don't understand why they think it's acceptable for me to be in so much pain indefinitely. I'm at my wits end now. I've googled places to order painkillers online which I know is ridiculous & unsafe but I really do not know what to do. I'm not sleeping because of the pain & shivers & it all becomes a vicious cycle & spins out of control

Sorry for the rant... am in pain & feel helpless & overwhelmed.

Welcome to newbies & hoping everyone's not suffering too much.

WTF grockle?! Why did they cancel?

Am livid for you, there is no good reason for them to fob you off so much, they should be listening to you :( the way your GP has handled this from the start is not normal or acceptable, you don't have to stand for it, is there any way you can change surgeries?

grockle dont buy from internet............do you have an out of hours or walk in centre.....go there, it will be a different GP if all else fails go to A+E, at the walkincentre, tell them u are awaiting an appointment for review into your pain, but your symptoms have suddenly become worse. They dont know they whether they have or havent....its worth a long shot but a prescribed drug is so much safer than a bought drug, and even if its something to tie you over till you see rheumatologist. at which point they can stop medication and start a more appropriate one.

I really feel for you Grockle - you need to go back, go every day if you need to. I am so, so lucky that my GP took what I said at face value and gave me strong painkillers straight away (slow release morphine, in fact). I could barely walk. Its just such horrible, overbearing pain, isn't it?

Oh, I won't buy from the internet, don't worry. I just feel really stuck. Drs won't help & I don't understand why. I'm too exhausted to deal with it anymore - I can't be bothered to change surgeries. Maybe if I'm feeling better tomorrow I'll call them again or try out of hours at weekend.

I've shouted at DP this morning & had a massive meltdown because he has never once left me in bed in the morning & I'm exhausted and he's away all weekend so I have to do everything by myself.

I took DS to school this morning (usually a 2 min walk) and had to go in my chair but it took me 15 minutes because the pavements are so wonky and uneven and then I came home, collapsed & cried then slept on the floor for an hour and a half.

WTF do you do if you are alone for days with DC? How am I going to collect DS from school today?

Sorry for ranting & being so self-centred. I'm so emotional & upset and worried by everything & I really don't think anyone understands.

Why isn't he leaving you to have a lie in? Is he usually supportive?

Is there anyone who can do the school run for you this afternoon?

I understand, Grockle. I have to do everything myself as well. DH is always going on at me to rest but he doesn't do anything to help. I was standing last night at 10pm cooking him dinner because he's been working late and wouldn't eat what the kids had had. I'd been in bed all afternoon and most of the evening and was practically falling over but I still had to do it. Same with all the washing/housework/kids stuff etc.

The one thing that I am glad of is that I HE because I could never manage the school run or the pressure of getting them all up and out in the morning. Althoug half the time, I can't really do very much with the kids at home either, so everyone is suffering.

He is supportive, Fuzzpig but I do't think it occurs to him that a lie-in might actually help. I realised last night that he tries to help by doing random things - yesterday it was emptying the hoover bag (which could have waited) whilst I hobbled round the kitchen cooking dinner for him & DS (I was too tired to eat it).

He always makes me cups of tea etc but doesn't get up til I do = he was awake for at least an hour this morning, reading & playing on his phone but it was only when I crawled out of bed & cried that he bothered to get up. SInce I complained, he's spent all day telling me off for doing too much or not helping myself - like lying on the floor to sleep because I couldn't crawl up the stairs to bed. I tried to explain that I couldn't actually get upstairs and it hurt when he tried to pick me up but I think it came out as mumbled sobs.

HE sounds very appealing right now HEmum, but if I did it, DS would only be learning about Power Rangers & Harry Potter since i'd just plonk him in front of the telly so I could lie down.

I'm going to brave the school run this afternoon - using crutches, a brave smile and very small slow steps. It has to be easier than using the chair. I don't want people to talk to me because my eyes and face are red and puffy from crying all day.

I've just applied for a Blue Badge today - I suspect I won't get one but it would help greatly if I did. I wouldn't use it when I'm well enough to walk but on days when I'm in pain but not too exhausted to move, it'd mean I could go to the shops by myself. Does anyone else have one?

If I get diagnosed I will definitely be applying for DLA, but probably won't bother trying for a blue badge. We don't have a car - I have heard somebody else can have it for you if they drive you around (unless that's changed) but we don't see my parents often enough to make it worthwhile. I would like to drive one day though.

I hope the school run was ok. Just got back from mine with 2 very stroppy DCs. I am relieved DS is coping with full nursery days though. There's no way I could handle it if he was still on 3hr sessions.

By the way when I spoke to a benefits advisor, she said you don't need an actual diagnosis for DLA as it relies on how your symptoms affect you

i applied and appealed twice for DLA and was refused, hence having now to work 30 hours a week to keep a roof over mine and kids heads!!! i was refused because i said i made meals for kids when i couldnt do anything else.... which is true as a single parent who else would make them a meal.... even thou i might not have had the energy to eat myself, or get dressed or get washed..... make sure u put down what ur absolute worse day is! i was honest and it didnt work out........ makes me cross, i wasnt looking to stop work just reduce hours to something managble and dla to supplement....... xx

Grockle, there are many, many days when I feel as if all DS4 learns about is Power Rangers and Bear Behaving Badly, tbh. The others are older and can more or less deal with their own schoolwork with a bit of encouragement (read nagging) from me. DS4 spends a lot of time on things like jumpstart, gridclub and BBC schools. I'm trying to take a more relaxed attitude to it all because the stress of worrying about that was just making me even worse.

They will all get there in the end and in their own time, or so I keep telling myself.

HAve BB tonight, am dreading it, really, because I have been in bed nearly all week, but the boys are depending on me, so I've no choice but to hobble over and try my best. Thankfully, I've nothing to energetic planned for this evening because we're celebrating harvest.

I'm holding no hopes of getting DLA & am terrified of what the future holds. But I can't fret too much about that because I have to take each day as it comes and plan how to get through each one. I have written supporting statements for families at work applying for DLA - it's heartbreaking to do - you have to focus so much on the negatives - what they can't do & what happens when they are at their very worst. I guess it's the same for people like us when we apply. But yes, Belle - everyone would feed their children even when they can't do anything else.

School run was ok - easier on 2 crutches than a chair & by 3, I felt strong enough to manage that. Am shattered now. Am going to put DS to bed then take a sleeping tablet in the hope that it'll make me feel better in the morning.

StressedHE - they WILL get there, in their own time, you are right. What's BB?

Glad you made the school run, Grockle and I hope that you're not suffering too much for it today.

BB is Boys' Brigade. I'm a leader and have a section every Thursday evening. I really enjoy it and think that it's really important work, but it doesn't have knock the stuffing out of me now. By the time I come home, I can hardly move and Friday is usually pretty much a wash out, but it can't be today because I have church stuff that I have to do. I foresee a day of scary painkillers and lots of little mistakes because my brain has turned to mush.

I, too, hold out no hope for DLA. I've been through the system many times for my AS boys and it's a nightmare. it's even worse for adults than it is for kids. MY mum applied for it a few years back (she has fibro and rheumatoid arthritis). At the time, she couldn't dress herself, hold her own cup, walk up the stairs, anything, she had doctor's letters, hospital reports, the lot and she was still turned down flat.

I completely agree with the one day at a time attitude. I just see how every day goes and try to get through it. "Sufficient unto the day is the evil thereof", how very true that is.

Hope everyone has an OK day, today.

Hope you've had time to rest, HEmum. I don't think I could manage BB or anything like that. I struggle to get DS to go to Beavers & I don't have to do anything other than drop him off.

I'm exhausted today. I'm unable to string a sentence together & my legs feel scarily wobbly. We're meant to be going to DSS2's birthday party but it's 30 miles away & I don't know that I can manage it. I already took DS out this morning & tried to get in the passenger side before remembering I was the driver.

I'm wondering if any of this is related to my monthy cycle. I need to keep a chart or something. Has anyone else noticed a pattern?

I'm not sure I've noticed it myself (though a diary is a really good idea) but I'm sure I've read in a few places that some women do get worse symptoms before their period.

Yes, I get much, much worse the week before my period. Usually have to spend most of the week in bed, only emerging to do basic tidying stuff and meal making. So it may well be that, Grockle.

I can't really manage BB, tbh. My section takes a couple of hours and by the time I come home, I'm just about on my hands and knees and the Friday is a complete washout. I don't do any of the energetic stuff, I have young minions for that, mines more an organising/in charge role, otherwise I couldn't do it at all. I do enjoy it and I feel that I have to keep it up because we are just emerging from a staffing crisis which made it look like we were going to have to close the company and that would be dreadful.

The other thing is that my meds have been upped a good bit in the last few months so I am managing a bit better than I was. it doesn't take a week to get over going to BB anymore, only a couple of days and I can do a little more before I start to keel over. Before, I couldn't even go for a bath without having to go back to bed and I could hardly leave the house, even walking the 25yards to church was too much for me, now it only gives me sore legs and means that I need to sit down when I get there.

Hello everyone, just checking in again. Haven't posted for a while but keeping watch and sympathising with those of you having a hard time.

hello all, we seem to have all gone quiet hope all is ok. i have had some nasty viral thing which left me in bed for weekend, so its back to the toil today.....work was hard, its not when im busy tbh its as soon as i stop, ie lunch break or if things quieten down, i just dont have the humph to get going again, so today as been a real hard battle, busy with a clinic this morning , then booking appt and looking at results, but im starting some new clinics next week and i need to make sure im up to date, trying to read with anyone around is impossible the slightest noise rings around my head and i have to try concentrate so hard. i used to love reading, i really struggle atm.

oh and i have joined ww...nothing fits me, and i havent got the energy to go looking for clothes (or the money really) so i ve joined on line, i know my biggest issue is exercise but i also need to adress my diet....

thinking of you all x