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.

People really don't get it! I applied for DLA in 2004 and it took me 6 weeks to fill in the booklet of an application form; my hand writing changed every time I picked up the pen to continue as I got progressively worse over that time :( I was refused too, because I put down my best case scenario not my worst, and I'm not even an optimist, I just have a guilt complex.

I continue to push myself, so I do manage to walk about and do a lot of things, but it's not always like that and I know from bitter experience that if I stop I will be out of action for weeks or maybe months.

Earlier this year I had to go to the job centre, but they had failed to tell me that my appointment was no longer in the building down the road (a bit of a trot!), so when I got there and discovered the doors locked closed, I had to retrace my steps back to the first building. When I got there, I was a few minutes late and the 'advisor' was a bit of a dragon. I told her about not being told where the appointment was and that I'd gone all the way down to the far building (I'm guessing it was a 6 or 7 minute speed walk) and she said to me...'the exercise will do you good' I said 'I don't think so, I have ME' and she looked at me like . yeah, thanks for that lady.

:(

I am pretty new to all this stuff, but I have already wasted so much time wishing I had something visible!

I even feel a bit jealous of DH sometimes. Because if somebody asks his what's wrong he can say "prolapsed disc" and people say ooh, that must be really painful... if you say ME, people just get all flustered, I don't know if it's embarrassment on their part, or just plain old skepticism? I thought I'd feel better if I get an official dx but judging by some people's reactions I will still end up feeling like a fraud. I am lucky that my dearest friends are understanding but most of them are far away. I don't want rumours to fly at the school gate, I'm a misfit as it is!

Been really strongly considering getting a stick to walk with but I'm not sure it'd help. My arms/hands are often the most painful part of me and I think leaning more of my hefty weight on their would just really hurt.

I am halfway through my 3 weeks leave and I am totally dreading going back as I will technically be expected to go back on full duties, since my phased return is up. They have said they'll make exceptions though so I should be able to still use a chair at the self service machines instead of standing for an hour or more.

I really thought I'd be better rested while I was off but just the school runs, bath/bed routine and a bit of cooking is fucking killing me.

I was asked about that actually eveningmist... it was the first thing my psychiatrist asked (I'd been sent to see him because I wasn't responding to ADs because guess what? I'm not actually depressed, just pissed off & struggling to cope with constant pain. It was him who began investigating ME etc). I do a lot of outdoorsy stuff and spend a lot of time in the New Forest so maybe there is something there. I shall Google. I'm glad you are better.

Fuzz, my stick helps me in that it gives me a little security and stability. It really hurts my hand after a while though. Not sure what the answer is. There are different types of handles - you can get some for people with arthritis... that might be better for you? You can get them quite cheaply on amazon if you want to try one out. I need to figure out how to manage work next week. I'm desperate to get back but scared I'll get worse again.

I'm off to find some evidence that CFS/ Fibro are not temporary. I'm not asking for money just a fucking parking space so I can actually go out when I am ill.

Having such a debilitating illness has been quite an eye-opener. I think people really don't understand at all. In fact lots of people don't know what ME is.

Indeed. The first thing DH said when we started talking about ME (he'd actually been considering it even before I mentioned my own MN based suspicions) - "yuppie flu". :( Not in a horrible way of course, he is 100% supportive and believes I am really sick... but that was the association he had because of the media.

MN based suspicions

But yes,

I was turned down for a blue badge too - apparently CFS us not a walking disability. Well yes my legs are fine it's the body inside them that refuses to hold them up properly that is the problem. I wish there was some system to help those of us with 'temporary debilitating illness' some support. It must be a problem for many illnessess and injuries too.
I use walking poles sometimes but am a little embarrassed to use them unless in walking type clothing.
Interesting about Lymes. I was tested quite recently but it came back neg. I often feel better after a course of antibiotics. Are there any more reliable tests?

how the actual fuck is cfs not a walking disability? when you often can't, um, walk?

FFS. why they bother calling it a welfare state is beyond me.

i have been diagnosed ten years this month - got a cold at the moment unusual for me but nothing major
however when i laid down in bed last night my breathing was so noisy and crackly - has anyone else had this?
doctors apt tomorrow

mine kicked off with a chest infection (though I believe I had a milder presentation of ME for at least a year before this). my chest has always been prone to it (same with all the women on my mum's side).

you could try propping yourself up a bit - I usually sleep on the sofa when I get all rattly.

am up way too late having done some xmas shopping online - would've been so much quicker if it weren't for brain fog but I wanted to make the most of an offer which ends tonight.

oh and I got an email from student services at OU, I need to call them to arrange what we are going to do - haven't done the last 2 assignments and won't be sitting the exam this month... I've been ignoring it but I have to bite the bullet. But I don't have a clue what to do :(

thanks fuzzpig

slept ok in bed last night but it was a bit weird hearing it - does it sound like a c infection then - whats the usual treatment? anti biotics?

Magso - I've just had the same conversation with DP. When my Dad had his hip replacement op, he couldn't walk well for weeks afterwards. He could have done with a temporary blue-badge. And when my stapfather had heart surgery, he needed something too. Not permanently but for a short while.

How CFS/ Fibro don't count as a permanent disability, I don't know. I wondered about going to the council offices on a bad day & crawling in to explain exactly how debilitating it is. Instead, I've written a letter, detailing what happens, including descriptions of me having to crawl to the toilet because I can't fecking walk. Grrr.

I don't have breathing problems. That sounds scary out2lunch. Can I ask how you've managed for 10 years with this? Are you able to work? Sorry if too nosey. Hope dr can help.

Oh fuzzpig I don't think I could manage studying. What subject are you working on?

grockle - think we have pmed each other before a few months ago

i haven't been able to work since day 1

I'm doing an open degree, so a bit of everything really. in terms of what I've already completed I have half a degree, most of which is in maths, but the current course is child development. it's really frustrating, I have got 88 in one assignment and above 90 in the other 3 but I just CANNOT do it now. I can hardly read a lot of the time. ATM it is just making me regret my choices in life even more because I feel like I've lost my last chance to get a degree. I know this is not true really, I'm only 25, but I feel totally lost and don't have a clue what I want to do in my life, I've never been able to settle on anything - and just when I was starting to try and figure it out I go and get a disabling illness. Due to our income my degree so far has been fully funded but that runs out soon so I don't know if I could afford it in the future.

o2l - if it's a chest infection they should give antibiotics, and last time I got an inhaler, but it sometimes turns out to be higher in the airway than that (apparently just 'drippage' hanging around eeeeuuuuuwwwwwwww) in which case they would do nothing. but might be worth getting checked out just in case.

hope its drippage then

thanks

Grockle :( I had no idea you were feeling so rubbish my lovely.

DH had CFS as well as physical issues following having Guillain-Barre Syndrome last year. We applied for a blue badge for him when he left hospital as he could only walk very short distances (less than 100m) with two sticks, and should really have been in a wheelchair but refused point blank to entertain the notion. He was turned down as his condition was/is temporary. THankfully he's loads better now and can walk just fine but it was a massive pain in the arse at the time. He was basically housebound as he couldn't walk far enough to do anything once we arrived anywhere in the car. He couldn't even get to the supermarket cafe to have a cuppa in different surroundings whilst I did the shopping.

I have no real words of advice but am sending you love and mango-ey goodness. DH's problems are more or less in the past now and I really hope yours will be too. Good luck with the rheumatologist.

Hello Solo - I can't think of any good reason to keep stuff about ME secret.

Hello Grockle - I posted the link to the Canadian Guidelines earlier, the new updated ones are out now here www.hetalternatief.org/ICC%20primer%202012.pdf it is called International now though. Definitely worth reading.

Could do with some gas and air tonight I hurt so much. Will have to make do with a hot bath.

didn't make it to the doctors today but chest was much better last night - may have been a ME thing

Thanks Tigerfeet. I really think there should be a different system for blue badges. The whole thing is ridiculous. DP's mum has one and she goes on 20 mile hikes I'm glad DH is on the mend.

Am glad you are better, out2lunch, and fuzzpig, hope the bath helps. I live with a hot water bottle permanently attached to me.

We went to a friend's house for tea tonight - it was lovely but I'm shattered now. I had a 3 hour sleep this afternoon as well. I'm meant to be back at work on Monday. I have no idea what to do. I know that I am not really functioning well e.g. this morning I had a meltdown in the post office because the lady was telling me to put the airmail sticker on the top left of my parcel & I couldn't do it because I didn't know what she meant. DP was pissing about on his phone so didn't notice I was floundering. I yelled at him to help then bollocked him outside... I don't think anyone realises just how much help I need. I don't understand basic instructions, directions, anything verbal really & I can't formulate spoken sentences. It just comes out as nonesense & I don't know the words. I am clumsy & uncorrodinated, I am sleeping for about 3 hours in the middle of the day. Hardly the kind of person you want teaching your children. If I go back, I'll struggle enormously but I cannot stay off forever.

Well you could try going back but there's no shame in being sent home again. I know it's hard to see it like that though :( the cognitive impairment sounds really devastating (I am definitely noticing that in myself but usually at a lower level).

You know the weird thing is my line manager's DH had a very rare and devastating BUT temporary illness - I actually have a feeling it was Guillan-Barré but I may be wrong - and he got a blue badge. He got reasonably better before it was up for renewal so he returned it - but he got one even though the illness wasn't permanent. I know the rules have changed (we are a collection point for them at work now) but I thought the idea of 3-yearly renewals was that if you get better you just, um, don't renew

Bath helped with the pain thank you but I am more fatigued now, think I made it a bit too hot as that seems to make my blood pressure drop and make me feel a bit faint (I've always found that though). I think I might have to have baths more often - thankfully our water bill is already capped due to DS's eczema (it's a scheme called water sure if anyone's interested - you get discount on water bill if someone in your house has a medical condition that requires more water to be used - so possibly a dx of CFS would get this? We just needed a note from the dermatologist)

I'm seeing the doctor on Monday to hopefully up my dose of amitriptyline, but I will also ask about other methods of pain relief... DH and I were even talking about TENS machines?!

When I was first ill, standing was very limited so a blue badge would not have helped much since i could not walk beyond the car, but my main difficulty now is hospital visits for ds. Hospitals always seem to be on hills! The gp surgery is awful because you have to stand to wait and be let in. You would have thought these would be the best thought out spaces for those of us with physical challenges.
Water that is too warm leaves me feeling worn out too fuzzpig, I wonder if that is part of the condition too. Hope your gp visit goes well. I am still on sick leave following surgery and it's a relief to have a 'normal' reason to be needing to sleep and rest. I find I cannot think when standing or walking or doing anything else. It's a problem at work sometimes.

Hi All ( have we got any boys or is it all just us girls....if your lurking boys your welcome to partake ) temperature control is an issue related to CFS/ME hence the nigth sweats, ( does anyone else get these jesus they are terrible i often have to change pj 2-3 times a night then poor dp has to change bed next day) and thats why we feel the cold etc...i cant do warm at all really wipes me out, but if i get too cold it makes pain worse.....however im alsways cold...well in uk i am, when we went abroad this year as much as the rest was nice the heat neatly killed me ( or was that the gin!)

I'm always cold & have phases of terrible night sweats. It was worse when I was on duloxetine but still happens now. At the moment, insomnia is my problem.

I'm almost always cold but have night sweats as well. Very unpleasant. I'm not sleeping that well just now, either. DH fell asleep on the couch last night and didn't come to bed till about 4am. he woke me up gettng in and that was me. I haven't been able to sleep since, even though I am completely wiped out. The burning in my feet and legs doesn't help that, though. I will most likely spend all afternoon asleep while I'm supposed to be baking for Christian Aid and the Harvest lunch at church. I cannot stand not being able to do the things I need to.

fuzz, I don't find baths help with the pain at all, they just make me even more tired and very sweaty, ugh.

Grockle, I'm with you on the cognitive function thing. I find it difficult to grasp instructions or conversations, now, as well. And I often have difficulty being coherent. The kids think that it is hilarious, they wait to see what rubbish I will spout next because I am always getting my words mixed up or forgetting what I'm saying half way through. I don't think that it's very funny, though.