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.

Hi Fuzz, just want to reassure you that if you go to CFS clinic they teach you how to manage, the one i went to on reflection was really really good, they gave us the tool to manage....my problem is im in denial still am, i hate the fact i have it, and try to live my old life...the fact im off sick is proof to me i have got it and i need to sort myself out. people with CFS/ME are similar type of people it seem..

before all this was you active always on the go, never said no to anyone, life and soul of party, do mad things like start to clean cupboards or decorate late at night ( no maybe that was me!), did you worry lots, about silly things, house spotless, ironed bedding ( i still do!!) oh the list goes on and on....

the ME clinic i went to taught us how to pace properly, look at trigger factors... i do reflect on these tools from time to time and actually i only iron my bedding not the kids (cruel mother). My problem is finances and work, i cant afford to reduce my hours, i love my job but really its too much.... i wish i could drop 6 hours a week and i think i would cope so much more...ive got alot of thinking to do....

you are having the blood tests, try not to worry about the results till next week. the thing is you cant change the results and they may highlight something simple and treatable, it uses alot of energy to worry and you havent got that engery to spare....

let us know how today goes.
xx

Your description doesn't fit me at all. That's why I kept thinking I must just be unfit - I was never the really active type. I could sit for hours staring into space, although that's more to do with my mental health problems (Aspergers and depression). I enjoyed exercise when I did it but wasn't terribly motivated. My brain, however, is ridiculously overactive, it never shuts up, it drives me crazy. I'm an intelligent person, my brain is the only thing I like about myself, so I think that is my biggest worry. I wouldn't mind being still if I could fill my rest time with books and learning, but I can't even do that right now. Emailed my OU tutor to update her and ask for a longer extension on my assignment - don't even know the question yet.

I guess my previous lifestyle makes it a bit easier for me to rest now and if it was relevant my logical brain would probably enjoy something like Graded Exercise (jumping the gun massively I know, I'm just musing really). I don't think I would be in denial though I can see why as a naturally active person you would find it impossible to accept :(

I am worried about work because that is the one place where I am active. I am really efficient (helped again by my need for logic) and am always the first to volunteer for extra tasks. I'm a different person there. DH went in there the other day and although they are really well staffed, one of my colleagues told him they are really feeling my absence because I'm a "do-er"! Couldn't believe anyone would ever call me that, it really shows the difference between Home Me and Work Me. I was certainly ill before starting work but I wonder if this has made it worse. I would hate to be at work without being the fast worker I usually am. I am paranoid enough without worrying about not doing enough work. I guess that is why I really want a phased return/amended duties.

Feel horrible this morning, I stayed up until midnight to take my cortisol tablet, but ended up only getting 2.5hrs sleep. My sleep gets really fucked up sometimes, it's not like when I was younger and it was pretty much my own fault for getting into bad habits - it's my heart, it flutters and pounds in my chest and it hurts. When that happens I know there's nothing I can do. I try and practise good 'sleep hygiene', I don't even have any caffeine in the house. Really frustrating. I think yesterday my mistake was sleeping in the day - only about 45mins as DH persuaded me to have a rest and I eventually dozed off. Guess I can't do that any more then.

Small question - can pregnancy/birth be a trigger for CFS, in the same way it often starts with a virus? I've been looking back over the last few years, it's difficult as it's foggy. If CFS does end up being the diagnosis I guess I can ask to look through my medical records? I feel like I need to know how it started. I remember having no energy once my second was born. I could barely lift him - admittedly he was huge (nearly 12lbs at birth - I may have developed gestational diabetes but there's no way of knowing for sure) but still only the size of an older baby and I had no trouble with DD at that weight. I hardly managed the sling at all and things like kneeling by the bath or bending over to change his nappy were intolerable. I just put it down to breastfeeding and having 2 children to deal with, and again, blamed myself for being unfit, but now I'm unsure if it was the start of this problem as like work I never got used to it.

I hate all the uncertainty. Glad I get the work meeting over with today. You're right about the blood tests, I will try and forget about them once I've had them in 2 hours time. It is hard though as I have no energy to distract myself! I have 12 days before I'm supposed to be at work and it still feels like nothing even though the last couple of days have been a bit better.

How do you actually rest properly? I read on an older thread that things like watching TV don't count. That's what I find difficult - I can rest physically but my brain does not cope without something to do - but then even reading wears me out.

Sorry, mammoth post. Hope everyone is as ok as they can be xx

Bloods done. Not entirely convinced they did enough bottles as they only had one of the two forms, good thing I noticed. Only thanks to this thread that I was aware of what to look for! A week until I see the doctor again

• will try and forget about it now.

Trauma is another trigger, stress, and viruses... my condition certainly got alot worse after a miscarriage, my mum been critically ill and me been so far from home i lived on the M62! between my mum and my ex and kids...

I cant rest that is my prblem, i cant just sit, i need to be doing something so when im like this i make myself go to bed so i cant do anything, like you fuzz my brain never stops, i was up at 4 am this morning writing my will!!!!! (im not sure if my sleep is fucked or i am!!)

the best description i ever had about ME was this

"if your old enough to rememeber cars wth a choke, you pulled the choke out to help the car start and then pushed the choke in when warmed up. But can you remember what happened when the choke got stuck? well thats like ME our choke is perminantly stuck..... we can never switch our mind off, our bodies might need to sleep/rest but our mind is racing on ahead!!"

it made perfect sence to me....

All done, it was fine and I feel fairly reassured. I did say that the doctor suspects ME but it's not definite, and also asked a hypothetical question about reducing my hours permanently (because if this is a lasting illness then there is no way in hell I can manage FT) and it is a possibility (requiring a convoluted application process) which is reassuring. she actually said she was not terribly surprised by my news as she has known other people with it.

Am expecting a phone call from ATOS (hopefully a nicer department than the heartless fuckers who assessed DH for ESA ) in the next week, who will report back, but we both agreed it will need to be repeated after I have got my blood results as anything before that is just supposition.

Really wiped by the last hour though - was only sitting on the sofa but it was exhausting, talking and listening and writing a bit and trying to take it all in! Thankfully she's given me a few printouts.

No idea what to do with myself for the next week. Well apart from the obvious answer "nothing"

Hello - scanned thread but will read properly in a bit.

Just wanted to post & mark my place so I don't lose this. I accidentally walked 6 miles on Tuesday - I felt really well but didn't realise it was so far. I used to be able to walk 10-12 miles with no problems but I've been exhausted ever since. I'm not coping well with all this but my psychiatrist assured me that it's all fine & they are going through the process of ruling everything out. My bloods were apparently fine - good thyroid function, inflammation bit was a little high again & antibodies (or something?) were borderline but nothing to indicate any problems. I'm too tired to think about this and now seem to have a massively stressful situation going on with my psycho neighbour. Could really do without that. I'm desperately worried about going back to work

Hi grockle, I'm glad you've posted again, I was wondering where you were. I'm sorry things are so bad now.

Good thing they are doing lots of blood tests, though it is horrible waiting for results isn't it. Especially when you're in too much pain to do anything to take your mind off it. Do you know what else they are testing for before ending up at CFS? My doctor said if my bloods all come back clear he will refer me to CFS clinic straight away (I think) but I'm not sure if there's tests he might have missed - now that he's actually mentioned CFS I don't feel so bad about googling and maybe taking some suggestions like vit D and B12.

(the 'antibodies' thing may have been ANA and ANCA - they look for particular antibodies or something and can be used to diagnose autoimmune disorders like lupus, I had them as part of my bloods yesterday)

About work. I hear you :( I feel like even if this post viral 'episode' gets better (which I'm starting to think it may do, though it varies a lot), even if I get back to normal, I am still dreading going back because my 'normal' is still exhausted and in pain. I guess it's that feeling that made me realise I might have something chronic as I knew I would never return to work 'refreshed'.

I guess it's hard to keep them updated as a school is closed over summer but does your manager know all about this?

Went out for an hour just walking gently in the woods. Feel better for the fresh air but worse in every other way!

ive been to town for an hour with kids, after limping like an old lady for last half hour we came home!!!! im f**ked!

My line manager knows but not how much I struggle. I'll go back in September & see how it goes but I've managed barely anything over the holidays & this is the easy bit - all my planning etc. I usually love it.

I hate the old lady feeling. It's ridiculous. On the plus side, I have made a pretty bag for my walking stick

Do you think your boss is sympathetic to it? I know so many people still think it's all in the mind. I know my manager is understanding but I'm a little unsure whether she thinks people are kind of in charge of getting themselves better (ie that resting too much is bad and deconditions you) which makes me a bit scared in case I don't get better soon.

I don't feel like I'm getting better :( I know I was right to think this is more than a short post viral thing. I got stuck halfway up the damn stairs again. I am so so scared and so angry

((((hugs fuzz))))) i really struggle because as much as i am living this nightmare i sometimes think is it all in my head!!!yes i completely emphatise with others who live this hell....does that make sense! if this is an acute phase of a chronic condition, 4 weeks is no time..... one peace of advice i was given is live one day at a time, tomorrow may never happen, and we cant change what does happen tomorrw through worrying today!!! for some one who worried when i had nothing to worry about this really as helped me over last few years,

xx

Thanks belle, just aaaargh tonight as it seems so endless (and I feel ridiculous saying that when compared to the rest of you it's no time at all), even reading the bedtime story felt like murder, I could barely talk at that point.

Counting down the days til I see the doctor but I don't know if I'll feel any better when I know anyway.

If only I lived in a house with no stairs. They are my worst enemy at the moment

Yes, I often feel like this is all in my head. BUt then I stand up & hobble for ages before I can stand up straight & I limp or my legs just won't support me. I don't think I can imagine that nor the pain that makes me cry? But since they never find anything wrong, it feels like it must be. Honestly, if I hadn't lost my marbles already, I really think this would do it. It does feel so endless.

It;s so hard to go from being a very active person to being someone who often struggles to function. I am also angry, frustrated, very disheartened and scared about the future. But it certainly does giv perspective, doesn't it? I always used to be a bit of a worrier but in the grand scheme of things, my worries were nothing compared with this.

And yes, stairs are a nightmare.

I'm going away to the Yorkshire Dales for a few days - it was meant to be a walking holiday since we'll have no children with us. We thought we'd be able to do some longer walks than we usually manage with 3 DC under 7 but we're now trying to work out which walks are short enough and suitable for wheelchairs

well the weather is grand up here in Yorkshire at the min, dont push urself too much, i did a bike ride on ours 4k thats all down hill....and thats exactly where i went not long after,..........down hill...maybe you could take the time just to recoup a little..i do however know the guilt of saying to other half at 8pm im off to bed, or you go ill stay here is hard to deal with....my kids have gone to their dads today, and whilst it was a sigh of relief (only so i can rest) i feel for my partner because im still knackered still in pain and still cant do owt...im back to work monday..mmmmthats gonna be fun!

Good luck at work belle. Is your boss understanding about your health?

Grockle I'm sorry you won't get to do all the walking on holiday. I now understand what DH feels missing out on everything as he's on crutches, we do pretty much nothing now - DD's first proper school holidays and she has spent most of it stuck indoors. I hope you can find other ways of enjoying your time up there, are you into board games and things like that? I know it's no substitute for missing out. I've always wanted to do walking holidays.

It makes me angry that your doctors keep saying they can't find anything wrong. What they mean surely is that they can't find any other explanation for your symptoms - and that is when CFS is diagnosed?

I still think it's all in my head sometimes or basically that it's my fault for becoming 'deconditioned' (even though I'd never think that of someone else). I think it's only through talking to all of you that I am able to contemplate this as a real illness - ironic that we can all reassure each other and yet still can't have faith in ourselves.

We actually just got accepted onto the local housing register - I really wish we'd done this a couple of years ago when DH first got hurt. If I do get diagnosed I'm going to ask the council about special adaptations - if you have a disability you can apply for bungalows for example. No stairs! We considered doing this at the start but decided against it as DH technically should get better after surgery. But then I worry about ending up somewhere far away from the school for example, and not being able to handle the walk. I know I'm thinking too far ahead again but I think it's the only way I can deal with this - it is happening so fast, three months ago I was just thinking I was tired/run down, now I'm seeing a totally different future. Maybe I'm being melodramatic - I just can't imagine feeling better.

Hi Fuzz, the housing situation is really postive, i can say you will have better days, never brilliant but better, but saying that about 3 months ago i had 1 day where i felt like me, i had no pain, brain fog, fatigue nothing.........it was fantastic, i did think well it must have been all in my head, then bam next day i was crippled for that one day it was fantastic.

as for work, i havent thought too much about it, my plan is to take it as it comes which is easier said than done cos once im there im in the numbers..... my colleagues seem understanding, but its a new job, and im not sure for how long they will put up with me working reduced hours before something is done.that scares me becasue finacially i cant have reduced wages...so with my new learnt skill of one day at a time im not thinking aboutit (much)!!

Grockle........i would contact your nearest ME clinic and speak to them direct, ask to speak to the occupational therapist, or the physio, explain your situation and ask what is the best way to get reffered or do they take self referrrals.... they will assess you before they do anything else and then make a diagnosis if they think its ME then it will go from there... or they will give advice on how best to get reffered....working for the NHS i know sometimes (most of the time) you need to take control of your health in your own hands......

x

Not sure it's so good housing wise, rules are really complicated and either way I expect we will be waiting a couple of years. But I am glad we are finally on the register.

Feel really sad today, going stir crazy. Left hand's knuckles and wrist really hurt as do my left ankle, knee and hip unfortunately in preparation for DH's operation, he has to sleep on a higher bed due to issues around getting in/out. Specialist told him to inflate our double air bed under our mattress. Tried it out last night and it's hell. Hoping I can get used to it as the alternative is I sleep on the sofa for a few months. Which I don't mind short term but it seems more important than ever that I get a decent night's sleep when I go back to work.

Totally failed on the 'not thinking about test results' thing too. I only remembered today that another possibility he mentioned was some autoimmune thing called something something rheumata any ideas? Also wondering if I should ask for more tests. He did loads but not a complete list I think. What if he refers me to the CFS clinic but they send me away because I've not ruled out enough other stuff? Can that happen?

rheumata sounds like rheumatic, which could be arthritis based, but im sure this would have shown up in some of blood tests especially those looking at inflammation etc.... i actually think your GP is doing all the right things and if like he said tests are ok then he will refer on to CFS clinic...he must have done enough for him to be happy enough he as ruled out everything...( limbo is a really shit place to be.

what pain relief do you take? this is another area CFS clinic can help with making sure you get the meds that help your symptoms.

is it tomorrow you get the results.?

x

It's Thursday so still a few days to go. Day before that I have a smear test and I'm terrified, I have diazepam for it because I can't cope with any gynae procedures (I was abused as a child).

Painkiller wise at the moment I am taking an anti inflammatory called Naproxen. He prescribed this when he first said I had the viral myalgia. When I went back last week he didn't ask if they'd been working as we were mainly speaking about the longer term problems, but I guess he wants to see what's going on before fiddling about with medication. They haven't been working much at all except for headaches. I was actually referred to a headache specialist in the neurology clinic a few months ago due to a phase of what I would describe as cluster headaches, but now I wonder if it's just part of the bigger problem. I had Diclofenac for them which took the edge off a little.

You really have been through the mill havent you! is the smear been done by someone you trust ie practice nurse....if so just explain it to them...

i too went to see a neurologist for headaches, i was diagnoised with parapalegic migraine ( it wasnt it was my ME!) if all blood tests are normal maybe ask for pain relief for neuorpathic pain such as amitriptyline ( to start with) i take and anti depressant duloxetine that is prescribed for the pain, i know if i havent had it and i take amitriptyline when pain is bad, unfortutaley it makes me drowsy...this could however help you with your sleeping in a small dose. day to day i take paracetamol and brufen, and co codamol if its getting to much ( this doesnt help my constipation {emabrrased face}) but does ease the pain.

how has the rest of today been.......... ?

Unfortunately it's being done at the partner surgery as there were no appointments at mine. I did ask the receptionist to note that I will be slightly sedated due to being very scared, and she did write it down.

Not done anything else today. I'd felt better for a while thanks to having some time away from work (I love my job but was getting quite stressed) but depression is definitely creeping back in. Not taking any ADs though as I'm waiting to see a psychologist. After years of virtually no doctors visits I am suddenly drowning in them

Fuzz, I take citalopram for the nerve pain and fatigue - it takes a while to kick in but it definitely helps. I also take diclofenac and co-codamol (500/30) which help a bit with muscle and joint pain.

My GP reckons the only thing that works in any way at all to ease the symptoms of ME is an AD - so it might be worth trying it.

Thanks, I will ask at the doctors. I have a feeling he might still want to wait (Aspergers assessment with the psychologist is 7th Sept so not too long) or maybe even leave it to the CFS clinic, although I guess it depends how long I have to wait for an appt if I'm referred. DH takes 28 pills a day, we are already like a damn pharmacy!

Should I ask about supplements too? I guess it's a controversial topic.

Went to have a lie down while the DCs had their bath, fell asleep at 7 annoyingly now I'm awake (obviously), I hate it when that happens!

Smear test was actually fine. Diazepam is awesome - quite tempted to ask for it as a regular sleeping tablet. Do any of you take anything to help you sleep? It's driving me nuts not being able to sleep some nights.