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 not sure what started mine originally. I've been trying to work out when I first became ill but it is so hazy and I have always lacked energy anyway due to depression. I know I have been unwell much more often in the last couple of years, before I started my job in July '11 I started getting frequent tonsillitis, I had a 24hr ECG because of heart flutters (what I now know to be Orthostatic Intolerance, a big symptom in CFS), I also had a severe UTI that was so bad I thought I was pregnant as it stopped my periods, goodness knows how long that went untreated. I also remember a virus/cold after which I found walking difficult. But I can't pinpoint the exact trigger which is really frustrating. I do think it was starting FT work in April this year which pushed me over the edge. Started getting loads of headaches, and then the chest infection which stayed for nearly 2 months. DH was off sick due to his back injury and I was suddenly having to provide financially... but that makes me sound pathetic as plenty of other people manage it just fine. It was only 37hrs with a short bus commute, DH was doing everything else, why couldn't I cope with it? I feel like I'm different from everyone else here, I was never having to do everything like you are all describing. I feel like a lazy fraud.

fuzz you are not lazy or a fraud........ CFS can be caused by a few trigger factor, one of which is illness, that can affect anyone......stress is another, and trauma is the other......... there is a tendancy that people with CFS are the do'rs and is generally found in people that work in the public sector.ie teachers, nurses, etc..... you have had a really shit time, and must not underestimate that...

Today i have a big choice to make, yesterday was a disaster, ds was here for wekend i havent seen him properly in weeks......... i cried yesterday becasue i was so tired and i had promised dd i would take her shopping ( it is the 1st time i have let her shop by herself.she was with partners daughter, and we where in a shopping centre..after the little april jones events this week i did have second thoughts but she was so excited) i was going to sit in the coffee shop...sounds simple..i was exhausted didnt know how i was gunna cope for 2 hours...it was nice because ds cae too so i got some quality time but to say i was knackered ......
last night wasnt any better promised a team mum night in popcorn, sweets, pop etc.......i was in bed by 8pm and i had to makekids sit upstairs with me so i knew they where safe.how shit is that on a saturday night.

so tomorrow do i go to work and struggle to the point i will eventually crash one day very soon, or go to GP get signed of and try to limit the damage.....

i have a week full of clinics booked in work.....no one else can do them.... and from past experience i wont be off just a week.........

God i hate this .......

Solo what part of country are you in?? we seem to work in a similar environment...

Fuzz you are certainly not a fraud! From what I remember, depression seems to be a common starter of CFS/ME etc. People who have suffered a lot or long term depression are very likely to go on to get CFS. I used to suffer immeasurable bouts of depression to the point of being hospitalised. Don't be so hard on yourself!
Magso yes to sleep deprivation; it's a living nightmare.
Belle I'm in the SE and and in the prison service. Don't beat yourself up about being unable to shop or for having to have the kids upstairs with you either! I used to have to do that with Ds as a toddler on days off or when I was very unwell. He'd play, I slept . Sad but true.
As for taking time off? well, it's a bloody nightmare isn't it? if you are all like me, once I stop, I fall over in as much as my body ceases to work. I dread going back to work and this is just one of the reasons. Is your work very understanding? mine is not.

Try to have a good day everyone.x

I don't know that any of us manage just fine... I manage but have made myself ill in doing so. Please don't feel like a lazy fraud, that's not true at all.

Belle - you need to be signed off. But you know that, I think. So sorry you've had such a difficult weekend

I have a history of severe depression too & have been hospitalised. In fact, my GP said that this was depression - I knew otherwise. I KNOW when I',m depressed & I know the difference between that and feeling pissed off & exhausted from never feeling well. I'm also a public sector worker.

I have to talk to my GP tomorrow to get some more Tramadol (although it makes me feel funny & doesn't entirely rid me of the pain)

I guess I was lucky in that my doctor said he trusted me to know that this was NOT just depression, and that as I had enough experience, I knew myself well enough to know this is a physical issue. He also said that depression doesn't usually present itself in such vastly different ways in the same person over time.

I did read a book recently (at least 10 years old so obviously not latest news/research etc) that had an appendix of diagnostic criteria. This included a list of conditions which rule out a dx of CFS. This included 'previous history of major depressive illness'. Hopefully/presumably this has changed. Having depression doesn't mean you can't get a physical illness too!

Solo - funny (sort of) you mention sleeping while DS played. That was always something I never wanted to do. After I had my chest infection relapse, when I suddenly got the strong flu-like symptoms which were the start of this big crash, I was alone all day with DS and I literally couldn't stay awake more than a few minutes. It was scary :(

Yes I know the difference too.

Fuzz it is scary. You can't help yourself though, can you? I would wake up ages into the day with Ds still playing or watching Thomas the Tank.

That thing about many severely depressed people having been well from that for a considerable time and going on to get CFS was told to me by an ME consultant at Barts as I recall (but it may have been elsewhere that I got that info) and so that would be at least 10 years ago.

my internal conflict will drive me mad............. i havent gone to work, im going to GP but the guilt is killing me.......i do have to say the relief was also as overwhelming.........

mybest friend told me last night that i need to get my ME sorted once and for all...

i am scared that if i actually givein to it, how the hell will i keep a roof over my kids head....

to admit to ME means i cant work 30 hours a week ( because i cant!!!) will they allow me to do my job on reduced hours......... will they renew my contract next year........... all what ifs i know and i really do try to live one day at a time, but my home and my kids are my prority.....

i could do bank nursing but that means going in on days i feel well, ( i never feel well!!!) and a different clinical area most times......the added stress will tip me over the edge.....

!

Oh belle :( that makes three of us off to the doctor today then I think? Good luck to you and grockle.

You know, I read that several people who have recovered from ME have said that they only started to get better when they fully accepted they were ill.

That means stopping. But it's so hard. :(

Hmm not so impressed with the doctor I saw today. Felt a bit rushed. I did get a repeat script for amitriptyline, I am to double the dose to 20mg for 2 weeks and then up it to 30 if I want to.

She also said I should try cutting out wheat AND dairy. At the same time. Should I?! It seems a bit extreme, and she said herself there have not been big enough studies to prove anything - so more anecdotal evidence I guess. I don't know, I am desperate to feel better but at the same time I am so lacking in energy and cognition that I'm not sure I'm up to making such a massive change. A lot of the time all I can manage is toast (and even then I have to take the spreads in to the living room so I can sit on the sofa instead of standing up to do it!). What should I do? I don't know if I should wait until my appointment with the specialist.

Someone asked me about the closed files on ME/CFS, I just found this
valerieeliotsmith.wordpress.com/2012/08/21/the-secret-files-on-mecfs/ it links to a pdf discussing them, hth.

Oh Belle that internal conflict is awful isn't it! Perhaps the being hard on ourselves is part of our vunerability. Good that you are seeing the GP and I hope the time off is helpful. I too feel guilty. I did not go to work last week as I am signed but I worried about my collegues. I know very well I could not have coped all day at work (without making mistakes/falling asleep/ forgetting important things) but I feel a fraud because I did manage a little at home.
Interesting Belle most of us on this thread work in public sector (health/prison/schools etc).
Fuzz I wondered about trying wheat free but have only gone for low dairy and low wheat. I have heard that for wheat - going low is not good enough. Its hard enough cooking for the family anyway when debilitated. ds favorite food is pasta, and replacing toast is tricky. I did try wheat and casein free for ds when he was smaller (and I well) but gave up when for him it made little difference . I am caffein free and that is fairly easy - i keep a few teabags in my bag to use if i go somewhere without cafeinfree warm drinks. Many families with children on the ASD spectrum are G+Cfree so I guess they would be the experts at family catering. It feels like a whole new world!
Sol I also sleep sometimes when ds is awake - I cannot stay awake - he needs less sleep than I do. He is 12 but his sn mean he needs the supervision of a younger child. I work on the principal I would wake if he went somewhere he shouldn't or needed me. He has a very load scream when distressed or tends to run for me rather than randomly now.
I think I have said before that the most helpful thing about the CFS clinic I attend is getting me to accept I am ill and not lazy or a fraud.

The conflict & guilt you feel about not working is horrible, especially when you can manage small tasks at home. It makes me feel like a fraud too but managing a couple of jobs at home is very different to getting through an entire day at work. I am on my 3rd week off but I am shattered & not understanding anything so won't manage at work. I feel like I've got dementia or something. I keep saying random things with the wrong words so everyone thinks I'm bonkers. My friends are meant to be coming round for a few drinks on Friday but I'm going to have to cancel because I'm really not well enough.

Bank nursing would be stressful, I should think, I was looking at the criteria for DLA and I meet all the criteria - I imagine most of us would so I don't understand why it is so hard to get. My GP has requested to see me tomorrow.

Fuzz, I hope the amitriptiline helps - I take 50mg but I can't see that it makes a difference. I don't know about giving up wheat and dairy. I used to be vegan but have no idea what I'd have eaten if I couldn't have wheat either. If I was sure it'd help, I'd do both but it seems like a huge effort for no definite improvement.

I know someone asked about my experience at Barts and my memory is not great, so bear with me.

When I was seeing the consultant and nutritionist there after the group thing, they asked me to get involved with a diet (not for weight loss) trial ~ which I did try. It could have been a sugar free one or a wheat free one; I got the wheat free, but it was more involved than just cutting out wheat products, I had to cut out things like mushrooms, sugar, alcohol (I don't drink much anyway) and some other stuff which I can't recall. I don't think I lasted more that a couple of weeks tbh as it was really hard to follow, but I didn't feel any better over that time.
During my group sessions, we were taught how to manage the illness, how to be kind to ourselves, how to get support. I was the only person in the group that worked full time and was a lone parent; nobody could understand why I couldn't 'just go part time' but it isn't possible for everyone to do so. The biggest triumph for them as regards me, was when I said that I had started to sometimes use instant mash! they were ecstatic! I am not a quitter and it took me such a long time and a lot of effort to slow myself down...I did manage to, but I still feel ill with it.

I think I should have listened to the advice I was given at the beginning and rested. It took me about 6 years before I could let myself stop living in the past. I used to say 'I used to be able to...' fill in the blanks with any number of activities I did and all at 100 miles an hour.

The guilt is normal, because we aren't used to giving half measures of anything are we? and asking for a little slack or some help is alien isn't it? but unless we do make these adjustments, I don't think we will get well.
Having had Dd I was able to take a years mat leave and then tag on 5 years of career break which has been great, but has not made me better, it's just meant that I've been able to be less physical...the stress though has been dreadful; never knowing if I can make all the bills or keep the car running etc.

As a last for now, I went on a weight loss diet around 10 years ago for my own benefit, nothing to do with ME. It was a detox type diet and very strict. I had to cut out all dairy, all bread, rice, oats, and anything containing those things, so no pasta, sauces etc. Lots of other things cut out too, no sugars for instance, no alcohol, no fizzy, no root veg (high in sugars) and no caffeine. So whilst I was losing weight, it did not make me feel any better as regards the ME. The only thing I continue to not have is caffeine; no particular reason, but I do.

Solo it was me who asked about st barts as I'm going there in November - thanks for the info :) I have been told that if I am diagnosed with CFS I will be given 30 sessions of 'multidisciplinary' treatment. No idea what that entails so it's good to read your experience. I guess as it is a research centre there may be new things to try.

I think what bugged me about the doctor today was that it seemed a bit extreme to suggest cutting out two large groups - with no advice on what to replace it with especially with calcium etc. I mean I can look it up but really, no advice at all? I don't want to be all obstinate about it though. I think with ME there is always somebody who knows somebody else who tried blah blah blah and says you should try it.

ive been signed off for 2 weeks, switched co codamol to tramadol, and been referred to mental health team for councelling!!!!!

GP was ok, so im lucky.

Grockle do you take amitriptyline at night!/ regular basis. 50mg is a big dose, i take 50 mg but cant work when i take it because of the brain fog, i take zopiclone to help me sleep usually, (not withthe amitriptyline) which doesnt make me "floaty" next day, but the ami does make me floaty!

just spoke to work...........all my clinic have been cancelled..which is a nightmare!!

Fuzz, i wouldnt do anything till i had been to clinic, the clinics are good if you listen to the advice.i was and still am in denial so it was no good for me at the time.... although the group did celebrate when i said i had stopped ironng quilt covers!!!!!

Yes Belle, I take amitriptyline at night. It doesn't knock me out. I was originally referred for counselling but then to a psychiatrist instead as I got worse. It turned out that although I don't have a current mental health problem, it was the best thing for me. Tramadol does make me floaty & I take that throughout the day whilst I'm not working. No idea what to do next week when I am back at work.

Fuzz, it does seem like odd advice. I would wait, I think. The clinic at St Barts sounds good.

Thanks I think I will wait then. It felt like I would be bad not to try it, and not making an effort to help myself :( but I'd rather wait until a specialist recommended it. I am just too tired to think about stuff like that especially as there's no guarantee! Oh well thankfully I have the pills on repeat so no need to see the doctor anyway.

grockle...is the ami for pain or sleep......... it makes me really groggy the next day thats why i switched to zopiclone and pain relief........... i often wonder how i would feel if i stopped all my tablets.. i wonder if they contribute....

fuzz just keep doing what your doing, then the specialist can talk you through a normal day and help with that... xx

Belles sounds like your GP was helpful.
I use amitiyptylline in the evening to reduce the discomfort so helping sleep (sore muscles and cramp used to keep me awake amongst other things). At first I did not think it made a difference but slowly I think it has. I only take 10mg but I am petite. I was supposed to increase the dose but I was very reluctant to. I started on half a tablet (5mg) to reduce tha unwanted heaviness next day. I still struggle with sleep but not as much. I did struggle at first to get upnext day but it is not as bad now. I take it mid evening.
Fuzz are you waiting for the CFS clinic appointment? ( sorry if I should know)
Grockle how are you today?

I take the ami at 7.30pm (have an alarm) it helps me sleep a bit I think but not too much of a hangover - it was worse when I was taking it at 9. I think I might try taking it even earlier as I do find it hard to get up (but then I always have). No idea if it is helping with the pain.

I wonder if it's contributing to the fogginess. Things like reading bedtime stories and talking on the phone are getting really hard as my words fall over each other or just stop altogether.

My appt with the specialist is late November magso. I go back to work next week though :( 3 weeks part time (prearranged because of DH's operation) then full 37hrs - I will have done 2 weeks FT by the time I see the specialist. I miss work so much, I'm sure it helps my depression, but I'm really scared. I have not done FT since mid July I have about a week left of full sick pay, then a month of half pay left I think... I'm certainly not expecting to be entitled to ESA even though I damn well should be. But DH is not allowed to start applying for jobs until he sees the surgeon on November 1st. He says he's more than happy for me to reduce my hours (though as solo says it's really not that simple!) or even stop altogether (nooooooo :() and go to work FT himself again, he is so great and just wants to look after me, but I'm not prepared to risk my job (my first 'proper' job as I had DD at 20) yet without knowing for sure if he's able to. As it is, he won't be able to do manual work, which is a big problem as he worked in retail management.

Argh :( oh well I have just taken my first double dose of ami so we will see how that goes. And I just realised I forgot to do the Tesco order and we have no food. Dammit.

My ami is for pain (like magso) & also to act as an AD. The drowsiness it is meant to cause was supposed to be a bonus but it doesn't make me sleep. I need Zopiclone for that but my GP is very reluctant to prescribe it. I am tempted to stop taking the ami buty my psychiatrist said I should be on ADs for several years

How's DH doing, Fuzz?

I've been ok today - my muscles are tender & feel sore but not terrible which is an improvement. I'm incredibly mixed up & confused though. I start conversations but forget what I am saying halfway through & can't tell you what DP has just said to me (actually, he just said I'm challenging!) I don't understand spoken words & dread the phone ringing because I can't answer it.

I am hoping to eventually up the ami until it is at antidepressant dose - presumably it would still have the painkilling effects? I need an AD anyway, and SSRI types have not worked with me. It is apparently normal for people on the autistic spectrum (as I am) to not get any benefit from newer types of AD such as SSRIs, but to find older types like tricyclics (such as ami) more helpful. So, maybe it'll be an all round magic bullet eh?

DH is improving thanks grockle :) - he has managed a couple of school runs, although was exhausted after. Still a bit bruised and his knee is really sore (it hasn't been used for 2 years really due to crutches) but it certainly is an improvement. I just feel guilty and ashamed that he's had to get back to all the housework and childcare so soon to pick up my slack yet again, but he keeps telling me he needs to do it anyway for his rehabilitation, so that helps a bit.

None of the usual ADs worked for me this time either when they have in the past. I am fairly sure this is because I am not actually depressed! The good thing about amitriptyline is the painkilling properties as well as better sleep. In theory anyway. I hope it works for you. I was told that Duloxetine had similar effects but it made my night sweats unbearable.

I'm glad Dh is getting better. Don't feel guilty - you are unwell. You have to look after yourself as well.