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.

Yikes! Had to google the last of those as I'd not heard of it. I guess the thyroid problems are properly treatable as opposed to the others which are just 'managed'?

I have had thyroid function tested before which was fine but I gather that there are actually better tests which are less used? Can anyone explain this in idiot proof simple terms please?

Thanks leonie. So, I should ask for FT4?

And no I didn't know that about SHBG! Never heard of it. I am crap at science. How do you know how much oestrogen you have

Wondering how many bottles of blood they will have to take :o good thing I'm not squeamish!

So WDYD if the results are between 2 and 10? Since they wouldn't treat it?

Cried myself to sleep last night, feel really crap still. It's just not improving at all. Getting so grumpy from being stuck indoors and snapping at the kids. I just took a short walk around the block, certainly loosened my knees up (I feel like an 80yo saying that!) but really tired out like I've done an hour in the gym. DH struggling too and no support from anyone. Got family visiting tomorrow, was really excited about it as they live far away, now I'm dreading it because I won't be able to lie down.

I've written a list to take to the doctor. Hopefully they can do blood tests now as the cough is virtually better and it's 2 weeks since I finished steroids. I am also going to ask about returning to work. I remember a colleague doing a phased return when she'd been off a long time, to get used to being back at work. Anyone have experience of this? I am worried because my job (unlike colleague's) is quite physical and there are some tasks I will really struggle with so the best thing for me to do would be to tell them the things I can/can't do and for them to write the timetable accordingly. Technically this would be quite easy but I'm not sure they'd be willing to. I don't want them to think I'm being a PITA.

What are the costs like. I am supporting a family of 4 on less than 16k so unlikely to be an option - if it was, we would've got DH's back sorted out instead of watching him suffer for 2yrs :(

Or can you just pay for medication (if it were needed) and stay with NHS for the rest.

Fuzzpig I had a staged return to work after a long stay in hospital with pneumonia. Occupational health recommended I did not return to work but I was desparate to return - I did not realise I had CFS so a staged return (with the promise I would take a break when I needed to) was organised. I started just doing a half day- and frankly really strugged to do that. My speech and legs would go. It took a year before I tried a whole day and it soon became apparent I was not going to be able to return to my previous multiple days so I resigned from my other days as I felt I was unsafe to do more. I now only work one day a week and frankly struggle with that, with both my body and brain ( that fuzzy brain) letting me down. Work feels like the last little bit of myself left so I am hanging on by my finger nails - but keeping up to date and on the ball is tricky and I think I am loosing that battle. Perhaps if I had learnt to slow down earlier I may have managed better.
Anyway if you need a phased return ask for it. Occupational health should be able to help with details. Do not try to do more than you feel sure you can manage.

Ps do NOT resign like I did!!

That's a scary post for me magso! I only went to work (was sahm) because DH cannot work - but I was lucky enough to find a really lovely job that I adore. It was part time and I was dead chuffed to get a FT permanent position earlier this year especially as tax credits now require 24hrs/wk minimum rather than the previous minimum of 16! I'm so freaked out by this, I don't want to lose my identity and the confidence I've built up, but also I have to earn enough to support us. Also my 'specialist' role is only available to FT staff, I love the extra responsibility and I'm doing well at it, so I hope they'd make an exception so I could keep it if I reduced my hours.

I definitely won't resign - at the worst I could probably get a transfer to a desk job (work for the council so plenty of different roles). Since I got sick(er) DH has been saying that when he's recovered he will go back to work FT (rather than school hours as we'd planned) so I could get a break. It's ridiculous, I've only been working a year, how can I need a break already? And I don't want him to push himself too fast either as he's likely to return to retail management. I can't even focus on my OU degree now let alone what to do in the future.

This job has been one of the best things to ever happen to me and yet this has been the hardest year of my life.

Sorry to scare you! It was not meant to be scary but I suppose I do not want others to try to work through illness and end up with CFS as I have done.
I resigned because I could ( Dh took a more senior post) and I did not want my collegues to keep having to work extra to cover for me. I think I would have had a better outcome if I had not tried to do so much so soon - but noone could tell me and with a sn child really taking life easy is not a realistic possibility.
I was paid my contracted pay during my staged return and the object of occupational health is to protect your health. I think it is worth exploring and listening to their advice (unlike me who did not believe I should stay on sick leave for longer!). The council shpould have occupational health - but you may not need their help. Your employer will want you well and able before you return to FT work.

Bizarrely my boss just phoned about said referral, she is coming to visit me to discuss it. In my house.

That sounds positive - I think- though I would not want an expected visit in my (very messy) house!

That was my first thought! She is really nice though.

Today's been a crazy day of phone calls - just got my appointment for an Aspergers Syndrome assessment next month. Yikes.

Hi Fuzzpig

ive been keeping up with how u are getting on. i too did a phased return to work in my old job and it was through occupational health, infact i never got back to my contracted 30 hours but managed to get back to 24, which i was managing. throughout all of me ME story my biggest fear was giving up work, not only because of the finacial side of thing but because my work is my identity. I have worked hard to get to where i am today. my current post is a drop in grade, but nevertheless A demanding role, and its that that i love. i like to make a difference no matter how small, so giving up would have been devastating for me. I do think if you listen to occupational health they will protect you. i did try to claim diability living allowance but becasue i had to put on my forms that i HAD to make meals for my kids because i was a singel parent i was refused. what they didnt see was the times when my kids where at there dads and i didnt get out of bed for days, and cooking was the last thing on my mind, as was washing (minger i know) etc....

the past 12 months have changed dramatically. i have moved away from where my ex lives to e closer to my family and my partner who now lives with me and helps me sort the kids. this meant i had to find a job (with my sick record i thought was impossible), my son (13) choose to stay with his dad because he was settled in school and didnt want to leave his friends ( he is now over 100 miles away) thankfully my daughter came with me, and i see my son lots. ME as tried its best to ruin my life but i wont let it. stay determined, but accept help wherever and when ever you can.

have you considered applying for DLA for you and your husband?

just a thought

how is everyone gettin on today. ive had a new referral to ME clinic (i moved last year). i wonder if they will have my magic wand?

Wow that's good news belle, hope the new place will help you.

I'm not so bad today, have had family over who we haven't seen for a long time and don't feel as tired as I expected but I expect I will pay for it tomorrow!

Damn, definitely feeling it now. Not terrible but have that "will be worse in the morning" feeling.

First thing that hurt was the main joint in my left middle finger. WTF?! I usually ache in my bigger joints but one finger seems rather odd

Belle hope you don't mind me asking but why did it take a whole year for you to get a referral to a clinic since moving?

Also is there some magic way of finding out if there is a clinic near me - I have googled but can't find anything closer than a 20 min train ride although that's not too bad really.

Hi Fuzz

it took a year because i have been so busy with everything else and just putting up with things. i was originally referred back in Feb, but the GP didnt send llods results so the referral was refused, i queried it all again last week and it was sent back ( with blood results) and i got thte letter yesterday. i can say i was so suprised it was so quick, my referral to last clinic was 6 months!

as for pain in fingers thats where mine starts, right hand 3 middle fingers ?????WTF indeed..

Do u mind me asking where you live? my new clinic is a 20 min drive too..

they are usually regional.

how did you get on at the doctors today.

I hope you get some answers today!
x

I am back from the doctors and I'm feeling wobbly and scared. But also amazed and relieved that the appointment went so well.

He asked how I was and I said it varies, then told him that the reason I was there so soon was to discuss the fact that I have suffered these symptoms and more for over a year in milder form. I had looked over my list and my posts on here this morning to remind me what to say, but I didn't even get through them all. He did ask if I thought it was due to my depression or if I thought it was something else, I said the latter. He was also very understanding about why I hadn't seen anyone sooner.

Then he said "have you heard of chronic fatigue syndrome" :( :( :(

I said yes, and wanted to cry partly because it makes it seem so much more real and scary, but partly due to relief that he'd listened and sort of confirmed that my concerns were valid.

So, he's printed off some blood test forms for tomorrow - not sure exactly what there is but I know it includes all the usual ones and some immunology ones. Going back next week to discuss results, and he has actually mentioned a possible referral to the CFS clinic (looks like there is one in my town after all, I'm in West Sussex BTW), I am a bit fuzzy on the detail but I think that he plans to refer me if the bloods come back clear.

My manager is visiting tomorrow, how much of this should I tell her? I want to keep her informed (particularly as the doctor said I shouldn't pin all my hopes on returning to work after bank holiday) but I don't want to say all this about CFS if it turns out it's something else.

I am so pleased it went well, and it is scary but its better that it all been in your head and thinking you are going mad.CFS is real, it might not be a disease but it can be as debilitating as some... i say this to highlight you have a reason for feeling like you do. what bloods as GP requested, im thinking U+E (to check all salts in your body and kidney function) LFT (to check liver and its function) TFT ( to check thyroid might have added t3 and t4 too) FBC (full bloods to check if your aneamic or have infection etc) CRP ( to check for infection) is there an esr ( check for inflamation).

I would tell your manager that GP as requested more bloods and wants to see you next week, you should know more then. tell her how frustrated you are about your illness and how you miss work but tell her how you have been. Have you ever wrote a diary ie. exactly how you feel and your symptoms, even if you think it is trivial, this will help with CFSclinic. write about your sleep pattern, how you feel after doing anything demanding, if you are tired straight away or later and for how long. even mention the strange finger thing... whatever this turns out to be this info will be really useful, because when your feeling a bit better its really hard ( well it is for me anyway) to remember how crap it is, for me its usually becasue i dont like to think just how crap i am.

keep us informed, and let us know how you get on tomorrow.

take care

I certainly hope it isn't, I hope it's something more treatable! Thyroid tests are included in what I'm having tomorrow BTW, although it wasn't one that he actually mentioned out loud - he is more worried about it being something like lupus, if anything. Glad he's doing lots of tests at once anyway. Not a completely exhaustive list but a good start I think.

This includes a test for Cushings which a doctor in the hospital recommended - we both agree it is extremely unlikely (0.001%ish!) but worth doing since the other doctor had suggested it due to a few matching symptoms. I have to take a cortisol tablet at 11.55pm!