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.

Oh bollocks, that brilliant doctor I keep mentioning who actually listens and all that stuff... turns out he is leaving :(

Just delurking here to ask a question Hope you are all doing ok.
Won't go into too much detail but I've had ME diagnosis since I was 17-I'm 32 now. Over last 2 years I have been experiencing more and more neurological symptoms; nerve pain, feeling disorientated, clumsiness, trouble focusing with eyes, twitching etc. I had a really bad episode for around a month recently went to drs and they just say its the ME. All bloods ok apart from low vit d last year which is ok now. Anyway, I'm wondering I I should be pushing for a neurology referral? Or whether I should just accept it is the ME?
Any advise greatly appreciated. I'm feeling quite fed up about it all tbh.

I am a complete newbie to all this but from what I've read online it seems like when you are diagnosed a lot of doctors are too quick to write everything off as CFS. I think as things have changed (quite dramatically it seems?) you need to push for a referral.

Thanks fuzzpig-it seems impossibly hard to be taken seriously once you have this diagnosis-I'm sure if my leg fell off they'd blame that on the ME too

Defo push for referral! if its your ME fine if it isnt then at least something might alieviate yor symptoms.

Hi Fuzz, glad to hear work isnt impossible...just take it easy, and dont rush back to longer days, you might end right back at square one.
x

I feel like I'm nearly there belle. Square one I mean. Or like I'm getting flu again I can't stop shivering tonight and my neck hurts although the latter might be thanks to being prodded by the neurologist!

Just found out DH will be having his operation in 3 weeks time - good news of course but I'm really unsure how we are going to cope with it all at once!

u will cope cos you have to just dont put too much pressure on yourself.....good luck. how u feeling the nights after zopiclone?? im afraid im addicted! but as i see it it helps me get by without it i wouldnt sleep at all then i couldnt function.wrong ideal but works for me!

The zopiclone is ok, I'm not taking it every day. I am finding that when I don't take it I wake up early so maybe I should take it daily. Neurologist said I have to stop taking it when I have the amitryptiline though.

Work people said they don't want to put pressure on me but I feel under pressure. They are being pretty insistent about me doing the harder stuff from next week - the main thing I can't do is stand at the self-checkout things, they are getting me a barstool to sit on which will help but when you actually help customers you have to stand up/move around anyway so not sure how much it'll help. I can't even do the basic stuff without hurting (shelving/tidying) but I'm too scared to say so as if I can't even do that then there is nothing I can do.

Thanks to DH's surgery I have 3 more weeks of phased return (1 week each of 4hrs, 5hrs then 6hrs a day) then 2 weeks completely off, then maybe 4 weeks of reduced hours while DH recovers. So I have 2 months before going back FT. I have started a separate thread about it in AIBU and have had lots of advice about asking for help from places like homestart.

Why do they call it chronic fatigue, it doesn't describe the pain at all, it makes it sound like just being tired

Grockle just wanted to say good luck for returning to work next week, will be thinking of you xxx

if only it was just fatigue!!!!! your right the pain is so distressing, i hobble about like an old lady, i know im nearly 40 but.......

Im at ME clinic on wednesday just hope it is of some use>

Good luck belle, here's hoping they can help! :)

My arm is currently in a makeshift sling from where I pulled it last weekend by the grand action of... picking up a bag. It's worse now. Dammit. No idea what to do about that on Monday.

Thanks fuzzpig. I'm extremely shivery too. I don't understand why I have goosebumps when it's 20 degrees out. Terrified about work - I'm doing a bit tomorrow then a proper day on Tuesday. I'm relatively new to my post (well, this is my 4th year so not so new really) & there are no old plans to adapt.

After a good couple of weeks, my legs hurt so much today that I needed my walking stick. I hate this & feel like i zm attention seeking or something. The DC were doing impressions of us yesterday & for me, they hobbled around moaning 'ohh, my legs hurt, I can't walk, my legs hurt...' etc

Sorry your good doctor is leaving, FP. Is there another good one you can see?

Oh grockle that must have been hard to see (your DCs I mean). DD often talks about the past by framing it as "before daddy hurt his back" - it's so sad :(

I worry about being seen as attention seeking too. I felt like a fraud today as actually while family were here I felt pretty much ok, I'm now in massive pain again (my arm especially ). I don't want people to think I am just making all this up because when they see me I am fine. It's such a misunderstood problem! My manager said I'd feel better while I was distracted by working, yes that may be true (or not, as it turned out) - but it's afterwards that you suffer. I don't think people get that. Maybe because for 'normal people' they do something difficult and they are tired, then they get over it, but for those with CFS, they feel it the next day and then some.

I was wondering about whether people with CFS are more sensitive to weather changes? Just a random musing. I'm waffling now and really have to sleep. Dreading tomorrow, I just don't want to be there, I love it so so much but it will hurt to do anything. My manager is away for two weeks and I haven't even spoken to my line manager (who will be dealing with my phased return in her absence) about this yet so I've no idea how she will be.

You have probably all read it but there's a great article on "butyoudontlooksick.com" called "spoon theory", google it if not, I just reread it yesterday and I've been thinking about how many everyday things are now 'spoons'.

spoons

No idea about doctors btw, nearly cried when I found out mine was leaving - seeing one I've never heard of next week so we'll see.

Really must sleep now xx

How was work for you grockle? I got through my shift with a few tears (in private), didn't really get to see my line manager so couldn't discuss it.

hi fuzzpig, and grockle........ work is bloody tough isnt it... at some times my life is work come home then bed, day in day out......... and fuzz i used the spoon theory to explain the my ME to my kids, they actually got it, now my daughter asks if i have enough spoons to take to park or go shopping which is tough, but on other occasions i can use it and say i have 1 spoon, what shall we do with it.

at least we can come on here and share the crap we face day today....

I really want to use the spoon thing (so cute that your DCs use it!) to explain it to colleagues... feel like it might be a bit soon though. Just a feeling I've got from my manager when I've been explaining things - like they think I'm enjoying it and am a hypochondriac? Maybe I'm paranoid. But that's the way life is now isn't it, heck I'd be totally screwed if it wasn't for the Internet, I wouldn't have the faintest idea what was wrong with me or how to cope with it or how to approach doctors etc - if it weren't for this thread I would be totally alone.

when i was diagnosised i sent my close friends and family the patient uk information leaflet on CFS........some of em thought i had lost the plot... as for work, i told them about the spoons in aroundabout way by telling them i had to explain it to the kids and this was how i had explained it..i said it in general conversation, and didnt make a fuss, i still feel they dont get it but im lost what to say without sounding like a hypercondriac!!! so i have stopped trying.

ME clinic for me tomorrow lets see if this sheds any more light on how to engage others!!!

Hello

Work has been ok for me this week but it's been an easy week - Monday off, Tuesday & Weds in meetings so sitting, listening all day (dull but not physically or mentally taxing) and today was a quiet day with the children. I'm off tomorrow and feel quite pleased that I've managed a whole week (well, sort of). Next week will be interesting as it's a proper work week - all children in every day, no breaks or quiet times. My back hurts a lot today but nothing else. Also, DP has been home all week so done all the cooking which has helped enormously.

I love the spoons analogy. I might use that with DS (& DP who is actually quite supportive)

How was the clinic, Belle?

Glad to see you back grockle and to see that your first week has been good :)

I'm off today as well! Working tomorrow though, 4 hours again. Saturday's are much easier though and more relaxed even down to dress code. Next week I'm doing 5 hours a day. Lots to do today including my Aspergers assessment!

Hope all is ok belle and that your appointment was helpful!

(why was there a rogue apostrophe in my Saturdays? )

Hi Grockle Fuzz and all

I too have done a full week....and what a week, monday was nice tuesday i was presenting at a conference so very nervous but got throu it wed ME clini pm and a full day in work yesterday ( i dont work fridays)

ME clinic was an assessment, and actually quite theraputic just to talk it all throu again with some one that actually understands ME. the outome was that i have been referred for CBT. but the Occupational therapist that assessed me feels i still havent ome to terms with the fact i have ME. in fact i am in denial, so i need to learn to accept my condition, before i can learn to manage more effectively.

Main issue is i dont take breaks my day is non stop from 0700 till 1800 when i physically cant do much more.

i need to take breaks through out the day to avoid this boom and bust life i live!!!!!

IT ALL SOUNDS SO SIMPLE, BUT I DONT KNOW HOW TO RELAX!

i have been given the name of Andrew Thompson ( i think you can put into google and he has a few free relaxation downloads) im waiting for my son to do it im technically incompetent... so lets see how this goes...... have u got nice things planned for weekend!

CBT sounds good belle. I have had it before and may well have it again sometime soon. Did you discuss any physical approaches too like changing meds etc?

my medication seems ok although she did suggest taking something like pregabalin for pain rather than the odd concoction i do. however im happy with what im doing pain wise, and dont want to take anything on a regular basis. Sleep was the other issue and she stated zopiclone long term isnt the answer which i know but i am in no position atm to stop that, no zopiclone = no sleep for me. I am happy about the CBT i just need to accept this bloody horrible diagnosis!!

Hi Belle, I am a few visits into my CFS clinic visits and my first task was to get control of the boom and bust cycle. I thought I was already pretty good at that having struggled alone for a couple of years before I managed to persuade my GP to refer me. The most useful thing was to realise I struggle with people (especially family and work) thinking I am lazy (as people do). It has changed my attitude -I need to rest to be able to function, so resting is part of my treatment IYKWIM. It is part of accepting the illness. It is so good to speak to someone who understands.
I was given Amitryiptaline very low dose. At first I did not think it made any difference , but slowly slowly my sleep has improved and with it everything else. I still have trouble getting to sleep but I am not usually kept awake by pain. The specialist who diagnosed my CFS ( before I could see the CFS team) seemed annoyed that my GP had not thought to try me on meds for neuropathic pain.
Good luck with 'coming to terms ' with your ME. Although I wonder if we ever really fully do!
It is interesting that many of us have mildly raised ESRs and ANAs in our blood tests. I wonder what it all means. Perhaps just evidence our bodies are struggling. Any one else with raided eosinophils?

me i have had raised eosinophils but always just put it down to the season etc!! mYBE THERE IS SOMETHING IN THIS?? and thank you magso for you message, i really do stuggle, yesterday my little girl was ill, and as much as it was terrible she was ill and in bed it was arelief i didnthave to do much all day, my legs are killing atm!!! i have a full week of work ahead and really arent sure how i will cope!!

Fuzzpig good luck with the assessment!