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 take zopiclone, it doesnt make me groggy in the morning..... i still dont sleep well but dont sleep at all without it....

i so glad your experience wasnt too disturbing...

ive managed 3 mornings in work this week, im feel quite well considering, still need my afternoon nap>......ffs im 39 not 89!

Thanks I think I have had zopiclone before. I'll ask about that. Some nights I sleep fine, others I just know I'm not going to sleep, and I can't figure out a pattern at all.

I don't sleep in the day now as it just seems to mess me up further. I'll try and rest regularly, but not sleep.

OP - I'm in a rush so haven't been able to read the whole thread, so apologies if this has been covered, but among other things ask if you have had a folic acid test. Docs bang on about vitamin B12 (and it is very important) but I don't believe they routinely test folic acid.

Someone in my family became very ill with symptoms like yours plus memory loss plus tingling and feeling like he had horrible flu tiredness but without the temperature. It went on for months and months.

He kept being told all tests were normal, was given a diagnosis of exclusion i.e. CFS/fibromyalgia until a different doctor ran all the bloods again and included folic acid. He had a reading of under 3 i.e falling off a cliff level. They said it was "very low" but did not think that was the cause. He was given folic acid and some of the symptoms resolved within days (the memory loss for example) and the rest gradually went away over weeks. Because he had been ill for so long it did take a time to recover.

I did a lot of research on folic acid and apart from the well-known pregnant woman problems research on deficiency is abysmal and many docs seem ignorant about it. Mostly they worry that taking folic acid can mask B12 deficiency but they don't put any emphasis on folic acid deficiency itself.

Just a long shot, but could be worth raising it.

That is a really good point, I'd never realised it was that important (although a lot of fortified foods have FA in don't they? Cereal etc?) so that's one to ask about.

I keep wondering, should I just get a load of supplements and start taking them now, or wait until I've had enough tests first.

Oh FFS. Is diazepam supposed to be a painkiller? It seems to have worn off now and I can't sleep, but also while today was relatively pain free I am now back to the massive aches in my joints. WTF. Probably better though as I'm seeing doctor tomorrow. Have to take the DCs with me as DH has an ESA assessment at the same time, don't know how I'm going to manage with the buggy (but preferable to chasing round after tear away DS)

I seem to be hogging the thread again

Am back from the doctors. Most blood results were back, and normal, barring slightly low iron and slightly high ESR - he said these are both possibly due to having been unwell for ages with the chest infection (he reckons it was actually flu) and will test them again in a little while. The immunology results aren't back yet as they get sent further afield.

So he has referred me to the CFS clinic already (it's the one at Kings or St Bart's, I misunderstood and there isn't one in this town). He said he will call me if the immunology ones show anything and will switch the referral if relevant (eg to rheumatology). He said they might insist on more blood tests first so I'm not really sure what's going to happen.

He was quite clear that he doesn't think it is related to depression, he said as I've had depression for so long he trusts me to know that it's different. Interestingly he also said it is unusual for depression to present in different ways in the same person over time. I mentioned the diazepam and he is understandably reluctant to prescribe it as it is addictive, but wouldn't rule it out completely as it helped with the pain. He's given me zopiclone to try as and when.

Manager visiting tomorrow so I'm going to discuss phased return as I think I could go back to work next Tuesday as planned but no way could I handle full time straight away. I am worried though as my 'target' is not to have any more absence in the next month, what if I get worse again?

Hello - I've been away for a bit & have been feeling much better. I even managed proper walks - 5-6 miles which I could not have done several weeks ago. I couldn't even manage a 2 minute walk to the shop! We have a busy couple of weeks before I go back to work. I'm having a massive panic about that because I'm terrified I'll become ill again & feel very unprepared for my return.

Interesting about folic acid - I shall google. My ESR is still slightly high but nothing worrying.

Fuzzpig, you sound like you've had a really rough time - I think our backgrounds & some of our issues are similar. I've had diazepam for my back when it was really bad. It didn't stop the pan but made me sleep which was lovely. I've also had zopiclone which I love but my GP is very reluctant to prescribe either so I have to cry and beg for several appointments before he'll allow me to have 7 days worth of drugs.

Anyway, hope everyone is ok. I'm off to a wedding this afternoon. I'd really prefer to stay home & sleep but I can't!

Hello grockle, glad you're feeling a bit better and managed to do some walks! :) I understand why you're worried though, so I hope you can take it reasonably easy (!) until you go back to work. Surprised they won't give you zopiclone without a fight, I thought that was fairly readily prescribed. I have two weeks worth but haven't tried it yet as I am saving it for the nights I am not naturally sleepy. I have nearly run out of painkillers so I don't know what to do about that. I totally forgot to ask. Is your doctor as reluctant to prescribe other drugs? He sounds more like an unsympathetic arse each time you mention him :( have you thought any more about seeing somebody else?

I am going back to work on Tuesday - I had another visit from my manager (and a colleague to 'accompany me') yesterday. It went well, we discussed a few things including very hypothetical issues like redeployment. I did get upset though, I cried a bit just because everything is getting on top of me but they were really lovely. I said I was feeling better as I'd had a better couple of days but I'm not sure she's convinced I should be going back yet. She was very reassuring about the prospect of further absences as I was scared about that, she said she does understand it is sometimes unavoidable and that we will talk every week to see how I'm doing.

I will be doing 4hrs a day tues-fri next week, which includes a 15min break (and hopefully getting a lift each way with a colleague who lives nearby) and then the idea is to gradually increase it so in five more weeks I will be back at FT hours. I will also have slightly amended duties to avoid heavy lifting and long periods of standing. But I will have to gradually get back to doing those too because they are an essential part of my role. If it's felt I can't, then redeployment would be considered. :(

Hope you manage to enjoy the wedding, BTW. Do people there know you aren't well? Hopefully they will understand if you have to take it slowly.

I managed an hour in town

Feeling it now, am not so optimistic about work. It was horrifically crowded too and I don't like that.

Hope you have a fab time this afternoon, Grockle. I'm glad that you're feeling a bit better. Don't overdo it though. It's easy to feel a bit better and try to do some stuff only to find you get knocked straight back down.

I've had a grim few days. On Wednesday I had a dental check up and then had to get a tiny bit of shopping. In the evening, I had to visit a friend who is in hospital longterm, another friend and I go every Wednesday. I've hardly been able to get offmy bed since. Exhaustion, muscle pain, nerve pain, head ache, joint pain, sore throat, irritable bowel, eyes not working, confusion and damnable muscle shakes. I can't even go to visit my dad today on his birthday. Yesterday, I couldn't even hold my own cup of tea.

I am so fed up with this whole thing. Sorry to be a whinger.

((((stressed))))

Totally agree about getting knocked down. It is like one step forward and two steps back isn't it. xx

Wedding was lovely, thank you. I was there with DS and we didn't know anyone else apart from the bride & groom so we didn't stay very long. I was worn out too. It's interesting that I've been home for 3 days and feel achey and tired now but was fine when I was away. It seems to be daily life that wears me down - the rushing to get to places, constant thinking about what I need to do, what to cook, etc.

Stressed, how are you today? I get so exhausted that I can't hold my own cup. I find it quite embarrassing & it makes me feel really pathetic. I really hope you've been able to rest & are feeling a little better today.

How's everyone else?

Glad you had a nice time, Grockle. I'm a bit better today, thanks.I've actually managed to get up today, so that's an improvement The daily grind does really wear you down, even things like holding a conversation can be too much. I have a planning meeting tomorrow night with my Mission and Outreach committee and I'm dreading it. I really enjoy them because we are all good friends and committed to the work, but it just completely duffs me up for days afterwards.

Do they know how much it wears you out? Maybe they'll be easy on you if you explain you're having a bad time.

Nightmare, isn't it? When simple things like meeting people you know and like is so shattering. Try to take it easy.

Fizzpig - I was reading another thread earlier and can't look at you in the same light any more - I am sniggering about it now.

Would that be the ridiculous things you do with OH thread by any chance :o

(I hope it is, otherwise I've just doubled my shame...)

Yes

Thankfully nothing in that league... at least I don't think so

Certainly cheered me up anyhow! :o

OOH!, I haven't seen that thread, must go and look for it.

The meeting will be fine, fuzz, it's just that any kind of "socialising" wear me out completely. Having to maintain a conversation or engage my brain is just a bit much for me. The thing with my M&O committee is were all in the same boat really, I have my ME, another has terrible RA (replacement joints etc.), another has thyroid problems amongst other things and another has mental health problems and a host of other things as well - and we're supposed to be in charge of turning the church around

We're having the meeting in one of our homes tonight so that it's a bit more social because we all need a bit of a lift at the minute. It's a weird felling to be looking forward to something but dreading it at the sametime.

I know what you mean! I have always felt tired and overwhelmed by any socialising, but mostly mentally - never understood why until I realised I have Aspergers. Now I feel worse physically of course but have really enjoyed having visitors these last two weeks as I've been really lonely most of the time. I know being back at work will be mentally tiring again though. I'm tempted to ask if I can use a spare room to take my breaks - I do love chatting to my lovely colleagues but I have a feeling I will need a few minutes silence while I'm still recovering.

First day back tomorrow. Have been up in the night with a bad tummy (thankfully wasn't sick) and feel really horrible now. Was planning to nip into town again today just to see how it goes but I don't know now. I think if I do go I'll have to reward myself with new shoes - that's the rule, right? :o

How is everyone?

I've been back at work for two days now. Yesterday was good, did really easy stuff. Felt ok afterwards although I nearly fell asleep soon after getting home. My colleague is driving me to and from work this week which helps a lot as I don't have to worry about bus times etc.

Today not so good, was moving stuff around a lot more - not heavy lifting as I'm not doing that for another couple of weeks, but lots of smaller stuff which has taken its toll. Feel very achy indeed now and can barely stand up. I am expecting a phonecall from occupational health tomorrow to discuss phased return (they were supposed to do this last week before I went back! ) and I don't know what to say to them :( I really want to be back there but I hurt. I just hurt. I've only done 4 hours a day FFS.

Not due to see the doctor again but I've got an appointment with the neurology dept tomorrow due to the headaches - I got referred a while ago and haven't had anything as bad as the headaches I was getting then, so I hope they won't think I'm wasting their time. The doctor thinks the headaches are related to CFS so I don't know if they could even do anything!

Oh Fuzzpig... well done for going back to work... sorry it's so hard. I think you just need to tell occupational health what you said here - that you want to be back but that it hurts. I'm not sure what else you can do.

I'm back at work next week - 3 days relatively quiet then 1 hard day then the weekend. I'm hoping I can manage it although I haven't been able to do any planning because my mind is so frazzled so I'm off to a bad start. I don't really know what I can do about it. I can't do anything that requires any concentration or deep thought but it is great to feel physically better than I was. I'm very tired at the moment but not dropping off easily which doesn't help.

How is everybody else?

I know you're right grockle, I'm scared to tell them the truth though, they might send me home again. But I know my manager will ask me how I am when I arrive today so I will endeavour to be honest and say I hurt again. Longer day today as I've got the hospital appt straight after work. It's also my DS' 3rd birthday, but we aren't doing anything for it today. I haven't managed to get out of bed yet.

Sympathies with the frazzled brain. I've just got another extension for my current OU assignment and it doesn't seem long enough, and I've been panicking about my exam. It's frustrating, I'm normally really good at all this academic stuff, and now sometimes I can't even string a damn sentence together.

Can you ask again about the zopiclone (maybe a different doctor)? I've found it pretty good so far, I'm making sure I don't take it every day though as I don't want it becoming a habit.

With the planning do you mean lesson planning? Are there any plans from previous years that you can use/adapt to make it a bit easier?

Back home after another tiring day. I hadn't really thought about how physical most of my job is - we've eliminated the two most obvious tasks but actually most other things are manual too and it is wearing me out. I did say I am struggling to my manager and she said it is to be expected I'm not really sure what she meant, yes I expected to be tired but not so much as this. I am still a bit paranoid about how other people see CFS, I was talking to my colleague whose dad and sister both have it and I'm really glad there's someone at work who understands, he said his family have had a lot of people thinking they are lazy (that's what I'm scared of) and people saying "oh but everyone gets tired...".

Occupational Health are recommending I stay on 4hr shifts next week instead of 5 - I'm glad they've said that. Saw the neurologist and he said the headaches are related to the CFS. He is writing to my doctor to prescribe a low dose of amitryptiline which I have to take every night.

I was also wondering if anyone knows of any good and recent books on the subject of CFS? I browsed at work today but all our stock is quite out of date, which makes me think it's a bit pointless reading it.