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.

Thank you Grockle I got it this afternoon and it really cheered me up

I get the tired/heavy/shaky leg thing too, we took DSC to a local castle today and I managed one set of stairs before I felt to weak and dizzy to carry on so had to sit and wait for them.

POTS is a separte condition. Tachycardia or arrhythmias can be part of ME. One reason is its because our off switch is stuck on.....so when most peopke sit and rest their off switch kicks in, ours doesnt hence we are knackered all the time, when we do anything our heart rate may not have settled so it shoots up quicker than if it had been allowed to rest...............does this make sense.

Yes that makes sense thanks :)

Not just me then and sounds like the ME not something fixable. I don't espect anyone can do anything then. I think it is why I lost consciesness regularly in the early days - now I (and the rest of the family) am used to it and I know not to attempt to rush/run/turn qickly/jump out of bed etc! I took ds shopping (he wanted a particular item) especting a one shop quick hit but they had run out so we had to trawl around other shops, with the wobbly legs kicking in after only a couple. Ds (nearly my height but sn so sees things simply) just put his arm around me and dragged! I must have looked drunk!
I saw a respiratory physio having been referred to look into possible overbreathing as a cause of the fainting and breathlessness but she found the opposite (my body was failing to respond to the increase in demand for O2) so I had to learn to start breathing deep and slow before I move, then only move slowly to start with. I also do special breathing when using more energy than is comfortable ( ie on stairs) -deep in breaths through nose and fast out breaths through mouth ( like blowing out a candle) - looks silly but it helps. I do the same getting up in the night, although that is harder to remember and have headbashed the wall on the way down and woken the whole household a few times. Its taken some getting used to especially with ds to care for. He has however learnt to run back when he runs off!
It always feels like my heart is pumping faster to make up for the other parts not being regulated properly!

Hexham Forum Cinema screening of Voices from the Shadows on Sat 24th November at 5pm. Q&A session with Dr Nigel Speight. Admission is free but ring 01434 601144 after 4.30 to book a place.

Hello all.

I've been away but have just caught up. I don't think I have respiratory things, but I have collapsed through sudden hyperventilating. I wonder if that is related.

I seem to have an awful tummy bug - I never get anything like this so it's a bit of a shock to the system. It's really horrible, combined with a ridiculously heavy period from hell. TMI alert: there's loads of clots. I don't usually have heavy bleeding & never like this. And not combined with the stomach cramping & numerous visits to the toilet like today. I am wondering if they are linked.

I have news: I had my blue badge appeal and they said YES! Hurrah! I can go to the shops without crying every step of the way.

Hope everyone is well. I'd love to see that Kate.

Sorry about the bug :( but OMG congrats on the blue badge! That's really good news. Well done for appealing :)

Interesting about the over breathing - in a book I've flicked through recently it did say this was at one time a suspected cause of ME. It does make sense in a way, as if you aren't getting enough oxygen through not breathing properly, of course you can't respire properly. Also I know that when I had the chest infection this summer my GP was worried as I wasn't breathing deeply - I was doing shallow breaths because it hurt to inhale - and therefore wasn't getting enough oxygen. Although my Sats weren't too low.

Got to get my sick note later - thankfully my dad said he'd drive me - mum said I should also put in a request to see my medical records. Basically because I really want to look back over the last few years to try and work out when this all started - I have a few ideas, but it's important I know particularly because I need to show my manager that I've had it more than a year. If I don't, then I don't get any special allowances, which means I am basically screwed - there's just no way I can work FT.

Thank you - I could have cried when she said yes. I think she saw that I actually really struggle rather than just being super-lazy.

My occupational therapist said that until I'd been diagnosed for a year, I wouldn't be covered by the disability act. So, I still have no diagnosis & won't have til mid-December at the earliest. It pisses me off because I've been really unwell for 3 years but since it's not been investigated properly til now, it doesn't count for anything. I hope your medical notes help, fuzzpig. I have no idea how to gain access to mine. How're you feeling?

DIAGNOSED for a year?!? Shit, I really hope she's wrong.

Over the worst I think thanks, but trying to take it easy. Odd feeling of relief and guilt that I'm off until Wednesday next week.

DH saw his surgeon today, he's pleased with progress and says he can start looking for work, but nothing manual. Which rules out his previous job of retail management (unless he was in a big enough store to delegate everything physical). I have no clue what we are going to do as technically I still work FT so he has to fit around that. It's such an uncertain mess! The surgeon also said he needs to cut back on housework, DH has been doing the bare minimum as it is (still more than I'm doing) so how the heck we are going to manage if he gets a job I really don't know!

Yay!! Grockle!!

I haven't asked about my medical notes BTW (DH went to the surgery for me as I'm all shaky this afternoon) but my mum looked it up online, apparently you can ask to have a quick look during an appointment - this may be what I do as basically I just want to know all the times when I've been unwell and try and piece together the history - or you can put in a formal request under the data protection act which you have to pay for.

What I'm confused about is, will the specialist at st barts (where I've never been before) be able to see my records himself? Is that how it works as it's all online? Or are my notes only at my GP surgery?

Do you have an idea of when/how this started for you?

Fuzzpig were you there when the surgeon told your Dh to cut back on housework?

Hahaha I see what you're getting at there :o no I wasn't, but DH actually wants to do everything, he's a stubborn git and really just wants to look after me - the physio keeps telling him off for not listening to his wife when I tell him to rest

I refrained from using the face as I think a lot of men would try that one!

Good news about DH, fuzz.

I'm not sure when mine started. I've had some symptoms since being a teenager (troubled childhood). It really kicked in about 3 years ago when, in the space of 3 months, I:

Finalised my divorce
Got custody of DS (after 3 year battle)
Moved countries
Applied for & got new job (after being SAHM)
Bought car, got DS a nursery place
Found somewhere to live
Got shingles (perhaps due to stress from all if the above?) & 3 weeks later got seine flu

Do you all know when your problems started?

Aargh. Insomnia. Again.

Wow that's an awful lot to happen at once!

I am trying to work out when mine started, that's why I want to look over my notes, although I guess I'll never know for sure.

I know after having DD (2007) I was fine, I had PND but I was relatively fit and able to push the buggy on long walks, I'd always walk everywhere as the buses in that town were shit, I'd go swimming etc, so I'm sure I didn't have it then. We moved in 2008 and got married too, and it was all good.

I had DS in 2009, and I was kind of in shock after, I remember feeling stuck in my bed, it was a quicker birth but DS was nearly 12lbs so it was a big shock to my body I guess! I didn't feel right after, I found it really hard to pick him up, push the buggy etc but I put it down to the inevitable PND and the fact I had 2 DCs, but I do wonder if that is when it started. But then I was managing stuff like walking, a baby class and the gym sometimes.

I think the most likely candidate is that I got it late 2010 or early 2011. It was August 2010 when DH hurt his back which was obviously stressful, and I started looking for a job, which was really hard and draining. There was a massive issue with my references (evil ex-boss) which halted me starting the job, that was a really worrying time as by then DH knew he was being 'let go' by his employer. It was during this that I had the cardiac investigation so I'm sure I had CFS by then, and I did briefly consider it at the time but didn't follow it up as the pain/fatigue weren't so bad.

Around that time I'd also started getting tonsillitis frequently, and at some point I also thought I was pregnant, but it turned out I had a really bad UTI - must have been around a while as I felt really unwell (but not in an obvious I-have-a-UTI way), and it had even stopped my periods. I have read that a UTI-causing bacteria has been considered as one of the triggers for CFS. I want to find out exactly when this was as I think it's a likely candidate!

I also had some virus (or possibly chest infection as I get them at least twice a year) after which I remember feeling post viral but I've no idea when that was and I probably didn't see a doctor about it anyway.

I started work in July 2011 and I was very tired just doing 18 hours a week, of course I put it down to getting used to being at work, but it didn't get better, and on my 4 days off a week I didn't dare do anything because I had to save my energy for work. But even after 8 months of part time I didn't get used to it and I had a few days off sick here and there. In March 2012 I got a full time permanent contract which was awesome, I started in April and I think it was too much! It sounds lame but worrying about earning money and looking after the DCs and DH being injured put a lot of pressure on. It was in June I got the chest infection which didn't go away, I did try and work during it but got even worse, and that's when the GP started saying I had post viral fatigue, but I told him how I'd been feeling for ages before that and he said I must have had mild CFS for a while, but badly exacerbated by the chest infection.

So I just want to find out what started it in the first place. Unless the specialist confirms it for me I really don't think my manager/occupational health will believe it - particularly because when I was starting my job I failed to mention that I was ill (I didn't know I was! I just thought I was unfit) :(

Sorry for long boring post, it's been very helpful writing it all down!

fuzz you said u was never one to do alot. be on go all time.just read back your last post!!!!!!!!! . just double check about your records i think you need to put in writing to gain access.you certainley do where i work... im just rushing (well not rushing i dont have a rush in me any more) but ill write more later.......

fab news grockle!

Yes you're right I guess! I was trying to be all things to all people

Definitely worth checking records fuzz. You had a lot going on & an awful lot to manage. It's so frustrating that this type of thing is diagnosed do far down the line. The months/ years of feeling shite but 'nothing' ever causing it is a horrible feeling. I think knowing what triggered it would be very helpful.

Hope everyone is ok. I've had a strop again about people DP never helping me. I am sure the only time I will be guaranteed a rest is in my coffin. And even then, I suspect someone will knock on the lid wanting to know something.

DS is in a bad, bad way I feel so sad about what I've done to him.

Oh Grockle don't feel bad its not your fault you got ill x

The funny thing about reading everyones stories is that we all feel bad for 'what we have done' to our families, when I read others saying how bad they feel I always think, why its not your fault your ill but I still spend a good part of my day apologising to everyone for everything ie 'sorry I'm to tired to walk to the park' "sorry im so useless and your having to clean the house/cook tea/wash up again" "sorry your going to another party on your own again because if I go ill never be able to manage work this week". Its just endless sorry, sorry, sorry [sigh]

I'm exhausted, we've had DSC all week and I've done my best to stay up and active, but I've pushed myself to far and am stuck in bed to tired to even read a book, I've been up all night being sick, and have a fever which is my bodies way of saying enough and forcing me to stop, I hate being like this!

Hello :) mind if i join you ? copied and pasted from Chat.

Ive posted about this before under a different name. I will try to summarize.

I have the following symptoms :

-Always tired. I go to bed at 9 and i am up for work at 7. Sometimes i am ok other times i am shattered from this. Its not just tiredness. Today ive had a hard week at work been very busy on thurs but not so bad the rest of it. I now feel awful , my muscles ache, my head aches , i feel light headed and spaced out. Im having trouble focusing my eyes. This is typical of a " very bad day" for me. Ifelt tired on weds and went to bed early then had a very busy day on thurs and have been feeling like this ever since. No children btw.

• Really really thin. Always been told i am healthy regular periods etc. Eat lots , eat healthily etc.

• Rarely ill. Aside from depression which is currently well controlled with ADs. I am better than i have been in about 10 years. These symptoms have been present alongside the depression for years too. Dont seem to be related.

• Used to be a lot worse when i was working 12 hour shifts daily with no breaks. (i know this is not legal but i was desperate for money and i would have been dismissed if i didnt as i was agency staff.) Not so bad now i dont do this clearly !

I have seen a GP a while ago who did a blood test for anemia which i dont have and possibly thyroid but i cant be sure about thyroid testing being done as i dont remember. Symptoms were dismissed as depression. I was depressed i was working 12 hours a day and wasnt allowed to even sit down anyone would be. I was also understandably tired but im sure i shouldnt have been this tired. Im only 25 , this was when i was 22. Ive had blood tests at work (health check) which have proved me to be healthy in pretty much all respects , white blood cells , red blood cells etc.

I feel so bad today i can hardly move. Im not sure what to do really as tests came back normal. Even if it were say my thyroid im skinny and knackered not overweight and knackered which doesnt seem to fit.

Does anyone want to have a go at armchair diagnosis ? Or just sympathy from people who understand ?

hello :)
Have a read of the thread (it is long but worth it!) as you might find some more unusual symptoms that tally with yours - for me (I'm 25 too) there were lots of little things that I'd kept ignoring, but actually when I'd added them all up, made a very dark picture.

Your doctor should do lots more blood tests to rule out other causes - there are loads of illnesses that could cause things like fatigue. But it is standing out to me that you are now suffering from exertion a couple of days ago, if that makes sense. Rather than feeling knackered thursday night, and then feeling better by the next day. This is a big factor in CFS - you 'pay' for overdoing it much more than most people would.

Thank you fuzz.
That exactly it , I seem to be paying for weds/ thurs over Friday and today. I am no just tired I am shattered completely and utterly. Head aches can't focus my eyes , feel dizzy. It's just not normal is it ?
I don't want to see my gp they just see depression and write it off as me being a nutter. And I'm not Im highly qualified with a good job and I have a decent life most of the time.
I also hate anything medical and taking time off work etc etc and I am terrified if needles.

Oh :( the more you say the more I think yep ME (or CFS as we are now supposed to call it!)

Any chance of changing doctors? It is a total lottery unfortunately, some doctors just don't seem to believe it is a real illness. But at the very least they should run lots of tests to rule out things like arthritis, lupus, diabetes etc.