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.

[fuzzpig]

:( no apologies needed here grockle. This is a lovely supportive thread you've started!

Have to agree I've had the same thought. Although it was scary, my first thought when a GP said I may have pneumonia was "good, I may get to go to hospital".

[belleshell]

omg i cant believe you all feel like this too.. its so good (for me! ) to hear others go throu what i do each day, i really think at times i am losing the plot....
((((((((((((((big hugs all)))))))))))))))))

[Grockle]

Oh . I'm glad I'm not the only one who feels like this. I'm not really suicidal, just desperate for a break, to not be in pain and to feel well, even if only for a day. I spent so much time earlier this year wondering what I could do to achieve that. It was not a good time. I'm coping better now but wish I had some support from a dr. Feeling like this is all in my head, doesn't help. I'm meant to be going away this week to do some walking. I think I may have to let DP & the dog go whilst I sit in the pub!

[fuzzpig]

Looks like a supportive doctor would make a world of difference. Can I ask - does your surgery have any Physicians Assistants? They are a sort-of doctor, they seem to be getting more popular as they do shorter training and earn less, but can do most basic doctor stuff (the main difference I have experienced is that they can't actually sign the prescriptions they wrote!).

I just ask because in my experience - and as we don't have assigned doctors here I have seen many different doctors/PAs - all the PAs have been fantastic, really thorough, compassionate, empathetic. Compared to the 'proper' doctors, of whom all but a couple have been the exact opposite. Maybe it's just coincidence, or maybe it's more to do with different training or reasons for getting into the field or something.

[fuzzpig]

OK one more thing (reeeeally starting to feel like a hypochondriac now!) - shooting pains in wrists. They are only occasional, not every day, but when I get them I am briefly unable to do anything else as it really fecking hurts. Then it goes away and I forget all about it until next time. Relevant or not?

[magso]

Another here who felt relief at being forced to stay in hospital. It has been really hard to accept that I am ill and even harder to not feel guilty at resting(pacing).

[belleshell]

Magso i am so with you at feeling guilty for resting!! i feel if i have made the effort to get up and out of bed then i have the effort to do things, yesterday i hoovered throu! then took dog for a walk with DP. My whole day of resting was cancelled out by these few chores!!!! gggrrrrrr. I have also had to tell my kids that next week (they have been at their dads this week) not to expect much as i am tired! ( if only i was just tired!!) its heart wrenching........

[fuzzpig]

YY to the guilt, I have been feeling that especially as DH can't do active stuff with them due to his injuries. I keep planning to do all this stuff with them but when it comes down to it I just can't as I'm tired [understatement emoticon]. My mental health is wobbly at best and the guilt of feeling like a crap mum certainly has not helped. Now that I'm realising that the symptoms may actually be part of something 'real' (as opposed to me just being unfit or being tired from work) I am starting to feel a bit less bad. I think if I knew exactly what was wrong it would help me a lot. Given other people's stories though I am really worried about how long this process of elimination will take. Really worried.

I managed quite a lot yesterday. Went into town (was only actually there 20 minutes visiting 2 shops for specific things - toddler boxer shorts and toy Daleks!), stood/sat outside the house while DCs ran round. Cooked both (easy) meals. Sorted out a load of clothes which involved trying stuff on. Apart from very achy arms (I find it really hard to put my arms over my head even when I'm 'well') I actually don't feel too bad today. DH even commented that I look better. Maybe it's a sign things are improving but I am scared of pushing myself too far.

[fuzzpig]

Crap. Spoke too soon. My crime? Sitting upright for the afternoon instead of lying down, chatting to my parents. Totally wiped :( had to lie down on our tiny landing after a trip upstairs to the bathroom. So embarrassing.

One more thing (sorry ) the doctor said the viral myalgia I was showing was the worst he'd ever seen - he actually got another doctor in to repeat some tests as he was concerned it might be meningitis. It wasnt obviously, and I was a bit by it, but does what he said mean that maybe it is in fact something more long term than post viral aches?! Or at least maybe he's more likely to listen to me as he can see it is bad.

[belleshell]

hi fuzzpig, sorry your feeling crap again today, ive had a busy one, done 3 hour round trip to pick kids up, (i wasnt driving today thank god, i slept most of way there!) come home my partners 2 kids are also here which is no problem cos they all get along, and now i am panicking how im gonna be rest of week.... as for the GP, i still believe that this is an acute episode of a chronic problem ie, the underlying symptoms have been made alot worse due to your chest infection. I know you are worried about the time it as taken for others to be diagnosised but i do think things have come on in the last few years especially since NICE have guidelines on the diagnosis and options for management. (not treatment because there isnt a treatment as such only management of the many symptoms!) so please dont worry about this. if it was anything sinister there would have been something on one of the tests to show or indicate a problem... and as for sleeping on the landing, i perched on a flower stand today!!! KEEP UR CHIN UP . X

[belleshell]

NOT SURE if you have seen this
www.nice.org.uk/cg053

[fuzzpig]

Thanks belle - looks a bit wordy for me () but I'll give it a proper look later.

[belleshell]

the short and long of it all is no one understands ME/CFS but it more of a recognised condition that they have to manage better and they have set criteria for diagnosis!!!

xx

[fuzzpig]

Before I get even more confused - are CFS and ME two names for exactly the same condition or is there a difference between them?

[fuzzpig]

Oh hang on. Never mind. It's explained on the first page of that link.

[fuzzpig]

In case grockle or anyone else needs it this is the list of what blood tests should be done according to the NICE guidelines

urinalysis for protein, blood and glucose
full blood count
urea and electrolytes
liver function
thyroid function
erythrocyte sedimentation rate or plasma viscosity
C-reactive protein
random blood glucose
serum creatinine
screening blood tests for gluten sensitivity
serum calcium
creatine kinase
assessment of serum ferritin levels (children and young people only).

[fuzzpig]

Read quite a bit of it now and it's finally made me tired enough to try and sleep (on sofa with big bang theory on - cant face bed tonight)

Surprised the guidelines mentioned graded exercise therapy though as other things I've read suggest it is not helpful. I googled a bit about deconditioning the other day and couldn't see much about it as a cause/factor in ME (I guess I was searching because I am so paranoid about just being told I don't do enough). I don't know, it's a few years old now so maybe it'll change at the next review.

I'm worried though as it seemingly frequently implied that too much rest is bad, so now I'm really confused. I am so scared of not being better in time for my return to work (I have 2 more weeks) that instinct is telling me to do as little as possible to allow myself to get better properly instead of rushing it. Then I feel like I need to do some stuff because otherwise I will be useless when I go back to work due to so much inactivity (5 weeks off!). Have to say, most of the time instinct is winning. Is this wrong? Should I be doing more?

[belleshell]

NO instinct isnt wrong, and these guidelines are for long term managemement, again you have had a an acute epsiode of chronic symptoms it seems. i do have to admit i struggle with the whole resting theory, to anyone that gets referred to a ME/CFS clinic this is what the whole emphasis is on, learning to pace ( which i am crap at i am all boom and bust! but then at times i hate been like this i do it to try prove i havent got it and again i end up in bed!) until you are told any different i suggest you rest, but what i would say is try get into a routine, ie get up and get dressed, then rest have some lunch then rest. have some tea then rest, perhaps a nice bath before bed.....etc what you do in the rest times will obviously vary ( AFTER ALL A WOMENS(OR MANS) WORK IS NEVER DONE )so it may be that you do a short shop, make tea, a little bit of house work etc......

Im worried i am confusing you further! i aa sorry to anyone i have confussed i just feel your desperation of knowing what the hell is going on with your body and how the hell to manage it....sorry again

[fuzzpig]

Don't apologise belle your posts have been really lovely and helpful x

[Groovee]

My GP suspected ME but further investigations was Fibromyalgia. It answered a lot of questions from way back to my teens.

If you go to patient.co.uk and look up CFS and fibromyalgia and read up on them both. You can print out the leaflets and highlight all your symptoms and then see a sympathetic GP, you may get further with investigations.

There are some fab support groups on Facebook too.

[topsi]

Just wondered if anyone has googled Dr Myhill (?one l or two). She is a private dr and has loads of advice on her web site. You can even down load her book for free?

[fuzzpig]

Have looked at that patient.co.uk site. Still not entirely clear on the differences between CFS and FM although from the bits I read I think CFS seems more like me (eg when I googled I saw that joint pain is not part of FM but my knees and elbows kill). Though it also said you can have both.

I want hypothyroid/lupus ruled out first though. Damn I'm going to sound like a total attention seeker asking the doctor all this aren't I :( if I even get the guts to say it at all.

I still keep feeling like it's my fault I am ill. Although it is drastically different now so I do know I am unwell, I was unfit and overweight before, maybe it's my fault and I deserve it.