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.

belleshell I do the same with my charges, they are pretty well behaved but I can't tolerate noise or bickering like I used to so find myself snapping at them, then feeling really guilty, they are 4 and 7 and thankfully are both at school full time now so I can sleep during the day. I've been with them for over 3yrs so they have noticed the change but have been so sweet in helping me get through the day, the eldest especially she has picked up on how forgetful I am and reminds me of everything, she also prompts me when I forget words, it makes me feel terrible because she's just a child, my step-children do the same at home.

I'm dreading half term I really dont know how ill cope with having them home all day.

I'm not on FB but would be happy to cheer someone up and offer support by writing letters or cardsas well I think its a lovely idea

i never get anything nice through the post what a lovely idea............ and im up for FB....FB is my lifeline to the outside world

Well, why don't we do a small gift and or card chain? that way, everyone gets something, but it doesn't cost any one person too much money :) just us on this thread?

Yay, fab idea Solo!

I'm in!

Count me in too

me too..see something good as come of this......new friends

Grrr feel like shit tonight, pain not so bad (still awful just not at its worst IYSWIM) just totally exhausted. We managed to make it into town for a meal while the DCs were at school which was lovely but we are both suffering now! Bumped into my manager and another colleague and managed to make a total twat of myself because my memory is so fuzzy, and now I am panicking because by seeing me out and about they might think I am physically well and I am NOT! I am really worried about next week. I'm not ready :( I am on annual leave so it's not an issue of being out while on sick leave - it is just that I will still need people to remember I am not at my best. Expectations are very high at work and you get called up on every mistake, I'm scared I will make loads.

That plus the ever increasing laundry and dirty dishes is getting me down. If I were rich I would just chuck it all out and get new stuff

This sucks.

fuzz and others are you on FB?

I got up at 11.30 today YYaaaayyyyyy, went food shopping cos we are like mother hubbard!!! met a friend at supermarket for a cuppa ( 2 birds one stone!!!) she is my best friend i tell her everything but i feel she thinks its all in my head!!

i now cant move!!! so all day sleeping might not be the answer but it helps with pan it seems..........

Fuzz it is so good to hear you and Hubby make time for each other!!! it doesnt even have to be that you go out its just nice you make the effort.....My ME was the final nail in my marriage coffin!

I often don't get up till lunchtime belle and although I still end up sore and exhausted at least its a morning when I'm not getting frustrated with myself!

Its hard to believe that I used to run twice a week, swim once a week, walk the dog twice a day, look after the horses and work full time, now I can just about brush my teeth without needing a nap.

I think I've just split up with DP I'm pissed off that he said I'm pathetic, more pissed off that he didn't come over yesterday (I did tell him not to ) & now won't see me til Sunday, so I told him not to bother coming back

I don't really know what happened. By Sunday, I'll have been on my own for 6 days, with no help. And I'm back at work on Monday. I really don't feel ready but I need to go back or I'm going to run out of sick pay and lose my job.

I feel like this fibro/ ME thing has ruined my life. I know I'm being dramatic but I'm a different person. Crippled much of the time, miserable, emotional. I can't look after myself, my 7 year old has made plans for when I die, my career is not looking good, I won't be able to afford my mortgage, DP thinks I'm pathetic... how did this all happen? I'm a healthy, relatively young woman. This was not meant to happen.

Sorry for the selfish rant. Again.

Grockle! STOP!!
I know from experience that if you continue with this stress and worry, you are going to grind to a complete stop! you need to prioritise, you need to manage yourself, your illness. Now I know that this is easier said than done, but you must try!
If your man can't be supportive, then maybe it's better that he does go, because at least then, you are not on tenterhooks worrying about him and what he thinks and says to you. HE cannot possibly understand what you are going through, though he could try to see the world from your particular angle...IME, most people that have never been in this hell that is ME, cannot begin to imagine what this is like. It is not possible. All they can see if someone that looks ok? they may look a bit tired, but we all get tired don't we?! if you try to explain that this is more than 'just being tired' they'll glaze over, because it is unfathomable to them, impossible to comprehend.
Before when I was trying to work whilst ill, I'd pass by my colleagues who'd say 'hi! how are you?!' to which I'd reply 'yeah, y'know!' in a less than cheerful way. The thing is, they didn't want to hear how I was/am, they didn't want to hear how crap I felt or how exhausted I was, but I couldn't put on the pretend you are great show for them, so I'd say 'yeah, y'know' and keep walking. Apparently I was 'a miserable bitch' but because I struggled on, they couldn't see/didn't care/weren't interested in how I really was. That goes for most people and sadly, I think we have to accept it or it'll drive us crazy. Are you registered at work as having a health issue? if you are, then I think that I'm right in saying that they have to make allowances for that illness. Yes you may eventually run out of sick pay (I did), but I believe that they cannot sack you if you are ill and off sick with that unless they find you medically incompetent and I think that's quite hard a process for them to do. Please don't quote me on it though, because I know squat really.
Tired now...will come back tomorrow. Just try to stop worrying about it all because some things you can't change and sadly, peoples attitudes are one of those things.

Oh Grockle this horrible illness takes its toll on us and our families but panicking about what might happen isn't going to help its just going to stress you out more and make you feel worse, believe me I understand and so does everyone on this thread.

My DP has gone to work in a huff because I told him I had found this thread and was so happy to find people who understand how I feel, he's reply was he knows how I feel and does all he can to help me. Yes he does but he can't possibly understand because he has the energy to do what he wants when he wants and can remember his date of birth without thinking about it for a whole minute . I realised that it isn't just me going through it, he and my family have lost the person I was too and we are all finding ways to cope with that, I think I'm so tired and using what little energy I have to get through the day that sometimes ok all the time I'm maybe not the most understanding, patient or rational person to be around.

You aren't being selfish your ill, tired and frustrated and he should be supporting you NOT calling you pathetic, I know its not very mumsnetty but have a [hug] from me

Grockle.......... ring your occupational health department at work,you need to go see them, you cant work like this !!!! hopefully OH will help and devise a gradual phased return to work, in my last job i started back at 6 hours a week, it was enough to begin i eventually got upto 24 hours..if OH advise it your bosses will listen, they have to, plus they will list you as having disablilities and will have to take that into account......... this way its coming from them and not you...and is one less thing to worry about..... if DP doesnt come on sunday then maybe you are better off without him, however if ihe does come maybe you need to sit him down and tell him everything.he wont get it but he cant say then he knows when he doesnt.

im a nagy bitch apparently and have been all week according to my DP and DD. he aint seen nothing yet this morning i have woke up thinking i am a mug......i will do things if no one else does, so i am stubborn.like i took the dog out last night in the pouring rain.i took her to end of road and back, ( i couldnt go much further) DP was sat in his tracki bottoms with a beer in hand!!! when i said this morning you all just sit back and wait for me to do it..........

my issues are, my marriage eventaully failed because of ME (and many many other things) i darent show my weaknesses, and certainly wont let those weaknesses creep in, hence i cant accept ME. DP is not yet divorced ( he has been separated 2 years) he pays for his ex mortgage, and house keeping towards me , but its not half of the bills... guess my issue is the commitment thing.to top it all my ex and GF are claiming every benefit they can, because she is down as not living there, all along i am struggling to work.cant get any benefits whether i work or not and today i have had enough.......I am a mug amoungst other things .well thats how i feel

God sorry Grockle i have completely took over........ Grockle you cant go to work, or certainly cant work the hours and in the way u was, not at the moment...

have you sent off for your DLA application. xxxxxx

Grockle I'm so sorry :( I have to agree with the others though - maybe it is for the best. Partners shouldn't make you feel worse about yourself. Maybe he will turn his attitude around after this but if he won't then you are better off without him dragging you down.

DH off for a scan today as it is thought he might have a hernia, in which case he'll need another operation, or it might just be dodgy knotted muscles due to his previous injury.

I am spending the morning doing nothing except feeling guilty about all the stuff that needs doing. I've been off work for 3 weeks and don't have any clean work clothes yet! :( I am fast approaching the conclusion that I won't be able to do FT either. But I can't make any real decision until the end of next month when I've seen the specialist.

I have an appointment with a mental health service today, looks really helpful but it's half a mile from the bus stop and I don't know if I can make it. Half a mile FFS. A couple of years ago I enjoyed walks, walking alone was one of my favourite things, now I dread more than a few steps. I also have to phone the OU which I've been putting off again.

BTW, more than happy to set up an FB group if anyone wants me to, pm me your names then I can add you?

Oh dear. I'm much calmer today so I'll see what happens. I think I'm struggling so much at the moment that I get a bit hysterical & go crazy when I'm upset. I've always been a bit stroppy but I've never had mood swings & such intense reactions as I am now. I don't know if it's related to the Fibro or if I've just gone a bit psycho

Thank you all for being so supportive & understanding. I'm so so grateful that you are here and listen without judging.

I have the day by myself - I've ordered a DLA claim pack & have done a few bits of paperwork, including my occupational health referral, so am feeling productive, despite snuggling on the sofa under a pile of blankets.

Solo, everyone at work calls me Stroppy, apparently. I do my best to go in & do my job but because I am in so much pain & struggle to do my job, it's often hard to smile. Oh well.

I am the same as you Belle - I do things because no-one else has done them

Good luck with the appointments and phone calls, fuzz.

haven't phoned OU yet

FB group is set up though yay!

just waiting for DH to get back from scan (turns out his hernia is small but he also has an inflamed lymph node because of it, this may explain the pain - will find out what is happening in november) so I can attempt to get to this appointment. I need it, even if the walk there is hard.

oh and well done grockle for getting your paperwork done! most impressed! xx

Go to the website AYME. It's for young people (up to 25, but they will be able to help even if you're older, in fact they have a section for older people) they have loads and loads of info, including a chart which can indicate what level you are, which consultants can help and self help ideas.

AYME have the most helpful staff in the world - I promise.

I'm thinking of you, my daughter has ME. xx

I have every sympathy with you Grockle. I had glandular fever and hashimoto's syndrome (defund thyroid gland) shortly after having my daughter (6 weeks-ish) and as you can imagine I felt pretty rough. I kept going back to see my GP who had misdiagnosed me as having an over active thyroid instead of actually being a position where I had no thyroxine at all, and therefore very little in the way of an immune system. She kept saying 'it's the glandular fever, you'd feel even worse if you didn't have an over active thryoid' and didn't bother to test me again which if she had done, would have resulted in me getting thyroxine tablets. This continued for about 5 months so I got very ill indeed. When I finally got to see an endochronologist who prescribed me the thyroxine, he said I should feel right as rain again as soon as the dose was right, but I just never got better.
I have been on the correct dose of thyroxine now for 5 years, and thankfully I do feel nearly normal now. However, for most of that time I had to struggle against people saying there was 'nothing wrong with me' which was ridiculous and insulting because I was a shadow of normal self. I did get a GP to diagnose me with CFS but he wasn't very helpful about it, just told me to 'lower my expectations of life' which I refuse to do!!

My advice to you is get dietary advice, you may well be suffering for a lack of something obscure, or even an intolerance of something that is creating your symptoms so it might be totally manageable. But if you do just have some mystery ailment that is making you feel rubbish and unnaturally tired, get emotional support from those who understand you are not likely to be making it up (I believe you!), ignore those who think you are making it up (I'd like to see how they coped with it!!) and rest as much as you possibly can. I know it is extremely annoying to not be able to do what you want, or even a little bit of what you want, but the only way to get better if it is CFS (in my experience / opinion) is to rest when you need to, however much that is.

Silver lining - I am nearly better now and I have a real appreciation of those who have stood by me and it has helped me to get perspective on all aspects of my life. But I just had to reply because I have been where you are now and it is gruesome. Take heart - you'll be where I am now soon. Xx

Just read some more of this thread and have to add about the emotional drain you are clearly under.... I think you are being amazingly strong coping with this all on your own (if he has gone for good - cant believe he called you pathetic - exactly what you don't need to hear and soooo wrong!). The physical strain on CFS and similar is horrible, but I think it is the emotional stress that is worse. I have lost friends over this too because people chose to believe that for some reason you aren't as ill as you say you are which is totally bonkers in my opinion! Why on earth would you make it up? Hang in there and only listen to supportive people. You don't have the energy to spend on anyone who isn't nice to you and please, please don't worry about what these people think of you. Everyone who knows how this feels thinks you are doing amazingly.

hi all, so whilst laying in bed again wasting yet another day ill never get back ive been thinking.!!!!!!!! dangerous i know, but i think that when im like this i gg to bed (rather than sit downstairs) For 2 reasons........if anyone calls and im in bed they believe im ill, and 2ndly i just cant face the day like this, if im in bed then the day just goes by!!! how chuffin sad is that..they say life begins at 40........bring on next year is all i can say

Hi Belle I'm having a rough day too, have worked 3 days this week, had bloods taken this morning and managed to pop into town to pick up my new glasses because in the past year along with everything else my eye sight has become terrible, I've spent the past 3hrs asleep on the sofa and have woken up feeling sick and unable to get up without my DP's help, I feel completely spaced out.

I'm 29 ffs, I feel like crying but don't have the energy, why me what did I do wrong