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Original poster

People with CFS/ PVFS/ ME - how did you get diagnosed?

994 replies

Grockle · 11/07/2012 22:27

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.

OP posts:
belleshell · 15/09/2012 20:32

sTRESSED!!! you sound just like me i HATE my ME, i hate the fact that my partners kids have been here today and have spent all afternoon in bed..... i could cry i feel like i exisit not live!!

LongGoneBeforeDaylight · 15/09/2012 23:17

Sure, I talked about it here -

I was ill for 4-5 years, totally bedbound one year.

fuzzpig · 16/09/2012 18:20

Had to spend another 2.5hrs in town today as dd had a party to go to, I was a bit more sensible today though. I decided to stay in the mall and not trek across the park to the other shops I wanted to go to because I knew it'd be too much, and only let myself try stuff on in one shop because it's so tiring. I think it also helped that there was nothing I had to do except have a rest at Shakeaway obviously so no pressure.

The book I'm reading seems to basically be about pacing and gradual increase in activity. I think that approach would work well for me but I'm not sure it fits in when you work as the nature of my job means I never know how much physical exertion I will have. And if I'm in work I have to do those tasks, I have no control over them. So some days I overdo it without meaning to.

LongGoneBeforeDaylight · 16/09/2012 21:28

Sorry my link is -

Original poster
Grockle · 17/09/2012 00:32

Omg, I hurt so much. I can't sleep.

On Thursday I had to swim with my class. We have a hydrotherapy type pool so it's really warm & I got out able to walk properly. It was fab but short- lived. I hobbled on Friday, struggled yesterday & today took DS to Go Ape for his birthday treat. I was so tired, I was dreading it & I was right to - I hurt so much now & no meds are helping. I have to work tomorrow but I can't walk ATM. It took me about 20mins to drag myself up the stairs on my hands & knees this evening & now i can't sleep for the pain in my limbs. I don't know if there's any point seeing GP tomorrow but I don't know what to do with myself.

Sorry for self-indulgent moan. Noone in RL seems to understand Sad

OP posts:
Original poster
Grockle · 17/09/2012 00:35

Fuzzpig - re over doing it... I never really know what I am able up do without repercussions. I don't understand how you figure it out. When I feel well, it's such a relief that I forget to be careful.

I feel like my life is falling apart now - I need to work but it's making me ill. I can't do what I want to with DS, and I'm a miserable, moany old woman.

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fuzzpig · 17/09/2012 07:10

Do go to the doctor grockle, he needs to see you like this and actually listen to you. Do you think he can sign you off sick for a bit?

I am getting more aware of what I can do, I think I've always been the overcautious, realist/pessimist type of person, so if anything I'm too careful. I'm scared my managers will think I'm lazy though so I tend to ignore my own 'danger signals' at work.

5 more work days until I am off for 3 weeks. 6 hour days now against my better judgement. Haven't even had a shower for days and no time to have one now.

Cupawoman · 17/09/2012 12:15

LongGone thank you for the link. I will watch it.

fuzzpig · 17/09/2012 13:10

Got my appointment at st barts today, in November.

belleshell · 17/09/2012 20:07

oh Grockle if i had a wand id wave it for us all. How was today, what did doctor say. I have t say i still dont know what i can and cant do but i have gone from just pushing the boundries to been frightened to do anything out of the ordinary!!! not that life as a mum, nurse, daughter, sister etc is anything ordinary like the rest of us...........what is normal?? How did you get on at the doctor. are you writeing a diary of how u feel when you are like this, it will really help when you DO get referred........and never feel bad abotu blowing off steam thats why we are here because your right know one in RL seems to understand!!!

Fuzz is that your ME/CFS appointment or the one they screwed up the other wek.

fuzzpig · 17/09/2012 22:14

It's an appt at the CFS clinic.

fuzzpig · 18/09/2012 07:49

Aaaaarrrrggggghhh it's getting colder now and that certainly seems to make everything worse Angry

On my way to work now but just want to hibernate.

Hope you are ok grockle, did you make it to the doctor yesterday?

Original poster
Grockle · 18/09/2012 19:34

I've not been to the doctor Blush. I've been at work but had to sit down all afternoon which isn't really possible most of the time. I feel pathetic going to the doctor as I look fine... although my legs hurt so much I thought they were going to give way today. I'm hobbling & waddling like an injured duck. I really don't know what to do. Mentally, I'm capable of work but I'm not physically able to keep up with the children, do everything I need to do (as it requires a lot of walking & moving) and now I'm getting behind & overwhelmed with my paperwork as I need to go to bed at 7.30 every night.

I'm glad you have your appointment, Fuzz. How're you Belle? And everyone else?

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fuzzpig · 19/09/2012 15:16

Please please go to the doctor grockle you need every 'incident' logged.

Having a shit day today. Got called up for making a couple of mistakes, really tiny mistakes, but I went and hid and cried after because I am stupidly tired and emotional :(

fuzzpig · 19/09/2012 16:24

I think the brain fog is bothering me even more than the pain at the moment.

belleshell · 19/09/2012 19:38

well if im been honest im ok but i havent had a poo for nearly a week!!! Blush which is nothing new but i am so bloated, sluggish tired few up pissed of oh and in pain. but even worse than the poo thing its my daughters birthday at the weekend and we are going camping ( she wanted to) i am dreading it really really dreading it, my partner and i will have 5 kids with us............in reality i want to hibernate, al weekend.....

Grockle, please go to GP, fuzz is right it needs documenting........

Fuzz hope the fog lifts slightly..............

everyone else hope you are surviving.........

xxxxxxxxxx

Original poster
Grockle · 19/09/2012 20:23

Argh. I saw nice GP who was very lovely but said he cannot do anything since I have my rheumatology appointment in 2 weeks and I've been on every medication that he would suggest (amitripyline, duloxetine, an assortment of other anti-depressants, diclofenac, co-codamol, solpadol) He said he could sign me off if I want but then I'd feel depressed and guilty so it's best to carry on. I feel like crying but everything hurts too much.

Belle - it is my DS's birthday this weekend too. Thankfully, he did not suggest camping (although he loves it). I hope you have a lovely time (and have a poo before you go Grin)

Fuzz, I've been called up on a tiny error this week & it pissed me off. I'm hobbling, can barely walk & the person who told me off hasn't acknowledged that I'm doing my level best but chose to tell me off. Grr.

I need a break but I have to make 2 birthday cakes for DS tomorrow night after work. Not sure how I'll manage that because I crawl up to bed at 7.30. Then my mum is coming (lovely but busy), then it's DS's birthday & family dinner, then his party on Sunday, then my Dad is coming to stay. The thought of it all is making me cry.

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magso · 19/09/2012 22:08

Oh grackle that is too much for you. I feel for you - the dread of all that hard work.
Can you send dh out to buy some lovely birthday cakes? I know you want to do it yourself but perhaps personalise with candles.
I struggled at work last week and felt a failure . Collegue who knew me before Cfs noted i was struggling to talk( actually it was the brainfog) and insisted i have a lunch break hard to come by as we were shortstaffed. I also work in a hospital which can be helpful. I have a couple of weeks off as recovering from sinus op.have a night to myself in ward before back home.

Original poster
Grockle · 19/09/2012 22:41

Oh, hope op is ok. A couple of weeks off sounds good. I'm glad you have supportive colleagues. I'm going to talk to my work tomorrow about trying to make things easier for myself... I don't actually think it's possible but surely me being there half the time is better than none of the time? I dunno

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fuzzpig · 20/09/2012 06:58

Well, employers have a duty to make 'reasonable adjustments' if you have a disability, but the difficult part is getting them to recognise that it is a disability as there's rules to follow (I've been told even if I get a dx I may not qualify yet as there's no proof I've had it for over a year). Employers can do that sort of thing informally too though. Did you have anything particular in mind?

I feel like crap today, bad tummy again, have to go in anyway as I have the safe key. We are short staffed too. Felt so weird last night, fluey and cold but also like I was drunk? Room spinning, felt like I 'wasn't there' IYSWIM, it was very disconcerting. DH reckons it's the amitriptyline but I've been on that a week already without having any effects that bad.

Hope you recover quickly magso Thanks

fuzzpig · 20/09/2012 07:05

Also grockle I can't remember if you've spoken to occ health at all? There should be procedures in place where you trigger a referral to them if you reach a certain amount or length of absence, and then there are a few steps involved. If you haven't had this yet, it's worth talking to your manager about it, as knowing what would happen (if you had more time off) might ease your worries a bit. There should be a clear structure. For me I know that I have my phased return but if it 'fails' ie if I'm not ready for FT work when I am supposed to be, I get re-referred, and there are options like redeployment, permanent reduced hours or the 'reasonable adjustment' thing. It's scary, but a lot less scary than thinking "if I'm off any more I'll get fired".

Original poster
Grockle · 20/09/2012 07:46

No, I don't know what adjustments I'd like to make. Ideally, I'd sit in a an office & do paperwork but since there are children that need teaching, I kind of have to do that too! If I'm off, it just makes more work for me. I will see what they say - at least they are aware that this has been going on for some time (they've called an ambulance for me in the past) & they've seen me hobble a lot. I've not spoken to occupational health but I'll ask about that today - work have made such a fuss about absence that I feel like I'll get fired, but I know it doesn't really mean that. It's had to do anything without a definite diagnosis.

Feeling drained this morning.

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fuzzpig · 20/09/2012 13:13

I guess as a teacher you work for the council, so there should be a set structure in place aimed at keeping you in work (even if a different job) and they can't just get rid of you. I hope your chat goes well x

Original poster
Grockle · 20/09/2012 17:12

I chickened out of the chat today because I felt so tired & grumpy. Knackered but have managed to make a cake whilst I made DS's dinner, so hopefully I can go to bed by about 8. Hope everyone else is ok. Will read the link in a bit Smile

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