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.

My Rheumy increased my amitryptiline from 20mg to 75, and it was horrendous, i hadthe msot awful nightmares, what with the ngihtmares from them and the hallucinations from the tramadol i was in a right old state

I actually feel very calm jsut now - too calm in fact, i am wondering if my combination fo drugs has me teetering on the edge of an abyss and one wrong move and whoops, dow I'll go.
I currently take
citalopram and 3 lots of HB meds, co codamol 30/500 and naproxena nd gabapentin every morning.
Then co-codamol or paracetamol and gabapentin during the day then gabapentin, co-codamol and naproxen at night along with the ami

I ahve been in teh midst of a really bad flare up for a while now and it's all going tits up everywhere at home,a nd yet I still feel like I am floating along observing it all from a distance!

Fuzz there is (was) lots of talk of graded exercise and they did a gentle test of movement/ability to walk etc...desperately trying to remember .

I was prescribed Sertraline for some of my symptoms (numb and tingling arms and hands mainly) and the raised the dose again and again. It seemed to help at first and then it seemed to stop helping so I took myself off them and I crashed so badly. I hadn't been depressed before or when I was taking them, but when I went cold turkey I became depressed. I didn't give it a thought tbh, as I hadn't been prescribed them for depression, I didn't know that would happen to me :( was a bad time all round.

Oh, scary Solo. Sounds awful

What a cocktail, Saltire. The combination of ami & tramadol sounds like a bad one for you. I keep waking up but no terrifying dreams so far.

My GP told me to stop taking the amitriptyline this morning. He said to go cold turkey but my psych said I should be on it for a minimum of 5 years (only started in the summer)... I'm not sure what I'm meant to do

I have had a massive row with DP, who joking accused me of being pathetic (he turned the light off as I was walking up the stairs so I couldn't see where I was going so made weird squeaky noises as I felt my way up the stairs - I don't know why I did that tbh!) Anyway, it turned into a big thing with me sobbing because I've been pushing myself so hard and feel shit yet he still thinks I am pathetic. I overreacted but it was the worst thing he could have said - he knows how sesitive & concerned I am about appearing pathetic and useless.

Oh grockle he shouldn't have said that :( not even as a joke. Hope you give him a good verbal thrashing for it when you feel a bit stronger.

What else did the GP say? It's quite unusual that he actually requested to see you. I do think it's a bit odd that a psychiatrist would tell you to stay on a pill for such a long time, when it's well understood that different people need different types and you don't even really know if the ami is working yet!

I'm very proud to have managed an hour of tidying (sitting down) - we got rid of 2 bin bags worth - and stopped before I got too sore. Still very tired though. It's so frustrating - I have always had hoarding tendencies and I have finally overcome much of it - it's like something flipped in my head and I am finally ready to get rid of a lot of stuff. But I'm too tired to act on it! I'm desperate to declutter by Xmas, especially now DH has had his op and we might be able to enjoy it properly, but I have to go ridiculously slowly.

GP didn't say much, just that it does look like a bad episode of Fibromyalgia.

I think I was so upset by DP because I do feel pathetic & am sure everyone else thinks I am lazy and doesn't understand. So for him, the one person who I should be able to rely on for support, to confirm my worries was horrible. I did give him a bollocking telling off & then he cried too. He's away tonight so at least I have time to cool down. I'm just pissed off that I've supported him emotionally & financially for over 12 months and when I need him, he laughs at me. And I have to continue pushing myself & making myself ill. Grrr. Life is complicated. I feel better having ranted on here! Sorry

Don't do too much. I love tidying & have worked out how to do short bursts of it to make it effective & satisfying. Please don't overdo it and make yourself poorly.

So does that mean you have a dx of fibromyalgia then? Or did you already have that as a dx

And yes I agree I can't overdo it. I am just disappointed as I wanted to get lots done while I was off work. It's hard enough keeping up with regular housework though isn't it, let alone extra

No, I didn't have a dx. I'm not sure - GP wants me to see the rheumatologist to see what they think before anyone commits to a diagnosis. But I've had Fibro on my last 3 sick notes

It's so frustrating when you can't do everything you want to do, isn't it?

I suppose because myalgia just means 'muscle pain' so really just describes a symptom (I had 'viral myalgia' on my sick note). Although fibromyalgia is a specific condition as it refers to a particular type of tissue I believe, and I thought you needed specific 'tender points' for a dx of it. But then there are other people who believe FM and CFS are all the same illness anyway... I hate that it is so confusing! I hope the rheumatologist is helpful.

You're probably right fuzzpig.

I'm sorry, I really need to vent. I'm feeling really overwhelmed today. I'm so upset - I think it's just hit me how my life has changed recently & that I need to make some fairly big adjustments but it's scary and I don't know what I'm meant to do.

I'm finding everything so hard. My brain won't work. I wouldn't say I'm depressed but I'm having lots of moments where I really feel like I wish I weren't here. I'm not suicidal, I just wish things were very different. I'm no use to my lovely DS, I can't play with him, take him to the park as often as he would like, take him places. I can't take him to school or pick him up. I can't go to work - I should go back next week but I don't see how I can.

I've sobbed all morning, since dropping DS off at school. DP won't be back til Sunday so I have to manage at home for 5 days. I just don't know what to do.

How did I turn into this pathetic weepy mess? How do I continue to pay bills without a job? WTF do I do? How do I get a grip, get back to work and stop crying?

I'm so very hurt by DP saying I'm pathetic. I think I'm upset because, alhough he was joking, it's true. I wanted him to understand but how can he?

I feel really sad and alone. So very alone.

I just want a big hug & for someone to tell me it'll be ok. I don't want my world to crumble.

(((((grockle))))) I know it's not as good as a real hug but have a big squish from me. I wish I could do more but all I can do is empathise. Xx

Oh Grockle. I am so sorry you are upset. ((hug from me)) too.
You are NOT pathetic! The illness is nasty ( i could think of a host of other words but this is an open forum...)! I too have been very hurt by comments - it sort of plays into my own worst fears IYSWIM. It feels like betrayal added to the bodily betrayal. Trouble is illness ( ME or any other) affects our nearest and dearest however much we try to protect them. I think too the reality takes longer for others to adapt (perhaps because we try to carry on regardless).

By the way I struggle in the dark too -my balance is dodgy, so suddenly being plunged into darkness on the stairs would thow me - possibly literally. Dh made an irritated remark (what now!) after I accidently knocked my wound ( from recent surgery) and suppressed a cry. I suppose DH is (nearly) as fed up with my ill health as I am!

oh GROCKLE! is your DP like mine...my DP lives with me but finicially doesnt contribute, its my house etc.he does pay bored but is still paying for a mortgage on his old house where his ex wife and children live. he was made redundant 2 years ago, and had to take a lower paid job. i often tell him i worry about not been able to work, but in reality he cant afford to keep 2 houses going..........

is your contract a permenant one....maybe under the disability act the would redeploy you to something less demanding for a short period. my job is a temp contract, after 2 years i have to prove to the NHS that the pilot service i am developing is worth the money!!!! not easy when the NHS is slashing jobs....... that is what hangs over my head day in day out.. you cant go to work next week can you...what do you do when DS is in school. im off too atm and i literally take DD to school com home and climb back into bed and set alarm to get me up in time to go get her... as much as i am still exhausted, im trying to tell myself that if i dont do anything then i cant be blamed for not improving...the thing atm is everyone is telling me i need to get my head around this and sort myself out.............

Have you got the DLA application form...maybe we could help fill it out on here with you,

finally mothers guilt is the worst thing ever.....have you tried to explain the spoon theory to DS. my DD got it she is 11 and when im having a really shit day i tell her i have no spoons let...it just somethinng i can fall back on to make her see...

ps sorry for spelling mistakes..

Yes that's pretty much what I'm doing ATM belle - in fact I'm only doing one school run (1 mile round trip, though it is hilly) - now DH is thankfully more mobile, he's getting up with the DCs and taking them to school while I sleep in. But usually I do nothing all day and then drag my sorry arse out the door at ten to three... Took half an hour to get home and I collapsed on the sofa - I haven't moved since.

Mine are too young to understand the spoon theory (5 and 3) but are no strangers to their parents being unable to do stuff. Youngest had just turned 1 when DH got his prolapsed disc so he doesn't know any different. They miss out on so much.

Thank you for the hugs.

Belle - DP doesn't officially live with us, but is here about 60% of the time. He doesn't work atm so doesn't contibute anything. I get pissed off because he wastes money on sweets etc but doesn't contribute to the bills - he says it's only £20 etc & I remind him that £2 every week adds up & would help. Anyway, that's by the by

My contract is a permanent one so I am lucky. I don't know if I can be redeployed. I'm glad I don't have the worry you do. That won't help anything.

When I'm home and DS is in school, I rest. I lie on the sofa or in bed with the electric blanket and snooze/ crochet. DP takes me out to the shops etc so I can get out but I'm too scared to drive and can't walk far so don't go out on my own.

I don't have a DLA form - DP was meant to pick one up today but I bet he didn't.

I keep forgetting to explain spoon theory to DS. That's a job for the morning. He sat at the dinner table & cried & said he doesn't want me to be poorly & when he thinks about me when he's at school, he feels sad

Oh bless him your poor DS :(

Oh with the DLA form you can get one sent to you if you phone up (and if it's awarded it'll be backdated to the date of the phonecall)

I was planning to wait until dx, but apparently it's not really that necessary and you can put in that you will be seeing a specialist etc.

I found myself looking longingly at the electric blankets in boots the other day (actually had been looking for walking sticks but there weren't any). £50 though.

Incidentally I have been wanting to learn to knit or crochet - I think it will hurt my hands though. DH was even saying that now he can sit on a normal chair for longer periods he can get his hair cut instead of me doing it as cutting it myself hurts me... It's so pathetic I can't even cut his hair anymore?!

I feel a little bit cheered up today though as I got a card in the post from my colleague.

DS cried at bedtime, saying that he'd been worrying about what to do when I die, but then remembered that his aunty lives around the corner so he'll just take his stuff & live there I had no idea he'd been thinking like that. I need to stop crying in front of him & being so pathetic.

Argos do walking sticks, fuzz. I got mine from amazon. Will link to it.

www.amazon.co.uk/World-Smallest-Folding-Walking-Stick/dp/B001TKBMIE/ref=sr_1_1?ie=UTF8&qid=1349896817&sr=8-1

I've crocheted for years but can only manage 5 minutes at a time before my hands ache.

I'd love a card in the post - how lovely

oh grockle.you and your poor DS. maybe you should tell him sooner rather than later about the spoons and explain that CFS is not life threatening, but makes u very tired and you get sad because you want to play and do more but cant.....

if we can help with the DLA form just ask..

fuzz how lovely about your card, its the little things sometimes isnt it.

x

Grockle PM me your address and I will send you a card :)

I'm actually sobbing whilst reading this thread because its exactly how I feel, the complete exhaustion, confusion, jumbling/slurring words, every part of me aches, not knowing how to explain it to anybody because saying I'm tired sounds pathetic.

I was diagnosed with an under-active thyroid which turns out not to be under-active, the endocrinologist agrees I do have a thyroid problem but in his (and 3 other doctors) opinion it is a symptom of another problem and not the cause.

I was off work for 6 weeks when I could barely get out of bed and returned to work on a reduced level gradually working up to where I am now doing 3 days, even this is to much but I'm a nanny so don't really have the option of reducing less (i should be used to work 4 days).

Everyone keeps telling me I'm looking better but the truth is I've just learnt to hide how I'm really feeling, I broke down yesterday and confessed to my boss that I've fantasised about getting run over just so I can legitimatly stay in bed without feeling guilty

My GP is really good and has done tests for pretty much everything suggested on this thread and I'm due another round of blood tests tomorrow but when I saw her on Monday she suggested that we need to consider ME and gave me some info to look at.

I know how lucky I am to have a supportive GP and DP and also bosses who have juggled their own jobs around to enable me to drop days (they are both doctors so fortunatly do understand to some degree) but the main problem is me I just can't accept the person I have turned into, I so desperatly want to feel like me again!

OP I only read the first 5 pages but thank you for this thread I really needed to not feel alone in the frustration of complete exhaustion

smiling your not alone, the fantasy of been "proper " ill so we can just go to bed is something we have all been through.last night i said to my 11 yr old DD if my heart was this poorly and i was in hospital would you be like this with me!!!! how shit did i feel afterwards, she is a child i havent got a plaster or crutches etc to prove im ill to her i just stay in bed........my DS said i have a sick (fab in strret lingo) life cos im in bed during day........

today i have had enough i just want to curl up and hide away from the world...

stick with us, we are a good bunch on here and we have all had very different experiences.........hope the blood tests go ok, and in a odd sence i hope something shows up............x

Oh smiling, I know what you mean. Most people gasp when they see me and say 'Oh, you don't look well, are you ok?' but if I rest for a few days, it's easier to put on a smile and pretend that I don't ache all over & then everyone tells me I look better. It's so hard to accept that you're a different person to the one you used to be & to the one you want to be. And not knowing how long it'll last is horrible too.

I'm so glad you have a good GP & supportive bosses, that makes a huge difference. Please keep posting here - everyone is lovely! This thread has been such a help to me. I never expected this when I started it and I'm sorry there are so many of us in the same situation but it's a great comfort to have a group of people who understand. So, thank you all.

I'm off to explain to DS about the spoons

Ooops

Solo, would you really? That would make my day! I don't want to seem all needy and pathetic but, well, I am needy and pathetic!

Solo gave me an idea - I love getting things that aren't bills in the mail. It's nice to know someone thought about you. I'd love to send people a card - hopefully it would make someone smile & it is an easy thing I can do & feel good about. I wouldn't expect anything back & I like writing letters/ cards so it would make me happy. So, if anyone would like one, PM me.

And if anyone is on FB & wants a moany, whingy old woman friend who posts a lot about being grumpy & tired, PM me