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.

Ok gynae appointment went well, the dr is lovely and says that he suspects I have endometriosis, which apparantly can cause all my symptoms, he is booking me in for a laproscopy and hystoroscopy.

I'm trying not to get my hopes up about a diagnosis as I've been here before and its turned out not to be what they thought, but endo explains so much.

Good news, smiling. What a relief that it is being taken seriously. I hope the tests help figure out exactly what the problem is & what to do about it.

Belle- it's quite sad, isn't it? That so many of us have been through awful things then suffered with physical pain on top of the mental & emotional trauma.

Now, you wont really find that I've ever used bad/crass language on Mn before, but I will say this one thing...

Shit happens to nice people. Sad but true and as simple as that.

I swear all the time on MN (and at home if my DCs aren't around)

Smiling I'm so glad you've been referred for more tests.

I need to have more blood tests now. Have finally received the assessment from st barts with a list of 6 diagnoses but the CFS one still only says 'possible'.

I've got another phonecall from the physio today and I've done absolutely nothing that I was supposed to :( I am just about managing work but nothing else really. Totally dreading FT next week.

That's true, Solo. Sad but true.

I swear often & in front of DS. When DS was about 3, someone in the supermarket carpark tried to steal the space I was about to park in & I uttered, 'That's my space, you fucker' & DS speant the entire morning saying, 'FUCKER. What's fucker?' My sister laughed all day!

What other diagnoses do you have then, fuzz? Are you happy with it.

I was wrong, it's only 5 :o

• depression with mild anxiety
• postural orthostatic tachycardia syndrome
• arthralgia
• possible iron deficiency
• possible CFS

Am ok with what he wrote although unsure about the anxiety - he was asking me whether I felt panicky and I said no but TBH I feel anxious so much that it's like background. I am always worried but I just keep it in. That's what I want to talk to a psychologist about. Hopefully the blood tests will make 5 a confirmed diagnosis and rule out 4 if my iron is ok.

Bit of a bad week at home, DS is really poorly :( we thought his eczema was just getting worse but in the last couple of days it's got incredibly bad. He looks horrific and can barely move or eat. Turns out he's got a virus which has caused a rash and infected his eczema too, it's all over him. He's started antibiotics but might have to have them on a drip instead if he doesn't improve quickly. Even the doctor was horrified at the state he's in. He's snuggled up in my bed now.

Can't believe it's only 2 weeks til Xmas. Not really feeling it.

Was much cheered up by my spoon though, thanks grockle! :o

Oh Fuzz, so sorry DS is so poorly.

Am glad you liked the spoon

I've not kept pace with the thread but just read the last couple of pages. Very interesting re the abuse. I had a traumatic childhood too....

As an adult I'm very aware now that my interactions wtih people are viewed through a different lens than perhaps they could be. I think something to do wtih identity/self esteem/ lack of support as an adult as well as just the insanity of growing up not feeling safe/lvoed/knwoing who to trust as a child must really rock you. But they're big overarching life-issues and I've no idea how to re-build a life that's stable in relation to those things sometimes. It's no point going to the dr about those as its not a 6week cbt getting-over-a-particular-issue experience.

I've often wondered if I'd be healtheir physically if I had better mental resources.

I suppose that's the thing... childhood abuse makes you who you are - I'm not sure it's something you ever get over & you can't change it. It becomes ingrained and effects the way you make decisions, the way you think...I think it's really hard to change how you perceive the world & other people too.

I just googled 'cfs and childhood trauma' and loads of pages came up so perhaps there is something in it? I'm going to have a read.

Grockle! I received my spoon today (had to nip to collections office this morning), thank you so much! what a lovely idea and thing to do!
I wish us all many, many spoons!

Grockle thank you so much for my spoon, have just picked it up from sorting office, its made my day x

Have hit a whole new low

Got up 30mins early this morning to de-ice the car, went to open the car door and it was frozen shut, managed to get it open and rang work to say I would be 5 mins late probably wouldn't have been but thought I'd be prepared set off for work and my tyre blew, phoned work to say I would be even later and my boss was obviously not pleased with me and was extremely off with me, got off the phone and burst into tears.

A very nice man pulled over and offered to help change the tyre, it took him 10mins and I cried the whole time, thanked him and set off for work, stressing about my bosses reaction.

Got to work 25mins late ive been late 3 times in 4 years all traffic related and bosses first words to me "I thought you had a flat tyre" I said I had but a man had helped change it and he said "that was quick it would have taken me ages".

Now a few years ago this conversation wouldn't have bothered me in the slightest I would have made some sarcastic response and that would have been that. But what did I do this morning? I assumed he didn't believe me burst into tears and then had to run to the bathroom to throw up.

He has now gone to work and I am hiding in the bathroom, crying my eyes out, the real me DOES NOT cry over a car door/flat tyre/stroppy boss, who is this crazy emotional person I've become?

Right pulling myself together now and coming out of hiding to do the school run, have a good day all.

Oh Smiling that sounds a very stressful start to your day! Must have used up lots of energy (and spoons). I hate being late for work and I espect your boss was worried about being late for work - then relieved to see you and it came across wrong. Thank goodness for your good samaratan! Oddly I struggle more in the cold too - presumably just because it is more energy consuming. Sending extra spoons today! Hope the day improves.

((((smiling)))) what a horrible morning :(

I hate being late for work too and am usually at least 15mins early so I do understand where he is coming from but its the way he speaks to me that makes me feel like I'm about 5!

I'm just so much more emotional now days which I assume is because I'm so tired, and people treat me the way they always have and expect me to still comeback with some witty response and just brush things off like I used to, I just can't though I analyse everything that's said looking for a negative meaning behind it and cry, I'm always bloody crying lately maybe I should add paranoia to my ever expanding list of what's wrong with me.

Anyway kids at school and now going to make 150 cupcakes for school fair, there's no one here but me and radio 2 so the day is looking up already

Smiling, I always feel like a little kid too with bosses and even the Dc's teachers...try not to worry.

I listen to Radio 2 as well! are you as old as me then?!

I'm absolutely exhausted today. Went to visit a potential school for my daughter and was just watching the staff showing us around thinking, "I used to do that!" I just can't imagine having the energy. I'm home, brain fogged, can't quite plan the rest of the day never mind Christmas and so frustrated with the futility of it all. Proper grumpy day.

My baby is 1 now, and this year has been a complete fog. Mainly due to lack of sleep, but now she's sleeping I'm really worried that my ME/cfs is less recovered than I thought as I'm still not really functioning. I don't like it. I want to "wake up!".

(Just realised I've name changed a few times - was on the earlier thread sorry!!)

He has form for not being as sympathetic or understanding as he perhaps could be, I posted this www.mumsnet.com/Talk/general_health/1519871-dont-know-where-to-post-this-but-feeling-really-crappy the day before I collapsed and was rushed to hospital, then had 8 weeks off sick, 3 days after being signed off he rang to ask when I would be back.

Reading that thread back reminds me of how far I've actually come, I felt so very ill then and I don't know how I even managed to drag myself out of bed never mind to work.

He's been ok since I've been back at work but seems to think because I'm back I'm better and I constantly feel like I'm defending myself.

solo I'm 29

Sounds like my DH! He is lovely really but he often speaks to me whilst still in 'work' mode IYKWIM. When well it goes over my head and I can see the funny side -but when struggling it makes me feel even worse for being unwell and less efficient. I feel bad enough for being slow so easily mistake abrupt statements for critism. I feels so much worse when doing more/ working faster just is not possible and nothing I can do can fix (the ME) it. I get emotional when nearly on my knees too. I had hoped sinus/ear/chest infections might pass me by (since my surgery in Sept) but had the familiar symtoms again and felt very unwell at work. Spent half the morning fighting back tears for no reason other than everything was such an effort. All the more frustrated because I work in a hospital (surrounded by doctors) but could not get an appointment to see my own GP! (Got there eventually and am recovering now)
Happy baking!

That's exactly how I feel.

I'm fine now have made and iced 175 cupcakes, and watched my youngest charges very first nativity so I'm feeling quite cheerful

Yay, am glad all spoons have arrived! I didn't have everyone's addresses but sent to those I had

Smiling, so sorry about your shitty day. I'm glad you are feeling brighter now. Sorry about your boss. I cry all the time too & always feel like a child with DS's teacher which is silly because I AM one (teacher, not child!)... I once got hauled into DS Headteacher's office and was terrified! And I listen to Radio 4 2.

I couldn't go to work this morning - my back & legs hurt too much and, after 3 weeks of shivery hot sweats, I've had enough. Not sure if I should go on our night out now tomorrow.

I have news. I saw the consultant today and he thinks what I have is Lupus . It was very rushed, so he didn't explain what that meant (I am now googling) but did more tests, said there's a good drug that would help & sent me for an MRI. I'll see him again in the new year.

Don't know much about Lupus but I'm glad it looks like you have a diagnosis not that you have lupus obviously

Things are looking up for some of us, fuzz is getting treatment, grockle and i might both have a diagnosis, let's hope as we go into 2013 everyone has some good news i know there are others who've had news lately but can't remember who, sorry

Well if it is SLE Grockle at least they will know how to treat you. I had all the tests too - blood tests and xrays of joints mostly fingers and toes and decided it was not SLE.

You're right, smiling. We all have little positives going on. Sometimes it's hard to see them.

Magso, you're right. I don't really care what I have, I just want to know how to make myself better! I think I'd feel better if it is Lupus because I'd feel that because it is an autoimmune problem, other people (mainly work) might take it more seriously & not immediately think it's all in my head & that I'm just whiney and moaning.

My mum is coming this weekend, so it's going to be busy... I'm spending the day with my DSis tomorrow, to wrap presents for our parents. DS has a performance he's in on Saturday morning, then the pantomime afterwards (as my birthday treat - we go every year!) and then dinner (for DP's birthday treat!). On Sunday, DS is singing at an old people's home, then I'm meant to be at a friend's open house then DS at a party in the evening. So, much toing & froing & socialising! Hopefully it won't be too much!

Hope everyone else has a lovely weekend.

You know, I used to hope/wish I had something like MS or Lupus, just so that there was something I could do or take for it! sad really, but there's nothing that really does any good for ME. Sooo disheartening.

I'm nearly 49!