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

(994 Posts)
Grockle Wed 11-Jul-12 22:27:59

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 Mon 03-Dec-12 15:16:13

Yes it is Kate smile

Having my first consultation thing with a physio tomorrow - was invited back up there but she's going to phone me instead, at 7.45am <bleary eyed emoticon>

Work was ok today... lovely to see everyone, but I am coming to accept that there are more things than I thought that actually I can't do at the moment. Problem is, if I give them this new list, they really won't be able to keep employing me in that role. It's one thing giving me a chair, and saying I don't have to unpack deliveries on the day when deliveries are biggest, but quite another to say I don't have to do any shelving, shelf tidying or floor walking etc. I'd have very little job left if I missed out all that.

Grockle Tue 04-Dec-12 19:12:18

Santa was ok although DS was not all that excited... I think he might be getting a bit too old (but he's only 7).

I'm trying to get through til the christmas holidays too. I'm beginning to struggle. Today has been hard & I've been shivery & cold all day yet hot & sweaty at the same time, like I've got a high temperature but I haven't. I've got a 12 hour day at work tomorrow then a massively important day on Thursday with big meetings & giving evidence. And I'm also now worried because on the rare occasion I feel up to sex, I am bleeding afterwards. I am sure you don't want to know but this but you know pretty much everything else grin I really really don't want to go to my GP about this (nor the Piles that I also seem to have blush) but I'm not sure if I should.

On Friday, I'm taking DS to the Harry Potter Tour but I'm scared I won't be able to drive that far.

How was the physio, Fuzz? It's rubbish when you can't manage the things you are employed to do.

fuzzpig Wed 05-Dec-12 07:38:41

Go to the doctors grockle! When we have such a long list of things that are wrong with us, it makes sense to treat the things that can be treated, yes?

The physio person was really helpful. We went through the GET booklet and she answered lots of questions. We did talk about work and she said that while I can't control that, I can still try and stabilise the rest of my routine around that, and gradually build up stretches, housework and gentle walking. She said I have excellent Sleep Hygeine <polishes halo>

I now have to record my activities for the whole week, and try a bit of walking/stretching at some point, before speaking to her again next Tuesday. She did say she was really concerned that I'm being pressured into increasing my hours too soon. sad

Only my second day back yesterday, and I did start 'feeling it' IYSWIM, in that my hands/arms started aching. Unfortunately I had to go to a few shops after work. I did try to pace myself with rests (and a milkshake grin), but it still hurt. Did half of DD's nativity costume and fell asleep on the sofa before 8 blush

magso Wed 05-Dec-12 08:56:58

Hi Grockle - yes go to the GP. Not everything is due to ME/CFS and Fuzzpig is right might as well fix the things that can be fixed.
Curiously I took ds to the HarryPotter studio tour on Monday (did you know a carer can go free with a DLA registered disabled person?). It is fairly local for me so not too far to drive, and parking is easy. There is a cafe in the arrival hall to sit and relax. (no chance with ds champing at the bit) I found it exhausting but that was mostly because ds needs such close supervision (he has LD/ASD) and couldn't let me rest or sit. The worst bit was the queueing to go in. In restrospect I do not think we needed to queue as we were just waiting for the doors to open and could perhaps have sat down and dashed in on the end. If you are using a wheelchair there is a side entrance - so perhaps ask if the queue could be bypassed. Certainly the 20 minutes + queue standing followed by a short standing intro spoilt it for me . There are lovely comfy seats in the cinema - but ds needed to rush off! I am still recovering! There were not enough hands on type things to keep ds amused!
Good luck with the GET Fuzzpig. What strtches have been recommended? Is there anywhere I could download the details perhaps? I have started doing some back stretches (cat stretch I th ink it is called) and calf stretches because of cramping. I don't envy you back at work. Do take things as slowly as you can get away with. try to notice what you can do and not allow yourself to get upset by your limitations - I know harder done than said. ( The phrase with pot and black comes in mind here!)

belleshell Wed 05-Dec-12 13:54:56

Grockle, if you dont want to see GP how about seeing practice nurse or going to family planning clinic ( its sexual health now!!) you should really get it looked it it may just be something very simple and will put your mind at rest, otherwise it is something else to think about....work sounds a nightmare, but time with DS sounds nice even if you are dreading it (because of fatigue) have you got much planned fro weekend maybe a duvet day would be nice (VERY MUCH NEEDED)

Fuzz GET stuff sounds intesting, im filling in an activity sheet too to help me pace..trouble is i know what causes pain and fatigue when im feeling ok (contradicition in terms!!) its working...but i have to work, and the shorter days are sooooooooooo much better, im able to come home make tea, have a nap then do school run.. jst dont get a day off in wek to catch up with all the other stuff a mum needs to do.........

spoons to you all xxxxxxxxxxx

fuzzpig Wed 05-Dec-12 14:50:29

Yes the GET booklet is available for download I think - on phone now but I'll have a look later when I'm on the laptop and post a link smile

Work wasn't so bad today, and tomorrow I'm getting a lift both ways which will help a lot!

smilingthroughgrittedteeth Wed 05-Dec-12 15:06:49

Glad work wasn't to bad fuzz

I found my first 2 days back at work so hard, I remember waiting to cross the road and thinking 'if I step out in front of the next car, I can stay in hospital and sleep and not feel guilty because I'm off sick, I'm just not ready to be back'. I was so tired it seemed like the best way of not having to go to work, I'm ashamed of myself now for thinking it blush

It took about 2 weeks for me to gradually ease back into working but even now after 3 mths I struggle.

I am still in bed, I have to get up because the dog needs walked and horses need fed, but I am completely wiped out.

fuzzpig Wed 05-Dec-12 17:32:15

Smiling, I have thought exactly the same thing on more than one occasion. Nothing to be embarrassed about - just shows how hard this illness is to cope with. thanks

smilingthroughgrittedteeth Wed 05-Dec-12 20:11:25

I think that was my lowest point, I'd been very unwell but struggling on for about a year, had 2mths off work sick and was lucky to have such lovely bosses which meant I went back to work for 1 day the first week and 2 days the week after (mon and fri) which I just about managed then went to 3 days which I struggled so much with and just couldn't cope sad

Originally I was supposed to do 3 days a week for 3mths then go back to my normal 4 days but I've been back for 3mths and no way can I manage an extra day so we have decided to stay at 3 for the next 6mths after that I will have to decide whether I can do 4 or leave because my bosses employer won't allow her to stay on reduced hours any longer

belleshell Thu 06-Dec-12 15:02:29

Smiling, we have all had similar thoughts i have looked at patients before in hospital and thought i wish i could just go to bed for the day...its so hard....you have had such alot going on lately......and with xmas etc alot more to go i expect...........can you go right back to basics...work and then sleep/rest days off, just to get you to xmas.....xxxxxxx

fuzzpig Thu 06-Dec-12 16:05:22

phewwwwww made it through work, four days in a row <woop>
had to do school run as well for the first time in ages, as DH is at the jobcentre. I am very lucky not to have had to do it for so long, I hate it - both physically and mentally!

Got one hell of a headache now though hmm

smilingthroughgrittedteeth Thu 06-Dec-12 16:40:12

Congratulations for making it through your first week back [fuzz]

I've had a fairly good day, I actually woke up feeling refreshed and got through the morning school run without feeling like I was going to collapse, I was very good and made myself have a nap though instead of trying to do stuff and exhausting myself.

Am tired now though and ready for bed, fortunatly eldest charge is at a friends house so just 4yr old to look after and he is tired to so we are curled up on the sofa watching a film. Last day this week so can rest tomorrow

smilingthroughgrittedteeth Thu 06-Dec-12 16:41:08

Meant to say fuzz

fuzzpig Thu 06-Dec-12 18:07:17

Aww I love snuggling up with a movie. We've watched the Lorax 3 days in a row! It's a perk of working in a library.

We are actually doing a family DVD hamper this Xmas - not the worthiest of gifts but sod it, we aren't able to go out or do anything very active right now!

I found myself thinking earlier that I can't actually cope with the school runs three times a day and that staying at work would be easier. I'm so confused!

My head still flipping hurts angry

Grockle Thu 06-Dec-12 21:04:36

I've felt like that too today smiling & fuzz. Shitty day at work, on top of feeling quite unwell & suffering the effects of insomnia. Well done for making it through, Fuzz.

Oh, what a coincidence, Magso. I used to live in Hertfordshire so was going to drive & see my Dad before going to the HP Studio but he's away so it's a 2+ hour drive each way for us tomorrow sad I am sure it will be ok - lots of Christmas songs, picnicky foods & no rush. I'm quite looking forward to it & to seeing DS's face when we get there.

DS has his first activity with Young Carers on Saturday, so hopefully that will make him smile. And we're going to a Christingle service on Sunday.

I will monitor the bleeding situation & see a dr if I must. There is a sexual health/ GUM clinic nearby but I don't know if they do drop ins or if you need an appointment.

DVD hamper is a fab idea. Father Christmas is bringing DS a couple of DVDs that I want he wants to watch.

magso Thu 06-Dec-12 22:13:02

Hope you have a lovely day at HP Grockle and ds.

fuzzpig Fri 07-Dec-12 05:19:37

Aargh random insomnia attack! angry

This keeps happening lately, I go to sleep fine but then wake up in the small hours for a while. Wonder if it's related to the amitriptyline. I take it at 5pm because it gives me such a hangover in the morning and as of next Saturday I'm back to 8.30 starts at work, which means leaving at 7.30 - I'm normally still asleep at this point.

This time I was woken up by a nightmare, I was shouting and woke myself up. It was so real - DH was shouting at me and hated me for not doing anything in the house or with the kids, he said I was lazy and didn't want to be with me anymore. I hate dreams like that, they shake me up and make me really clingy blush I know when I tell him DH will be lovely and tell me not to be silly, he really is wonderful and I can't believe how lucky I am when I know he is totally willing to do everything and look after me when I'm unwell, but I always dream the opposite.

Oh well. Happy birthday to me! I'm now 26. Shame I feel like I'm 3 times that!

smilingthroughgrittedteeth Fri 07-Dec-12 08:00:05

Happy birthday fuzz flowers

I wake up at exactly 2.32 every bloody morning and usually fall back to sleep at 4.15ish, not helpful when I have to be up at 6 for work

Grockle Fri 07-Dec-12 20:31:48

Happy birthday Fuzz. I hope you've been able to have a quiet celebration.

I have exactly the same problem - falling asleep fine (which I never used to) but then waking up in the night for ages, sometimes several times each night. This has happened since I've been taking the amitriptyline.

fuzzpig Fri 07-Dec-12 21:03:29

Thanks smile it was actually a pretty fun day, first time I've really enjoyed my birthday for a few years!

Parents took us out for lunch and I deliberately chose somewhere I've not been able to get to (it's in a huge park so going on a bus would mean far too much walking) and it was worth the hype. Managed a brief trip into town too (again made much easier by being in the car!) DH is really exhausted and has gone to bed so we haven't played the game he gave me (Lego Creationary - I'm just a big kid really grin) but hopefully we will tomorrow.

I actually forgot to take my amitriptyline until 3 hours later than usual - so it'll be interesting to see if that affects my sleep. I really don't want to stop taking it, as it does seem to be helping more than it's hindering! I'm worried how on earth I'm going to manage getting up for work but we will see how it goes.

How was Harry Potter?

Grockle Sat 08-Dec-12 20:44:47

HP was AMAZING! I wasn't expecting much but it was really, really good. And DS was in complete awe at everything. 'Is this really where Daniel Radcliffe stood? And is this really what he wore?' etc

The drive home was really scary though... I don't know what happened but all the lights started to blur & instead of car lights, I could see baubles and I began weaving into the next lane & back. I knew I had to stop driving... thankfully we were just by DP's exit on the motorway so I went to his, left DS downstairs & slept for 2 hours before continuing the journey home. I have never scared myself driving but had I not stopped, I think I would have seriously injured someone, if not worse. I don't know how it happened - I was fine and then I wasn't.

So glad you have a nice day fuzz. Have you played your game?

I'm looking for board games for christmas. SOmeone (I don't know who) nominated us for the Christmas appeal & I was sent £15 voucher this week to spend on myself/ DS/ or to regift. So, I thought a board game would be a nice idea - something we can all do together. I'm not sure what to get but I'm so touched that people thought of me. I've given to the appeal in the past but never been nominated before. Things have been pretty shit this year so it was very, very lovely. Isn't MN wonderful?

smilingthroughgrittedteeth Sat 08-Dec-12 21:24:33

Ahhhhhh Grockle I'm glad you were nominated if you hadn't started this thread I would still be feeling all alone x

Most used game in our house is a game called apples to apples and everyone loves it.

As strange as it seems I'm always fine when driving, its like something in my brain clicks in and my thinking is clearer than at every other time, I get out the car and I'm back to the forgetful, exhausted mess that I've become!

fuzzpig Sat 08-Dec-12 21:30:46

There's a thread called 'best family board game' on the Christmas board, should be on the first page as I just bumped it up. smile

I LOVE board games. Hope you find something good - check they are good for 2 players though if it's likely to just be you and DS sometimes, we have a lot of great games that frustratingly we hardly get to play as they need 3+! Labyrinth (by ravensburger) might be good.

Have had a bit of a play with my game today grin but just came over all sleepy so am going to bed now. DCs are actually being given their first proper Lego by one of my best friends this Xmas so it's made me really excited about that - I never had any as a child <deprived>

That driving incident must have been so scary. I'm really glad you noticed what was happening though, and took action.

Grockle Sat 08-Dec-12 21:36:41

This thread turned out to be far more than I ever imagined. I am so grateful to you all for being so supportive. I felt very alone and like I was imagining everything & being a hypochondriac so it has been such a relief to find people who have some of the same issues. thanks

Smiling - I can always manage driving fine - I feel perfectly normal, less pain etc. So yesterday really freaked me out!

Off to hunt for games - thanks for the tips. I love board games but we don't play them as much as we should. I never had lego either, which may be why I love DS's so much!

smilingthroughgrittedteeth Sat 08-Dec-12 22:51:20

When dsc are with us we play a board game every night after tea, its so much better than watching tv. We take it in turns to chose a game.

Have got dsd the twilight scene it game for christmas.

Would love to get some new ones as we only have a few but they are so expensive and we are officially skint, I'm babysitting tonight and next weekend which is probably not a good idea but we need the money sad

I did think about going back to 4 days at work but I know I can't, at least babysitting means I can sleep all day and then just sit and mn watch tv, and pick and choose when I'm well enough to do it.

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