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

(995 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.

Grockle Sat 08-Dec-12 23:00:22

We do that too, smiling. Not every night but quite often. We have some 'after dinner' games - Uno, Headbandz, story cubes, happy families etc. DP is much better at playing proper board games with DS than I am... I get bored really quickly & fidget & get irritable. It might just be that we still have young children's games - Candyland, a noisy penguin game etc. DS does now read the questions when we play Trivial Pursuit & he's beginning to get the idea of scrabble. Maybe we'll do more over christmas. I think he might be ready for monopoly grin

Grockle Sat 08-Dec-12 23:03:45

Sorry, totally ignored your babysitting blush SO sorry you can't manage 4 days a week yet (that's what I do and I'm struggling) - babysitting sounds like a good idea. If I didn't go to bed at 7pm, I think that would be something for me to consider.

smilingthroughgrittedteeth Sat 08-Dec-12 23:11:13

We probably wouldn't do it every night if they lived with us full time but we only have them 1 weekend a month, all half terms and half of the summer holidays.

They seem to enjoy it, as soon as tea is finished they disappear off to the cupboard to choose, although I doubt dsd who is 14 would admit to her friends that she liked playing board games with her 9yr old brother, 'embarrasing' dad and 'annoying' step-mum dont tell anyone but she's really rather lovely for a teeenager grin

smilingthroughgrittedteeth Sat 08-Dec-12 23:22:00

Grockle I did my first babysit in months last Saturday, I was really worried that it would be a disaster but I had a nap on Sat afternoon, dozed on the sofa at babysitting not asleep but resting and slept till lunchtime on sunday, went to bed at 8.30pm and was no more tired than normal on Monday.

I don't think I could do fridays as I'm too knackerd after working 3 days and Fridays are my day to crash, and I wouldn't do any nights when I had to get up for work but saturday nights seem to work for me.

I do feel guilty that I'm babysitting but not increasing my days at work, I just can't manage the relentlessness and long hours and knowing that even if I'm exhausted and ill I have to go in to work at least a few babysitting jobs here and there give me the option to say no if I need to.

Grockle Sun 09-Dec-12 00:35:05

Aww, that description of your family made me smile.

I'm never sure what DSS's make of me. One seems to be in awe, although I've never figured out why. He blushes if I speak to him & when I cuddle them or whatever. The other is quieter and more aloof. I think I'm quite different to their mum. DSS2 was messing about at the table & DP was getting stressed with him so I threw a grape at DSS2. He was so shocked, he didn't know what to do. I then denied all knowledge of it & threw another when he wasn't looking. This happened months ago yet it is still talked about every time they come.

I quite like having step-children - it's lovely to see them & have fun and play but it's kind of nice that I don't have to do loads of the more tedious parenting - nagging about brushing teeth etc. It's nice to be a big family - DP, 3 boys & a dog. But it's also nice to have my little family as well - just me and DS.

GoodKingWenSOLOslas Sun 09-Dec-12 01:22:56

Just dipping in to say hello. In lots of pain and stressy right now.

Hope you have all voted for me in the nc comp smile

smilingthroughgrittedteeth Sun 09-Dec-12 01:49:36

I love my step-children and the family we are when they are here, they are great kids and a pleasure to be around but I also love when they are with their mum and its just me and dp, I feel like I have the best of both worlds, I do wish they lived closer so that we could see them every week though.

solo love the festive name grin

Got home just after 12, was asleep by 12.30 and woke up at 1.30 for no reason, am now wide awake angry

Grockle Sun 09-Dec-12 02:35:34

I'm wide awake too. About 30 mins of dozing, an upsetting dream & I'm awake. And now worrying that I have woken because the person I dreamt about has died. Obviously, I can't ring them at this time of night to find out.

fuzzpig Sun 09-Dec-12 08:49:06

I've been having a lot more nightmares too. It's actually listed as a symptom of the amitriptyline! I guess because it affects your sleep. Mine usually have one of six themes - flying/walking through the air and not being able to stop, my teeth suddenly falling out, public toilets with no privacy blush, my uncle [my abuser] who I'm happy to see in my dreams, me yelling at my parents generally being useless and ignoring my distress, or DH being really really nasty and cruel to me. Unfortunately the last two or three on that list are often combined which is really distressing and confusing.

I have DSCs too smile DSS is 20 and very busy so we don't see him much these days but DSDs (14yo twins) stay over a lot. That's why we moved to this town. I'm actually closer to their age than DH's blush so we get on really well although perhaps not in a traditional stepmum-child way. I think our little DCs are really lucky to have them too - a big brother and two big sisters who absolutely adore them! They always spend Xmas with their mum, but we have a whole other Xmas day with them (and since last year, DSS' lovely GF too) - massive dinner, crackers, presents etc, so it works out really well. They all love games too so we often have game nights.

belleshell Sun 09-Dec-12 20:34:50

wow seems we are all part of a dysfunctional family........i have Step kids too so its 2 bys and 2 girls when all here which is noisey but good fun.....we are having xmas day (on boxing day )all together i cant wait!!!

smilingthroughgrittedteeth Sun 09-Dec-12 20:57:28

We are having family christmas day on new years day, kids are here from the 29th so we are all going to PILs and having a second christmas.

Grockle Sun 09-Dec-12 21:04:18

I love reading about everyone's families smile I was looking at christmas cards the other day & noticed that so many were to 'Mum & Dad' and it made me wonder how many children actually grow up with mum & dad in the same house these days.

I know DS's childminder says more of her mindees live with one parent than both. Makes me feel a bit better - I found my parent's divorce quite tough - I dealt with it ok but I think it may well have caused long-term issues. And, like fuzzpig, abuse... I've never got over that. And as I get older, it seems to be more & more of a problem. Perhaps because I am now a parent? I don't know. I'm beginning to have horrible flashbacks which has never happened before. I have to see him over the holidays too. Not sure what that will do to least I don't have nightmares.

fuzzpig Sun 09-Dec-12 21:29:39

Oh, grockle, I didn't realise you'd been through abuse too sad

How awful that you still have to see the person who hurt you. I never saw my uncle again after I finally told people what he did (long after it had stopped) - though I know my mum still keeps in touch with him behind my back.

It was interesting that the doctor I saw in London said that the abuse - and in particular the stress of telling people and the way my parents totally failed to deal with it (eg mum begging me not to prosecute because her darling brother wouldn't cope in prison angry) - is probably what made me so vulnerable to CFS. I wish I had the guts to tell my parents that.

Do you think you have PTSD? Have you ever seen a psychologist or therapist about what happened? I did in my teens although we barely scraped the surface really. I am hoping to continue dealing with this now. I am only recently starting to accept just how big an impact it's had on me.

Grockle Sun 09-Dec-12 22:18:56

I have recently wondered if that may also be a cause of my current problems. It's a really awkward situation now. When I was referred to my psychiatrist (you know, cos all my pain & problems are in my head hmm), he asked a bit about it & whether I'd had counselling but I never have. He said if people seem to be ok, often it's best not to have counselling because it can rake it all up again & make things worse. I was happy never talking about it. Actually, DP doesn't know. I haven't told him because ExH knew a tiny bit (that it happened but not who did it) & when we split, he used it against me in court to get custody of DS. It was awful.angry

Don't really know what to do. I hate that I'm thinking a lot about it again.

fuzzpig Sun 09-Dec-12 22:29:37

How awful of your ex angry

Maybe you are thinking about it because the illness is making you feel vulnerable?

I really should go to sleep now, been watching a DVD I haven't seen for ages (Black Books) but my heart is pounding for some reason. It's like I can feel the blood pumping round me, especially in my back. Weird.

Work again tomorrow and I really don't want to go. It's only 4hrs again though. DH seems to have a nasty bug or maybe even flu so I've had to step up today and am now very tired and achy. Great start to the week!

smilingthroughgrittedteeth Sun 09-Dec-12 23:49:24

We are having family christmas day on new years day, kids are here from the 29th so we are all going to PILs and having a second christmas.

smilingthroughgrittedteeth Sun 09-Dec-12 23:57:13

No idea why what I posted earlier has decided to repost again confused

I'm sorry you have both suffered abuse sad

Its funny how similar we all are on this thread, I sometimes have to check the name of the poster incase its me but I forgot I had written it blush

Tomorrow is my appointment with the gynea I am actually really worried about it and can't sleep which is silly because I've been pushing to see one for at least 3 years, but now its here I feel sick, I honestly believe my problems are all related to my periods, I think I'm terrified he will say I'm fine and then its another deead end.

GoodKingWenSOLOslas Sun 09-Dec-12 23:58:54

I suffered abuse from my exh1. I had counselling this year. He committed suicide you see and it raked it all up in my head and I suffered dreadfully. The counselling really helped.

smilingthroughgrittedteeth Sun 09-Dec-12 23:59:30

gynae and dead I really need to sleep

GoodKingWenSOLOslas Mon 10-Dec-12 00:03:49

Good luck smiling and try to relax and sleep, doing anything else will not help you and I know you know that already...

smilingthroughgrittedteeth Mon 10-Dec-12 00:04:14

I was raped by my college lecturer, I never told anybody as I thought they wouldn't believe me.

I told DP earlier this year and he was so supportive and understanding, just sharing it with someone else and him believing me helped a lot.

GoodKingWenSOLOslas Mon 10-Dec-12 00:08:07

Bit of a theme here isn't there...sad

Grockle Mon 10-Dec-12 01:55:51

Oh solo & smiling, I'm sorry sad.

It is interesting what similarities we have on here. And quite sad. sad

Hope the gynae is ok tomorrow. Good luck

Grockle Mon 10-Dec-12 03:38:39

Insomnia angry

fuzzpig Mon 10-Dec-12 08:06:55

Wow. We really do have a lot in common. sad

It is just not fair that something so psychologically damaging can leave you physically vulnerable too. Abuse, the gift that keeps on giving hmm <hollow laugh>

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