Fibromyalgia (part 2)

somebody_else

Careful_with_that_Axe wrote: »

Told Dad today that I wouldn't be stayiing with him whilst his wife is away, but that I woud pop in everyday and we could have some trips out together.
I told him that it wasn't my job to look after him or stop him drinking. That being said, he was sober!! And I didn't see any evidence of booze out in the house, although I know he has his hiding places.

Yay! Way to go Auntie Axe. It's always hardest the first time round - trust me it does get a bit easier although the g...g...g (you know) doesn't totally go away.

Slightly different circs with me - my father always expected me to move in with him and care for him any time my mother had a week or sos respite. given that I was working full-time at the time and struggling to cope with that, there was no way I was physically capable of looking after him as well - 25 miles away and being expected (despite what he always said) to not only help him get dressed in the morning, but do a full days work then do his cooking and housework when I got back there in the evenings.

'Snot easy saying 'no' to ones parents, but it has to be done sometimes.

sharon59

Had a quiet day doing as told-so boring!!!Have eaten far too many pancakes!
Was left alone for about 2hrs today and felt very shaky and wobbly -first time to be alone-no visitors,other patients family etc about-and felt like l was going to have a panic attack but got a grip eventually.
hope your all faring better than me in the calm and happy stakes!!
love and hugs to all
sharonxxxx

somebody_else

sharon59 wrote: »

Had a quiet day doing as told-so boring!!!Have eaten far too many pancakes!
Was left alone for about 2hrs today and felt very shaky and wobbly -first time to be alone-no visitors,other patients family etc about-and felt like l was going to have a panic attack but got a grip eventually.
hope your all faring better than me in the calm and happy stakes!!
love and hugs to all
sharonxxxx

Sharon, give yourself time. You now have to go through a series of 'firsts'. I remember from when I came out of hospital 10 years ago, I was terrified to go to sleep the first night. Then I had to get through all those things for the first time without anything disasterous happening. They weren't easy, but I did it.

The fact that you 'got a grip' means that next time you're left alone for a while it will be easier. Every day, things will get easier for you, but do give yourself time.

Having said that, you sound like you're doing okay. Have a gentle !!{hug}} from me.

somebody_else

Rae!

Did you make that appointment with the GP?

Told you I wouldn't forget forever, didn't I?

raeh

Hi sharon well done getting over that first time alone, im sure it will get easier now you have done it once.
we made pancakes too 8 each for the kids :rotfl: all with lemon, after making that many i couldnt face any myself.

Trialia i dont really think you can ask someone to not talk about something they like as we wouldnt ask you not to talk about the things you are passionate about even if we arent interested! i do hope you were joking in the way you said it and it came across wrong to me

auntie axe well done :T it would have been very hard for you to be there all week but make sure you dont overdo things 'popping' in each day ... remember your limits on what you can do [amazing how good we all are handing out the advice isnt it;)]

LW i hope you rested for the rest of the day

:hello: hi s/e i hope you had a better night last night

bz hows things i hope you are all sorted and settled in and wedding plans are running smoothly


dh has gone to watch the :footie: so its nice and quiet and i can do some competitions in peace i need to get to the end of the month

somebody_else

raeh wrote: »

:hello: hi s/e i hope you had a better night last night.

A bit better thanks, but still not 'good'.

I take it you didn't get to see a GP today?

raeh

somebody_else wrote: »

Rae!

Did you make that appointment with the GP?

Told you I wouldn't forget forever, didn't I?

haha we posted at the same time and i actually forgot to say anything
i rang first thing and got an appointment for 10.10 work let me leave for it which was good. She looked through all my old notes and decided that it would be good to run all blood tests again :rolleyes: i now am sporting the most amazing bruise as she trapped the vein and it all bubbled up :eek: its still a bit swollen but im sure it will go down.... take a seat if anyone is still reading as this may get long :rotfl:
she looked back at when AS was first mentioned on my records and decided to run all the blood tests again. She poked around alot on my back and spine and almost had ne climbing the walls with the pain
she said she didnt think i could have lupus as i dont have the butterfly rash?? but as i have a lot of the other syptoms she would run the tests anyway.
she was amazed that in all the time iv been diagnosed i have never referred to the pain management clinic, apparently theres a new one at the other side of the city especially for fms and cfs but now until these tests come back i cant be referred as if its lupus that would mean i dont have fms and wouldnt be able to go :rolleyes: she also offered acupuncture as they have a resident acupuncturist at the surgery but the woman rang me later in the afternoon and said she had found it didnt work with fms patients as their pain reactions are too high, when the needle touches the muscles it can go into spasm ... nope dont think il try that!!

right to cut a long story short iv got to wait for the bloods to come back could have just said that couldnt i :rotfl:

raeh

somebody_else wrote: »

A bit better thanks, but still not 'good'.

I take it you didn't get to see a GP today?

Ahemm .... :cool:

somebody_else

That's actually brilliant news Rae! As far as the 'butterfly rash' goes - it doesn't happen to everyone. I reckon there's still a chance that you could come back positive for several of the markers in your blood though.

If I can find it, there's a list somewhere on the 'net that gives the various symptoms/pointers towards lupus. As far as I remember, there's something like 11 specifics, but it says that if 4 or more are present then the diagnosis should be made. It might be worth taking the list back to your GP when you go for your results. It may make things easier for you.

And well done for going - sounds like it was well worth it.

somebody_else

Here you go

http://www.merck.com/mmpe/sec04/ch032/ch032g.html

I'm not sure if it's the list I first saw when I was first told I might have SLE, but it does give very similar information.

It is designed for medical professionals, so please don't go scaring yourself silly reading it. There is a spectrum with SLE just as there is with Autism. As long as your renal and liver function tests come back normal then it probably will be okay. Having said that, once you've got it, you've got it.

Interestingly, there are a couple of things on this page that make it more likely that I've got SLE - given what my blood results have been in the past.

Take care