Fibromyalgia (part 2)

Careful_with_that_Axe

Sharon - well done for managing those 2 hours. Tiny steps - you need to get used to being with you again (if that doesn't sound too American). Little steps (metaphorically) every day is good progress. Not too much at once. Will hold you in my mind on Thursday.

Raeh, Well done on going to see doc. In homage to BZ, the vein thing sounds "grim" .
GPs are all different - even though I had the butterfly rash from the start and all the other indicators, one GP said he would stake his reputation that I didn't have Lupus :rolleyes:

Trialia, I doubt we've ever stayed "on-topic" for any length of time here. You can just skip the bits you don't want to read. I would be a shame if we started censoring people from talking about things that didn't interest us personally.

s/e, sorry you didn't have such a good night. Do you think it would help to step out of your routine to try to reset your body clock? Dad was actually quite responsive to what I said - he had actually thought Stella had asked me to stay as he wasn't able to look after himself. I set him straight that it was to try to stop him drinking.

I saw an interesting thing on Wikipaedia about Denial of Impact which has stayed in my mind along with the 3 C's and I feel much stronger and more able to cope as I feel armed with knowledge iyswim.

Unity, hope all is OK with you.

suep

Sharon well done for coping on your own, it is strange when you first get home from hospital but hopefully you will soon get used to things again.

Im usually in bed by now and am going up in a minute, just came on to check something out and couldnt resist popping in to check on you all
I had a hospital app at 4.10 this afternoon to see the Uro about my bladder problems, I got there early and had to wait ages, lucky I took my book, I didnt leave the hospital until 6.00 :eek: By that time it was getting dark and my head was thumping, does anyone have problems driving in the dark ? the headlights from other cars really hurt my eyes and by the time I got home I thought I was on course for a migraine but luckily a swift cuppa and rest helped although my heads still aching. Next time I go I think I'll take a flask and sarnies :rolleyes:

I hope everyones ok, oh nearly forgot well done cwta for putting down some ground rules with your dad :T
well Im off to bed, nite all sleep well everyone including s/e

Careful_with_that_Axe

Suep, did the Uro some up with anything positive?
Horrid when you have to wait that long isn't it.
I no longer drive at night- whatever I try, it feels like the lights of oncoming cars are boring right into my brain and it's far too painful. I just avoid it at all costs now.

raeh

sue i will always choose not to drive at night if i can, i cant seem to judge spaces as well, especially when its that strange dusk time. The lights hurt my eyes as well and they dazzle me even though im not looking at them and i get those odd shadows? like when youve looked straight at a light? i also get headache everytime so its easier just not to
we are going to see bolt after school hopefully and my friend has offered to drive as it will be getting dark when we come out
did they tell you anything at the hospital or is it the usual long wait for results?

sharon , i hope your night was ok another day and a few more little steps as auntie axe said xx

right must drag youngest out of bed, i think he wants more pancakes for breakfast :rolleyes:

i hope all of you have a good day and its as comfortable and as painfree as can be

somebody_else

I'm another one who can't drive at night. I'm very sensitive to light and if I have headlights coming towards me in the dark, I can't see the road at all. I also end up with a blinding headache. Mind you, I can end up with a blinding headache just being out of the house on a bright day. Like many of you, I now don't drive at night. Fortunately, I have T/S who can take over if we're both out and it's going to be dark before we get home (I don't do that sort of journey on my own any more). It was such a relief when he passed his driving test - to be able to hand the keys over to him if I was too tired to drive home (even if we were only a mile or two from home) is such a relief.

Auntie Axe I have to stick to my routines or everything goes completely to pot. The first thing that goes is my memory, which makes doing all sorts of things very hard, and then I start feeling really ill and then my sleep pattern breaks down even more. I'll know I've hit a good phase when I start sleeping properly again.

And as for one of your GP's saying he'd stake his reputation on you not having lupus - we all know what some doctors can do with their reputations, don't we?

Right, this has got a bit on the long side. I hope Sharon in particular had a good night, and everyone else had as good a night as possible.

Careful_with_that_Axe

Hmmm, I wonder where I can get a young man to do some driving for me
I can just imagine the relief when T/S was able to drive s/e.

My Sister is avoiding my phone calls - if she tells me she's not coming down this weekend to give me a couple of days off I shall tear her arm off and hit her with the soggy end. Actually, that's not really fair as it is a 4 hour drive for her to get down here. I just get a bit peeved with her as she's not exactly dripping with the milk of human kindness and that's a trait I hate in other people. I hate lack of generosity of spirit if that term makes sense.

Have also decided that I'll phone Dad each day before I go over and if he's drunk, I won't be going. Will tell him today. Ohhh - get me :rolleyes:

sharon, I hope you had a decent night and that you have a decent day today.
s/e, being me, I want to offer all sorts of suggestions to try to help you sleep better, but I know you'll be aware of them all - you're a wise old bird *runs and hides behind raeh*

somebody_else

Careful_with_that_Axe wrote: »

Hmmm, I wonder where I can get a young man to do some driving for me
I can just imagine the relief when T/S was able to drive s/e.

I was delighted when he came home after taking his test to tell me he'd passed. Mind you, he should have - he spent about 2 years taking lessons to make sure he was good enough.

Careful_with_that_Axe wrote: »

My Sister is avoiding my phone calls - if she tells me she's not coming down this weekend to give me a couple of days off I shall tear her arm off and hit her with the soggy end. Actually, that's not really fair as it is a 4 hour drive for her to get down here. I just get a bit peeved with her as she's not exactly dripping with the milk of human kindness and that's a trait I hate in other people. I hate lack of generosity of spirit if that term makes sense.

Erm... I suspect that my sisters could say the same of me - I did, however do a lot regarding looking after my father when he was alive, and visiting all day and every day every time he was in hospital (apart from the last 2 or 3 occasions, 'cos he'd been taken to a hospital 25 miles away and I was working full time by then and just couldn't physically do it any more). I have, however, made it very clear that I have no intention of taking any responsibility for my step-father. I'm afraid that when the time comes (and it will, given his medical history) then I'm no longer in a position to cope with it.

Careful_with_that_Axe wrote: »

Have also decided that I'll phone Dad each day before I go over and if he's drunk, I won't be going. Will tell him today. Ohhh - get me.

Good decision - all you have to do now is stick to it.

Careful_with_that_Axe wrote: »

s/e, being me, I want to offer all sorts of suggestions to try to help you sleep better, but I know you'll be aware of them all - you're a wise old bird *runs and hides behind raeh*

Oi! not so much of the old! Just remember, I'm younger than you (I think - I can't actually remember.) But don't worry, you're safe - you can run, the best I can do is break out in an ungainly hobble.

kassandra

Hi all! i don't seem to be getting on here as much as I'd like to. It makes it hard to keep up with you all!

I'm the same with driving at night now which is a shame because I love driving. We went to see the mighty boosh in sheffield last month and I was driving as I have a seven seater and there was six of us going. It was awful driving back and I ended up getting lost as I couldn't see signs and turnings etc. It always feels like everyone has their full beam on. I thought it was just me. I had my eyes checked and they are no different than before so I thought it was strange. I also have the shadow thing. It's good to know others have the same cos it's not something I would ever think to tell the doc. It really is a strange illness this fibro thing aint it?

I asked the doc the other day if she was sure it was fibro I had as I didn't know what blood tests had been done before but in Ireland every time I had my bloods done it came back with liver or kidney disfunction (can't remember which) and high cholesterol levels. She said that I had some bloods done last June but if I was worried that it may be A.S. then she would do some other blood test. I've left it for now as she has started me on a NSAID called Neprosyn (I think) along with my other meds. My hands have been swelling up the last few days and I'm wondering if it's them. Yesterday they felt really tight and my fingers looked like sausages!!

I wonder if that is one of the side effects. A bit like some antidepressant side effects are suicidal thoughts. What's all that about

kassandra

Hahaha! s/e and CwtA. I love reading your banter.

I hope your dad is ok today.

I'm still laughing at the "ungainly hobble" :rotfl: :rotfl:

somebody_else

kassandra wrote: »

I asked the doc the other day if she was sure it was fibro I had as I didn't know what blood tests had been done before but in Ireland every time I had my bloods done it came back with liver or kidney disfunction (can't remember which) and high cholesterol levels. She said that I had some bloods done last June but if I was worried that it may be A.S. then she would do some other blood test. I've left it for now as she has started me on a NSAID called Neprosyn (I think) along with my other meds. My hands have been swelling up the last few days and I'm wondering if it's them. Yesterday they felt really tight and my fingers looked like sausages!!

I wonder if that is one of the side effects. A bit like some antidepressant side effects are suicidal thoughts. What's all that about

Dunno the if it's one of the side effects, but I've found that NSAIDs don't do a damned thing for any pain I'm in. The doc has tried me on a couple to no effect and I've been told that I mustn't take aspirin or ibuprofen cos of the brain haemorrhage, so I'm somewhat limited in what I can take.

I would go back and get those bloods done though (and I think you should tell your doc about the swelling as a matter of some urgency), 'cos if you've got the wrong diagnosis you could be being prescribed something you shouldn't be.