fibromyalgia

[pixi]

I've had fibromyalgia since I was a kid, over 30 years now.  90% of the time I can cope with it even when its really bad, I manage to do a part time job and look after the house etc, but there are times when I really feel I can't cope at all (eg I get frustrated to the point of tears when I can't do something simple one day like pick up a cup of tea that I managed to do the day before)  Is there anyone else on AB who has it and if so how do you cope with the bad days?

[Firiffic]

AAhh but pixi it's winter over here!  I do feel a bit better today.  I told my Mum about what you said about the fridge and she laughed too.  "Just like you!" 

 

Do any of you get burning on the soles of your feet?  I have always suffered from cold feet and I still do but now sometimes at night the soles of my feet will burn like they are being held up to a fire and I have to stick my feet out of the bed.  Only started happening after I got the fibro and only in the last few years.

[Robinia]

Hi all just popped back to see how everyone is doing.  I'm having a really bad day today with the heat but pixi has kindly 'virtually' cleaned my house for me this morning!!

Firiffic I've just noticed that you're no longer green! It's not easy being green. (you need to be a Muppets fan for that one!). Yes I do get the burning feet, it feels like someone is standing on them.  Today I've got what I call FAF (fat arms feeling - I said ARMS, pay attention hehe, it feels as though my arms are like popeye's.  Bit odd when the rest of me is Olive Oyl)!!

Hope work wasn't too gruelling today pixi!

[pixi]

Hi Friffic and Robinia yes I get the burning feet.  I get burning sensations in my knees, arms and wrists too it feels awful, doesn't hurt more annoying than anything else. I know what you mean Robinia about the fat arms feeling, is it like your arms are really swollen and heavy and tired?   Again more annoying than painful. 

 Work draaaaagged but only 2 more days to the weekend. I was really sore at work cos I was getting out of the bath yesterday and my knee gave out.  I went proper flying, I crashed back into the bath and landed really heavily.  Although I didn't hurt myself really badly, I hurt the bone in my right bum cheek, my left knee, ankle and elbow  and my right wrist.  Its pretty sore but I'm laughing about it now.  I cant sit comfy as I hurts a bit on both sides of my body.  When I recovered from the shock (and cleaned the tidal wave of water from the bathroom floor) I phoned my husband feeling sorry for myself, he replied 'thats it you are having a rubber bath mat for definate' (hes threatened before but I always talk him out of it)  Now I will be like 'little old lady' at bathtime.  Whats next I wonder?  Bath Chair? Bath Lift? Vin Diesel as my personal bath attendent to keep an eye on me?  Yes the last idea is my favourite.

[pixi]

Is it just me or does this happen to you too?  I always forget what time I have taken my tablets.  Then I darent take any for hours and hours just in case.  I always mean to look at the clock when I take them but I forget, also I plan to take them at the same time every day but still forget.  My memory is shocking.  The brain fog began as a slight mist then turned to fog and is now a full blown pea souper.

[Robinia]

Oh ouch pixi! Think you need to give Vin a call! I'm lucky I haven't fallen downstairs many times - my knee often gives way, usually on stairs, but it happened on a crossing a while ago - loads of cars - luckily I managed to stay upright!  I just hope none of them could lip read as I mumbled several swear words to myself!

I really don't know the answer to the tablet thing - I do it all the time.  I've tried writing it down & then I think 'Is this today's or yesterday's time?'  If I make a chart I forget to mark it off.  The assistant took ages to explain something to me in the post office this morning - all lost now in the haze!!

[pixi]

Hi Robinia at least its not just me with the tablet thing.  I too have fallen downstairs quite a few times and its also happened while crossing roads, now when I go to cross the road I have to make sure there is absolutely no traffic in sight just to be on the safe side.  I get funny looks from people that are sauntering across and I'm just standing there cos theres a car 500 yards up the road.  Thank god for pelican crossings.

[Firiffic]

How are you all today?  I mostly take my pills in the morning and at night so I don't really struggle but if I need to take extras I just make sure that there will be enough time till my night ones.  Plus I've taken medication since I was 2 so the habits are pretty well formed!

You should definetly get those non slip mats.  I  hate having a shower without one!  And I've always used them even before the fibro.  I was also using a shower stool until early this year.  I'm nearly 36 and I don't think that's old so I don't think that using safety aids is just for the aged.  Go forth and be safe!  :->

[Firiffic]

Oh and Robinia did I used to show up green?  I'm rapt about that.  Green is my favourite colour and I certainly got your Muppets reference.  My friend sang "Rainbow Connection" for me at the pub he sings at last night!  I want to be green again, I wonder how I do that.

[Robinia]

Sorry Firiffic but you are now a fully fledged ABer & destined to be grey for the rest of your days on here!!

 I wonder whether pixi is green? She's never said....are pixies green all over or do they just wear green?

 

 

[Mistopheles]

Pixi - my partner bought me a pill timer, which is really good. It holds your tablets, and you set the clock on the front every time you have a dose, then it beeps to remind you when to take your next dose. It's been really helpful for me, as I always forgot to take mine until I was in agony!
Have a look at www.expresschemist.co.uk

[pixi]

Hi all

Firiffic you have made me feel better about the bath mat - we are going shopping today to pick one up.

Robinia Although us pixies have to wear green clothes, we aren't green all over, unless I feel sick that is then I go very green, even on my pointy ears.

Mistopheles what a brill idea, I'm going to try and buy one today. 

Hope everyones feeling okay today and relaxing over the weekend because thats what its for.

[pixi]

What a great invention.

Last night my husband bought me a HUGE bag of minstrels. I was determined to open them myself.  You get the picture, you have to open them like a bag of crisps, you get the best grip you can (which is a joke in itself) then you pull and nothing happens cos your wrists aren't strong enough. so you get a better grip and pull harder and still nothing.  This goes on 3 or 4 times so in the end you give your bestest ever grip in the world and pull with your ELBOWS and bang the bag splits and the sweets go everywhere.  They may not melt in your hand but they sure melt allover the sofa and carpet before you manage to pick em up.  Anyway this bag had a dotted line at the top and said easy opening pull here.  Yeah alright thinks me and carefully gave a little pull on the dotted line.  The bag opened dead easily.  I was chuffed.  So now ladies we can have chocolate when noone is around to open it for us.

*runs to shops to buy minstrels in bulk*

[Firiffic]

What are minstrels and where in the world do you live?  I'm much better about these things these days.  Still struggle with a can opener sometimes though and if I'm cutting hard things like pumpkins (I make wicked pumpkin soup!) it is painful but I have a new aid thing that allows you to put pressure on the end of the knife.  I haven't tried it yet but I'm confident it will be brilliant.

Pleased to hear about the mats.  Safety safety safety!  My Mum bought this cool non slip mat for the bathroom floor that is a purple fish.  I love it!

Have a great day!

[pixi]

Hope we are all feeling ok.

Firiffic minstrels are like giant smarties (lovely blobs of milk chocolate covered with a crispy chocolate shell - just in case you dont have smarties where you live) The advert says they melt in your mouth not in your hand.  There should be a disclaimer saying they also melt all over soft furnishings

[Firiffic]

Hey Pixi yes we do have smarties and pebbles which are similar and jaffas and M&Ms which I thought also had that slogan.  Yummy!  I don't think they would end up in the furniture as I wouldn't let them and also my dogs would eat them before they did.  MMMM chocolate!

[Mistopheles]

Firiffic - where are you from? Somewhere in America by any chance?

[Firiffic]

No Mistopheles. I am in New Zealand.  Where are you?  Why did you think I was in Amereica?

How is everyone today?  I am determined not to be up so late tonight but I have at least made my husbands lunch already.

[doreen steel]

hi i have only ever met one other person who has this apart from me so its really nice (dont know if thats the right way to put it) to hear from other sufferers i find the hardest part is like you all say people not understanding and telling you that you look good even when you fell like **** that bit about not being able to hold a book for too long i know about that i get pins and needles and numbness just talking on the phone have started to put it on loudspeaker just so that i can enjoy a conversation without changing hands every two minutes i cant take the drugs because i have asthma (cripes not got a lot going for me here have i) just as well im a kinda cheery person or i would shoot myself ha ha somedays the memory is just useless  i manage to work nightshift four nights a week (i need the money) but on my days off im useless cant pick up energy never  mind a cup and i get the burning feet as well  think ill leave me to medical sciencd ( oops sorry for the mistype hands are getting sore my wrist is really bad if i keep my hands in any position too long well i better go now but keep your chin up who cares what other people think we know and thats enough bye

[Firiffic]

Welcome Doreen.  I also have asthma!  I've had asthma since we came to New Zealand when I was 18 mths old.  In fact, my lovely Dr joked the other day that I was lucky to still be alive!  I'm also pleased to hear about the burning feet thing!  I am not alone. I too am generally a pretty positive person although I have suffered from depression off and on through my whole life.  I have a really shocking immune system too because of years antibiotics to keep me alive. 

Anyway have a great and pretty pain free day all of you beautiful people.

[pixi]

Hi all and welcome to doreen, sorry to hear that you too have this horrible condition.  Whenever you feel like a chat or moan or whatever you bob on here, I check regularly and think the other girls do too.

Hey laydeez, I have just heard on the news that there is now a proper blood test to find out if you have chronic fatigue syndrome-apparently they have realised at last that it isnt all in the head as previously assumed.  Well done medical research-bout bl**dy time.   I am gonna leave it a month or so then go see docs and demand big time the test.  Fortunately my doc believes in fibro (one of the few) so I should be able to get him to give me the test no probs.  (hopefully)   anyway have a lovely day everyone, and hope you are all well today