Fibromyalgia

bigzippy

beeka wrote: »

Plus, can't remember who posted the spoons theory link, but that has to be the most helpful thing I've ever come across!!! I'm gonna send it to all my family and friends because they have a really hard time understanding it all I think, and I can understand that, but that theory expresses it beautifully!

Anyway, sorry, rambling on, the question I really wanted to ask is of those of us on amitryptiline - have you found you've gained weight or have a swollen tummy? I had my gallbladder taken out last year and then managed to put some weight on which I needed to as I was too skinny. However, I now have a very swollen tummy and my face is very round (and I heard that some heavy drugs can make that happen) and I was just wondering if anyone else had experienced the same and whether it's likely to be the drug or not - I'm not fat but I can't get my tummy to deflate! :rotfl:

Ta for reading and feel free to ignore my ramblings if I'm too boring :D

Hi beeka -
I posted the Spoons Theory and I'm so glad it helped you :T - it was a Godsend for me as my family and friends really didn't get it and I was fed up with trying to explain it!
Also, I'm on amitriptyline and have put on weight and have stomach problems, but assumed it was my IBS...? :rolleyes: Could be either - but I'm not loving the fact that I'm not able to do much exercise and don't eat well (cos i don't have the energy to sort meals out properly) so can't see a way to lose my extra weight for my wedding next sept! :eek: Anyone got any ideas?

bigzippy

raeh wrote: »

I keep correcting my typing like someone else said as i miss out letters but sometimes i just 'lose' what i was typing and have to stop and think... the fibrofog as i have just read about, im like that in conversations sometimes i just lose what i was saying and im sure people think im drunk lol. My memory is absolutely awful, i just cant remember the word for things.

I agree with the person who spoke about other people attitudes, im not old.. i dont 'look ill' so noone sees the pain do they? I get tired of the people that smirk when i say i CANT do something, they just dont understand its impossible for me. My husband and kids have adapted to the fact that i just cant join in doing some things but theres lots we still can do together. My arms are the worst for me and im very clumsy holding things and sometimes things just fall from my hands [im well known for being accident prone at work lol]

I only manage that due to now having the motability car as before i wouldnt have managed the getting to work and back, Im not able to claim any care component of the DLA so i would be interested in how people claim that but im greatful of the mobility part.

Hi raeh
I agree - I often type complete nonsense, have to correct what I@m typing all the time. Forget completely what I'm saying halfway through a sentence.:rolleyes:
It's really annoying when people come out with "yeah I do that too, it's normal" type thing - cos they don't actually realise that there's a difference between "normal" forgetfulness and the "fibrofog" forgetfulness.:o
How did you manage to get mobility but not DLA? If you're struggling to keep hold of things and are clumsy/dropping things then you should put that on your DLA form - if you can't hold something like a pan of hot water or a bag of spuds then that all counts, as it goes towards your ability to prepare and cook a main meal for yourself - if you can't do that you qualify for the lowest level of DLA care, which amounts to about £17 a week. I managed to get this part but not managed with the mobility or any higher levels of care...I'm thinking about appealing - which at the moment seems like a massive hassle :mad:

bigzippy

redbull08 wrote: »

Hi
I have FM
Ive been in a few car accidents (not my fault), last one car was a write off, guy ran into back off me
i never related FM to accidents
also have LCIS (4 OPS) & now thyroid nodules
i go for needle biopsy on thurs, but they say my thyroid is ok?
can you get DLA for FM alone?
i have arthitis & IBS as well as other ailments.
im tired ALL the time, no energy, live with a LOT of pain
i am going to try & take a job as Ive not had benefits.
great thread thanks

Firstly - you don't have FM alone, as you have other conditions that affect you. Secondly they don't really go on what your conditions are (although it helps to have labels) but how your conditions affect you - if for instance you can't do the basic steps required to make a meal (break it all down in your head, from shopping and carrying, to standing there chopping, boiling, lifting etc) then you are eligible for the lowest level of DLA.
Hope it helps

bigzippy

raeh wrote: »

i love your thinking :T i did the same recently, bought a pair of shoes for a night out [only have about 2 a year so pushed the boat out] and figured they were far too high to walk in but as i cant walk far anyway what the heck :rotfl:

I highly recommend the "crocs" style garden shoes by Town and Country - they are basically made of one piece of foamy stuff with a leather insole and are the comfiest things I've ever worn - they slip on and off too cos they're almost backless, so no more bending down in pain to put shoes on! Yay! :j PM me if you want more info - seriuosly - they're ACE. My OH is really jealous that he can't find them in man sizes :rolleyes: (Plus they're much cheaper than Crocs too (only £9.99 from memory))

bigzippy

Careful_with_that_Axe wrote: »

Not at all beeka. I wonder if I'm alone in being a very late riser?
I struggle to fill my days sometimes without the structure of work and find that in the evenings I'm more comfortable (as I've more pain relief on board) and can entertain mysef with TV etc. So I tend to stay up til 1ish and then, partly due to the "disease fatigue" can easily sleep 12 hours.
I try to get up before 11am, but then mooch about for several hours until meds kick in.
I am constantly being criticised for this by my Dad who is a very early riser and I do sometimes think I'm out of synch with the normal world.
It's partly fuelled by living alone (apart from the moggie).
I've never asked about this before, but am I alone in doing this?

You are definitely not alone in this! My parents are always quick to quip with "you should go to bed earlier"... which of course drives me crazy. :rolleyes: My CBT therapist is also getting on the bandwagon and thinks that naturally we're suppose to rise and fall with the sun... which is ok in theory, but I don't see it happening for me!

beeka

eeep! People have replied to me! I'm not used to this! Tis quite strange as I don't normal 'chat' this much online

Ok well, bear with me cos I'm going to have to check who said what...

@ raeh - yes and yes - I'm definitely going to go for it and am hoping that the support I'm getting through this is going to make the difference, I think it will Also, yes I am guilty of trying to sort myself so that those around me don't get a true idea of how life is for me. :rolleyes: I'm getting better though, partly because hubby jumps into conversations with 'are you sure you can manage that along with everything else' as I'm about to volunteer for baking 15 cakes... :shocked:

@ careful - seconding the hot bath here! :beer: enjoy it!

@ big zippy - THANK YOU!!!! :j that theory is fantastic - I even told my specialist about it and she made a note of the url, it really is *that* good! As for the amitryptiline and tummy - I have tummy problems and still put it down to IBS as well as having had my gallbladder and lots of stones removed. However, it was when I started the ami that my tummy started swelling and I'm probably about half a stone heavier than I should be, which is nothing really, and I shouldn't be bothered but I think it's the problem of being one size all over and then one or two sizes bigger round my tummy some days. Never mind though, maybe it'll sort itself out once I get off the drugs! For tips to move the weight, if you've got the space to move in the Wii Fit thing is great - you can work at your own pace without all the class looking round to see why you're getting special treatment :rolleyes: - it has a lot of gentle yoga stuff that I do when I can't do anything else, I'd definitely recommend it although you do need a bit of space but not tons.
Oh and I'd like a url for the shoes

bigzippy

Sorry guys - dominated a little!
I read through from when I was last on and felt the need to reply on my way through or I would've completely forgotten what I was gonna say! :rolleyes:
Hope it's a good day today

bigzippy

beeka wrote: »

eeep! People have replied to me! I'm not used to this! Tis quite strange as I don't normal 'chat' this much online

Ok well, bear with me cos I'm going to have to check who said what...
@ careful - seconding the hot bath here! :beer: enjoy it!

@ big zippy - THANK YOU!!!! :j that theory is fantastic - I even told my specialist about it and she made a note of the url, it really is *that* good! As for the amitryptiline and tummy - I have tummy problems and still put it down to IBS as well as having had my gallbladder and lots of stones removed. However, it was when I started the ami that my tummy started swelling and I'm probably about half a stone heavier than I should be, which is nothing really, and I shouldn't be bothered but I think it's the problem of being one size all over and then one or two sizes bigger round my tummy some days. Never mind though, maybe it'll sort itself out once I get off the drugs! For tips to move the weight, if you've got the space to move in the Wii Fit thing is great - you can work at your own pace without all the class looking round to see why you're getting special treatment :rolleyes: - it has a lot of gentle yoga stuff that I do when I can't do anything else, I'd definitely recommend it although you do need a bit of space but not tons.
Oh and I'd like a url for the shoes

Lol - I know that feeling!

And I third the bath

I've thought about the wii fit thing - I think me and OH are going to go halves on one for christmas to each other :rolleyes: I've heard good things about it but wasn't sure if it was worth the money (aw c'mon it is an MSE board )
I'll look up the shoes URL, I got them from my local gardening centre so bear with me...

bigzippy

Beeka:
shoes URL :
http://www.wyevale.co.uk/Town-and-Country-super-soft-cloggies/0810017106,default,pd.html
(funny thing is they're not on the Town & Country website - but I think they're out of season - the winter ones are much heavier and rubber (I think)
mine are BRIGHT green (as the choice was BRIGHT green,blue or pink at the time) and hadn't found a men's range for my OH so glad I now know they sell them! Because they're made of the foamy stuff they're also really light (ace for walking) so might cost relatively little in P&P? They might not look the most fashionable thing in the world, but when you're in pain you really don't care eh? Plus they're easily washable (just take out the insole and run under the tap!) and waterproof (maybe I should sign up as their marketing ad..? )
Hope it helps - let me know how you go on?

bigzippy

Beeka - mine: http://www.birstall.co.uk/products/tfw627-631.html