Fibromyalgia

welshbit

bigzippy wrote: »

Thanks for your reply Claire
The wedding is September next year :T
I'm very excited - can you tell?
I've decided that I don't care about tall uncomfortable shoes, I don't want to drag a heavy dress around, I'm not bothered if people catch a glimpse of blue fluffy slippers underneath my wedding dress at the venue and I'm not bothered if I do a posh&becks style throne receiving line(!) - if I have to sit down then !!!!!! it. The people that are there should know/care and if they don't then I'm not arsed about them anyway :rolleyes: I'm not going for massively posed photos cos I don't think I can deal with standing around for much and I'll get bored We're not having a long drawn out affair either - church, speeches, buffet - bish bash bosh! Can anyone think of anything else I could do to reduce stress/strain?
I'm worried about any boning/bodicing on the dress (which flattery wise I more than likely need) and energy for the honeymoon... did you leave a gap between wedding and honeymoon (if you had one).
What would you have done differently if knew then what you know now?

I love your attitude, and it's so right I wish I could put that into practise sometimes. I feel guilty about everything (root of my depression).
You sound like you're going to have a great day, and have thought it through. I wouldn't go for boning/bodicing on the dress, sounds painful to me. Your fiancee loves you for you, the last thing he'd want is you being in pain due to your dress squeezing in the curves he loves. It is a big enough day, mentally and physically, without taking such a risk. On the other hand if it makes you feel better then you'll feel more confident and less stressed, which would help the FMS too. I get so exhausted when I'm stressed.
Whatever you decide, I'm sure you'll have a lovely day, congrats and best wishes, plenty of time to make decisions yet.

welshbit

bigzippy wrote: »

Congrats on your engagement! :T I'm somewhat envious of your plans tbh, although I also know that if I don't see anyone on a set day I won't get round to it cos I'll probly turn into a hermit again!

Thanks for your congrats I think the only way we can get away with our plans is because we are both hermits. I only have 3 family and 1 friend + hubby & kids to invite for a meal down here. Andy has a small family too and only a few friends in Liverpool. Also because of the FMS I don't manage to get to Liverpool as often as I would like too, not been since last Christmas :eek: We had to stop in hotel half way up and back then, I couldn't phyiscally drive the whole journey. So when we do get there after we've got married it'll be a good chance for all of us to out for a meal. (At least I won't feel guilty for not being able to cook that night) Also we are both quite shy and don't like a fuss, so it really does suit us.

bigzippy wrote: »

As for the depression vs FM - I'm not depressed. That's not to say that I haven't, in the past, been labelled with it or it's counterpart Stress - but I kicked the antidepressants about 8 years ago now and haven't dipped back under that black cloud since (well not properly IYKWIM). Looking back now, I don't think it was depression in the first place - it was pure frustration with my circumstances and illnesses at the time. I have (since and while being diagnosed with ME) been assessed by CMHT and such and they agree that I'm not depressed.

Hope this helps in some way...?

That really does help, at least there is hope if not for me, for others. My depression is unipolar (bit like bipolar but without the mania) and I know it's with me for life. I do have a bit of light and shade IYKWIM but when it gets too dark I change to different med. Apparently I've done the lot over the years but sometimes a change helps. (GP is ex psych and lets me help make decisions about meds)
The Frustration of this illness is immense isn't it? I can feel it boiling up inside until one little thing makes me boil over, usually it's tears. (last week in tesco) It would be lovely to be up a mountain (god knows how :rotfl: ) and have a good scream. I suppose sex would be good for that too, but with no libido I think the mountain (not mounting) is more likely. Thanks for raising that subject by the way CwtA, I'd been wondering about that for sometime, could be meds, pain, fms, but at least I know I'm not alone.

bigzippy

welshbit wrote: »

I love your attitude, and it's so right I wish I could put that into practise sometimes. I feel guilty about everything (root of my depression).
You sound like you're going to have a great day, and have thought it through. I wouldn't go for boning/bodicing on the dress, sounds painful to me. Your fiancee loves you for you, the last thing he'd want is you being in pain due to your dress squeezing in the curves he loves. It is a big enough day, mentally and physically, without taking such a risk. On the other hand if it makes you feel better then you'll feel more confident and less stressed, which would help the FMS too. I get so exhausted when I'm stressed.
Whatever you decide, I'm sure you'll have a lovely day, congrats and best wishes, plenty of time to make decisions yet.

Thanks Welshbit - trust me it's taken a long time and a lot of support to get to this point! And I have the habit of talking the talk... :rolleyes:
My fiance and sister in law are amazing and pull me up when I start to get carried away with my plans and schemes. I feel sometimes like they're the only ones who get the ME/FM etc. I think I'll have to decide on the dress bodiced-ness when I actually try some on... I do get a lot of "chest" pain sometimes - which they originally thought was mastitus (I have no kids thanks v much!) :eek:

Thanks for your thoughts - I'll keep you posted

bigzippy

welshbit wrote: »

Thanks for your congrats

That really does help, at least there is hope if not for me, for others. My depression is unipolar (bit like bipolar but without the mania) and I know it's with me for life. I do have a bit of light and shade IYKWIM but when it gets too dark and change to different med. Apparently I've done the lot over the years but sometimes a change helps.
The Frustration is immense isn't it? I can feel it boiling up inside until one little thing makes me boil over, usually it's tears. (last week in tesco) It would be lovely to be up a mountain (god knows how :rotfl: ) and have a good scream. I suppose sex would be good for that too, but with no libido I think the mountain (not mounting) is more likely. Thanks for raising that subject by the way CwtA, I'd been wondering about that for sometime, could be meds, pain, fms, but at least I know I'm not alone.

Think it's just you and me tonight Welshbit

Sounds like your plans make sense for you and that's the most important thing. I'm sure you'll have a great time no matter when you manage to pin him down to :rotfl:

Glad it helps Have you thought about a pain diary? Or whatever it is that gets you down the most? Then maybe if you recorded the variations - with relation to whatever's going at the time (change in meds or diet or cycle or activity levels?) maybe when you look back you can see some trend patterns to take encouragement from? Just an idea I tried a few months ago when I got really frustrated - might help you feel like you're taking some control back too..?

I saw someone post on a group board (for ME) that they go do kickboxing to take their frustration out... now I'm not one to judge how other people deal - but I have *no* idea how on earth she got the energy up for kickboxing! :eek:
Someone else bought cheap plates to throw about the place

welshbit

bigzippy wrote: »

Think it's just you and me tonight Welshbit

Sounds like your plans make sense for you and that's the most important thing. I'm sure you'll have a great time no matter when you manage to pin him down to :rotfl:

He read what I wrote and said "we're getting married?" good job he was laughing :rotfl:

bigzippy wrote: »

Glad it helps Have you thought about a pain diary? Or whatever it is that gets you down the most? Then maybe if you recorded the variations - with relation to whatever's going at the time (change in meds or diet or cycle or activity levels?) maybe when you look back you can see some trend patterns to take encouragement from? Just an idea I tried a few months ago when I got really frustrated - might help you feel like you're taking some control back too..?

I have kept a depression diary in the past and I know a lot of it is down to guilt. Guilty I can't help my Nan and parents more as they get older; Guilty about the state of the flat; Guilty cos I feel Andy is lumbered with me - He knew I was ill, we've lived together over a year and he loves me more and more, but I still feel like I'm spoiling his life. Guilty about not having sex; I think you get the idea, I even get guilty about stray cats that are starving which is why we now have 3 cats, but I don't regret that "scrawny" has turned into a lovely big teddy bear now :T
As for a pain diary, I've tried but I get too depressed to keep going with it.
I do keep a meds chart though (hospital pharmacist was well impressed) I don't write all my meds on it but painkillers (so I can keep 4 hours apart) MST (morphine tablets) have to take every 12 hours exactly. It's also handy for the pharmacist to see how much top-up morphine I have (Oramorph) a week and also diazepam - I don't want to get addicted but it is a good muscle relaxant. It's great when I've got the fibro-fog and can't remember what I've taken. I set it up as a spreadsheet if anyone is interested.

bigzippy wrote: »

I saw someone post on a group board (for ME) that they go do kickboxing to take their frustration out... now I'm not one to judge how other people deal - but I have *no* idea how on earth she got the energy up for kickboxing! :eek:
Someone else bought cheap plates to throw about the place

I have the same reaction as you, if I had the energy to do kickboxing I wouldn't be so frustrated in the first place! Could think of better things to be doing with that energy too well if the libido could increase too :rotfl:

Off to bed now, cos Andy's waiting up to help me. Night all, sleep as well as poss.
Ali xx

bigzippy

You too Ali. Sleep tight
You made me smile anyway

somebody_else

Sorry, can't find the post that referred to it, but for those of you who have trouble getting in and out of cars. Have you come across one of these before?

http://www.nmsdirect.co.uk/turntable-turning-cushion-p-201.html

I was issued with one via social services some time ago. I will say that it takes a while to get used to it, and to learn to let the cushion do the work, but I wouldn't be without mine now. Especially if I have to park the car somewhere where I can't open the door fully.

ailz95

Hi All,

I, too, have fibro - with a few other things - I've been on the sick since 1994 (for my 40th birthday I got a sick note) and in 1996 my husband became my carer, as I was having serious panic/anxiety attacks. We get Income Support, Invalid Care Allowance (or pittance), DLA care component and a mobility car.

I'm going to ask my doctor about a thyroid test as I sleep about 16 hours a day sometimes.

Nice to meet you all.

Unity

bigzippy wrote: »

Dude - that sounds G. R. I. M! :eek:
I'd heard that they reckons fibro was caused by lack of REM sleep etc hence the amitripyline etc drugs that supposedly help relax you into such states etc (but please don't quote me!) - I've always had problems with sleep. Too little, too much, the wrong kinds, the wrong times... you name it. IMHO I think the sleep disorder side is/can be affected by my ME and such - and the fact that I can't do much in the way of expending energy - so really your brain etc isn't ready for sleep... if you see what I mean? Not that that explains how I'm so tired and can drop off or sleep so long... but you get what I mean... I think?(!) :rolleyes:

Hi Bigzippy - It's 'dudette' btw - the photo is of actor Henry Cavill who I'm nominating as the next Dr Who .

The big sleep debate in that book I mentioned is that some of us fibromites have too much REM (Rapid Eye Movement/Dreaming sleep) and not enough Delta (restorative) sleep. This is when the mind and body repairs itself and is thought to be one of the main causes of muscle pain, because we never reach that stage in sleep where repairs can take place. The marines in the tests were woken up throughout the night, during the seven nights the tests were on and they all experienced muscle fatigue and associated fibro symptoms.

Just to add to what others have said, In terms of treatment, Amitrip made the nightmares worse (but it’s a known side-effect), Gabapentin and Pre-gabalin made the lumbar pain worse and affected my moods. Tramadol, Meptid and Keral all gave me problems due to my abnormal hypothalamus and its way of metabolising drugs. I now manage with morphine patches applied every 72 hours, and an apm XPain 2000 TSE unit. My local hospital’s pain clinic basically wrote me off and offered the Pain Management Programme, just reinforcing my own findings after 30 years of coping :rolleyes:.

However a consultant in the next city agreed to do facet joint injections in my spine. I had these earlier this year together with a transforminal epidural (both with X-ray guidance). They have helped me to get back some quality of life although the epidural didn’t flow as expected due to the bony growth, so my sciatic nerve is still really painful. I am able to walk a little now and that’s a big improvement on being permanently wheeled.

I’d definitely recommend Tempur mattresses, we got an electric bed – well it’s like two singles joined together really – but it means I can adjust my side independently which does help with the pain. I swap pillows around depending on where is hurting most - but I found a lot of relief with a Mediflow water pillow which provides great cushioning for the top of my spine where the osteophytosis affects it.

I would just say to everyone – don’t give up, on both getting the best treatment for you - and on claiming DLA. It’s often hard to remain positive – but try and keep both body and mind active, within your limitations :j.

Fortunately the rheumatologist I used to see was a fibro expert until he retired. I had to fight hard to get my DLA (at the time they believed FMS was all in the head :rolleyes:) and harder to keep it because of mistakes being made. I had to get my MP involved and take the matter to the Secretary of State. Therefore if I can help in any way – please just ask;).

raeh

hi everyone, after a morning back at work i havent much chance of making any sense here but il try.

thank you all, i will go for the BB

somebody_else thanks for that link i have a lot of trouble turning round in the car due to my back and a problem i have with my neckand getting out is never an elegant sight lol

bigzippy my sister wore white crocs under her wedding dress

im not sure what else i wanted to reply to or to who now

oh the depression, i have always said im not depressed but as someone else said its more frustration... i carry on and on and try to be everything i feel i should be to dh and to the kids and then it all gets too much and i flip i cry over silly things and just feel like i cant go on, iv never actually said this to anyone else but i sometimes just feel at those times that they would be better off without me

kickboxing??? :eek: the energy to get upstairs without almost crawling some days would be nice

have a good one everyone, i need a rest now before the kids descend back on me