Fibromyalgia

pamaris

tatty wrote: »

Hi everyone havent been on for a while as the pain has been so bad and i cant sit for long .I go in hospital tomorrow for a discectomy for my disc prolapse and sciatica and i am terrified i have had a fibro flare up everything is hurting ,i got about 2-3 hours sleep last night and i am shattered.I keep crying everytime i think about the op and am feeling really sorry for myself.i worry abut everything so you can imagine what is going through my head -will i be ok for christmas, will my children be ok while im in hospital (they are 8yrs and 1yrs old)will i spoil christmas for everyone .I have a wonderful husband ,parents, family and good friends ,so i know that everything will be fine but i cant help feeling this way i have never had an op since i got my tonsils out when i was 11 yrs old .Hope everyone is ok and sorry for sounding so sad and down .claire xx p.s i too have hypermobility and raynaulds x x

Hi tatty. You really will be fine. The only ops I have had are 2 C sections- but I have learned some things from them. Mainly- be persistent- be very assertive regarding your needs- whether it is for a sedative or pain relief. Bring an advocate along who can bug the nurses to accommodate your needs.

Easier said than done I know, but try and rest as much as possible today, and pull out all the stops to get a good night's sleep- chamomile tea, Nytol, a long bath with lavender oil.

Remember also that this surgery is to help you. Imagine it going fantastically well, and actually sorting out the problem it is meant to address.

Lots of hugs and encouragement- you really will be better off after the surgery- just try and take it easy.

somebody_else

Tatty, and Pamaris, despite being one of the gobbiest posters on this thread, I came to the conclusion a while ago that I couldn't respond to every point that's made. I suspect that we're all the same - with the short term memory problems and the pain involved with sitting with a pooter things are going to get missed. I also think that we all accept that, and generally someone will responds to each point made so hopefully no-one feels like they're being ignored.

If there's a point you want to make - just jump in. If you wait for a gap in the thread, it won't happen.

Tatty - I really do think that you have every right to be uptight, upset and worried about your op tomorrow. If it's any consolation, I'm aware of a couple of other people (on other MBs) who've had this done and it's been very effective for them. Don't know if it's coincidence or if there's a link, but they also have joint hypermobility.

One thing I would advise after the op - do make sure that you're seen by a physio who gives you exercises to do afterwards - apparently this is very important with regard to keeping scar tissue to a minimum and optimise the the benefits of the op.

Pamaris - you really do need to sort out some pain relief. Quite frankly, paracetamol on its own is not going to be any help whatsoever. It's used for mild pain - I suspect you're well beyond that point now. [Having said that, I was given paracetamol in supposistory form many years ago after I had the brain haemorrhage, and it was quite effective mixed with injections of codeine and caffeine through the drip. Sorry, that's probably TMI.] Fingers crossed this time your GP will be more forthcoming. Oh, and if you're not eligible for free prescriptions, and you're likely to need more than 2 prescriptions a month, it's well worth buying a pre-payment cert. That way you won't have to worry about how you're going to afford it your GP starts you on regular scripts.

tatty

HI thanks for your replies it helps to talk to other people and get support ,i have kept it together so far for the sake of my 8yr old who is very worried about me but i have reassured him everything will be fine At least i dont have to go in until 3pm and his christmas play is on the morning so he is pleased that i can see him in that thanks again x x

Unity

Hi Pamaris and Tatty,

I thought I'd just try and reply without multiple quotes as it just makes for whopping posts - but of course I risk forgetting what I wanted to say - so apologies in advance.

Pamaris - I don't know of anyone who has be granted DLA without medical evidential support, sorry. However there's a tremendous disparity in the way you are treated dependent on where you live and unfortunately I only have statistics for towns near me. Inasmuch as someone in my town would have a one in eight chance of being visited by one of the GP's employed by the DSS, whereas in the next town it is one in fifteen. Someone I knew in the next town obtained DLA without having any medical examination at all :eek:.

The main thing with the DLA forms is not what you have wrong with you, but how it affects you. The famous part of the care component being 'Can you prepare a meal from scratch'. I was told by the visiting GP that I could manage if I had a perching stool in the kitchen and could get stuff out of pans using a slotted spoon. I replied that this would not help since it did not explain how to get a heavy pan to the stove in the first place! Furthermore I wrote to the DSS pointing out that it was not in the GP's remit to interpret legislation, merely to implement it:p. There is also of course the famous case of the lady denied benefit because she said she relied on packaged meals heated up in her microwave. Once again legislation states you must be able to prepare a meal from scratch, so she had to re-apply pointing this out.

More information is always the key. Think about how you do everyday things even down to getting tablets out of a childproof bottle or blister packs. I can't manage either of these (arthritis and RSI) so have to have someone else (DH) put my meds out for me. Because of my particular medications and loss of short term memory - I often forget what I have taken so he has to keep tabs. I did slightly O/D once by taking tablets in my sleep but that's another tale:rolleyes:.

Tatty - it is very easy to become overwhelmed by worrying about how others will cope when you are in hospital - but worrying is one of the least helpful pastimes and - if the likes of those who've written 'Creative Visualisation' books ('The Secret' etc.) are to be believed - dwelling on the negatives in some way draws them nearer.

I'm probably looking at the same op (had the MRI last week) but I reckon I'm doing a great job of not thinking about it :rolleyes: -- of course it's denial but it works for me:rotfl:. Just think in a few weeks time, when you are over the op and able to do a lot more than you could before. I dare say there will be lots of cuddles from both the children that would have been much more painful before - not to mention your DH;) and that'll be wonderful in itself :cheesy:.

Whereabouts is the disc - cervical, thoracic or lumbar spine? A friend had a cervical one removed and was up and about in no time. You have an awful lot of support there in your family and friends and that's invaluable, not to mention the lovely people on here. Just concentrate on getting well, the world will still revolve, your little 'uns will get fed, cleaned and cuddled and the house will not fall down whilst you are away - OK? .

We'll all be rooting for you :T.

Careful_with_that_Axe

Tatty, don't really have the brain energy to post more, but good luck. I'm a firm believed in the fact that the anticipation of something is worse than the actual event. This time next week it will all be over except for the recovefry. Not minimising your worry, just trying to be positive.

In case I forget later, good luck to the poster who was going to the CAB with her husband tomorrow. Fingers crossed they will be of some help to you.

pamaris

Unity wrote: »

Pamaris - I don't know of anyone who has be granted DLA without medical evidential support, sorry. However there's a tremendous disparity in the way you are treated dependent on where you live and unfortunately I only have statistics for towns near me. Inasmuch as someone in my town would have a one in eight chance of being visited by one of the GP's employed by the DSS, whereas in the next town it is one in fifteen. Someone I knew in the next town obtained DLA without having any medical examination at all :eek:.

I suppose I am just not sure whose "job" it is to support me, and what I should do to solicit their support. GP? Rheumatologist (who is MUCH harder to get ahold of than the GP)?
Fibromyalgia nurse (haven't seen yet; I presume I'll need to form a relationship with her first)? Do I write a letter and have them sign it? Do I ask them to write a letter? Or is there a specific form I need to give them? Or do I just make the application and wait for the medical exam?

I've probably already read somewhere what to do, but I don't remember!

somebody_else

You phoned that cleaning agency yet, Auntie Axe? Not that I'm nagging or anything, but you know that the anticipaiton is going to be worse than the event, don't you? :P

Careful_with_that_Axe

s/e, you have no idea how much I want to tell you to pee off right now!
Picking phone up in 3, 2, 1 ........

somebody_else

Careful_with_that_Axe wrote: »

s/e, you have no idea how much I want to tell you to pee off right now!
Picking phone up in 3, 2, 1 ........

Have you phoned them yet, Auntie Axe? Have you phoned them? Gowan, gowan, gowan, gowan, it'll be so worth it once you've got a shiny, sparkly tide home.

Careful_with_that_Axe

Just left message on her mobile. So nerrrrrrrr!

She's a lovely lass who helps out some people I know so, although slightly expensive, does a good job and is completely trustworthy.