what to say

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what to say

Postby pegasus2806 » Tue Apr 18, 2006 1:55 pm

hi, im just wondering if you guys have any idea what i should be pushing for with my doc, he syas i prob do have fm but he wont def say yes, i have to go back to try and change my pain killers as i have been up for 48 hours straitght as the pain is so bad, any ideas would be good as all i get now is ah well what do you want me to do about it.
me i am i wish not
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Postby Joo » Tue Apr 18, 2006 3:28 pm

Here I go again, yawn if you like!!! :roll: Get your doctor to listen to his boss, the NHS cos they actually recognise Fibro so he should get his act together but like 99.9% of us, you'll be the one to teach your doc what it is!!! :shock:

Next.....get him to agree to receive a doctors pack from the Fibro Assoc UK and make sure he gets one by contacting them yourself or his receptionist can request it but I had to do that myself eventually so just cut to the chase!! but you must get him to say 'yes' first (usually no prob).

Have you seen your hospital Rhuematologist yet? They quite often have courses for fibro peeps, if not, tell them to catch up with the rest of the world!! They are also the most likely to help with the drug side of things.

Next, look for the 6 week pain management courses that are run in your area, (think they're all over the UK). If you have probs just ask me cos a friend of mine runs one and I'll get you info.

Other than that, basic rule of fibro......it won't kill you!!!!! Second rule, SMILE, cos it's definately a better feeling than pain!!! :D

Joo x hope you get something useful out of that lot!!!!
Smile - you might as well and it makes better looking wrinkles!!!
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docs

Postby pegasus2806 » Tue Apr 18, 2006 7:04 pm

hi all, i wne to the docs but it was no good, they did not want to listen ll they said was i would have to wait over a month to see the pain clinic again, presicibed me more sleeping tablets whic dont work, ever had that feeling of oh well nobody cares so why should i, well thats kinda how im getting, i really dont know where to turn, help please


Take CAre All

Richie
me i am i wish not
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Postby Joo » Tue Apr 18, 2006 7:53 pm

Richie, you really need to try and get some help. Maybe a different approach to your usual? Stand outside yourself (mentally of course!! :lol: ) and see what you would want to hear if you were sitting in that doctors chair, worth a try maybe? And are you doing the usual 'help yourself' type of things? Making yourself comfortable, using your meds regularly, eating a healthy diet etc? It takes longer with FM for most things to work so try the 3 things a day plan first, starting tomorrow, (sorry 'bossy' head on!!) Choose what you NEED to do and list them, no more than 3 tho', then tick them off as you go. I think having small goals really takes your mind off the pain and play some funky music whilst you work thru that list!!!!

Hope you feel a bit/lot better soon, Joo x :wink:
Smile - you might as well and it makes better looking wrinkles!!!
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Postby mairi » Tue Apr 18, 2006 9:03 pm

Richie, I typed a longish message for you this afternoon but it did not post unfortunately. However Joo has advised the same.
Have you got a relation, other than your wife, or a friend to help out? It sounds as if you need complete rest for a bit. Easier said than done I know but essential if you are not getting sleep as it is vital for us.
What is the situation in your area? Are you so rural it is nigh on impossible to change GPs or might you have some kind of choice?
Mairi
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Postby mairi » Tue Apr 18, 2006 10:37 pm

Joo, given that on bad days, getting up, washed, dressed and feeding oneself is the most one can do (really bad days are spent in bed/on the couch) what, outside of those things, would you consider as three things to give as examples to the newly diagnosed? I find this difficult. I know what I can manage but everyone is different.
Something physical, ie to do with the laundry or tidying up, something mental-that often has to be essential paperwork but it need not be, something pleasurable ie part of an interest/hobby spring to mind.
Those suggestions are not so good for people who live alone and have to manage themselves, their home etc. Have been asked so often by ME and fibro. sufferers the question of how to cover tasks and have some little quality of life. Can you give some examples of what you consider as three things in a day so people can get an idea of the size of them?
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thanks

Postby pegasus2806 » Wed Apr 19, 2006 12:12 am

hi, thanks for all your replys, i will keep pushing, i am considering changing docs, it might be my only choice, but decidedt to take one day at a time and no more, thanks again guy

Take Care
Richie
me i am i wish not
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Postby Joo » Wed Apr 19, 2006 12:18 am

Hi there Mairi, hmmmmm good questions. I can only suggest from my own experience, so, for me that can be sooooooo diverse (as it is for all of us) If I'm on a really bad day it would be gentle stretching at certain times cos that will only do me good and make me feel a bit better mentally. Making sure I have something to eat, that can involve ringing a neighbour who has a key and asking for help. She will then know it's a bad day and she makes me a drink or comes to chat etc. (Although I'm married, my hubby works away often so I understand the problems of being on my own.) And then a third goal could be making mental lists of things to do when I'm well enough. When I'm bedbound, I try to realise that my body HAS to go thru this bad stage before it feels better, so I use the time as constructively as possible and look forward to the next recovery stage cos it DOES come.

As for average days, I like to craft so I have a project and complete something or come on here and answer ALL my emails!! (Thats not done!!) and I like to make sure the kitchens clean and tidy before I go to bed. Not a lot I know but some days I just run around doing lots and others I just need 'tv' days. Not a lot of help to you really Mairi but thats my life and what I do! :roll:

How about you? How do you spend your days? And any others who read this perhaps?

Joo x :wink:

I almost forgot the smile!! :lol: I do that rule regardless!!!! My friend who died recently had a favourite word for when she was feeling REALLY bad, and that word was whispered in my ear several times when we'd been called to her final moments, this happened 3 times!! I won't say it cos it's too rude for here but it began with an 'A' and on her coffin at the church this white floral 'A' was truly resplendent and those who were close knew what it meant!!! It was her final 'smile' for the world she was leaving.........thanks to my mate Pam, I learned a long time ago to use my smile EVEN in pain cos it's what you get remembered for!! Who wants to be remembered as a miserable ole g*t?!!!! Not me!!! :lol: :lol: :wink:
Smile - you might as well and it makes better looking wrinkles!!!
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Postby elaine ann » Mon May 15, 2006 10:12 am

hi richie
this works for me when i have been going to the dotors and got no hgelp oir fobbed off i ask my husband to come in with me.he doesnt usually have to say anything but just the doctor seeing him come in with me seems to spark them off by thinking oh i had better do something here she has brought backup.
good luck
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