just want to scream !!!!!!!!!!!! - Fibromyalgia Acti...

Fibromyalgia Action UK

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just want to scream !!!!!!!!!!!!

tiffany profile image
7 Replies

hi my name is diane i have had fibro for 4 yrs now as well as bi polor epilepsy fluid on the brain regested blind osteoarthritis removel of both tyiroids manic depression today i went for my first pain clinic im wondering what planet she was on cause i have to walk for 20 min ever hour for the first week then walk round my village the second week no going to bed if i feel tired take up swimming ( cant swim) then 3rd week do a gentle jog round my village and that will ease my pain then i told her i have a mental health nurse she asked if he was a real nurse felt like saying no i bought him of ebay and acording to her my fibro isnt a illness its just a simptom as well as all else i have wrong with me will i be going back only when hell frezzers over

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tiffany profile image
tiffany
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7 Replies

are these people insane, Ive tried graduated exercise for the past 3 yrs, it doesnt work for me ive tried resting ive tried fighting this illness,I got to go to a pain clinic , and if their no good I quite simple wont go again

nuttytartuk2003 profile image
nuttytartuk2003

from what I've read on fibromyalgia, trials have shown that exercise doesnt help, it helps with cfs/m.e but not fibro but alot of health care professionals believe they are the same illness and still think exercise does improve our symptoms but from my experience it deffinately doesnt help me it just puts me in bed for 3 days

jazher profile image
jazher

Nice to meet you Dianne,

I would tell them where to go, where do they get these people from, MARS.

This attitude helps no one, i just wish people who havent got a clue would actually admit they havent got a clue and point us in the right direction to who would.

Exercise is an absolute nono for me, it kills me, i have to do gentle stretching and gentle walking.

Hope you find someone who will help.

I am going to my first pain clinic on the 12th of april and i am not holding my breathe on them helping me.

kel xxx

Frankiebeee profile image
Frankiebeee

I agree even though exercise does work for me but only in the fact it most likely makes me feel good in myself (I enjoy being out with the dogs) but I can't always exercise how I want to or used to before FM.

I do hate it when people particularly health professionals seem to think that having fibro fatigue is like just being a bit tired.

Take care and hope you find a way through this

tiffany profile image
tiffany

thank you all for your comments we all have good and bad days and we all know how far we can go on any given day i think i will stick with my hot baths and do what i can when i can im to old to be told how i should be feeling if they had this i wonder if they would take there own advice .....i dought it i hope you all have more good days than bad gentle hugssssssssss xxx

fairycazzie profile image
fairycazzie

i have to admit tiffany you have a sense of humour and that is what is needed when in these conditions your conditions make mine feel minor, but we all know what we are capable of .sometimes WE have to be FIRM and TELL them and not just sit and listen! They are not the ones suffering! Pain Management! hmm been there and ohhh you got in too many areas so cannot help you need neuro bla bla bla... but so untrue!! as i know so many ppl with different pain issues and it can be done just try to fob off You know yourself what you feel is best and if you are happy with your Mental Health Nurse what does that matter to anyone else?! fibro is an illness, like any other problems out there.. some medical problems come and go fibro is day in day out! and i think the more and more ppl diagnosed and hopefully get together and shout out loud what it is like then they may understand! Nerve damage(pain) is herendous in itself without having the stiffness, weaknesses and tons of other symptoms alongside it errrrm so if thats not suffering what is?? it affects your daily living life and mental stability too if not strong enough to cope. ohhh there i goo again long winded posts hahahha. I

tiffany profile image
tiffany

thankyou fairycazzie you need a sence of humour when dealing with the NHS well you do at my hospital just got a letter from my council what a laugh this will cheer you all up cause i live in a 2 bedroom bungalow they are going to charge me rent on the spair bedroom i dont use so im going to buy a red bulb and open a knocking shop hahahahah im sat hear wondering who else is going to upset me before the year is out maybe the DHS will have a go next i say bring it on

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