Like a package that has address but w... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Like a package that has address but wrong postcode on.keep bouncing between one place and another but no one will sign for me! :)


Sooooh. ..went to rheu'gist a couple of weeks ago after 4 years of being upped and upped on meds ended up on: 50 amitriptalin; 900 gabapentin; 8 kapake daily and diazepam / mitrazepam to try and knock me out (which never worked), always in pain fogged up to the max and haven't had a good night sleep in probably 10 years!! :) (no wonder my colleagues always look at me confused ha ha haaaaaaaaaaa! ). Although ive always been a lil bit absemt minded. :) Soooooo.. was hoping to try and become me again, so managed to wean myself off all meds a couple of months ago. Wasnt easy got to say!! :) Rheumy says "that's amazing because that's what the conference leaders tell us to tell you now" have a "medication holiday " .... super :) well done me ... :) now fix me please! :) hit the reset switch in my muddled brain, please.

Rheu'gist has represcribed me duloxetine and pregablin, says they're a good combo. Says "CBT" and "management programmes " ( im already under physio for arthritis in my leg) they want me to stand on one leg and squat a number of times a day... i say "super! " "yup" and nod thinking " are you actualy having a laugh..!!?? I can't stand straight some days let alone crack out the lotus position whilst "cleaning your teeth" they tell me :) Anyways. .. Rheumy follows it with" but there are none of those services available in this county" my doctor wouldn't give me the pregablin this morning as he put me on citlaopram last month and they made me feel awful " no point in them if you feel sick on citalopram" he says and sent me away with the duloxetine.

Anyways... at the Rheu'list do the "disappointed in myself" and "not who I used to be" and can't do the what I used to do"..."why do I hang the washing out and then become unconscious somedays the following 16 hours!!???" Thing. I am self employed so this past year has been tough, and let's face it...who wants to employ someone that can't get out of bed right..??!! :)

Followed with.. " is this in my head???!!" Because the keep draining me of blood to out into a a small testing machine and it always comes back "normal" - although my kidneys were having a bit of a wobble a lil while ago.

I always tell others "if it feels really to you. it's real" never to question themselves. But although trying to stay positive through the past few years I am proper beating myself up now! "Snap out of it " and "get a grip" is what I find myself internalising.

Soooooo. ..lovely Dr B (has the best accent of any doctor, makes me smile!) Says "this is very real, what you feel is real" .. "all of it". That made me cry. (I do that lots anyways when no one is around! :) )

Not sure if this will be allowed but is watched this today :

OMG... what a lovely, focused, sympathetic lady. Intelligent in her own field and leading others to possibilities which may lead to greater empathy; understanding and hopefully enhanced holistic approaches to seeing the whole person when "waste basket" diagnosis conditions and disabilities are involved.

Hhuuummpphhh... rant over! :) It's good to vent!! AHHHHHH! !! :)

Big take cares to you all. X :)

2 Replies

Hi There, you seem to have been going through the mill with Firbromyalgia and your other arthritic conditions. I have just posted today asking for help on "restless legs" I have had a terrible flare up this week and you don't realise how bad and awful this condition is. Well done you for getting of your medications. I weaned of pregabalin last year and try only to take what I have to. I haven't had a flare-up for a wee while and I honestly think it is due to the CBD oil (Cannabidoil). I too still hang out washing and try to do as many household chores as I can and then wonder why I am in such pain. Most people with fibro try to do too much on their better days and my Consultant keeps says "Pacing" is the answer but that is difficult to do at times. It maybe worth trying CBD Oil so many sufferers seem to be getting help with it. I leave 4 hours between the oil and my medication. I didn't ask my GP I just bought it, but it is wise if you are on a lot of medications! I haven't had any side-effects so far. I was advised to go onto the CBD Users UK and submit any questions I had about CBD. If you want to know the make I use I can let you know. I wish you all the best and hope through time your pains settle and give you some ease. People don't really understand unless they have this themselves and I constantly get told how well I look but can be sitting in agony at times, the "Invisible Enemy" as it is called right enough.

Good luck x

Sorry your having a hard time. I wish people would understand I get told how well I look. I went to hypnotist. He could not do anything about the pain but got me in a much better place also to except my life how it is now. Just wishing you all the best

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