help and advice please

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help and advice please

Postby confuzzled » Mon Jan 07, 2013 8:12 pm

hi all need some advice
was diagnosed in 2009 with fibro i have been through alot but got through it and seemed to be managing really well i was on gabapentin 2 years ago was like a miracle and have been able to work since then. i came off it about 1 an half years ago i get symptoms but have controlled them well.

but the last three months after my flu jab ive had sinusitus repeatedly, i get blurred vision that becomes blindness where its like im looking at a light bulb. my twitching jerking is a lot worse its like a build up of pain and then i jerk, it can be just my arm or like a whole body jerk. but its worse recently and i have a constant tension headache, an i become really confused forget even where i am an what im doing.

well ive been bk and forth gp had antibiotics an he reffered me to ear nose an throat but the waiting list is six months so i went bk to see him as i feel crap and he said he doesnt believe that i have anything wrong and that its all in my head. he normally blames everything on my fibro but he didnt even say that he said he thinks its my mind playing tricks on me and pescribed a high dose.of amitriptyline.

i feel lost i dont know where to turn all i know is im not taking the amitryptyline as i dont think this is what i need at all!!!
please help and advice desperately needed
Last edited by FluppyPuffy on Tue Jan 08, 2013 8:50 pm, edited 1 time in total.
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Re: help and advice please

Postby masonsbarms » Tue Jan 08, 2013 4:22 pm

hi, sorry you are feeling so bad after controling things for so long,

the gp was well out of order saying that to you so could you see someone els or even change surgerys,

you need a understanding gp to help with this thing and one who knows about the condition,

i dont know what dose of amys hes put you on but i take 30mg at night along with other pills as these where perscibed by the rhumy who diagnosed me and said the were given to fm sufferers to help controle spasams and aid restful sleep,

dont let any one make you feel you are imaganing things and if you dont get the help at the gps your with look round for another but in the mean time ask for a second oppinion,

some of you symptoms could be comeing from you sinus problems so saying ther is nothing wrong is a contradiction at least.

hope you get sorted soon and start to feel better,

take care xx
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Re: help and advice please

Postby FluppyPuffy » Tue Jan 08, 2013 9:33 pm

:welcome: to the forum confuzzled, I'm sorry to hear how things are for you at the moment, esp with you having managed to get things so controlled previously.

From what you have said about your GP, I'm with MB in thinking you need to see a different one. Having an understanding one can make all the difference when it comes to being treated for FM. If there are others you can see at your surgery, consider trying one of them, and if they aren't any more helpful, then consider changing to a different one.

Amitriptyline is often used in managing FM. Altho originally an anti~depressant, it has also been found to help with pain and sleep problems, which was possibly why it was prescribe for you. I can understand why you are reluctant to take it, on the flip side tho, it can make a real difference to some people, so it might bee worth considering giving it a try and see how things go with it.

There is lots of other info and advice on here, having a bit of a read as you look around might throw up something useful for you to try.

What you have described could certainly suggest that something else is at work and causing you these additional problems. Altho it's a 6 month wait for ENT, it might be worth waiting for an appt to come thru as there could be someone there who as an idea what could be causing these other matters. If things feel like they're worsening, you could see if appt could be brought forward or if someone cancels theirs, see if you could be considered for the slot.
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Re: help and advice please

Postby confuzzled » Tue Jan 15, 2013 12:16 am

thank you both for comments a big help, he put me on 75 mg thats why i was reluctant, you both helped im guna ask to be re reffered to rhumy
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Re: help and advice please

Postby Iceskatemum » Tue Jan 15, 2013 2:47 am

Over the years I have had lots to do with various hospitals etc dues to self & family memebers and have often found if you tell the outpatients appointment people or the consultants secretary that while you accept your appointment date you are also willing to take any appointment / cancellation at short notice you may get seen sooner as they often prefer this to having missing slots in a clinic. So it may be worth giving that a try .

Hope you can at least have a chat with another GP if only to see what they think might be wrong.

good luck
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