Advice needed please

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Advice needed please

Postby sparklism » Mon Sep 17, 2012 8:48 pm

Hi all,

First of all, apologies if this is in the wrong section, I wasn't sure where to put it but it is regarding my diagnosis. I had my first appointment with the consultant last week. At the time I thought he was great, he really seemed to listen to me and take on board what I was saying but I now see he seems to have misinterpreted a lot of it.

The thing that has annoyed me most I guess is a reference in the letter to my GP about drinking. He asked, I presumed as a routine question how much I drink. I said 'I don't know, maybe a couple of times a week' and he has written this in the letter as 'she drinks several nights per week'. Well I don't, I'm not an alcoholic. Sometimes I enjoy a night out, more often I have a couple of bottles of beer in the house. He has made me feel like I'm doing something wrong and I don't even see how it is relevant.

I was referred by the GP after only my second visit. I went to the doctors in April about pains in my hands that had been going on for about 8 months. My mum has psoriatic arthritis (they chose psoriatic over other inflammatory arthritis because I have psoriasis and it is genetic) so I was a bit concerned. Anyway, she said to go away and come back if it got worse. Which it did. My right hand became permanently swollen. Not visibly, just enough so that my Grandma's wedding ring doesn't fit any more and sometimes my engagement ring on my left hand feels tight. The pain and swelling aside, the main reason I went back is because my wrists and the tops of my feet started clicking a lot, and painfully. She said she thinks I have hypermobility syndrome and referred me to a specialist. Who I saw last week and he diagnosed fibromyalgia secondary to hypermobility. I don't even know what that means!

He has said it is because I am a shift worker and my sleep is disrupted and I feel tired all the time. My sleep is disrupted in that I sometimes have to sleep through the day, but I do sleep reasonably well, and would say I get enough sleep. I 'feel tired all the time' through an awful fatigue, it certainly doesn't feel like I'm just not getting enough sleep. He has basically in this letter that if I get a new job (as easy as that!) that isn't shift based then I will get better. I'm annoyed as I feel that the tone of his letter is basically 'this lady has nothing wrong with her but wants a diagnosis so here's one' and he hasn't addressed my main concern, which is the clicking of my joints, instead choosing to focus on my sleep regime and how tired I get - I actually went in with 2 sides of A4 filled with symptoms and he hasn't mentioned any of them! He is starting me on amitriptyline but has said that when I go back in December he is discharging me. I really don't know what to think? I'm convinced now the doctor thinks I'm making it up and it's all in my head therefore it must be? :oops: Can anyone advise where I go from here or on what I have heard so far? I thought fibro took years to diagnose, I have seen my GP twice and one consultant for about half an hour!

Thanks for reading,

Lisa x
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Re: Advice needed please

Postby Flash » Mon Sep 17, 2012 11:10 pm

Hi Lisa, well, I can see why you are disallusioned with your docter right now. Firstly, F/M doesn't take years to diagnose, it's just that it has taken a lot of people years to get a diagnosis. If that makes sence. I have suffered with symptoms for many years. 12 years ago I found out about F/M but it took me 4 years to be taken seriously and G.P only sent me to a rhuematologist to prove I didn't have it. I was diagnosed within 30 minutes. :roll:

Have a look on the NHS website about hypermobility as you might understand the possible link between the 2. Arthritis and F/M are common together aswell. Flexy joints in some people during early years can cause long term damage to joints and ligaments so lead to other problems like arthritis. Long term pain, lack of deep sleep, among other things can then lead to F/M. :-?

I am only piecing together what I have read recently, as like you, I am trying to understand what is happening to my body. I hope you get the answers you need. Take care. :bear-dancing:
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Re: Advice needed please

Postby masonsbarms » Tue Sep 18, 2012 5:38 pm

hi, lisa the consultant i saw asked me about drinking and smokeing i dont drink but do smoke,

he mentioned this in my letter to gp, i only had 1 other appointment and was then discharged back to gp, i think this is the norm
but i dint doubt for a miniute that he didnt belive me but there isn much they can do only recomend pills,

he did say that the gp could request a appointment in the future if he though it was nesassery.
the trouble is nobody fully understands what is happening inside us all so its trial and error.

dont doubt youself or let people get in your head you know how much you drink and how much you hurt.
if you arnt happy with a gp try another you need one who understands.

take care xx
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