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Date: 22.09.2013
From: Debbie

Subject: help

I was quickly diagnosed RA in April this year and my GP put me on sulfasalazine, pain killers and anti-inflammatories and referred me to a rheumatologist. He also had me on regular blood tests and check-ups and was very supportive. Three months later i saw my rheumatologist who confirmed that the sulfasalazine was not having a noticeable effect. However, as I was relocating a month later, he did not want to change the meds, leaving it to the rheumatologist in my new location. At this time my main problems were fingers and feet and pain levels for the most part manageable.
A month later (one month ago now) I moved, registered with a new GP and got referred to the local rheumatologist - another 3 month waiting list. The problem is in the last month - 6 weeks I have been experiencing random flare ups all over, hips, jaw, wrists, shoulders on top of the usual finger and feet pain which has greatly worsened. They seem to last about 3-4 days each and are excruciatingly painful and am unable to move or touch the joint. As soon as one subsides another flares up. They mostly start about 3-4am, though the last couple have come on in the afternoon, and they prevent me sleeping. I am taking the maximum dose of prescribed painkillers and anti-inflammatories, sometimes a little more. My new GP doesn't want to see me and says to wait for the rheumatologist appointment - which is 2 months away.
I am fed up of being in so much pain all the time, not sleeping and finding myself crying all the time. I am struggling with work (my job is very physical) but can't discuss it in detail with them as I don't want to lose my job and have no-where to go. I can't keep going like this, please help.
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Date: 22.09.2013
From: Emma

Subject: Re: help

Hi Debbie, sorry to hear your in so much pain. I have had ra for 4 yrs, I would call the rheumatologist and tell them you are getting worse that you cannot sleep and is making you depressed, I was in a similar situation , I wrote a letter of complaint to the chief executive of the hospital and found out they had a complaints department and emailed them, I got a reply with an appointment and a letter of apology, what you have to remember is they don't have the disease you do they don't have to live with the pain everyday so just keep pushing. I hope you get somewhere and take care, keep in touch. Emma x
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Date: 22.09.2013
From: Debbie

Subject: Re: help

Hi Emma, thanks for replying. I think it's the GP I need to complain about, he just made me feel I was wasting his time. As I haven't seen the rheumatologist yet I don't have contact with one. Guess I'm just going to wait xx
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Date: 22.09.2013
From: Emma

Subject: Re: help

Hi Susan, I would kick up some stink I would go back to gp and ask him who your rheumatologist is and call them, because you cannot wait if your in pain and you don't want nodules to start forming, you really need to say to your gp and be blunt and say to him your not the one in pain I am. It really annoys me about some Gps that they don't understand, what area do you live I would love to come to see him with you lol. Any other info that you need just come on the site they are so helpful and friendly, I will help you as much as I can Debbie , take care emma x
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