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Date: 16.09.2013
From: Iain

Subject: Waiting to see specialist

I'm a 35 year old male, waiting to see the specialist, and it can't come soon enough.
For around 5 years I've had a number of problems, including tiredness, lack of energy, constant aches & pains in joints (shoulders, wrists, fingers, knees, ankles, tops of my feet), breathing problems etc. It's at the stage now where I feel I've regularly got the flu and the aches make everyday life difficult. I can't exercise, my weight is increasing (up around 3 stone in 4 years)
Blood tests RE energy in 2010 & 2012 apparently showed nothing, but this year the doc looked at them and said I was anaemic in both.
Blood tests this year tested positive for RA and gout.
I don't really have the symptoms of gout, things tie in more with RA, but while the level was above the norm, it wasn't through the roof.
I'm on diclofenac, which has helped with the worst of my pain, but I'm still struggling.
I really worry that the specialist will fob me off like my doctor has for the last few years.
It's quite depressing, and just want to feel more normal. Does anyone have any words of advice that could help me?

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Date: 16.09.2013
From: rhona

Subject: Re: Waiting to see specialist

Hi Iain,

I am sorry to hear that you are suffering so much at the moment. I have had RA for over 12 years now so I can understand how you must be feeling. The tiredness is part of it unfortunately and when you are sore it makes exercise very difficult.

I don't think you should worry about the specialist fobbing you off, they are usually very understanding, just tell them how you feel and if it takes you longer to get moving in the mornings because of stiffness etc.

Once you get started on the right medication you should start to feel a lot better and then it will be easier to exercise, swimming is meant to be very good for RA if you can find a pool that is a bit warmer.

Take care and I hope you don't have too long to wait for your appointment.
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Date: 17.09.2013
From: Chris

Subject: Re: Waiting to see specialist

Hey Iain,
1st off, hang in there mate. Once you get on decent meds, you'll be able to return to some 'normality'.. whatever that is!

I've had alot of problems with GP's in the past, fatigue means i usually forget to say half the symptoms, pain levels etc.

A good way around this is to write down the points you want to talk about. I'd especially suggest you do this before your rheumy appt. Also it's a good idea to take someone else with you if possible. You might want to even make an audio recording of the appointment, as i tend to forget half of what they say.

Ok, you got a shit GP, no worries, nearly all of them are in my experience. It's not there fault - it's an impossible job.

In my opinion, (i'm not a health professional) you shouldn't be on diclofenic, alot of 'old' GP's prescribe it, because they have had good results with it in the past. However (w/o knowing your case history at all) there are better newer NSAIDS (anti-inflammatories) out there. I was prescribed it 20 odd years ago, and it was effective, but ARCOXIA/Etoricoxib is the bomb. It's prescribed for RA/gout, the drug isn't w/o it's risks, but is generally considered safer than diclofenic.

Chronic pain is an arse, it may sound far fetched, but there are alot of treatments and drugs to help with it. It's really important to treat pain, it produces stress hormones etc, and in my experience leads to mental health issues. Weirdly the 'stronger' (male interpretation of the word!) you are the more likely this is to happen.

There are many ways to treat it, your shit GP will probably offer cocodamol. Try them, everyones different. The advice i received when i was referred to the chronic pain clinic, was to take another awesome drug. Changed my life when i started taking them. There are side effects, and they're not for everyone. The other perhaps more important bit of advice was to take paracetamol when needed. Lessening your pain even slightly can have a dramatic effect. Oh, acupuncture is good for chronic pain too, used to be given on the NHS by our PCT till the cuts happened.

Just rereading your post:
tiredness/lack of energy/feeling like you've got the flu.
All these are symptoms of inflammation. Once the inflammation gets under control these will hopefully disappear or at least greatly decrease. This will need to be treated with medication unfortunately. However, there is a crap load out there - your Rheumy will take you through the process (although arcoxia will help).

Lastly, you are not alone. Immuno disorders are on the rise in the 'west'. You could reach out to a support group, there's crap loads of us suffering at home in silence.

All the best mate,

(as said i'm not a health professional, i'm a random internet idiot, take it all in that sense)
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Date: 17.09.2013
From: rhona

Subject: Re: Waiting to see specialist

A very informative post Chris, written as you would say it, well done!
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Date: 18.09.2013
From: Iain

Subject: Re: Waiting to see specialist

Rhona, Chris,

Thanks for your supportive and constructive comments.
It's been a tough time recently, so it's reassuring to know that things can get better.
I feel like a bit of a fraud, as others will have things far worse, but the cumulative effect of it all is getting too much.

I have written up an 'illness diary', as like Chris says, a combination of tiredness, pressure, and British positivity could mean I don't get the full message across.

My appointment is next Thursday, so hopefully I can get a bit of relief.

Thanks again,
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Date: 22.09.2013
From: willis

Subject: Re: Waiting to see specialist

Hi Iain
I hope your appointment goes well and you get some decent help to get it all under control.
Chris - fantastic reply for Iain - That's exactly what it is like Iain
My own doctor advised me to find this forum - they know more about it than me she said - and they do
do let us know how you get on x
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