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Date: 25.10.2015
From: Sue

Subject: Frustrated and sad newbie

Hi all, I've been reading this forum for a few weeks and thought it was time to introduce myself. I'm still waiting for an official diagnosis but it's looking like RA. My last appt with the rheumy was in July and I'm still waiting for my next appt to come through. Since I last saw him my condition has deteriorated significantly. My hands are becoming more deformed by the week and I'm struggling with pain in all of my joints. To make things worse my parents are not very supportive, I've reached the point where I just say I'm fine even though I'm really struggling. My husband tries but basically he just doesn't notice that I'm struggling or in pain. It wouldn't cross his mind to say you sit down and I'll do that. Sorry I'm moaning so much on my first post but I don't feel that I have anyone to talk to at the moment 😢
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Date: 25.10.2015
From: Lara

Subject: Re: Frustrated and sad newbie

Hi sue, welcome to the forum. You come on and talk any time we are all hear ready to listen. If you don't suffer from what can sometimes be a silent illness then some people find it hard to understand what we go through each day.
Are you on any medication? If you are in so much pain can you ask for an earlier appointment? If no appointment call them up or go to gp and get them to help. Don't suffer any more than you have to. We all have limits so don't try to be brave. Can you get leaflets on arthritis ? Leave them were your husband can see them or give him them to read it may just give him an idea of what you're going through.
I hope you get a diagnoses soon and help.
Do keep coming on and talking, it can help xx
Big hugs to you x
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Date: 25.10.2015
From: Sue

Subject: Re: Frustrated and sad newbie

Hi thanks Lara. I was on codeine and have just started on butrans patches. Both help with the pain but don't get rid of the swelling which is really uncomfortable and I'm not allowed anti inflammatories because of my asthma. Good idea about the leaflets x
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Date: 26.10.2015
From: Clare

Subject: Re: Frustrated and sad newbie

Hi Sue,
It's a hard illness to cope with daily and I think we all suffer in silence to a point. It's very hard even for those closest to us to fully understand. Just try to be honest about the things that make you most uncomfortable with a new diagnosis it's a lot for everyone to take in. I have had RA for 10 years now and I'm only 43 I've had ups and downs but hopefully they will get you started on meds soon. You don't have to suffer push for an appointment and ask for a steroid shot that will help until the meds take effect. It is indeed a hidden disease and so frustrating only yesterday I flipped at a man in a car park just as I walked to the car and tried to get in I was in a disabled bay he mumbled to his young child yes she doesn't look disabled! I walked over and showed him my hand which is quite deformed from RA and explained how some days I can barely walk around the house, get up off the toilet seat or open a packet of crisps... I said everyday I see people look at me and think why is she parked in a blue badge space but just because you see me walk from a shop door to my car don't assume I'm not in pain or have to fully open the doors to be able to get into the car. I probably upset myself more than him but hopefully next time he will think before he passes comment or indeed teaches his child the same ignorant behaviour. See even the old timers can have a rant!
I hope you get some answers & help soon
C x
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