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Date: 04.07.2010
From: Martin

Subject: A question from a son

Hi everyone

First of all I'd like to say that I don't have arthritis (yet - I'm 34), I count myself very lucky, but my mum has rheumatoid arthritis and has for years, its always really sad to see the damage it does to her joints, especially her fingers and knuckles when I go and visit her and I come away feeling very sad and a bit helpless.

I was hoping someone could give me some advise, at the moment the arthritis has really effected her right hand and she wears a hand guard (splint??) but its also effecting her left hand (making the fingers face away at an angle, I'm sure you know what I mean) the Dr said that she could have replacement knuckle therapy, I've been trying to find out as much as possible about this procedure for her (she and my dad aren't the best with computers lol), has anyone here had it done?

How successful is it and any advice? any links would be fantastic

She also struggles to go out anywhere because her feet hurt her, do you suffer from this also? how do you manage? she can't even go away on holiday in the car, is there anything she can do to ease this so she can go out without being in major pain later?

Thanks for your help it is very much appreciated :)
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Date: 05.07.2010
From: kazzie

Subject: Re: A question from a son

hi is your mum not under a speacialist i am 36 and have it bad for about a year now so this is all new to me but am under a really good speacialist and on metroratate and lots of orther meds to stop all the joints goin deformed .has she seen a doctor
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Date: 05.07.2010
From: louloubelle

Subject: Re: A question from a son

my grandma had all of her knuckles replaced and she recovered really well from it! Needed lots of help initially though but i think someone came to help her out (when I say Grandma she's not like a really old lady or anything, she's very independent and "with it" - she's not a nursing home type of grandma if that makes sense). Her fingers have started to bend outwards again but she's still knitting and chrocheting non-stop (which is great 'cos she's crotcheting loads of gorgeous stuff for when my baby arrives in October).

Hope that helps.
Lou x
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Date: 07.07.2010
From: Abbie

Subject: Re: A question from a son

Hi I can't help with the knuckle thing but i'm 33 and suffer REALLY badly with the feet thing. If not already your Mum should be on long term meds from a Rheumatologist. I basically take very strong pain relief, If walking use a stick, If driving stop every half hour. The pain is so bad after outings especially whole days or long journeys but I basically grit my teeth and bear down through the pain and rest to recover as Otherwise i'd never go anywhere. I hope your Mum goes ok! Go well! X
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Date: 07.07.2010
From: KayJay

Subject: Re: A question from a son

I'm 56 and was diagnosed with RA in March. Although I have severe OA in my left ankle and the surgeon is unwilling to fuse it because of the RA diagnosis and I have walked with a stick for about 3 years now. My feet are really painful - I told the Consultant about this but he didn't really say anything. I'm on Solpadol painkiller but they don't seem to take the feet pain off. My daughter was married in June and I was in so much foot pain I couldn't go to the Reception and I was , and still am , very upset about that.

So if your Mum is in regular contact with a Rheumatologist and is getting the correct pain relief I think that's about all we can do. But sometimes you have to be a bit bullish with the Consultants if nothing is making you feel better or still in pain.
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Date: 07.07.2010
From: rose

Subject: Re: A question from a son

Hi I am 63 diagnosed with RA. I cant help either with the knuckles. I have terrible trouble with my wrists, one of which may have to be fused unless it does it itself. I do however have really severe trouble with the feet. Both my ankles are now eroded away in varying degrees and the bones in my feet have collapsed. I cant use a walking stick as I cant take the pressure on my wrists. I am under an excellent Rheumatologist and Pain Management Consultant who has me on treatment and at the moment Morphine for the pain. I also take Codeine for breakthrough pain - up to 8 per day. If your Mum is not under a good Rheumy that would be the first best thing to do. Unfortunately there is not a lot else to help ease the pain but try to be positive and keep on at the Consultant to get the right medication sorted out for her. I may have to think seriously about a wheelchair for shopping etc when the days are too bad with pain, maybe thats an option. I have only heard mixed opinion and some success with operations to replace joints with RA maybe someone else here would know more to help.Most days I have to grit my teeth and try to go through the pain as I too would never leave the house and some days not even the bed. I always have to rest the next day though. I hope your Mum gets the help she needs Go Well and Good Luck
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Date: 10.07.2010
From: Abbie

Subject: Re: A question from a son

Hi rose! I'm a grit teeth and bare it then rest next day girl too otherwise you're right, would go nowhere. What type of morphine do you take? Was interested to read you take that and codine for breakthrough pain. I take MST (12hr Morphine pills) twice a day then Oramorph (liquid morphine) for breakthrough pain. Find it works pretty well. Anyway, you take care! X
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Date: 10.07.2010
From: Martin

Subject: Re: A question from a son

Hi all

I just wanted to thank everybody for there replies - very kind, she often feels like she's the only person in the world that has r.arthritis (because it forces her to spend so much time at home) and so I've sent her these replies (I set her up with email on a laptop lol) so she can see that is not the case! (I hope you all don't mind!)

One thing is that she gets a bit lost on what to do with so much time at home, what do you do? its tough for me because I live 4 hours away so I don't get to visit as often as I'd like!

I wish you all the best and thank you again for your replies, they really are appreciated :)
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Date: 10.07.2010
From: KayJay

Subject: Re: A question from a son

Martin is there an Arthritis Group near where she lives ? Just a thought :0)
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Date: 10.07.2010
From: Rose

Subject: Re: A question from a son

Hi Abbie,Great to hear from you.My Rheumy has put me on Morpine Patches (Durogesic which is Fentanyl) They last for 72 hours (3 days) before you change them. I started on low dose and now up to 100mmg. The Codeine is Panadeine Forte with 30mg codeine. I take 8 of these daily. The reason I take this combination of pain relief is that as well as having RA and OA I also have Crohn's Disease. If you are unfamiliar with it, its an autoimmune disease and is also known as Inflammotory Bowel Disease. It is incurable and chronic with flare ups same as RA.I lost the battle with Crohn's and five years ago had to have almost all of my small and all of my large bowel removed and now have a permanent Ileostomy Bag.Because my bowel is so short the codeine does not affect it and I never suffer with constipation, going instead 16 plus times each day to empty the little new friend that I have. The Morphine Patch is kinder to my stomach and gastric wall which is why my Rheumy has put me on this. If the Pan.Forte does not help with breakthrough he will look at something else in the opioide line. Thank you for your interest and i hope it helps. I am happy to hear your meds are working well for you and hope to keep in touch.Take care and Go Well X
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Date: 12.07.2010
From: Abbie

Subject: Re: A question from a son

Ah rose that makes things clearer. I am familiar with Chrons as a good friend has it and I wouldn't wish it on anyone God love ya! I nearly lost my life to an autoimmune disease in 2007 of which i'm not cured but have been in remission since december 2008. I learnt a very interesting fact that you may know already but apparently after you get one autoimmune disease, it's very likely you will get a second. In your case Arthur and Chrons and in my case Arthur and Neurosarcoidosis. Anyway honey, Go well X
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Date: 13.07.2010
From: valh

Subject: Re: A question from a son

martin hi go on arthritus care site they have lots of information and a help line she can call there are more members on the forum so always some one to natter to . the best thing you can do for your mum is give her a hug and tell her you love her
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