A question about RA and symmetry?

Mat48

Hi - wondered how much symmetry of joint problems RA sufferers get? For instance if one finger and knuckle below is often inflamed and stiff, painful etc and then on other side a different finger aches and is a bit stiff but not nearly as bad - is that still counted as symmetry? Or if both wrists ache but the right one is always much worse (more stiff and painful) is that symmetry? Or is it always same finger on both sides ditto knees, toes, shoulders etc. Just trying to work out what to say when asked these questions by my consultant in a month - how to describe things to a rather brisk man who doesn't invite chat or questions much?!

valval

get the pain map it easyer than explaining but mine shifts(not got ra well do not think so lol got as far as inflimation lol)
so am not much help to you it hard with rhummys mine said get in touch if you need injection so when got bad phoned(doc told me to lol) and when got there it was you requested this what for lol he did it and it helped but felt like why did you tell me you would do it when i needed it if you did not want to lol but do hope it goes well for you val

topgirl

mine is only symmectrical in hands....another problem with sero neg.....write a list of questions for when you go so you dont forget...x

Mat48

Last time I saw him (the first) he just whipped through all the questions so fast I didn't get time to blink and then when I cleared my throat and asked if I could ask some questions he looked up at me vaguely bewildered and said "well yes - what is it?". So I asked one question about levels of support where I live (on island) if I was diagnosed with RA and he just snorted and stared at the head physio and said "well either contact your GP or the physio here?" as if I'd asked a loony question! So I'm trying to plan with military precision this time so I don't walk away feeling like a nutter again.

Topgirl - is it always the same fingers on either side or is it just fingers on both sides can you tell me? And is it equally bad on both sides? I'm worrying like mad that he'll leave me in limbo land untreated for another 6 months already and appointment date's not even come through in the post! But I did phone the hospital to check and they said he'll be here last week of November. Bet he gets snowed in and never comes here knowing my luck! Mat

tjt6768

The list of questions is a must. If he's not a chatty one (had that before) then hand him the list of questions first thing and just tell him you've written down some things you would like him to look at.
Also, the pain map is a great tool to help.
I'm not sure if you know what it is. Dear Anky on here was sending them to people who needed them. I've a copy but not sure how to get it to you. I will try, hang on.

mig

Hi,never thought about ra being symetrical before,i have it in both hands and feet ,right hand is worse but its same joints affected, same in feet.Mig

tjt6768

I was hoping that I might be able to upload it via photo bouquet.. Nope. Sorry.
Someone else may be able to help though.

Mat48

Hey Tony Anky sent it to me. You are right must start using it but when I tried I couldn't find a way of moving the colours about in the body. I use a MacBook and was doing it on Word - maybe I am meant to just print off a load and use coloured pens but I gave up just then as our printer's knackered just now. Will get my act together soon but I do keep a pain journal with log 0-10 and started putting photos of swelling on. That's what I showed GP but think Anky's pain map looks more efficient and effective by far. Thanks.

And yes symmetry's the thing that distinguishes RA from other types of Arther I believe? I've never been very symmetrical in my life but this joint stuff is as close as I come! :roll: Mat x

elnafinn

mig wrote:

Hi,never thought about ra being symetrical before,i have it in both hands and feet ,right hand is worse but its same joints affected, same in feet.Mig

You learn something every day, don't you Mig. My consultant requested that I have a bloodtest for RA as both knees were shot and both my thumbs. I had always been diagnosed with OA so this came as a shock, even bigger one when the test came back positive. On seeing a rheumi, he told me I did not have RA because the liquid he aspirated from my knee was the wrong colour.

Elna x

jillyb1

Hi , Matt , I've been a RAer for 31 years now ; and yes ; I consider myself a symmetrical sufferer ! I find that if a joint is affected on my right side , it is then followed by the same thing to a lesser extent on the left . No idea why the right gets it first other than that I'm very right handed ; odd isn't it ? Maybe that's just how it works with me though , we all react in a different way to this weird affliction ! Jillyb

Mat48

Thanks Jilly that's really helpful. Sometimes mine is symmetrical ie both knees, both shoulders, feet etc but usually worse on one side than the other which you are saying is normal for you too. Presently the worst part has been the right wrist and fingers/ knuckles which are stopping me from basic tasks such as driving, cleaning, cooking, working (I'm an embroidery artist as I've probably said) and getting dressed and undressed - and getting in and out of the bath is a major drama just now. Left one is twinging too but nothing on right which I can't bend or turn at all. Stiff and swollen fingers are currently the left winky one and the right forefinger neither of which will bend and both have pink/ bruised looking joints on lower joint of each finger. All fingers are stiff on waking for a few hours but right knuckles are permanently swollen but not the left? That's why I asked. Mat x

topgirl

Mine isnt !!
The pain just goes where it wants ...when it wants!!!!!....hands are worst at present......cant help with your job can it :?:

tjt6768

knees have both been bad, left one always worst until about two years ago, both as bad now. Hands are both as bad as each other I suppose. Spine central so that didn't count, lol.
Fingers are equally painful, both seem to be little fingers and thumbs affected the most.
Left hip been bothering me too but think that's referred pain from the spine.
Weird though innit all this symmatary business.
Wonder why it is..
Good topic.

valval

if you ask she will send you email on how to use map she had to send me one as could not work it out thought she would think i am potty but she was lovely and could understand instructions lol but never get circles same size lol val

Mat48

Might be wrong but if it's Anky we are speaking about then sure he's a he?

I printed a few pain maps off in the end (OH fixed printer for me) because that way i can write and colour in myself using the figures and three colours. Unfortunately i'm struggling to write anything just now as fingers so swollen and stiff so it looks a bit mad! But I'm also feeling humbled tonight having watched a programme on iplayer (not for long) about artist Edward Burra who suffered from RA from childhood right through.

Got this from someone with RA on the NRAS site well worth watching as it shows how much people in chronic debilitating pain can still achieve. Mat x

http://www.bbc.co.uk/iplayer/episode/b016fmxs/I_Never_Tell_Anybody_Anything_The_Life_and_Art_of_Edward_Burra/

topgirl

Will watch that tomorrow Mat as im sick of work again..
However last assessment for anti TNF friday.....hopefully I will get it and can look at returning to work....
Its hard sometimes.I cant believe you are not getting any treatment..
I have replied again to the sero neg post...it may help......x

Mat48

Thanks - feeling sickened by the pain in my fingers tonight and shoulder starting up once more. Better not add to this pain typing save to say that someone from the NRAS forum got in touch with me by PM with that link and also said that she's sero-neg and doesn't get any symmetry - it just goes anywhere it can :roll:

Good luck with anti-tnf hope you get it!

Bloody miserable - when I get like this i just feel scared that my joints are deteriorating and no doc is going to do anything to try and prevent this. Also does anyone else get finger joints that go a sort of greenish purple as well as pink and sore like they are badly bruised when swollen? Photographed mine and noticed the really bad fingers are darker than the others. It's all dark just now though Never mind Grand Designs on soon, I'll hit the whisky if OH opens the lid and then I can dream of my dream house where everything glides and there are no stairs and no horrible door handles and bath has a lift to winch me in and out and all is leafy and sunny 24/7 and there's a heated pool! Mat x

topgirl

grand designs was ace!!!....i want a dance floor like that!!!

ahhhhh..no more whisky when Methotrexate arrives.... :???: we have no fun do we???x

frogmorton

Isn't Anky a 'she'???????????

:oops:

Mat l am usually symmmetrical too (sero-neg) Rt first then left to a lesser extent a day or so later.

Love

Toni xx

Mat48

Oh yes Top Girl - I went through a stage of horror about being put on methotrexate because of stuff like hair thinning (had alopecia twice in my life and now my hair's my best feature by far!) and also not being able to have my nightly dram. But to be honest I don't drink much anyway and only started on the whisky to try and get through the pain at night. Here in far North drinking heavily is such a status thing that it will be quite useful having an excuse not to without looking like a sobriety freak! And as for the possible nausea - well I'm on a quest to lose more weight as still far too fat despite losing 2 stone so that just might help even if unpleasant? And anyway I'm just at the stage where i no longer care about side effects just want treatment to begin in order to lessen the pain and stiffness and allay future damage too so bring it on baby!

Not sure about the disco floor last night - part of me loved it as I love dancing away free fall style when the mood takes and joints permit - but I found them a bit too night clubby slik for my tastes this week? My favourite ones were the old pair of whacko artists who built the Huff house with a side each years back when Grand Designs started - I'm still yearning for one of those I admit and I thought that couple were so cool!

Interesting about the symmetry despite being sero-neg Toni. I usually have pain in both sides but one or other is usually much worse - like my feet and knees tonight :sad: But like you Toni it usually comes one side (either in my case) and then comes a day or two later to the other so good to know that still counts as symmetry!

But I just wanted to know because of being partially sero neg and so little visible redening or swelling apart from hands now - that I needed to check other markers for RA such as symmetry if that makes any sense? Mat x

tjt6768

Anky is definitely a she.. Believe she could be taking some time out from ac ary the minute though?

Mat48

Oops hope I've not offended her then but so hard to tell with the gender neutral nicknames - id quite like to be thought to be a bloke but then I'm weird that way! Mat x

dreamdaisy

My PA has always followed a pattern of one affected joint then the parallel joint joins in at a time of its own choosing. I've never thought that much about it, and still don't. It is what it is and it will do what it will do. DD

frogmorton

Mat48 wrote:

Oops hope I've not offended her then but so hard to tell with the gender neutral nicknames - id quite like to be thought to be a bloke but then I'm weird that way! Mat x

OMG!!!!!!!!!!!!!!

Mat don't tell me you are a female???

seriously l did know....l have spent a fair amount fo time being thought male because of the Toni though....till they meet me

Mat48

Ha ha i think I've referred to my menapause enough times not to be mistaken for a bloke! And one of my old school friends was a female Toni so I know that it's a female name - and anyway i think you did once refer to meno yourself so I believe we are of the same gender but if you had stuck with Frogmorton i'd be hard pushed I admit!
Mat x