RA and deformities ?

pols090607

Hi again,

So many questions, apologies...

My Nan had very severe RA and was totally deformed, her hands and were all bent and fingers entwined and the same with her toes

I've only ever seen RA in my Nan and having been only last week diagnosed I am terrified of becoming deformed with it. That is probably what frightens me more than the thought of being in pain with it as I am only 36.

Has anyone else shown any signs of deformity ? Is it true that the medicine now compared to that of the late seventies has advance so much that it will prevent this happening ?

Thank you for taking the time to read xxxxx

page35

Hi Pols
this does worry me too, not so much how i will look but how will i be able to do stuff.
i think meds have improved alot but i think it also depends how bad your RA is and how well the meds work for you.
basically i think we have to just hope for the best
Sharon

dolittle

Hi Pols,
I have RA. My ankles are shot and my fingers are all twisted - they point in all directions. It's a damned nuisance cos I play a keyboard.
I'm twice your age, so I've just got to get on with it. Ankles - I wore ridiculously high heeled shoes day in an day out, so it's my own fault really.

The only thing I can say to you is be careful how you use your hands and don't put any unnecessary strain on them. Like getting a thingy to open jars and not lifting things like pans with one hand. They should send you to a physio, who will give you some hand exercises. Do them ... religiously ... I didn't and now I am sorry. If you use a computer, don't leave your hand on the mouse all the time. In other words take care of them.

I must have had this since I was your age, but it didn't really materialise until I was about to retire. What I'm trying to say is don't panic and try not to get stressed. Arfur loves stress. Sorry - I sound like a school teacher ... don't mean too.

Live your life and don't look over the fence until you get to it - perhaps you never will. RA affects all of us differently. Take care and remember - try not to worry.
Dolittle

PS Just read your post on OT lady. Night splints - use them. I didn't - that's why my fingers are bent. (did I just hear the end of lesson bell?)

lindalegs

Hi Pols,

As I've said many times before I've had RA since I was 27 and I'm 52 now, I have deformities. People look at my hands and watch me move around and know I have RA. My hands aren't pretty but they're functionable.

I would say that nowadays you are given Dmards such as Mtx and Sulphasalzine in large doses to help prevent the deformities and joint damage such as I have.

Protect your joints when you can i.e. when carrying bags don't hold them in your hands, as this pulls on your fingers, carry them on your forearm or on a long strap over your shoulder and across your body. When carrying heavy crockery support them with your forearm too.

Any swellings try to reduce with ice packs and gentle exercise.

Exercise, even moderate, is important to keep your muscles strong in order to support your joints and reduce swellings and pain. Advice from a physio or a GP would help you to get a daily regime to stick to and become as important to you as brushing your teeth. Swimming is another good exercise unless your GP or Rheumy advise you otherwise.

Try not to worry too much, treatment of RA has improved so much over the years.

Luv Legs

caprica

Hey,
I dont have much experience as I've only had RA for 8 months but I just wanted to say I'm 24 and this worries me too, so you're not alone in your fears! I think we all have these thoughts in the back of our minds. It does all depend on the severity of your condition, but personally as the months after diagnosis have gone by, I've lost less and less time worrying about the 'what ifs'.

As someone before me said, there's no point thinking about it *too* much before (and if) it happens. I also think that when something does happen, it tends to be a lot less frightening than in your nightmares. You know what I mean? Like, you'll probably find a way to deal. But hopefully it won't even come to that for either of us. Keep you chin up and enjoy today!

suncatcher

My hands and toes are showing deformities though not too bad yet. Im not too worryed about it. Im more worryed about my lack of confidance and self esseme which has taken a battering i just think its a stage im going through. Everyone is different and just taking one day at a time is all we can do. The treatments are better now and will continue to get better than in previous generations. I has told i was lucky as there is more drugs now before the hospital would have sent me home with pain killers they said. My doctor said about the old gold injections being awful. I think we have a lot to be more hope ful about than before.
My great great aunts were badly chrippled with ra. I have a lot of admiration for how they coped in an ordinary house.
Im glad there is more treatments now and look forward to the cure of it. We will see it im sure. try not to worry easyer said than done i know. Ive had mine over 5 years now by the way. My hands dont look to bad yet. try to stay positive and keep stress free as possible arther just loves stress. best wishes and welcome to forum from joanne

tillytop

Hi Pols - please don't apologise! There are endless questions that go with an RA diagnosis and we're all here to help as much as we can.

Re deformities - I know not everyone has the same experience but I was diagnosed 14 years ago with "agressive, erosive RA" and, because of a consultant who was living in the dark ages I was not started on the heavyweight treatment I needed for a couple of years. But, despite that, I have so far not had any significant deformity. Sure, my hands are not quite right but, although I am a little bit self-conscious sometimes I don't think that anyone except me would notice. And I always did have knobbly feet (thanks Mum!) so I have always felt I needed to keep them well hidden anyway! And, as has already been said, there are lots more drug options around these days, which weren't previously available.

But the other peeps advice about protecting your joints is so important - even if they are not hurting. It's easy to become complacent if you start to feel better. I know I do!


Love TIlly x

hurdygurdy

In my last job, I was made to feel as though I was fraudulently claiming to have RA.

There was another man in the office who had it, and he had very badly gnarled hands - they had to provided him with a special keyboard and mouse to use, whereas I was in the definite honeymoon period with Etanercept and was like a spring chicken with no outwardly visible signs of arthritis.

The department manager was doing an appraisal with me and we touched briefly on RA. He said to me, in what I felt was a cynical tone of voice, that he'd expect someone with RA to be more like R, who had bent fingers etc.

I would never want to have hands like that permanently (have been there and done that, when I've had alternatively fingers locked straight, and also locked into a fist), but sometimes I think it would make life a bit easier I did have something that you could point at and say "this is what RA looks like".


So in answer to your question, yes, I have had signs of deformity in my hands, but various drugs have eased it. It's not necessarily something that once you have it, you always have it. (Although I suspect some others on the forum may have experiences that contradict mine.)

tillytop

Pols - Hurdygurdy's post made a good point and one that I had forgotten about - that, sometimes apparent deformities like sticking fingers, do go away again. I know that is not always the case but it has happened to me. And, in my case, some of the damage which appeared to be permanent actually went away when I got going on Infliximab. So don't despair.

Hi Hurdygurdy, sorry you had such a tough time in your last job. Like you and, I'm sure many others, there have been times when I wish my RA was more visible (temporarily!) so that people could see that there really was something wrong with me. I will never forgot the day I had to tell my boss that I had RA and that the doc wanted to sign me off work. She said how sorry she was but then spoiled it by saying "well you look fine to me". If only she knew how long it took me to get up and dressed in the morning and that I had to stop part way to work and get out of the car to unstiffen before I could continue the drive and that I hadn't slept for weeks and that I went straight to bed as soon as I got home from work just so I would be able to get in the next day and that I spent time in the loos at work crying because of the pain etc etc etc.
I know it's been siad on the forum before but I really wish that all our bosses could experience the struggle with RA just for a week or so to give them the chance to understand at least some of what we go through every day. If only I had a magic wand.... :roll:
Love Tilly xxx

jordan7j

My mothers feet were awful, terribly deformed toes, and couldnt get normal shoes on at all. She had to wear these soft shoes that moulded to her feet. She was diagnosed at 17, in 1934. The treatment was aspirin and rest. She was hospitalised for 3 months after diagnosis as she couldnt walk at all. Eventually she was able to work etc. She married at 34, her hands were then quite bad too. We are very lucky with the drugs available, both for treatment and pain relief, can you imagine taking just aspirin for the awful pain? Anyway, we are all different as said, personally my hands just have bumps on them. I do use them too much, I lift young children, change nappies open jars etc. still not seen an OT, so need to get organised, my fault there, did ask at the clinic but not heard anything so far, that was in May. Good luck with the meds, Jay x

tkachev

It damages different joints. My hands look fine but I have had pain in the past with swollen, deformed bones starting but they went away when on Humira. The meds do prevent deformities much more nowadays thankfully. My biggest deformities are both my elbows which are stuck and cant weight bear. I would say carrying shopping bags on the bend of my elbows caused this! Sorry Lindalegs!!!!
You really dont know where it will strike but meds will definately prevent the damage our grandparents and parents suffered.

elizabeth