Joint Damage

This blog so far has been about me and my RA, I apologise if so far it has seemed self indulgent but I write it for me as a reminder of the stages of this chronic illness, of the battles I’ve fought and won and the demons that I continue to fight. I also write it for my fellow sufferers that they may gain insight and support from my own problems and experiences.  We are all different and my disease will not be the same as yours but for many of you we will have similarities.  For some reason those of us that are chronically ill are drawn with morbid fascination to the ills of others, medical shows and the health pages of newspapers and magazines.   Why is this? – maybe because we want to compare, to think we are not as bad as others, to think we are worse than others or maybe just to realize that what we feel and are experiencing is normal. To realise that there are people suffering from many illnesss worse than ours.  Maybe to try and learn what to expect from those that have gone before or maybe just because we live in a world of medication, doctors, illness and disease and it is what we know the best, what we are comfortable with, a common ground that brings us all together regardless of race, religion whether we are rich or poor, regardless of material trappings.  We look into each others lives often with dread and horror of what may be in store for us but we all pull together to offer support and real empathy.

This post is about  a topic I  have promised to share with others - the dreaded joint damage.  You may already have damage that is not as bad or worse than mine you may look in, in horror, at what may happen to you.  But this is my joint damage - it may not happen to you and if it does it may be similar to mine or it may not, it may be better or it may be worse our illness manifests in different ways in all of us. To be honest I don’t know anyone else personally who has RA so I have no idea how bad my joint damage really is in comparison to others -  but this is my story!

I was diagnosed 24 years ago and my wrists were one of the first joints to be affected, those of you who have read my blog will know that I took no medication at all for many years, I was not aware in those days of the potential damage to my body.

No one ever told me back in the day that as RA is an autoimmune disease that my body's immune system would react against itself and that the fluid that lubricates my joints would become inflamed. That cartilage and tissues in and around my joints could be damaged or destroyed or that if the cartilage between my joints was eliminated my bones would begin to touch and wear directly into each other, that my body would attempt to repair worn bone by growing more bone onto the bone on either side of my joints, leading to the joint becoming more and more difficult to move as a lip of bone formed around the areas of friction. Or that in time the joint could get so painful that I would probably stop moving it and in the mean time that as the areas where my bone was being replaced would be in direct contact they would possibly start to join together as if it was one bone being rebuilt. No they didn’t tell me all of this – but this is what happened….

Luckily as far as I know the only significant joint damage I have is to my wrists and my feet, my right side of both being worse that the left and I guess after 24 years thats not bad going...but I wish it was less..

My right wrist was very painful and sore  from the outset, typical with RA it had times where it felt ok and then I would use it and it would flare and swell again.  A wrist splint was my daily accessory.  At this time I had a young baby so lifting was just a part of my daily life and I gritted my teeth and pushed through the pain.  Gradually over a period of 3- 4 years the range of motion in my wrist got less and less but then as my body went into a natural remission the pain mainly subsided, but by then the damage was already done!  My wrist would ache if I over used it but I had learned to adapt, my range of movement by this stage was down to a 45 degree bend.  X-rays revealed no synovial spaces in my wrist it was a mangled mess.  I visited the orthopedic surgeon to assess the situation and was given the option of a wrist fusion but as the pain was minimal at this stage and I still had some movement I was advised against it.

When my RA decided to return some years later my wrists were the first joints to be affected. I started to suffer with soft tissue swelling on both wrists, up until this stage my left had been functioning fairly normally.  Many days they looked huge, I have always had very prominent ends of my Ulna bones (both my daughters have too) but these disappeared under a mountain of swollen tissue. During flares they were consistently painful, many days I couldn’t use them at all. When flaring I couldn’t lift or carry anything even the slightest movement was excruciatingly painful and if I touched or worse still knocked them I would cry in pain.  I had endless steroid injections into the wrists which would help for a time but always wore off. In addition to the soft tissue swelling there was of course joint swelling too, spongey knuckles, trigger finger and a variety of other swollen tendons.  Only when I went onto prednisone did I get any relief.   At about this time my feet started to hurt too and X-rays revealed damage to my metatarsal heads.  For those of you that have no foot damage it is like walking with pebbles in your shoes and I know those of you that have damage will relate to that!  My rheum said from my x-ray that my bones looked like Swiss cheese that the mice had nibbled....full of holes!  I was lucky enough to have orthotic insoles made which were a godsend to my poor painful feet.

Pre Enbrel swollen puffy wrist

Post Enbrel 

I stumbled through the next few years, adapting my skills according to the severity of the pain, dipping my toe into the medication pot but with not much luck until I decided to start Biologic therapy.  I have tweeted and blogged about my success at the moment on this drug so will not go into that here but I need to add in relevance to this post that since starting Enbrel the swelling in my wrists has gone and my left functions almost normally but my right still has only about 45 degree movement – no drug in the world is going to repair damaged bone! I guess I am lucky that despite the pain and swelling over the last few years my range of motion has not decreased any more. They will still ache if I abuse them purely because the mechanics of my joints are now faulty but I manage to open jars and bottles and I even manage gardening now they may not be quite as strong as they used to be, but in reality there isnt much that I cant do with them in moderation. Do they look normal? I dont know - to me yes maybe to you no, its surprising what we get used to.  My feet are ok too, discomfort occasionally as opposed to pain but even that is not very often.  My feet look fairly normal – well to me – again you may look in horror !  My feet are wide and I have a bunion on my right foot and my third toe has a slight  ‘claw’.  These days I am even able to wear 'normal' shoes as long as they are comfortable and no high heels, wedges are good! I haven't used my insoles for months.

For feet that have been walking
the planet for 50 odd years
they're not too bad

Whether I will suffer any more joint damage now I am on Enbrel remains to be seen but I am educated about my disease these days and will do everything in my power to preserve my bones.  Had I of know at the beginning what I know now maybe things would have been different…….

If I could say one thing to those of you that are newly diagnosed it would be 'find the right med now, if you can, trust me this disease is relentless in its destruction of our joints' - Good luck.

In the interests of comparison or in case you are just curious about range of movement with a partialy fused wrist I have recorded this video because as much as I describe my joints to you I believe seeing what has happened to my wrists will help you more……I hope it shows what I intended and thats the movement left in my wrists but apologise that I kept forgetting what I wanted to say..and please ignore my dog opening the door half way through.