Hi Maimie
In many respects my story is similar to Ellie's story but with a very different outcome and one which you perhaps would prefer not to know about!
I too have had RA since 1988 but mine actually started in my feet. Back in those days there was little or nothing in the way of help and you were more or less left to your own devices to sort adequate footwear etc. I was very seriously ill for the first twelve months as the disease took hold controlled only by high dose steroids. As a consequence I suffered significant joint damage particularly to the metatarsal heads of both feet. Living by the seaside I have had many years of walking along pebbled beaches; dropped metatarsal heads is a very similar experience only considerably worse as the soles of the feet felt like they were burning away with pain.
I tried all sorts of footwear and insoles including specially made orthotics, great in the short term, but nothing really helped long term because of the severe damage.
In 2000 I was referred to an orthopaedic surgeon who advised me that the only way forward was to have the very damaged heads removed. This would mean that the ends of my feet would become quite floppy and my feet would be shortened by the operation. He also said that it was primarily a salvage procedure for painfully deformed rheumatoid feet and would only be prepared to do it if I had both feet done at once (apparently people tended not to return after the first op!). Anything had to be better than the dreadful pain and discomfort I experienced daily, so I agreed.
The operation was nothing short of miraculous, even being able to walk with both feet in plaster was a huge improvement! I did lose some foot length and now one foot is a size 4 and the other a size 5, not ideal! I also have little feeling in my toes as nerves were damaged during the operation, but I was warned this might happen! Who really needs to be able to feel their toes anyway?!
The first few years were great and being able to walk well with good trainers to support my feet was a real bonus. Even managed to climb a few mountains! Then it all started to go wrong! The few 'heads' that weren't removed started to drop taking with them the other metatarsal bones operated on previously. The surgeon was now of the view that further surgery could not be attempted and referred me to orthotics once again. Basically now back at square one using specially made orthotic inserts and well supporting footwear.
My advice to people is to get early podiatry assessment (even if you have to go privately) and if necessary orthotic input. The sooner damage limitation is used the better the outcome for the future. You only get one pair of feet, they take a lot of pounding, get little consideration (until they go wonky), and they have to see you through life!
Perhaps not the success story you are after Maimie but I can't stress enough how important foot care is. There are many small bones/joints in the feet and RA has a habit of attacking the smaller bones of the hands and feet. By the time you can no longer 'put up' with the discomfort of foot pain it may well be too late and, sadly, damage done.
Lyn x
