Is there any hope?!

My poor feet..........lumps and bumps - swelling and bony changes.

"Don't worry" says rheum nurse "it's only bone" when I pointed out a painful lump on the top of my foot. ONLY??!!

I dread looking at them. I dread waking up and wondering what shoes I can force them into today. I dread even thinking the words "Rheumatoid Arthritis" because I don't want to be reminded what it's doing to my body. I dread getting older. This is my body at 26. What will it be like at 56, 76?!

I've had short bursts of quieter disease activity over the last 5 years but my feet and ankles remain the elusive problem. I know the damage is irreversible but there is active RA raging away despite Humira, MTX and Leflunomide. Is there any hope for actually getting this under control for a long period of time? It feels like it's slipping out of my grasp. :(

9 Replies

  • Ask to be referred to the foot clinic at the hosptial they can make you insoles for your shoes which ease the pain and will in turn help control the way you walk. I have had RD since 26 I am now 49 my feet look better now than they did then as I have had correction operations don't fight it ask for help good luck

  • Thank you for the reply. I'm feeling quite lonely and isolated with it all right now.

    I have been to 2 different foot clinics and tried about 6 different types of insoles which I don't get on with. The solution was very good shoes which is usually enough. However, summer shoes are always difficult for me. Bring back the winter boots, I say!

  • HI Crash Doll I can't give you any advice as I don't know enough about RA as I was only diagnosed recently but I wanted to send a big hug to you. I am so much older than you and struggling to cope with the emotions so I have nothing but admiration for you or anyone else your age to be coping with it. I hope you are feeling a bit better today xx

  • Thank you, lainee. I am feeling a little less miserable right now. I really appreciate the support xx

  • Hello crashdoll, sorry to hear about your feet. I can relate to having foot problems, having first had both feet operated on at the age of 9 & I now walk on four toes on both sides (these complications were due to another condition, not RD). With RD which started 4 years ago when I was 32, I now have even more painful feet and a lump on top of the right one like you describe. Apart from seeing a good podiatrist have you spoken to your rheumatologist about the RD being active despite being on 3 drugs? When did you have your last meds review with them? When Humira didn't seem to be working for me my rheumatologist put me on Enbrel which has slowed down the disease and my bone erosions have stabilised. It has only been 6 months but it's starting to make a difference. If the drugs aren't effective your rheumatology team should be looking at why and what can be done to get your condition under control. Could you give your specialist nurse a call about it and ask if you could come in for a review asap? Hope you feel better soon x

  • Thank you for the reply. :)

    I've been on humira since April. It's giving me some relief but it tends to wear off as the 2 weeks go on. Increasingly the injections to weekly has been discussed, so I hope my rheum will agree when I see her in September. They asked me to wait about 6 months as, apparently, improvements can take some time.

    Rheum team are a bit baffled with me. My main problems are with my feet, ankles and SI joints. I am seronegative and my CRP is always normal with my ESR always high, and I don't seem to respond to treatment very well. I often have an initial improvement but it always wears off. I am considering going privately just to get another opinion. I do really like my clinic and they've been really proactive in trying to get the disease under control but as time goes on, I am getting worried.

    Ooops I rambled! Sorry xx

  • I'm glad to hear that you're seeing your rheumatologist soon. Having said that, if things get really bad you could always try and get an urgent appointment which is what I've done in the past. I can understand wanting to get a second opinion privately- I've done that too and it was useful. No need to apologise, it's good to talk! Take care xx

  • So sorry you're struggling at the moment. I'm nearer 56 than your 26 so it must really be bugging you. I'm also sorry you have problematic feet & I know just how you feel as mine aren't the ones I had before RD hit either. They were always quite pretty as feet go & used to paint my toenails whereas, now unless for a special occasion where my comfies wouldn't be acceptable, I hide them away. I also have the bone on the top as you describe, it's called a saddle bone or metatarsal cuneiform bump & CAN be painful! I get shooting pains from the big toe & then goes from that to a nagging pain. It can also affect your first & second toes but with me that's more of an dullish sort of ache.

    I hope that the combination of meds are found that work better for you. It's so frustrating when needing to try different ones but sure there'll be the right mix for you, it just a matter of finding it.

  • Hello

    Now I have been provided with adapted shoes that correct my longer leg than the right on and an insert that gives the feet relief from various problems. I have had my shoes now for a long time and when they need repairing they do it for me.

    When the shoes need replacement they measure me up again then offer me different designs. Generally after a time they give you two pairs of shoes and the range is quite extensive

    Ask to see a PODIATRIST there is nothing to loose

    Good Luck