46 years old and seriously struggling, and now virtually incontinent, I need support


hi all,

I’ve had RA for 40 years and I’m about to have my hips replaced, the first one being at the beginning of June. I am really struggling as I’ve had to come off my Tocizilimab infusions for my operation and I’ve now become quite incontinent and I dare not go out anywhere. My legs now just “go to sleep” as I call it and my muscles are shot. I am soooooo embarrassed because I used to be an extremely active person but I’m now virtually house bound. My hubby is amazing and completely understands and helps me with everything but I am just really struggling at the moment and it is seriously stressing me out. I have emailed my specialist earlier today to see if I am allowed to up my medication that I am allowed to take now and up to my operation date, and I have got occupational therapy sorting me out a comode. I have had to stop my hydrotherapy that I have been doing for obvious reasons but I feel so alone in this and it’s costing me my social life as I’m too scared to go out just in case I have an accident somewhere. I am honestly so overwhelmed by everything as I have RA in every part of my body and now have severe osteoarthritis in my hips and lower back. I just want to know that I am not alone. Does anyone else have this problem and how do you combat it because this is new to me and I’m normally a social butterfly but now I dare not leave my home. :(


  • PeterJ
    PeterJ Administrator Posts: 913

    Hello @Lisaasa14 and welcome to the Online Community. First of all you are not alone but now have lots of new friends - you just haven't connected with them yet! We are a friendly and supportive group on here.

    It is good that you have a supportive husband and also that you have got back in contact with your specialist and I hope they sort your medication out. Each of us are on a journey and I am sure it will get better for you and you will get a social life back.

    Have a look through the following article from our website, some of which I hope will be useful to you and of course we have our Helpline, number below, if you need to talk to someone about your condition.

    With best wishes


    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm