rheumatoid arthritis

[linnypin1]

Hi I’m Lynne. I’ve had Rheumatoid Arthritis for around 5 years. I’m on (tocilizumab) and Methotrexate injections once a week plus 10 mg steroids . I’ve had lots of falls because of my knee giving way. I’m trying to build up my muscles but finding this difficult because I’ve got a tear in shoulder from previous fall. I’m 72 but was active up to 4 months ago when I had to give up my Passenger Assistant job which I loved. How has it come to this and why do I feel so abandoned.

Lynne

[helenlw7]

I’ve had RA since 2004. Is the problem with your knee rheumatoid or osteoarthritis? I have the same issue with my right knee. Mine is osteo and was due to be replaced in June this year but I was in hospital at the time because of a fall so the op was cancelled. I’m 68 and had to stop work when I was 59 because of a combination of the RA and severe asthma.

[Amnesiac3637]

Sorry you’re feeling abandoned, how horrible for you. Abandoned by family, rheumatology, GP? All of the above? It’s a miserable position to be in when your independence is threatened by immobility and pain and getting older definitely doesn’t help.

Am in a similar position -am 71, was pretty good up to a couple of years ago but increasing problems with my spine, steroid myopathy in my legs and peripheral neuropathy in my feet have all contributed to feeling quite vulnerable, a lot less mobile and pretty fed up quite a lot! I haven’t got to the stage of feeling abandoned as I have a strong friends group, a supportive family ( most of the time) and a fabulous rheumatology team but it’s easy, when you’re feeling down and fragile to feel the world is moving on without you and everyone’s fit and wonderfully able.

Lots of support on here and from NRAS and hopefully you’ll find another activity/job you can do and will give you a sense of purpose again. Do hope so.

[Runrig01]

Have you contacted your rheumatologist about the knee giving way. Many things can cause it, including tendonitis, where a steroid injection may settle things down enough, to let you exercise.

[wilbertjellyfish]

Please don't feel abandoned. Unfortunately all these conditions wear you down and it's hard to motivate yourself to advocate for yourself. I'm very guilty of burying my head in the sand and trying to ignore my health it only leads to hospital.

Start being a pain in the ass to your doctors and rheumatology team and see what can be done. They want you to stay active too, but you do need to really fight for yourself when you feel least able to do it.

[Sheila_G]

Hi. So sorry you are feeling low. When you say abandoned, do you mean by rheumatology or you just feel alone with your problems. Do you have anyone to talk to? You can talk to us on here anytime and know that we understand and support each other in total privacy. Don't hold back, sometimes it is the things we don't say that are the problem and we don't want to talk to our families because we don't want to upset them or because they don't understand. Please talk to us anytime. I hope you get things sorted soon. x

[janmary]

Are your rheum team and GP aware of your frequent falls? It should be an indication for some thinking about the cause - keep on at them until they respond

And have you got some knee supports? I imagine a walking stick would be difficult to use with a shoulder problem

[Angels54]

Hi , I have had same problem , can’t hardly walk with knee , I had a time where I was on infusion which didn’t work was I’ll over a month ,the only thing that helped was complain as it helped build my muscles back up 👍

[Passionflower]

Hi Lynn, sorry to hear you feel abandoned, the old saying a trouble shared is trouble halved, this site is for that to share and reassurance. I’m 70 and had this awful condition for many years. Hope your flare soon ebbs done.

[zen4]

Hi Lynn

Really sorry you are feeling so low. Like others have said check out what can be done re the knee and why its giving way. Re excerise there are a lot of strengthening exercises you can do seated or lying down. Do you have a physio? I have a very painful back through lots of spinal damage and I have been trying to strengthen this and my legs since a knee replacement which was fantastic. I do about 4 exercises on my back and 3 or 4 seated and standing with the chair behind me and my legs have got a lot stronger. Still continuing re my back. Unfortunately you do have to be quite assertive these days to get things done and motivation is difficult when you are feeling a bit low.