Hi everyone, my name is Julia and I was diagnosed with RA at the age of 29, I'm now 52. I have had numerous joint replacements, both hips, shoulder and triple foot fusion to name a few. I have been told i need my left hip replacing again and I am on the waiting list and have been for 16 weeks. Also, my other foot needs a triple fusion too.
I have over the years been in and out of work, mainly admin work, and i have had my current job for 10 months. Unfortunately, I have been off sick for 10 weeks now and I am depressed and feeling lonely and sorry for myself. I don't think I'll be going back and to be honest they won't miss me.
Anyway, I take lots of medication daily and inject once a week (biological). I feel constantly tired and my weight has ballooned to over 15 stone! I have no motivation to exercise and also find it painful. I'd like to hear how other people cope with the daily pain and fatigue, any tips would be great. Sorry to sound so negative but, sometimes it's hard to be positive.
Hope to hear from you soon x
Written by
NannyJ
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Hi SylviaMA, Thank you for your reply. I do have family, my husband and daughter live with me. My husband works long hours and my daughter (18), has her own life to lead. She's going to university in September. My other two children are grown up and married and live further away.
Over 20 years is a long haul with this disease, so we'll done for managing to keep working and keep yourself together all that time. Have you had a look on NRAS.org.uk to see if there are any local groups near you? It might help to meet others face to face. But feel free to have a bit of a rant here, we all need that from time to time!
I'm so sorry to hear how down you are. Keep posting/ talking on this site- I find it helps a lot! Can you find something to treat yourself?Something to look forward to? Maybe tell your Dr (GP) how you feel- they can sometimes refer you for 'social therapy' ie refer you to groups where you get to meet people and chat. Can you get out at all? Using e.g a mobility scooter? I hated the idea of one, but now rely on it utterly. Sending you a gentle hug x
Hi Julia, I'm Bridget. I've not posted before but you and I have such similar situations I thought I'd reply to you. You are not alone! I was diagnosed with JIA age 15, and am now 45. I've had both hips replaced and revised as well. First hip was done when I was 16, revised at 29 and then again about a year ago. The other hip was first done at age 24, then revised again about 7 weeks ago. I'm recovering well, although frustratingly held back by the rest of my joints 'playing up'. My feet are my nemesis. Both have had triple fusions (hind foot) which was necessary but does mean the rest of my feet take more strain and have bad osteoarthritis. My knees are also knackered but not yet bad enough for replacing as they are only bone-on-bone under the knee cap and they won't do partial knee replacements as I'm too young, and they don't tend to last well. I inject Enbrel once a week, but still live on anti-inflammatories and pain killers. I started amitriptyline for pain a while back which has helped.
I also struggle with my weight, getting the energy, enthusiasm and courage to exercise when in such pain is difficult and I find I'm always swinging between beating myself up about not exercising enough and giving myself 'permission' to rest. I haven't worked for about 5 years as I gave up work to look after our son, a job that often takes me to the edge of my physical limits but does allow me time to also rest when he is at school. I'm not sure I could hold down a full time job at the moment but am in such a fortunate position that my partner earns enough to support us. I'm not sure I'd qualify for any financial help anyway. I can't even get a blue badge in my area, which is ridiculous.
Anyhow, that's my story, which I wanted to share to let you know you're not alone. As far as tips go someone recently said to me that they used mindfulness as a pain strategy, so I am looking into this as at the moment. Otherwise for me it's about recognising when I'm having a good day, and making the most of it, as well as allowing myself to rest (something I'm not good at) when I am having a bad day. Oh, and Weight watchers has helped me keep a check on my weight gain.
Sorry for the long reply but I hope it helps in someway.
Hi NannyJ and welcome to the gang. You need never feel lonely again. This forum is cram-packed full of lovely, informed people who know what it's like to live with RA, RD or whatever name this foul disease is currently going by. It has certainly been a lifesaver for me. If you need to moan, rant, share a giggle or whatever I reckon there will always be someone who has been there, done that and got the entire wardrobe of t-shirts. Hugs
Oh I love this forum! I respect and admire you nannyj for posting how you feel. I've been tempted but stiff upper lip & all that prevented me. I too was diagnosed age 15, I'm now 63. Lots of ups and downs. I think we should be recognised with long service medals! Thank you one and all.
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RA Ankle Fusion
