11 years into RA and fighting

11 years into RA and fighting

Hi

New on the block. I have RA since stress drove me into my inheritance of this autoimmune condition then a flu exacerbated it into agonizing screaming burning hell with only my cervical spine bendable. Fight I did. New drug seems to be working but the dog works well too. Walking is the world to me now as I get out and have built back some muscle from five years in bed and wishing I were dead. Diet matters. Vegan helps greatly and cashew nuts build up muscle. My hips hurt today, normal but worse today. Fighting to stop my thin bones from getting thinner with calcium and D3 and risedronate sodium when I remember. Neck pain all the time. Tired often. Anyone else fighting back? I can say I was told I would be in a wheelchair and a care home by 2012 but it is nearly 2017 and I am still moving around, painful and not much time to do stuff before I tire out and hurt but hey, way to go.

Piccie of my lovely friend who saved me from a wheelchair. Love him

13 Replies

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  • That's wonderful to hear I was told on my first visit to rheumatologist that I would end up in a wheelchair that was in 2013 so I now feel encouraged by your post hope thing stay positive for you love the photo of the dog

  • hi just read your post very interesting i honestly didnt know ra thins the bones i have ra also osteoporosis and my bones very thin but always thought that was osteo when i was diagnosed 2008 i also thought i would be in wheelchair i also lost my dog didnt get another one as thought wouldnt be able to look after him anyway now look after someone elses dog 3 times a week i love walking its good to keep on the move if possible keep up the good work xx

  • Hi Mary

    I think the osteoporosis was due to the inactivity being bed bound for so many years and the steroid destroy bone too. Keeping active is key for sure. The dog walking is great isn't it. I get depressed horribly if I do not get the dogs out. Or someone else's dog or horse or llama. Animals are great as they give the joy and energy that works best!

    Cat

  • hi harvestingkarma sorry didnt realise u had osteoporosis as well do u get the alendronic acid once a year i think we only get three i had my last one in oct its a infusion, i got a t7 vertebral compression fracture and i thought this is it no walking but all is ok probeley because its top of back and yes i do love my walks and i think animals are really good for u better than some people lol must have been terrible for u being bed bound i cant think of anything worse i read some of these posts and i feel so sad count myself lucky at the moment are u in the uk xx

  • I have been very fortunate in my journey with RD. I was diagnosed quickly so have had the advantage of early treatment. I was told originally that I would be likely to die in my mid-fifties. When I got to that age, I happened to see one of the specialists that I originally saw thirty years previously who was amazed that I was not in a wheel chair.

    Now twenty years later (borrowed time, hey!) I can still do some dancing, a bit of walking (around, not up mountains these days) swimming and aquafit. Because it is SO important to keep moving, I am probably fitter that many others of my age.

    But it comes with a cost. Daily pain, poor sleep, side effects from medication, operations on the joints, letting people down when I just can't do something ...No it's not an easy path, but it can be done.

  • just read your post cant believe they told u that u would die in your mid fifties that is dreadful was that because of the rd u sound a very strong person to cope with all that i am shocked they said that to u and i am so glad u proved them wrong keep up the good work and yes side effects from the med not good unless u find one to agree with u it shows what u can do with determination well done xx

  • You are an inspiration to others and it good to know you can battle on some days you wonder what it's all for

  • Good for you, and well done for keeping on going!

    I totally agree about dogs(super pic by the way!). If it wasn't for my collie I would probably stay in bed. As it is we go on daily walkabouts. I walked 7 miles the other day! I've been knackered ever since, but it was worth it.

  • I was told I would end up in a wheelchair, 31 years ago. Triple foot fusions and a couple of fractures have had me in a wheelchair, but as soon as I could was out of it. Want to prove them wrong. Walking is a problem, but still persevere. Have had osteoporosis too, from steroids for a few years now, recent Dexa scan a month ago still shows low in hip and femur, was disappointed as really try with my diet, Vit d b12 , Alendronic acid, also exercises, will be having a review in January. My RA is controlled by meds, just the other bits and pieces that pop up to be dealt with. Love the picture of your dog. X

  • Looks like you've worn your lovely dog out! I've only been fighting for seven years, but will never give up. Exercise is one of things that keep me going. Lovely to hear from you. All the very best. To infinity and beyond!

  • I think a prolonged period of unavoidable stress was the precipitating factor for me too. It was only later that I discovered RA was in the genes of both sides of our family.

    Have you asked about taking boron to help the vitamin D and calcium preserve your bone density? (If you can with risedronate sodium - I'm totally unfamiliar with that!)

    ncbi.nlm.nih.gov/pubmed/788...

    According to another study, it also reduces inflammatory markers.

    ncbi.nlm.nih.gov/pubmed/211...

  • What's your dog called?

  • have you posted this image elsewhere - it seems to be coming up on pin-interest as a calendar image?

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