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

27 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

  • Hi Mary

    AlenAcid is in pill form as I, despite years of 2 blood tests a month, still have a complete paranoia of medical procedure thus the infusion would have to be under sedation!!!! I am in the UK. Being bed bound was awful but strangely I was so ill with various boring symptoms and in so much pain and felt cold all the time I pretty much slept for most of that time and it seemed to effect my brain in that thinking was not normal. I was hovering in the life-death space in that time really. I am improving due to all kinds of reasons and am determined to keep going for as long as poss. I will opt for euthanasia if I am to be kept in bed forever again as this is not a life as I understand it. So no worries.

  • what a sad post u have been to hell and back thats the only way i can desribe it i do hope things get better for you how on earth did u get that ill was that the osteo when i was told i had ra then osteoporosis i wasnt told much think i was to shocked to ask they just gave me a small book to read that was 8 yrs ago since i been on this site i have learnt quite a bit i have never been as ill as u and i hope i never am so happy u r getting out and yes dogs are great do u take any meds try to think positive i know thats not always so easy xx

  • Hi, thank you for your kind words. It is ok to be that ill because mercifully I slept all the time and felt ridiculously cold and could barely move and my brain seemed to switch from intelligent to numbed out and unable to think or remember or feel anything. I cannot remember much of those years either, just the fight back. My dog was really a step towards refusing the condition as I knew I would be in a wheelchair in 2012 but am now walking more, my lab now over 6 years old bonded with me and we learned to walk together.

  • that was a lovely post so glad u r getting out with your dog they really do help i look after someones little dog 3 days a week and its changed my life i lost my dog 3 years ago to diabetis i think we all fear the thought of a wheelchair and losing our independence keep moving thats what i think some very sad storys on this site i have been lucky near enough lost use of left hand but can cope as long as my legs keep moving lol have a nice day and enjoy your doggie 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

  • I am sorry to hear your diagnosis was so early for you, but your battle sounds brave and full of jolly optimism. Aqua fitness sooooo helps and I used to swim daily when I was able to and do all the sports I could. Lovely. Dancing, yayy. I am glad I am not the only one who has proved the docs may be wrong but they are learning too I suppose. In a way telling me I would be in a wheelchair was the kick up the butt I needed to get me going so I am glad I was told so directly. It made me start fighting harder and it worked. Clever doc! My bloods are neutral now, no more in the red zone with the 7 tests they used to do on vampire day!

    Stick in Old Time

  • And yelling at the trees. I talk to the trees and the birds and the sky. They are all good listeners and never say "can't"

  • 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

  • Another fighter, hi! I have felt like the only one but I had an inkling there are others out there. My diet is vegan mostly, but I cheat. I cannot take painkillers as I go into complete teeth chattering shock with paracetamol as I took so many! Now I take none of them. I take diazepam to relax the muscles and brain to forget and get time out from the toxic torture. Sometime brandly comes into the picture mixed with ice cream which helps as brandy seems to detox and relax the muscles and kill the pain. What a trap it is!!! Admiration that you have got through 31 years in the body trap. I am a junior to you, only 11 years under my belt, like doing time!

  • 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!

  • Hi. My lab is worn out very easily, he loves his sofa and his food and is easy to walk as he is slow like me!

  • Labs are easily tired out, just thinking about food exhausts my lovely boy. He is a great comfort and I love his Disney style snoring!

  • Yes, exercise is a doublewhammy. Whilst I am walking I can feel the pain but I can shift all the time to alter where it hurts but, when I get home, the exhaustion has already taken over and the joints and muscles seize up and lock and ache and burn and itch etc and I just want to be out of it I do not give up either except when the weather pressure drops and that makes me feel like I am full of electrical charge, weird and I cannot think or move normally. I fight and fight and tire and fight, caged bird

  • 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...

  • Thanks Em, genes in family on my dad's side.

    The risedronate sodium does fix the VitD into bones, but all those years in bed wasted my muscles too. I am fitter and fighting now. I am fighting local school actually as their adult kids keep walking into me when they are in the street, they are disrespectful enough to just presume I do not actually exist. Grrrr. I am scared they can break a bone or knock me down or cause me a joint problem. Really gets me grumpy when I mistime a shop or something like that.

  • What's your dog called?

  • Spookie. The photo is not of Spookie but a lookalike as I do not have a camera and technology is cleverer than I am!!

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

  • The image is lifted from online as I have not got any photos of my dog that are as good as that one. I did this because the lab is identical to mine so I thought it would be ok to use it as it would be small. My living room is not so tidy either!!!

  • forgot to mention love picture of your dog xx

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