What RA?: I’ve had RA since I was 27, so 5 years now... - NRAS

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What RA?

karilynn85 profile image
19 Replies

I’ve had RA since I was 27, so 5 years now. There have been many ups and downs with being diagnosed, finding appropriate treatment, changing my lifestyle to a healthier one, etc.

I think I finally am on a medication regimen that works! I spent the last year of my life on prednisone. I’m finally off of it (for two months now) and I’m living pain free with methotrexate and leflunomide. I’ve also been on a low carb, no sugar diet for 2 months and I’ve lost 32 pounds. Inflammatory blood markers are normal now. I can snap my fingers again. I can bend my wrists. I can move my shoulders freely without wincing. I can stand up without my knees being in agony.

It feels so good to be here. I know medications can quit working, but I’m going to enjoy this time while I sit here and ask myself, “what rheumatoid arthritis??”

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karilynn85
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19 Replies
Doughnut61 profile image
Doughnut61

Wow good for you 👍 so happy for you and long may it last xx Thank you for sharing 😘 helps us all to hear meds that can work 😁😁😁😁😁😁😁😃😃

allanah profile image
allanah

Me too ! Had a knee set back yesterday but have been exactly the same on low carb diet. Blood sugars have been normal.lost 20kg and inflammation has been down

Long may it last!

Nettac profile image
Nettac

Excellent! :)

Always like to hear a success story. I’m really happy for you and long may it continue.

Hope! Yeay, thanks for sharing 😄

Great news!

I find cutting out refined foods and vegetable oils (absolutely no hydrogenated) and generally eating good, wholesome, nutritious foods has done a huge amount to help me survive harsh medications and stay healthy.

Enjoy! xx

Ruth12345 profile image
Ruth12345

Whoop whoop. Great to read. 😃

Scottiedottie profile image
Scottiedottie

Great news. I've been on low ca4b healthy fat way of eating since June. Lost 4 stone. Hasn't helped the swelling in my hands and foot pain etc. But generally so much more energy

helenlw7 profile image
helenlw7

Wow, that’s brilliant news for you. I was talking to my oh yesterday about pain. He was on painkillers for a few years for arthritis in his knee. He then had a knee replacement and is absolutely pain free. I was diagnosed with R 14 years ago and am on a good combination of meds (including steroids), and although I’m. Lot better than I was prior do diagnosis, I haven’t had a pain free day since 2004. So jealous!

EmilieD profile image
EmilieD

Thanks for the hopeful post!

nomoreheels profile image
nomoreheels

What a great introductory post, refreshing because as you'll probably realise mostly first posts are usually from those reaching out because they're not doing well or are newly diagnosed. I'm sure many will be reassured there is hope. Thanks karilynn. 😊

AgedCrone profile image
AgedCrone

Congratulations...long may you continue to improve!

Telling of Your experience will help those on this site who are still struggling to believe they will findtherights meds eventually.

Gnarli profile image
Gnarli

Thank you so much for sharing. It gives everyone hope that remission will be theirs too. Brilliant news and long may it continue. Huge hugs

J

medway-lady profile image
medway-lady

Great, me too as the RA is in remission so normal life.

Winnie53 profile image
Winnie53

Fantastic news! Thank you for sharing. We all need good news. Long may you continue feeling well. All the very best.

Nickijk73 profile image
Nickijk73

That’s fantastic news - I know exactly what you mean about learning to enjoy and make the most of the good days/times while you can,otherwise they’ll be gone again in a blink of an eye!! I too spent the best part of 3 yrs living the emotional rollercoaster of new drugs/treatments and all that goes with it..... the constant disappointments when you’ve got to cancel yet another catch up with friends at last minute because you suddenly can’t move,or another drug had failed to help,and then suddenly the right drug regime finally clicked into place with everything else..... I couldn’t put into words how happy I was that I could actually take myself off to see family by the sea that I hadn’t seen for almost two yrs..... pure bliss at being almost ‘normal’ again.... being able to drive ,walking along,unaided,by the seafront,and sitting in a restaurant actually just taking my time and enjoying the day out,and then,3 days later,just 10 days into my ‘notmality’ and someone very kindly rear ended my car whilst I was stationery in traffic😩 it’s been almost 18 months and I’m still trying to get back to that place I was where I could finally see my independence coming back again..... I know it’ll happen,as it did before,but just extremely frustrating that I didn’t get to enjoy myself a tad longer...... oh well,as they say,what doesn’t kill us makes us stronger,so i’ll just keep taking a day at a time until I get there again - hope you have plenty of fun times lined up to make up for the times you were laid up for 😊

Lesley_1 profile image
Lesley_1 in reply to Nickijk73

Hi Nickijk, sorry to hear your bad news. Sometimes life sucks.

I have had Rheumatoid Arthritis for almost thirty years. Diagnosed at 30, it didn’t seem so bad then, we didn’t know as much about it then as we do now, all I knew was my life wouldn’t be as bad as my paternal grandmother who lived in Yorkshire and was married to a coal miner and completely crippled. Bedridden until she died at 49.

In 2001 I was rear ended in a vintage car stationary at traffic lights, I received a whiplash and sore lower back which within a very few years developed into a slipped disc at L5/S1. Since then it has slowly spread to include all my lumbar spine causing excruciating nerve pain in my back, hips and legs.

I am partly incontinent no longer drive, or work and am on disability pension. I can potter around my small modified unit, if I go out I use my electric wheelchair. I am on Tramadol SR morning and night, methotrexate, sulphasalazine and Lyrica and Endep at night for pain.

What I would say to you is only my opinion and experience but stress of any kind makes our disease worse and delivers more pain.

You may think you are fully recovered from your car accident but I wonder if your disease does.

I visited my GP today because I’m having a big flare up and recently started on high blood pressure medication so it was just a quick visit, I thought I was relaxed but my blood pressure which has been normal and low for the past four weeks was high when he checked it today.

It made me think, was I a bit anxious, I didn’t think so, I mean we visit the doctor frequently right.

Perhaps some meditation cds, mindfulness might help.

Wishing you all the best

Nickijk73 profile image
Nickijk73 in reply to Lesley_1

Thanks lesley

I know full well I’m nowhere near recovered from that accident - I’m still fighting with the solicitors over the injury payout almost 18 months later,(it was the only way I could get Physio) and I’m not expecting that to be settled anytime soon,as I’ve still to receive reports that have been done,and also attend a rheumy appointment as they can’t understsnd why I’m not back to normal so far down the line....honestly,talking to people without these diseases is like banging your head against the wall most times😩 even when you tell them that stress adds to the issues it doesn’t seem to alter their way of thinking either..... like I said,banging head against the wall😝 luckily,the spinal surgeon I saw has given me a very good report stating that the accident will take around 18 months for my back to settle,stating that I had recovered very well from my previous surgeries - that should def help my case

I also have degenerative disc disease,for which I had three ops(fusion at L4:5,including cage,screws and bone graft,and then revision and replacement screw and bone graft 5 months after the first op because I had a slip at home 2 was after getting home from hospital.... only I could do that?!🤣 and then I had a decompression surgery literally three yrs to the day of my first op,when I just turned 40,yet I recovered well from those,because of how fit I used to be(I was actually hiking up the brecon beacons while I still had stitches in my back from the last op.... it had been a birthday present booked and paid for before my op,I certainly wasn’t going to miss out!) I’d even got back to the gym and was working out upto 6 days a wk again in between working full time,and then I just suddenly kept coming down with viruses that I couldn’t shake,and just after my 41dt birthday I finally got diagnosed, with psioratic arthritis, along with all the usual ailments that go hand in hand 😔 it’s been a long,hard 4 yrs,where I’ve had to give up working almost 25 yrs earlier than planned(def not a highlight as I’ve worked since leaving school in ‘89)

And I know that stress is a huge factor,which is why I love spending time pottering around in the garden feeding the birds and hedgehogs,along with spending time with my 3 housecats and my little maltese(I bought Minnie as an incentive to get me out of the house and walking again to try and regain some cv fitness) unfortunately this winter has absolutely crippled me with flu,and about every other bug out there - infact I was so weak I couldn’t even get my own wheelchair ramp out the boot of the car..... I mormally find that fairly easy😔. And then,as if getting over that wasn’t hard enough,my landlord had decided that since the tax laws have changed,it’s no longer viable for them to keep the house I rent,so I’ve now got to try and find somewhere to live on a benefits budget,and that accept pets..... definitely not an easy option..... I’m just so grateful for my fantastic support worker otherwise I think I would’ve truly lost the plot..,, it’s so easy to feel like you have no control over your own life when your body doesn’t work like it should,and you can find yourself almost homeless when you’ve never missed a payment or had any issues in 3 1/2 yrs since I’ve been here - still,everything happens for a reason,so I just have to wait and see what mine is 😜 and in the meantime,I’ve got some fantastic people to support me along the way too 😊

Lesley_1 profile image
Lesley_1

Well done. Enjoy every moment, there aren’t many wins with this disease so you savour every day. You go girl

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