NRAS
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Meds and Me

I'm new to this blog--have had RA for about 4/5 yrs. I've been on Methotrexate and Prednisone for the entire time w/ the exception of 2 months last yr. and 4 months this yr (2017).Both times it came back w/ a vengence and had to up the dosage to get things under control.Recently had a lot of pain and swelling in my right ankle and Dr. kept saying gout but I felt differently. Finally had x-rays and MRI and it showed a tear in the tendon in ankle and bad RA in the front of the foot. Also pain in right knee which turns out almost bone on bone and a lot more arthritis.Ended up getting a shot but only feels better when I wear a knee brace.I had forgotten how I felt on the Metho. and not thrilled to be on it again, but I really don't have a choice. I'm constantly exhausted , have already started to loose my hair again and stomach is off in the A.M. upon rising. The hair lose and exhaustion are the things that really get to me.Have to have an Arizona ankle brace made which I most likely will have to wear forever bec. of the RA in combo with the tear.Have read that Prednisone can sometimes cause tendon problems like tears.I have now officially named myself the gimp and try to keep things light and laugh at myself.Some days better than others. Main goal is to get in good enough condition to play golf this spring which I absolutely love. May have to develop some new techniques for this poor old body but I'm determined. Wish me luck-----thanks for listening and I wish everyone well. Keep the faith- better days are ahead.(Even though I hate these meds-----LOL ).On bad days just figure it's time to rest and sleep.

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Warm hello, mrdiggs/ (aka beloved ‘gimpy’), if I may "pull your leg" ☺️ !

👋 😌

Shaun94 is an RA-er who was also diagnosed with gout. He may be worth a look-see: healthunlocked.com/nras/pos... (scroll downward to 2-part video bearing Shaun’s name. 👍👍

Very best wishes to you ‘gimpy’, mrdiggs. 😁 🙏 🍀 🌺 🌞

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🎈2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋 🎆

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Thanks for the reply-looking forward to talking to other Ra sufferers as most people don't have a clue as to this miserable disease.Was healthy all my life and then one day just woke up in agony w/ a hand swollen about twice its normal size and couldn't use it for about a month or two. Walked around in a sling to take pressure off and since then it seems to visit most parts of my body.The gout thing seems to have been a misdiagnosis. Had to push for x-rays and MRI to be sure -and sure enough it wasn't. Even had gone on a special diet to no avail. How are you doing and were you diagnosed w/ Gout?

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Am gout-less & doing well, mrdiggs. [Dietary lifestyle changes fortunately worked well for me. Though I do understand it’s not for everyone. 🙃 ]

Yes, had to be proactive ( healthunlocked.com/cure-art... ) in helping myself. Think you’ve already discovered it’s how you have to be. 👍👍

Yes, if remembering correctly Shaun’s initial diagnosis of ‘gout’ was a misdiagnosis. [Please don’t quote me on it as it’s been quite some time 🕰 since I’d heard Shaun tell 🗣💬 his experience.] Seems to be not an ‘uncommon’ thing, misdiagnosis 🚫 , re-diagnosis 🔁 , re-re-diagnosis 🔀 . . . ad nauseum 🤢🤮 . . . ? 🤔

(Where would the fun in it be if we could be easily/readily diagnosed at the outset?! And by-pass the joy of being dragged through hell 🔥☄️🔥 ?! . . . 🤣 🤪 🙃 )

You’ll soon meet up with fellow compatriots to share ‘tales of horror’ 🧟‍♂️ 🧛🏻‍♀️ 👻 . . . 😬

There’s no shortage of hell-a-shish experiences to swap & commiserate over & to share gobs of information, & to have some hearty, outrageous laughs. 👍👍 Lots ‘n lots of experiences about. ☺️ 😌 😊

Yes, the sudden onset of crippling pain/ debilitation 😫 ♿️ 😩 is an earth-shattering shock 😱 🤯 especially if we’ve lead a relatively ‘normal’/ healthy life. It takes some getting ‘used to’ the ‘new normal’. Yes, the roving ‘traveling circus’ of pain rotating 🤹‍♀️ throughout our body (‘making the rounds’ visiting each joint ✋🔥🤚. . 👣 . . 💥💪) is not unusual. Again, where would "the fun" of it be if it were ‘predictable’? 😂 😂 😂 [If we don’t laugh 😂 at the outrageousness of it all, we’d weep 😭 — endlessly . . . 🎭 ]

Kindly take comfort in the thought that things can & do get better. 😌 🙏 Loving patience & willingness to ‘work through it’ gets us there. 😌

Hope you’ve support of beloveds 👨‍👩‍👧‍👦👨‍👩‍👦‍👦 around you; they really can help us through the rough patches. Please take gentle, loving, good care of yourself, ‘gimpy’ mrdiggs, & please never lose your lovely sense of humour. ☺️ It’ll serve you well. 🙏 🍀 🌺 🌞

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What a great reply.Many, many thanks for taking the time. Along with an absolutely great husband who helps out tremendously, I have a loving old dog called Mr. Diggs and a new rescue cat named Beldar. They all help me keep things in perspective and laughing at their crazy antics. It's amazing how petting the animals helps my hands. along with running them under warm water when acting up.Sorry to say my furry friends move faster than me--LOL.I'm already counting the days to spring, this winter is brutal and since my sledding days are behind me it makes for a lot of time on my hands .I like to cook so when my hands aren't first class ,I run them under warm water and slowly start food prep. I figure use it or lose it-it's not pretty but I think I have to keep pushing and use them.Now the foot and leg are another thing. Standing really tires them out so need to work on strengthening them again.Hoping this new brace will help, should be getting it around the 18th , the knee is just a matter of time before something will have to be done. Doc says age doesn't matter in replacement so pushing it off as long as possible. Bone on bone and Ra there is not the best situation--LOL.I think I need "The Tin man's oil can "--Take care Kai and we'll talk soon-until then-keep on moving and if I find that oil can I'll be sure and send it along your way-------The Gimp

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I have a stool in my kitchen for when i want to cook,i much now as i can't hold things very well. Hubby does all the cooking these days i am sad to say,he does nearly all the housework as well.xxx

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Have you been given a perching stool Sylvi? I was given mine by OT & it's proved invaluable. In fact I now have two as I've inherited my f.i.l.'s too! I keep one in the kitchen & one under the stairs for jobs the other end of the house. x

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I got one from the charity shop which i keep in my bathroom.xxxx

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We have plenty of charity shops where we live but would you believe the majority aren't allowed to sell disability aids. We had quite a few things we tried to return when my m.i.l died, all new & never used but of course the people who supplied them didn't want them back. But what surprised us was most charity shops weren't allowed to take them either, even though 2 rollator walkers, bed sides & such didn't even have the plastic taken off them. We even tried to donate them to the care home where she spent her last weeks, they weren't allowed to take them either, not even if removable parts like the handle grips were changed. Crazy mad. One for a local animal sanctuary took some, being independent I suppose they were grateful of anything that could bring in some money, but others ended up at the tip, such a waste because as you know these things are silly money new. They can sell mobility scooters like yours so why not brand new disability aids that some old dear could get lots of use out of for little money? Sorry for the rant, just makes me mad, waste. x

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Our tip has a recycle shop and you would never believe the disability aids they stock and that was where i got my bowls for my table ornaments at Christmas. They are so cheap as well and so worth a visit.xxx

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What a good idea! Pretty sure ours hasn't otherwise we'd have been told when we took them, unless one had opened since, it was a couple of years ago. x

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Brilliant place to go, i have a over head standard light one of those crafters use i got for £8 and much the same for the one in my conservatory. I got a hugs parasol for about a tenner as well from there too. Ask your local council about recycle shops at the tips.xxx

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Will do. x

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If your beloved 2-legged 🤵 can’t get you through it, ‘gimpy’ mrdiggs, the beloved 4-leggeds can — your namesake 🐕 & Beldar 🐈.

☺️

Don’t know if this’ll help at all but my understanding is if you can get the inflammation 🔥 ⬇️ down that’ll go a ways towards reducing pain, decreasing fatigue/ exhaustion, & easing hand ✋ movement 🖐🖖 👋 🤙 ✊👌🤞 (as well as whole body movement 💃🕺) ? 🤔 Lot’s of input to consider from folks following on below. 👍👍

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Yes, used to run hands under hot water too. 🔥💦🤲💦🔥

Lot’s of little tips ‘n tricks we figure out along the way. 🤔💭 💡

Whatever works is a blessing 🙏✨! 😌

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If you’ve access to a heated 🔥 pool 🧜‍♀️ 🏊‍♀️ or even feel better after a hot epsom salt bath 🛀 🛁 soak, that may be a nice gentle way to ease into movement 🚶‍♀️? If you’ve access to a sauna 🧖‍♀️ or steam 💭💭 bath 🧖‍♂️ that might be an additional way to ‘gently lube the ole joints’? 🤔

[Don’t know if Somerset King 💁🏻‍♀️ ( portfolio.cpl.co.uk/inspire... ) might interest you? 🤔 Found her to be a gal 👨‍👩‍👧‍👦 worth a look-see.]

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In meantime, here’s a drop of oil 💧 to get things moving ( giphy.com/gifs/1dLjvy5ZBd4T... ) & another drop 💧( giphy.com/gifs/Vmzm2SHoIfYB... ) to keep you going till surgery 🔪 time 😳 ( giphy.com/gifs/3o7TKDt2tKDR... ).

Spring will sprout 🌱 soon enough leaving behind ❄️ 💨 🌨 ☃️ 🛷 🥌 ⛸ 🎿 ⛷ 🏂 🧤 🧣 . . .

& bringing ‘n springing in 🌷🌹🌻 🌸 🌼 🌺 renewed hope 🙏 😌

& cheerful, sunny 🔅 ☀️ 🔆 🌞 😊 golfing ⛳️🏌️‍♀️ warmth . . . 🕶 👟 👚 🧢 😎

Take good care, dear lady. 😌 Please keep those lovely 🌷 spirits 👻 up. 🙏 🍀 🌺 🌞

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Hi Mr D - I too find animal therapy very helpful. Also a big mug of hot tea or coffee; I wrap my stiff and painful left hand around it and let the heat seep into the bones......and then I drink the tea.

I found knee exercises from the hospital physio helpful too. Little and often seems to help more than trying to do a week's worth of exercises in one day. Good luck and keep in touch with this lovely group.

xx

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Well get a buggy for when your playing your beloved golf darling,can't they do surgery on your knee and ankle? xxxx

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Love reading positivity. My elbow is bone on bone and pain is 👎😕👎!!! so a knee must be worse. We are fortunate to have drive (would like to say that is an intentional golfing punn, but sadly im not that clever ) and positivity, makes a difference the 'can do & will do' attitude. Im determined and sometimes my rheumy has to have words with me, as he says I dont help myself. Im learning. Been living with RD about 15 months now. Take care.

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Sorry to hear you're struggling. If some of your pain is from RA rather than OA, have you tried other drugs? To have stayed just on Methotrexate for 5 years and the disease still not to be fully controlled seems unfair....especially if you are relying on prednisone. Hope it's just a low dose.....nd presumably you do take folic acid also to help with tiredness and hair loss?

But willpower can work wonders so hope you achieve your dream of getting back onto the course.

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It doesn't sound as if the Rheumatoid disease is well controlled on the methotrexate if you are still needing prednisolone. Have a look at the treatments page on the NRAS website - you might like some information so that you can go armed to your next appointment with some queries and asking 'what about xyz?'

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