Flare up: Hey all. Feeling miserable today because I’m... - NRAS

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Flare up

Elmo333
Elmo333

Hey all. Feeling miserable today because I’m flaring bad for last 3 weeks with Shoulder pain, knee and feet pain and feel awful with fatigue, headache and just generally rubbish. I often get flares that last a few days but rarely feel so unwell with it. Had to stop taking methotrexate 3 weeks ago due to an infection but I’m going back on it tonight because I might lose the will to live otherwise! One annoying thing is that although I’m aCCP and RF positive as well as high ESR and CRP, my joints don’t always look red and inflamed which makes it hard for people to understand. Does anyone else get ‘invisible’ pain? Thanks❤️

14 Replies
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Yep. All the time. Apparently it partly due to the tendons tightening and moving off the centre of the joint after swelling . According to my OT.

Yes, apart from minimal swelling in my wrists and right ankle joints, and ulnar deviation, which does not relate to the amount of pain exerienced I look remarkably well.

I'm also sero negative.

Yep, I certainly do. I'm sero positive and have serious ulnar claw hand, plus, due to bunions, both of my big toes have gone inward so much that along with causing issues with other toes, both big toes have become dislocated. Also have lesser bits of deformity plus the odd nodule here and there. All this and I've seldom had red swollen joints, I do however have my fair share of pain on times, like now! Been off my baracitinib this past fortnight because of an infection and am feeling the effects. I need to get back on it pretty soon!

Absolutely, all the time. I have some visible swelling on my ankle but all my other joints hurt like the devil with no sign... at some point is frustrating because we live surrounded by "seeing-is-believing" people.

Cheers! Hope you end the flare soon ❤️

wishbone
wishbone
in reply to cpetry

I forgot to mention some visible swelling on my right ankle. Thanks for the reminder. :-)

belated edit....the swelling turned out to be oedema.

Hi,

I feel your pain Elmo 😔I am sorry that you are feeling rubbish- it's so tiring isn't it? We still have to get on with things though- battle through the day like 'normal '. All of my joints are sore all of the time; occasionally, they look swollen, which is when people will comment. I had to stop mtx altogether a short time ago but I had to go back on it at a reduced dose as I was spiralling downwards. I'm still managing to stagger into work, where I'm on my feet all day. Keep strong in mind and body- you can do this. I believe in you.

Yes definitely

Hi Elmor sorry to hear about your flare I know how you feel I have had a flare for the last week seems to be moving a different place every day today it is my shoulder it feels terrible I feels like I can feel the joints crunching and my arm is painful, I hope you feel better soon I just thought I would say I know how you are feeling I hope it clears soon X

Thank you. I fully empathise with you! I know it will pass just got be patient🙂

Invisible pain all the time, I`m my family think I make it up, been having a flare up for about 4 weeks now, can`t sleep either. Clinic Tuesday hopefully sort me out.

Yes , At the moment I’m in terrible pain , I gave rhuemy nurses plenty of notification about medication this is second day still haven’t recurved it, I am in pain everywhere had to come downstairs on my bottom, can I ask do people automatically get their meds sent out , or do yo have to order it , no one is listening.

wishbone
wishbone
in reply to Angels54

I think it varies depending on the rheumy and type of medication. I have to phone the rheumy secretary to order my two month prescription of baricitinib, which is then posted to me so I can hand it in to my local pharmacy. I phone when I'm down to two weeks supply.

I think you need to get back onto your rheumy nurse pronto and let her know the state you are in.

Hey Elmo333 - my goodness, all that you describe I am in. I shall throw in the chest bone pain too 😩, it’s horrendous - as you don’t want to breathe out as the pain. It is making me grouchy to be honest as I can't function. People look at you (and despite my ongoing weight loss) I look ok. The pain today is all over I can't walk. Hope you have a swift recovery but know you are not alone. Things shall improve. Healing hug - Hessie 🤗

My wrists have been in a major flare for weeks & they do NOT have redness or swelling either!

But let me tell ya! Ouch, ouch, ouch!

Had to up my prednisone from 8.75 to 15 to get ANY relief with being able to move my wrists!

Waiting for the 5th Biological to work. This time infusion therapy (Acterma). Still doing nothing to combat 7 months of flares that move from wrists to shoulders nonstop!

Yesterday flare has moved back to the larger joints in my shoulders (which also are not red or swollen, it is all inside) and now the 15mg of prednisione that I was on for my wrists in no where near working!

Yet another Ouch!

Looks like all that work I did to reduce the prednisone from 25mg over the last two months per day to 8.75 was all for nothing!

The high doses of prednisone was always needed for the shoulder flare! Stinks!

I WANT OFF PREDNISONE. It is destroying my body, hair & mind!

But what else is there to do to combat these endless flares?

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