Help with a bad flare up : Hi all, I would like... - LUPUS UK

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Help with a bad flare up

CPower profile image
11 Replies

Hi all,

I would like some opinions on what I'm currently going through. Apologies for not replying to my last post, I've been busy going back full-time(WFH)/buying a house/got a puppy/I recently went on holiday for a week.

2 days after returning from holiday in Berlin, where I did a lot of walking every day, I started feeling sharp shooting pains in my ankle and I couldn't walk. That was 8 days ago now, and the pain has taken turns in my other ankle, wrists, and now my knee. It aches when I'm not moving so I'm in constant pain. I keep crying, wincing, and it's really quite depressing.

I put this down to lupus causing some tendonitis, which I hope still makes sense even though its a different joint every day. I'm on 5mg prednisolone and have done fine on that dose since 27th May (4 weeks).

I have called my specialist lupus nurse a few times and she doesn't know what it is. She wanted me to stop the prednisolone by taking 5mg every other day (I was so worried to hear that anyway, nevermind when I'm in pain like this) but has since just told me to stay on 5mg for now.

I was thinking of taking 10mg for a few days and seeing if that helps. I really don't know what else to do. I always believed going to A&E or calling 111 would get me nowhere, as this is a flare up nothing can be done, but I haven't been able to move or leave the house.

If I've missed anything please ask

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11 Replies
LottieLou96 profile image
LottieLou96

Sorry your in pain,

I guess pacing ourselves can be difficult and you have had alot on recently for sure. It might well be lupus or just a strain or injury sustained from all that walking.

I'm not quite sure what to suggest other then the usual anti inflammatory pain relief, rest, warm or cold compress and hopefully it'll calm down. X

CPower profile image
CPower in reply to LottieLou96

Hi Lottie,

Thank you for this. As I said below I can't take too much ibuprofen but am trying my best to rest. X

Ilovepuppies88 profile image
Ilovepuppies88

Hiya Cpower. Sorry to hear your having a bad flare. Just as Lottie advised I'd recommend taking it super easy for the next few days, rest and Anti inflammatory is the best thing you can do for yourself, rest and more rest. I usually flare pretty bad after a longer walk than usual and what often helps me is just resting up, and Ibuprofen. Hopefully it will pass in a few days. X

CPower profile image
CPower in reply to Ilovepuppies88

Thank you, I have to try and avoid ibuprofen to avoid further damage to my kidneys, unless I take it with famotidine. I have taken it a few times though as it helps the most even if just a little bit. X

Krock1 profile image
Krock1

I have been walking on an inflamed tendon since February. I went to my podiatrist five weeks ago. He put me in a boot to immobilize the ankle and I have been going to PT . This had little effect on the foot. Then I had some work to do in the garage. This increased the foot pain. I had some CBD balm that I rubbed into the ankle and rested for an hour. There was almost immediate relief. I told my wife who has chronic pain in her feet from RA. She go relief as well when she tried the CBD balm. So the relief may be due to PT streches, immobilization, change in diet, and CBD.

Hope you can get in front of the pain. Best, K

CPower profile image
CPower in reply to Krock1

Thank you K, I've never tried CBD balm, only drops before I was diagnosed and didn't feel a difference. I have some knee exercises to do from a GP but have been waiting for physio for a couple of months now for my knee before this flare up. Do you have any recommended brands of CBD?

Tanitani profile image
Tanitani

Im not a doctor so cant really advise, but if that heppened to me i would take my usuale flare taper (20, 20, 20, 15, 15 15, etc) or if you know that 10 would sufficiently help you could stat w that. Were you exposed to Sun while walki h? That would definitely cause a flare for me for example Why did the nurse think stopping would help? What you explain was how i ended up being diagnosed. I went to LA for 5 days, was walking in the sun and my joints were hurting so bad once i came back home i coudnt dress up by myself.

CPower profile image
CPower in reply to Tanitani

I've decided to take 10mg so have done for 2 days now and seem to be feeling a lot better, along with rest and some braces and bandages. I was exposed to the sun a fair bit, but usually I wouldn't say I'm that sensitive to it. First time away from the UK since being diagnosed though so maybe I've just learned something! My nurse and rheumatologist want me off the steroids ASAP, as I was kept on 10mg for too long and in February was taking 60mg by nephrologist orders to control my nephritis. I didn't feel like staying on the 5mg was sufficient but will take the 10mg for only another day or two then drop back down.

I was also diagnosed quickly because my joint paints got so bad I couldn't move. The tendon pain right now is something else though I didn't think it was a flare at first because I've never felt anything like it!

Betty909090 profile image
Betty909090

“I've been busy going back full-time(WFH)/buying a house/got a puppy/I recently went on holiday for a week.…”.====

This tells me a lot!

OMG!

You’ve been putting far too much pressure on yourself, too many things are happening in your life. Never underestimate that STRESS often causes flare ups in us lupus sufferers. This is often overlooked or even forgotten about!

Change of working conditions!😳

New addition to the family, the puppy!😳

New house, new address!🥺

Stressful holiday? with all the pills and meds to sort out plus waiting at airports, stations etc etc👆

All this excess internal adrenaline flow needs to come right down.

Relax!

Xx

CPower profile image
CPower in reply to Betty909090

I don't think I realised until I typed it out to be honest. I know stress I feel from stressful situations but maybe have a build up I haven't realised, because ultimately everything going on right now is positive!

It's definitely made me feel down, coming home and not being on my feet, but I will definitely keep trying to relax x

Marley profile image
Marley

If I get a flare I can’t self manage I call my rheumatologist’s secretary. I did this recently and got seen in clinic a couple of days later. Appreciate it might not be possible for you but felt I had to mention it. If you look in the hospital website you might find a number.

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