Painful hands

[Haylz2109]

Hi all, Hope everyone is as well as they can be, bear with me it's a bit of a long one.

So I have finally come off of steroids and I am now only on colchicine which I don't think is helping as I've had an absolute rubbish time since steroids have left my system. Started with the usual symptoms creeping back in then a few weeks back had a 4 day period where I couldn't leave my bed or keep water down and was almost hospitalised, Dr thought it was a flare and ruled out a bug, followed by a week later a staph infection in my nose and really bad red burning facial rash.

Now I just feel worn out in a lot more pain than usual especially in my hands it feels like it's in every bone of my hands from my wrist all the way to my knuckles, they don't seem red or discoloured and I have tried compression gloves which don't seem to give much relief. Does anyone have any tips to help the pain ? It's already day 5 and I haven't even done anything to cause the pain 😔.

Thanks in advance for any responses 💕

[NewToHats]

I'm so sorry you are suffering with this. It sounds miserable and it can be so hard to cope when things are adding up like this. I would say that it is worth continuing to discuss this with you health care team as it sounds like this overall is not an ok situation to leave you in. Trust your instincts about how you feel, if it doesn't feel right or ok to you then keep plugging.

I had a horrible time with joint pain this year and had a post that was full of really amazing tips. link here: healthunlocked.com/lupusuk/...

I found when the pain was bad I just didn't have the mental energy to think of things to help. The tiger balm was amazing for me, it just took the edge off for me, especially when the pain stopped me sleeping. Things are a bit better now, I can hold a book to read my daughter a story now and that is huge for me.

Hope things start to settle for you soon, sending you lots of supportive vibes.

[Haylz2109 in reply to NewToHats]

Thank you. It really does wear you down doesn't it ? Especially when it's one thing after another it's as if there's no breaks. Tbh I'm so up and down I don't know how to tell when it gets worse anymore because it's always bad but it doesn't seem bad enough to try and contact the rheumatologist at one point then a day or 2 later I'm wishing I had phoned them because its really bad again. The pain however in my body and such seems to just be getting worse and its now starting to affect my walking again.

Thank you for that link I will definitely look at that to see if I can get some relief.

No exactly it makes you feel irritable all the time doesn't it ? I find I struggle to be patient when I'm in such pain and that's not great with 2 little ones.

So glad you are able to read a book with your daughter again, the little things are always the best memories 💕

Thank you I really appreciate it xx

[MusicalFurbaby]

Hi Haylz, sorry to hear about the dramas you have been through. I also experience arthritic-type pain in the hands, but yours sounds much worse than mine. I pretty much manage it through the usual means: ibuprofen, panadol osteo, turmeric (take it with pepper for absorption), heat packs, and baths with epsom salts.

It could be that the hand pain is a flare in reaction to your recent infections and meds. Your body has been under stress, and it’s leaking out through your hands. Bit of a poor metaphor, but hopefully that makes sense.

Definitely talk to your GP about it; if it doesn’t go away, it might be worth getting a scan just to make sure there’s nothing else going on. All the best with it, hang in there 🌻🌈

[Haylz2109 in reply to MusicalFurbaby]

Thank you, I've had bad hand pain before but it's never been this severe or this long a period which is strange. I'm still undiagnosed so only on pain killers and colchicine. It's been 4 years of investigating so far and all they've come up with is fnd and uctd along the lines of lupus or bechets. I do wonder if that could of been the case too because I've been run down but it's not come out in a full blown flare like I usually have it's like spread out if that makes sense.

No that's a really good metaphor and I understand, most certainly could be I just hate getting in touch with the rheumatologist or doctors when it's unnecessary and I get fobbed off a lot especially with the gp.

I am currently having bloods once a month to see if the colchincine helps with my liver levels so hopefully something will show up on there 🤞🏻

Thank you I will probably bring it up with them on Monday if it's still as severe and prolonging as even taking cocodmaol and ibruprofen only seems to take the edge off.

Thank you I really appreciate that 💕 xx

[MusicalFurbaby in reply to Haylz2109]

I understand your reluctance to contact the doctor, I have so many medical appts I tend to avoid making yet another appt until I absolutely have to. Good luck with raising the issue next week, and with your next round of bloods. Hopefully the meds will take the worst of the pain off too, pain is horrible and exhausting! Take care x

[Haylz2109 in reply to MusicalFurbaby]

Thank you, yes it's so hard, You want to just not have to go to the doctors which is why we avoid it where possible isn't it ? Thank you I really appreciate it, I definitely feel drained from it all. Take care too 💕 xx

[MusicalFurbaby in reply to Haylz2109]

I know what you mean. You’re definitely not alone! 🌻🌈

[soul22]

Bless you I'm wondering are you not on hydroxychlorquine

It would reduce lot that when off steroids,also once off steroids a flare can occur hope settles soon or GP hor face a cool pack wrapped would soothe it.

A cool water spray in fridge another idea

Hands soak warm water some bath salts radix in water id tolerate that to soothe hands bit.

Hope helps

[Haylz2109 in reply to soul22]

No unfortunately I trialled hydroxy last year and it didn't alleviate my symptoms or help my bloods. My bloods only show elevated liver levels none of the other normal markers for lupus or specific information to confirm a diagnosis. Yes that's a bit of my worry is could it be a flare but it's also not showing the same way my usual flares would it seems to be more spread out than all at once how it usually would be.

Thank you I will definitely give those a go to see if I get any relief. I really appreciate it 💕 xx

[soul22]

Bless you soi to hear this

All best

[Haylz2109 in reply to soul22]

Thank you 💕 same to you xx