If by magic you could lose just one of your sympt... - LUPUS UK

LUPUS UK

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If by magic you could lose just one of your symptoms, what would it be. ???

26 Replies

I was kept awake again last night with an attack of costochrondritis. Got me thinking is this the worst area of pain for me. For me it is, closely followed by my eye pain. Very hard to pick one as all pain is bad.

26 Replies
anbuma profile image
anbuma

swollen abdomen

in reply to anbuma

Thanks anbuma, no hesitation there. !!! Lucky not to have that but would not want it either. Sounds bad.

Slowmo profile image
Slowmo

Mine would be the costo like yourself, joint pain is bad, sun sensitivity is awful and fatigue gets me down, but a bad bout of the costo if the MOST painful of all my many symptoms. I also think medical staff underestimate the level of pain (or discomfort as they call it) involved.

Good question, it'll be interesting to see the variety of responses as symptoms are individual to all of us.

caninecrazy profile image
caninecrazy in reply to Slowmo

good question.......think mine would be fatigue but that would be closely followed by the sweats and sun sensitivity. I can just about cope with swollen painful joints, avoidin the sun, disturbed sleep, nightmares, memory loss etc etc but its the relentless fatigue that makes me look a fraud id love to get rid of x

in reply to caninecrazy

Thanks caninecrazy, in an old copy of lupus news and views, a poll showed that fatigue was a top complaint. So not on your own then.

in reply to Slowmo

Agree slowmo, they don't realise our pain. Thanks for reply.

uzi41 profile image
uzi41

Pain in my legs and back.... :-(

in reply to uzi41

Thanks for reply uzi41

uzi41 profile image
uzi41 in reply to

I have found that I can only take paracetamol as everything else makes me drowsy. Everyone has their own symptoms that are affecting their lives. Would love to hear any suggestions for helping with the pain. Take care. X

in reply to uzi41

When I first started on the strong pain relievers, I couldn't stay awake. I have built up a tolerance over the years and couldn't manage without now.

uzi41 profile image
uzi41 in reply to

Thanx for this. Xx

misty14 profile image
misty14 in reply to uzi41

Hi Uzi

Have you tried Gabapentin or Amitriptyline?. Is your pain nerve pain?. The're both good for that. Nothing worse than unrelieved pain! Have you tried NSAIDS?. Take Care x

Purpletop profile image
Purpletop

Neuro symptoms - they are the scariest because of their weirdness. Pain I can at least understand and take a pill for but tingling, numbness, twitching, tremors - no way.

in reply to Purpletop

Been reading on here lately about neuro stuff. Seems meds help me now, but I did have it bad before diagnosed. I would get electric shock type pain in my legs, or go into spasm. It was scary. Thanks for reply

nanaber profile image
nanaber

For me it has to be brain fog. What I wouldn't give to think clearly and remember things.

in reply to nanaber

Poor you nannaber, wish I could advise. Thanks for reply.

Bonnie39 profile image
Bonnie39

Exhaustion!

in reply to Bonnie39

Yes bonnie39 I must admit this was in my top 3

Mainshah profile image
Mainshah

Good question,

I'd say fatigue, and joint pain or in fact the pain all over if them two things were gone id be able to cope better with the rest.

in reply to Mainshah

Wouldn't we all mainshah, thanks for reply.

Diagnosed2012 profile image
Diagnosed2012

I lost most of the sight in one eye. If only I could get that back.

in reply to Diagnosed2012

How awful, that must be the worst. Hope your other eye is not at risk. Please take care.

misty14 profile image
misty14

Hi 6161

Interesting question you've asked!. I 'd love to lose the fatigue, joint pain and chest pain. Hope your costo gets better soon, that's very painful!. Previously you've posted about the steroids?. About tapering doses. What do you do?. I've been advised to go from 6 mg to 10 mg for a couple of days if chest very painful then go back to 6 mg. Take Care X

in reply to misty14

Thanks for reply misty14, my GP lets me have a large supply of pred so I can do this but I don't abuse it. For me I have to take 40mg for 4 days, 30mg for 4days and so on. If really bad I will take each dose for 7days. Drs do also advise 20mg fora few days then back to 10 ect... My maintenance dose is 5mg. I can't stress enough to that you must have Drs consent to do this. Please don't dose yourself as we are all different. I have had lupus many years now and 20mg for a flare doesn't do it for me.

misty14 profile image
misty14 in reply to

Hi 6161

Don't worry I have to get my doctors permission to increase and like you I would never abuse it! I'm sorry you need such high doses!. Thanks for answer. Take Care X

Danielle2419 profile image
Danielle2419

Thankfully I'm in remission at the moment but still experience some pain it would have to be leg pain like muscle spasms and knees not to mention walking to much causes pain under my feet so can't apply pressure to them

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