effective relief for pain with the flares?

i get horrible pain when my skin has flared up, not just my joints but the actual spots themself, exactly like the image below. it feels like numbing and burning.

images.rheumatology.org/ima...

i have henoch schönlein purpura.

does anyone have any methods to reduce the pain or stop it? i've had it for 7 years now, i'm only 18 years old and it's ridiculous, i don't know how i cope at times, especially summertime with humidity.

thank you

6 Replies

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  • I get the pain you describe but before the spots appear I also get terrible pains in my shins at the moment I take tramadol SR and this has been wonderful, I only started on it in may and after having taken full doses of codeine all day every day I now only have to take one tablet at night two if needed which I have only had to do on a couple of occaisions. We are all different and what works for one person will have no affect on somone else it can be a case of trial and error. I can not take NSAID as I am allergic to them so I don't have a lot of choice when it comes to pain killers, I have also had success with acupuncture and reflexology.

    Don't know if this helps

    Tracy

  • that's great you have something that takes the pain away. i might have to look into acupuncture and reflexology. someone even suggested hypnotherapy as i get flares when i'm stressed out and unhappy. so i'll look into that sorta natural treatment before pain killers. thank you xx

  • Hello, I also have henoch schonlein purpura and was diagnosed around 2 years ago. What treatment are you receiving for your hsp? when I experience flares, I suffer with really bad aches and pains especially around my knees and ankles. I find rest does help a lot and jus keeping ur legs elevated? mines always worse if I'm doing too much or on my feet all day. as my recent flare up made me quite unwell, my consultant decided to increase my prednisolone which helps with the inflammation. sometimes I take a pain killer now and again? has your rash ever turned into blisters or cuts?

    Samya x

  • ive not had any treatment at all unfortunately. they didnt want to prescribe me anything for a long time as i was young when i got it and they've still never given me anything and it's been 7 years or so with regular check ups, they're hopeless. what would you recommend?

    i have exactly the same with the aches - especially knees and ankles and even the joints in my fingers at times.

    my rash has turned into blisters and cuts only about 5/6 times since i've had it but it's real uncomfortable and irritating. sometimes i can't even sleep from discomfort.

    i'll try keeping them elevated and rest a bit more, i'm on my feet all day, i generally get flares at night time, never day time for some strange reason! thank you xx

  • Im surprised that you haven't received any treatment. How have you learnt to cope all this time? are you seen at your local hospital or with your GP? there must be something they can suggest for you or some sort of treatment to give you some relief? I would just be persistent and ask is there anything they can do for you. I hope you find something that can help you soon. Have your kidneys ever been affected by the vasculitis?

    yeah when my flares are very bad, they can blister n become very uncomfortable and sore, and feel like they are burning. how often do you have check ups? let me know how you get on :). sorry for all the questions x.

    chat to you soon hopefully, take care. xxx

  • i think i've just sort of got on with it because there's not been any other way around it :( i was under great ormond street for ages, they'd just take blood and get back to me 6 months later (ridiculous) but wouldn't do much asides tell me if something was better or worse. when i turned 18 in february i was transfered to a more local hospital, which were no more help. everything now is all done by GP and they're telling me the same things over and over, it's no help i don't know what to do or ask for anymore really, until i came across this site i didn't realise there was even medication to help seeing as i'd been so isolated from that sorta side of it all.

    yeah i have kidney involvement as well unfortunately. the GP prescribed me ibuprofen gel last time for the blisters on my legs which didn't help at all. and they said to take painkillers.. but surely that's just even worse for my kidneys right? so i've just dealt with it normally without medication!

    i know exactly how you feel with that burning and the sores it's so horrible. what do you do to take away that stinging burning feeling?

    awh thank you loads :) i will let you know. hope you're doing ok! xxx

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