Capsaicin cream- a cautionary tale: I have lupus... - LUPUS UK

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Capsaicin cream- a cautionary tale

skylark15 profile image
skylark15
β€’22 Replies

I have lupus, Raynaud's and erythromelalgia. The pain and burning in my feet from the EM has been waking me every night for years. The pain has been getting worse and lasting for longer recently. Simple painkillers don't help and I'm not sure that the Pregabalin makes any difference.

My rheumatologist suggested that I try capsaicin cream so when I was awoken in the small hours this morning, I thought I'd give it a try.

Bleary-eyed, half asleep and maddened by pain, I neglected to read the instructions and rubbed a splodge on to the dorsum of my already red, hot, burning left foot.

OMG, how it hurt but I assumed, in my dozy state, that that was only to be expected. How wrong I was. Stupidly, instead of washing it all off, I sat for half an hour, whilst the cream soaked in and then went back to bed, with that foot still on fire. This is what it looked like this morning.

After-sun cream with aloe vera has helped today

A (-nother) lesson learnt the hard way: try a tiny test area first😞.

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skylark15
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Wendy39 profile image
Wendy39

Oh my goodness! That’s looks very sore and swollen. Allergic reaction? I hope it’s gone down now. I know it’s not the same, but with my ultra dry skin I stick to Aveeno or aloe Vera now. A good tip for the aloe Vera gel, is keep it in the fridge. So cold when you apply it, it’s bliss. I also now grow aloe Vera plants and we use it for most skin issues in our house. I hope you find something that gives you relief soon. Best wishes

skylark15 profile image
skylark15 in reply to Wendy39

Thanks for this, Wendy.

It wasn't an allergic reaction and my poor feet are a bit swollen all the time because of the wretched EM.

The area affected was very, very sore for most of yesterday but regular application of the aloe vera after-sun cream helped and this morning it's almost back to normal; not on fire & tingling.

That's a great tip about keeping the gel in the fridge πŸ˜Šβ„οΈ.

I shall get some aloe vera plants and look on line for advice about how to use them for skin issues. Thanks again.

Tess

Wendy39 profile image
Wendy39 in reply to skylark15

To be honest, we just split the aloe Vera plant leaves and rub directly on any skin irritations. A friend used it directly on her skin after spilling a hot drink on her thigh. She had no scarring and when the nurse looked at, couldn’t believe how well and how quickly it had healed.

skylark15 profile image
skylark15 in reply to Wendy39

Thanks, Wendy39. I'll let you know how I get on with the aloe vera πŸ˜‰. And it's fascinating to hear how the juice healed up your friend's scald.

I have really dry skin, too and I use Dermol 500 lotion instead of soap or shower gel and my skin seems much less irritable and flaky.

What Aveeno product/s do you find most helpful?

I bought Aveeno "Skin Relief moisturising lotion" to use on arms & legs because it is less greasy than the Aveeno cream and soaks in really quickly. I hate the fact that the high liquid paraffin-content creams stain my clothes & bedclothesπŸ˜•. I'm wondering about buying a bottle of Aveeno bath oil, too, even though I don't take baths as a rule because water any hotter than tepid flares up the EM and a tepid bath really isn't much fun πŸ˜….

Txx

Jetblack1 profile image
Jetblack1

Aww bless you.. I use capsicum cream and yes if you put too much on it is known to burn because of the chilli's in it.. I hope your more at easy today x

skylark15 profile image
skylark15 in reply to Jetblack1

Hi, jetblack1.

Thanks for your sympathetic & helpful reply: I really hope the cream would help but if I dare to try it again, it'll only be in tiny amounts πŸ˜…πŸ˜….

Have you got erythromelagia as well? It's a pain and from rheumatologists, neurologists & dermatologists the response is invariably a shake of the head and the phrase: "Hmmm, a very difficult condition to treat"!

My foot is much better this morning but yesterday I was beside myself with pain and terror in case I'd permanently damaged the nerve endings in my foot. However, it feels much the same as normal, this morning. Thanks again.

Tess

Lupiknits profile image
Lupiknits

Yikes that looks sore! I hope you can get it to cool down.

My only experience with capsaicin cream is when a GP prescribed it for my painful hands. Hmm, apply carefully then wash hands thoroughly, leaving the cream to sink into the affected area. There’s no way of doing that on your own. I couldn’t think of any way of achieving that, never mind the horrors of rubbing an eye absentmindedly with it on my hand.

honeybug profile image
honeybug in reply to Lupiknits

Hi Lupi πŸ˜ŠπŸŒΏπŸŒΈπŸ¦‹

If you use medical exam gloves you can apply the capsaicin cream safely without the worry of accidentally transferring to unwanted areas. After applying it just peel off the glove and toss it in the trash bin.

EJ. πŸ˜ŠπŸŒΏπŸŒΈπŸ¦‹πŸ™πŸ€—πŸ’—πŸ˜‡πŸ•Š

skylark15 profile image
skylark15 in reply to Lupiknits

Hi, Lupiknits.

Thanks for your reply.

I'm so relieved that my foot is better this morning.

That advice you were given sounds rather contradictory and I was terrified of getting the cream in my eye, too, especially as they're really sore & itchy with hay fever at the moment.

Hope you're as ok as you can be.

Tess

skylark15 profile image
skylark15

Hi, louise-a.

Thanks for your reply. My foot is much better this morning.

It's good to hear capsaicin cream helped you. Do you use it to treat EM?

Tess

honeybug profile image
honeybug

Hi skylark 15

πŸ˜ŠπŸŒΏπŸŒΈπŸ¦‹

I too have Raynauds Phenomenon and Inherited EM.

My IEM has gotten so bad that it has kept from sleeping in the bed. I’ve napped in my luxury office chair for 19 months now. My feet stay swollen and feel like dipped in boiling oil most times.

I use lidocaine/or Aspercreme with lidocaine to tone it down enough to sleep. I haven’t had any adverse reactions to either.

Maybe this might help you too.

Hope your poor foot recovers soon.

Best wishes take care dear.

EJ πŸ˜ŠπŸŒΏπŸŒΈπŸ¦‹πŸ™πŸ€—πŸ’—πŸ˜˜πŸ˜‡πŸ•Š

skylark15 profile image
skylark15 in reply to honeybug

Oh honeybug, I'm pretty much lost for words at your plight. Thank you for taking the time to reply to me and to Lupi with your kind & helpful advice.

It's only my feet that are affected, with secondary EM and I honestly cannot imagine how I'd cope with what you have to contend withπŸ€—πŸ€—πŸ˜˜.

My rheumatologist mentioned Lidocaine (patches, maybe?) but we settled on a trial of capsaicin to start with. I'll look up Aspercreme with Lidocaine.

It's brilliant that you scattered butterflies, flowers & leaves in your kind sign-off because we went for a walk through a Woodland Trust wood yesterday, to distract me from my painful foot and we saw more butterflies, dragonflies & wild flowers than either of us has seen for ages. It was fabulous😊😊.

Thanks again and take care you, tooπŸ€—πŸ€—.

All best wishes,

TessπŸŒΏπŸ¦‹πŸŒΊπŸŒ»πŸŒΌπŸ˜˜πŸ˜˜

honeybug profile image
honeybug in reply to skylark15

You’re more than welcome sweetie πŸ˜ŠπŸŒΏπŸŒΈπŸ¦‹

I do understand this plight of burning feet that gets worse as the day progresses and at its worst when bedtime comes and sleep is so impossible when your feet/body is on fire.

I pray that you will find relief soon. πŸ¦‹πŸ€—πŸ•Š

Thank you so much for your compassionate words. They mean so much.

Glad you enjoyed the emojis.

I’m an artist and often do emojis collages for members. Be glad to send one your way too if desired.

Take care dear

EJ πŸ˜ŠπŸŒΏπŸŒΈπŸ¦‹πŸ™πŸŒΏπŸ’—πŸ˜˜πŸ˜‡πŸ•Š

skylark15 profile image
skylark15 in reply to honeybug

An emoji collage-wow! They sound really interesting and yes, please, I'd love to see one of your creations πŸ€—πŸ€—

honeybug profile image
honeybug in reply to skylark15

Thank you dear. As soon as I can I will.

EJ πŸ˜ŠπŸŒΏπŸ¦‹πŸŒΈπŸ™πŸ€—β™₯️πŸ₯°πŸ˜‡πŸ•Š

honeybug profile image
honeybug in reply to skylark15

As promised skylark15

🌿🌸🌿🌸🌿🌸🌿🌸🌿

πŸŒ€πŸ’ πŸŒ€πŸ’ πŸŒ€πŸ’ πŸŒ€πŸ’ πŸŒ€

β™₯οΈπŸ•Šβ™₯οΈπŸ•Šβ™₯οΈπŸ•Šβ™₯οΈπŸ•Šβ™₯️

β˜”οΈπŸ’¦β˜”οΈπŸ’¦β˜”οΈπŸ’¦β˜”οΈπŸ’¦β˜”οΈ

🌿🌺🌿🌺🌿🌺🌿🌺🌿

🌈⭐️🌈⭐️🌈⭐️🌈⭐️🌈

πŸ•ŠπŸ™πŸ•ŠπŸ™πŸ•ŠπŸ•ŠπŸ™πŸ•ŠπŸ™

πŸ’–πŸ‘ΌπŸ’–πŸ‘ΌπŸ’–πŸ‘ΌπŸ’–πŸ‘ΌπŸ’–

🌿🌹🌿🌹🌿🌹🌿🌹🌿

πŸŒπŸ•ŠπŸŒπŸ•ŠπŸŒπŸ•ŠπŸŒπŸ•ŠπŸŒ

🌿🌸🌿🌸🌿🌸🌿🌸🌿

Enjoy EJ 😊

skylark15 profile image
skylark15 in reply to honeybug

Hey, EJ, that's lovely. Thank you, it's brightened up my day no endπŸ˜ŠπŸ’•

Tess xx

honeybug profile image
honeybug in reply to skylark15

Welcome sweetie xxx

skylark15 profile image
skylark15

I'm so glad that it helps your arthritic pain, louise-a.

😊😊

Bebe76 profile image
Bebe76

I once tried a cream with capsaicin in it and the area turned red and felt like it was burning. I tried to wash it off immediately but I felt the effects for more than a day afterwards!

skylark15 profile image
skylark15 in reply to Bebe76

Hi, Bebe76.

Thanks for your response: it's now the end of the second day and my foot has almost completely calmed down but it was an experience I don't want to repeat!

Bebe76 profile image
Bebe76 in reply to skylark15

Good to hear you have almost recovered. I am also staying clear of capsaicin creams!

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