Does anyone experience hot, red, throbbing pain in hands when warm or active? I’m desperate for any info on this.

[Sthomas1120]

Im desperate! I’ve been experiencing raynauds for a couple years now but lately my hands get extremely red, hot, throbbing and feel like they’re going to burst when I’m warm, active or exercising. Especially when my hands are downward or i pick something up. I have to wear ice packs and run them under cold water. It’s getting worse bc the weather is warming up. I can’t play with my kids outside or exercise. It’s making me so depressed and upset. Please help!

[Gailj]

Hi, I have a similar problem, I was diagnosed 3 years ago, the palms of my hands are blood red and my fingertips range from deep red to white, my wrists are also becoming very painful. I purchased silver gloves recommended by the rheumatologist, they can be purchased on the reynauds website, they do help but as you may already know, it’s the warmth that helps more than anything.

There’s a drug called Nifedepine that may help, I haven’t taken it yet but its worth discussing with your GP.

Try wrapping a hot water bottle with a light towel and warm your hands. Good luck xx

[JazPont]

Wow, I get this too! You couldn’t have described it better than myself! I also get it in my feet. I actually went to my local minor injury unit when it first happened a few months ago as I thought my feet and hands were going to burst open! It happens to me when I’m hot, my face flushes too and I get red blotchy rashes all over my body x

[Susanissufferingtoo in reply to JazPont]

I just got diagnosed too. My legs sometimes burn like I'm on 🔥 I'm stuck with red bumps on my face😓 Doc calls it broken blood vessels. My face also gets red. All of it is embarrassing. I don't know the dos and the don'ts on these conditions. Ugh! Is anyone on oxygen on here?

[Barnclown]

My version of this is in my hands, and also feet & head. Years ago Rheumatology diagnosed my version of this as simultaneous raynauds (RP) & erythromelalgia (EM)

This combination of RP&EM made me respond extremely badly to the vasodilator nifedipine for my raynauds...so am on low dose losartan instead

This link takes you to see what the SRUK website says about erythromelalgia under the website’s Associated Conditions section:

sruk.co.uk/scleroderma/eryt...

This link is to THE BEST info i’ve found anywhere on erythromelalgia, including associated conditions, diagnosis, treatments & self help:

rarediseases.org/rare-disea...

Hope something in there is useful to you

🍀🍀🍀 coco

[Sthomas1120 in reply to Barnclown]

Thank you... I’ve been searching trying to find a idea of what this is. Raynauds is so annoying and painful but this is so much more depressing and hard to control especially if you want to be active and outside with your kids.

[Barnclown in reply to Sthomas1120]

AGREED...it’s a miserable combination...you can’t explain how bad this is to someone who hasn’t got it too. But you can learn self-help tricks to somewhat lessen the misery...eg i wear sandals inside all year round especially in the evening (my EM always flares with any sort of activity, but also it always flares in the afternoon through till morning) . When i first was learning to live with RP&EM i spent a lot of time weeping with the pain and frustration...but that was over 10 years ago. Hands are more difficult in a way. I’m so sorry yours are so bad!. I try to wear 3/4 length sleeves and mositurise my hands a lot...and i grit my teeth, take my socks off (i always wear v light weight socks) and moisturise. I’ve found that plenty of shea butter moisturiser, and avoiding any hard skin buildup are key. Courage...you can figure out how to make this bearable 🍀🍀🍀🍀

[Sthomas1120 in reply to Barnclown]

I had to wrap an ice pack around my hands when I was on the treadmill

[Barnclown in reply to Sthomas1120]

It’s inevitable we do try icepacks, i know...but probably good idea to talk to your medics about diagnosis, and to read the advices in the lonks i’ve given... there is damage icepacks (& ice baths) can cause....sorry to warn you about this, but i know you want to figure this out...take care 🍀🍀🍀

[hannan233]

I’m not exactly sure if this is what you might have but It does sound like it

Erythromelalgia

is a condition characterized by episodes of pain, redness, and swelling in various parts of the body, particularly the hands and feet. These episodes are usually triggered by increased body temperature, which may be caused by exercise or entering a warm room. Ingesting alcohol or spicy foods may also trigger an episode. Wearing warm socks, tight shoes, or gloves can cause a pain episode so debilitating that it can impede everyday activities such as wearing shoes and walking. Pain episodes can prevent an affected person from going to school or work regularly.

[hannan233 in reply to hannan233]

If you are taking nifedipine this can be an adverse affect. I would talk to your doctor about this . What you have sounds like the opposite of raynauds , so in my opinion if it’s warm out side and your still take that medication then it can be pushing more blood flow to your extremities when it’s not needed

[Susanissufferingtoo in reply to hannan233]

I tried that drug. I wish I couls take it! It gave me bas migraines. I couldn't get out if bed. Dizziness ect. I only took one pill then switched to a half. I hate that we all have to take poison that can cause more problems. I'm new here. Plz help if you can

[Sthomas1120 in reply to hannan233]

Thank you

[X-Woman]

Exercise brings on EM flares, any kind of exercise, even walking for as short as for 5 minutes.

I use Magikool gel strips and spray to help but they only work for a short time. Still that short time is heavenly!!