RAYNAUD'S&ERYTHOMELALGIA: Hi,not been... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Hi,not been on this for awhile since about April i'v been having pins and needles, in some of my fingers and toes it lasts for hours due to raynauds, and then thobbing pain in thumbs and toes and a few fingers and the big toe, due to erythromelalgia,but now it's changing to quick for me ,socks and gloves on then next minute take them off its so exhausting.any tips or ideas would be so helpful.thanks

7 Replies

Hi carolanntwin 😊🌸🌿🦋

Nice to meet you. Sorry it’s under these circumstances. I apologize for my delay in answering your post. I’m just getting over a nasty viral infection and I’m still plagued by exhaustion and compounded painsomnia.

I too have Raynauds Phenomenon and Inherited Erythromelalgia.

I have the burning pain plagued by pins needles skewer poker stabbing pains swelling and edema.

I dress in layers. Freezing one moment melting the next. Socks on/socks off... 🤔 remember wax on wax off Karate Kid??

I have had the Erythromelalgia since birth. First memory of its negative affect on me is age 5. Diagnosed in 2014 by DNA with inherited which now includes salt trigger too.

I’m very much interested in your story too.

Take care. Hope to hear from you.


Hi nice too meet you also,i had Raynaud's for about 30 years and severe Erythromelalgia,which is primary for about 27 years. been

getting worse over the years but now its its changing so quickly from one to the other its so exhausting,but it also affects my eyes and also I get burning mouth.I go to the Royalfree London who are excellent, but unfortunately I haven't responded to any treatment.but I keep trying different things but living in the uk the weather is so changeable.so any tips would be very appreciated honeybug.

Oh sweetie I’m so sorry to hear how much you are suffering with your nasty duo.

I’ve only had the burning mouth symptoms a couple times thought that was from food response. Didn’t know eyes could be affected either.

The only thing I’m taking is Gabapentin 1200mg twice daily and it doesn’t remove the pain but makes it tolerable for me.

Have you tried this yet??

I’m sorry you’ve not found what works for you yet.

Hope you find something soon.

I live in Michigan USA 🇺🇸 where we have weather changes every 5 minutes and all 4 seasons in one day. We even have snow flurries in July sometimes.

So I understand the crazy unpredictable weather very well.


Hi Honeybug,yes tried Gapapentin didn't help much. Tried most everything that been available,but some people, medication doesn't work.but will keeping trying thanks again.😊😊

Hi Carol 😊🌸🌿🦋

Sooo sorry dear that gaba didn’t work. Since most meds have failed for you have you tried acupuncture??! I have not done this as I have multiple nerve damage conditions and severe pain from needles. But I have heard it works wonders for others.

Never give up...keep soldiering on hopefully you’ll find that perfect meds to help you dear.

Again I’m sorry you’re suffering in the meantime.

Xxx EJ 😊🌸🌿🦋🙏🤗💗😘

Thanks again honeybug

Yes tried a few years ago but it was not for me.heard a lot about Lidocaine infusions I wonder if they are beneficial but going to read about it first.

thanks again for replying.xx

Sorry Carol it didn’t work for you. I use lidocaine cream on my feet and back and it works for me. I’ve never done any infusion...I’m not that brave yet.

Hope you get your answers with your research on it.

Keep in touch and let now how you’re doing what you’ve decided okay???

Take care and best wishes dear.

Hb xxc

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