Hi Erika, I just read through them. Lots of information to absorb. I am just beginning my journey with EM. I have not noticed anyone mention using Topricin cream. I get from Walgreens. I use it when my feet flare to help cool them down. For me, it has been a great help. Its nice that it does not have any odor and is a more natural alternative.
Hello @drolker, Welcome to Connect. Thanks for sharing what helps you. Are you able to share a little more about your diagnosis and any treatments you have tried?
I have an autoimmune condition called Sjogrens. The Erythromelagia started about 10 years ago, but was transient, mostly affected by fluctuations in temperature inside the house or outside or be exercising. The neuropathy began before that and I was prescribed Gabapentin . That seemed to be helping , at least in the beginning. In the last year the Erythromelagia has gotten worse, adding edema of both feet and ankles , so severe, I couldn’t wear any of my shoes . Recently the NP added Lasix to my list of Rx meds. I cut the Gabapentin back in the last three weeks to
See if this also helps reduce the edema. We are still working on this. The other Rx I’ve tried is Rhofade cream . It’s for rosacea. It also seemed to help a lot last spring and summer, but not so much now. I do not want to take steroids or narcotics. I am open to any safe or effective treatments .
I have an autoimmune condition called Sjogrens. The Erythromelagia started about 10 years ago, but was transient, mostly affected by fluctuations in temperature inside the house or outside or be exercising. The neuropathy began before that and I was prescribed Gabapentin . That seemed to be helping , at least in the beginning. In the last year the Erythromelagia has gotten worse, adding edema of both feet and ankles , so severe, I couldn’t wear any of my shoes . Recently the NP added Lasix to my list of Rx meds. I cut the Gabapentin back in the last three weeks to
See if this also helps reduce the edema. We are still working on this. The other Rx I’ve tried is Rhofade cream . It’s for rosacea. It also seemed to help a lot last spring and summer, but not so much now. I do not want to take steroids or narcotics. I am open to any safe or effective treatments .
@drolker, I was diagnosed with lymphedema about 3 years or so ago and wear 20-30 mmHg compression socks to control the swelling in my ankles and calves. Has your doctor mentioned wearing compression socks or have you tried them to help with the edema in your feet and ankles?
Yes. I have compression knee highs. I can only wear them for short time bc I also have Erythromelagia. Hot red feet. Feel like they are on fire at times.
Txbren, do you experience burning in both hands and feet? Can you tell us a bit more about your situation, how long have you experienced erythromelalgia and how it is being managed?
Gosh, @txbren and @colleenyoung, my feet have burned all mylife. The family doctor told my it was I had frostbite on them when quite young. Now I begin to wonder....Gotta look it up..
I'm glad you asked.. as I have been posting almost daily about my "experiment" with the Frankincense and Myrrh NEUROPATHY rubbing oil.. Now I can't find where I've posted, but I'm an older lady and haven't really learned my way around here yet.. You might try asking John, a Moderator where to find it.. I would like to post again today if I can locate the place.. Erythromelalgia conversations are listed under Groups, Neuropathy and there are 34 presently..
Nevertheless, I can tell you today that my pain has drastically improved since I began using this oil.. but now my feet have changed to much milder flares of red hot burning, AND most of the time they are so cold that I've started wearing my husband's baggy (on me) wool socks.. If a flare begins, I remove the sock on whichever foot it's on, rub on some oil and wait for it to simmer down.. this can take a while.. I can tell you that I can walk from one room to another mostly without pain.. but still sit and keep my feet raised most of the time.. My doctor told me that it's essential for me to get some exercise, so I ride an exercycle for a mile every day.. Ours has a fan that is run by the wheel turning and that is really good for me.. I will increase the exercise distance gradually.. and I wear only my Merrell Treviso slides when I pedal.. These shoes don't have seams or hard places that could rub my sensitive feet and I buy them on Ebay from time to time.. I will never wear a pair out, I know! Recently I bought a pair there for only $11 plus $11 shipping, just for a different color.. these are grey.. they were listed as used, but actually show no signs of wear.. Like many of us, these were bought some time ago but sat in the closet mostly.. The Merrell shoes from a few years back are great for foot problems, but when they began having them made in China the quality went down drastically.. I won't purchase the newer ones.. the soles are thinner, etc... whereas the older shoes have a wonderful footbed that is smooth, supportive, and softer.. You can tell that I'm sold on them, I guess.. The only meds that I take are Cymbalta, Lisinopril, Mefformin, and Piglosgtena??.... My doctor recently gave me the name of another topical cream that I might try if I need to.. It's available online from a site in Colorado at present, as it has a derivative from marijuana in it, altho doesn't include the part that makes a person "high".. Also another that is habit forming, and carefully watched by the powers that be.. I can get those names and add them if you request them from me.. I've had Erythromelalgia for years, but it has only impacted my life so much over the past 2 or 3.. Thankfully, I am retired and can keep off my feet most of the time.. Please let me know how you get along, keep in touch... Blessings..
I just started using Frankincense and Myrrh NEUROPATHY rubbing oil. This is my second day with it. Seems to help lower the temperature of my feet burn, and I like that it acts quickly. Thank you for posting about it.
I just started using Frankincense and Myrrh NEUROPATHY rubbing oil. This is my second day with it. Seems to help lower the temperature of my feet burn, and I like that it acts quickly. Thank you for posting about it.
Hi @jlander thanks for sharing. Have you found if using a diffuser helps with these oils as well? Where were you able to find these oils to purchase? Toni
I just started using Frankincense and Myrrh NEUROPATHY rubbing oil. This is my second day with it. Seems to help lower the temperature of my feet burn, and I like that it acts quickly. Thank you for posting about it.
@jlanader et al.....Love the oils...will try them as already use for aromatherapy. I just began using topical MMJ, get the lotion from my MMj dispensary. It's costly but you know, it seems to help. Will let you know if it continues to work for me.....blessings, elizabeth
Hi, I bought the Frankincense and Myrrh oil at Walgreens. No, I do not use a diffuser. I used the oil again last night, my 3rd night, and I didn't have quite the success of using it like the other nights but think it can still be helpful.
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Hi Erika, I just read through them. Lots of information to absorb. I am just beginning my journey with EM. I have not noticed anyone mention using Topricin cream. I get from Walgreens. I use it when my feet flare to help cool them down. For me, it has been a great help. Its nice that it does not have any odor and is a more natural alternative.
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Helpful -
Hug
2 ReactionsHello @drolker, Welcome to Connect. Thanks for sharing what helps you. Are you able to share a little more about your diagnosis and any treatments you have tried?
I have an autoimmune condition called Sjogrens. The Erythromelagia started about 10 years ago, but was transient, mostly affected by fluctuations in temperature inside the house or outside or be exercising. The neuropathy began before that and I was prescribed Gabapentin . That seemed to be helping , at least in the beginning. In the last year the Erythromelagia has gotten worse, adding edema of both feet and ankles , so severe, I couldn’t wear any of my shoes . Recently the NP added Lasix to my list of Rx meds. I cut the Gabapentin back in the last three weeks to
See if this also helps reduce the edema. We are still working on this. The other Rx I’ve tried is Rhofade cream . It’s for rosacea. It also seemed to help a lot last spring and summer, but not so much now. I do not want to take steroids or narcotics. I am open to any safe or effective treatments .
@drolker, I was diagnosed with lymphedema about 3 years or so ago and wear 20-30 mmHg compression socks to control the swelling in my ankles and calves. Has your doctor mentioned wearing compression socks or have you tried them to help with the edema in your feet and ankles?
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1 ReactionYes. I have compression knee highs. I can only wear them for short time bc I also have Erythromelagia. Hot red feet. Feel like they are on fire at times.
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Helpful -
Hug
2 ReactionsGosh, @txbren and @colleenyoung, my feet have burned all mylife. The family doctor told my it was I had frostbite on them when quite young. Now I begin to wonder....Gotta look it up..
I just started using Frankincense and Myrrh NEUROPATHY rubbing oil. This is my second day with it. Seems to help lower the temperature of my feet burn, and I like that it acts quickly. Thank you for posting about it.
-
Like -
Helpful -
Hug
3 ReactionsHi @jlander thanks for sharing. Have you found if using a diffuser helps with these oils as well? Where were you able to find these oils to purchase? Toni
@jlanader et al.....Love the oils...will try them as already use for aromatherapy. I just began using topical MMJ, get the lotion from my MMj dispensary. It's costly but you know, it seems to help. Will let you know if it continues to work for me.....blessings, elizabeth
Hi, I bought the Frankincense and Myrrh oil at Walgreens. No, I do not use a diffuser. I used the oil again last night, my 3rd night, and I didn't have quite the success of using it like the other nights but think it can still be helpful.
-
Like -
Helpful -
Hug
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