Yes we did order it on Amazon . It is Silver Shield made by Natures Subshine. If you need anything else feel free to contact me again . I keep hoping that a cure will be found for all of us.
Becky, Volunteer Mentor | @becsbuddy | Jun 22, 2023
@erythromelalgiaca I see that you posted the same message twice, thinking that 1 person didn’t receive it. You can send the same message to several people as long as you put the @ symbol in front of each name. Try it!
You’ve been having a difficult time getting the help you need. Have you called GARD, genetic and rare diseases, or NORD, national organization for rare diseases? https://rarediseases.org/ https://rarediseases.info.nih.gov/
They both have resources to help you and do have the names of doctors. Their phone numbers are on the website. (I have a bad feeling that I may have put the same links above. Sorry!)
Let me know what you find out!
I am guessing the anesthesiologist might suggest lidocaine infusion. They have published a few papers on the use of lidocaine in extreme cases where people can't function at all without their feet and sometimes entire body feeling like it is on fire all the time. However, it did work for those I read about.
Thank you all for your input.
P.S. I do find that every evening I soak my feet in warm water for 20 minutes. They get very red while doing it, but once out of the water I moisturize them and settle in my recliner to watch some t.v. Since I cannot tolerate a closed shoe or sneaker, I live in sandals year round and my feet take a beating. I live in NJ. Winters get cold, but my feet LOVE it. It is my happiest and most functional time of the year!!! My dog loves it too because he gets daily 3 mile walks in winter. Can't say the same for warmer weather. Oh, and get this one - One doctor I visited suggested I just move to Alaska!! I couldn't believe he said that.
Thanks to everyone for their input!!
This has a lot of useful information that everyone has shared just curious was anyone given sulfamethoxazole trimethoprim prior to getting the EM symptoms? I had a hysterectomy and got a bad infection and was given this medicine and right after taking it I started getting the burning feeling in my feet and then swelling and redness followed by a purple tint it has since started moving to my hands I have been in and out of Dr's the past 6 months and most of them just brush me off. I recently seen a neurologist at Mayo he said he believes I have EM and wants me to see a dermatologist but that is a 2 month wait I cam across a video from Mayo Clinic dermatologist Mark Davis posted in Jan of 23 saying Mayo sees a lot of these cases and have many doctors to treat it yet I am told only 1 doctor at mayo can so I have to wait 2 months to see them very frustrating so I am looking for alternative doctors anywhere to go to or anything that will help me get back to somewhat of a normal life. I have no other illnesses and have hot had any health problems in the past this all started right after my hysterectomy and when I was given the medicine for the infection so even though I show all the signs I don't know if I really have this or a long term side effect from something they did or gave me
I have EM, not primary but assumed to be connected to my Peripheral Neuropathy.
I've never been to Mayo. I'm on gabapentin and B12 shots since it was discovered I was deficit.
It has helped but I still have flares. My face, ears and hands are the worst, I have Raynauds too.
I have be careful with showers, my diet.. like caffeine and sugar, wearing closed shoes, being in the sun, general temperature and humidity.
One medicine my neurologist said treats EM is Amitriptyline. Maybe that's been mentioned. I carry a handheld fan with me if I leave the house. Keep popsicles/frozen fruit cup, reusable ice packs and a pitcher of cold water to keep me cool. Always trying to prevent the flair, or at least downgrade it.
Cbd salves have helped with pain.
I feel for you, it's terrible. Anywhere I live there is a window AC permanently parked in my bedroom. Sleeping the worst, my body so finicky. I find a small wrapped ice pack under my neck helps. But I sleep at morgue temperatures so I keep an electric throw at my feet cause I can't wear socks to bed. Then that can wake me up, but it's always a toss up with EM.
I have EM, not primary but assumed to be connected to my Peripheral Neuropathy.
I've never been to Mayo. I'm on gabapentin and B12 shots since it was discovered I was deficit.
It has helped but I still have flares. My face, ears and hands are the worst, I have Raynauds too.
I have be careful with showers, my diet.. like caffeine and sugar, wearing closed shoes, being in the sun, general temperature and humidity.
One medicine my neurologist said treats EM is Amitriptyline. Maybe that's been mentioned. I carry a handheld fan with me if I leave the house. Keep popsicles/frozen fruit cup, reusable ice packs and a pitcher of cold water to keep me cool. Always trying to prevent the flair, or at least downgrade it.
Cbd salves have helped with pain.
I feel for you, it's terrible. Anywhere I live there is a window AC permanently parked in my bedroom. Sleeping the worst, my body so finicky. I find a small wrapped ice pack under my neck helps. But I sleep at morgue temperatures so I keep an electric throw at my feet cause I can't wear socks to bed. Then that can wake me up, but it's always a toss up with EM.
...yes i have fan on me at night yet my body never liked cool air blowing on my skin... quite a dilema isn't it and no one-of-a-kind perfect help... i tore an old sheet into quarters so would have one of the 1/4s covering me to give me the feeling of a cover but not overly warm... never had diagnosis just found my own on here... this morning 4am was so painful but too tired to get up and get small gel packs from fridge.. agree sleeping is so uncomfortable and then so tired next day/s J.
My 21 year old son was diagnosed with Primary EM about 8 months ago. He has red feet, hands, forearms, face, knees and it's spreading and his hands are almost purple if not red. Fortunately, he does not have the pain associated with EM. However, this disease has severely affected his mental state and he says he no longer wants to live. He had no prior conditions, etc. He has taken aspirin, Gabapentin, Atenolol, Aspirin and is currently taking Topiramate but nothing has worked. He has also tried acupuncture. Has anyone taken any other medication or tried anything else that has helped them? I feel like his condition is more than just EM although he has had every blood test and was told there is nothing underlying. There has to be something that works and I'm desperate to find it.
I’m new to mayo connect but I wanted to share a brief overview of my experience. My onset was as an adult not hereditary. I was working in the medical field in an area where I saw patients that experienced this condition. I felt so bad for them! Then when I experienced my episode I knew I needed a specialist who treated this rare disease. Last year my symptoms now include Raynauds during the winter months. It happens indoors because I keep the house temperature on the cooler side but when I go outside it feels like frostbite within minutes. So sad because I love being outside year round. The treatment I use is the cream that has four ingredients added to calm the burning painful sensation. My worst time is at night. Daytime is episodic depending on my activity, stress and what I’m wearing for socks and shoes.
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3 ReactionsYes we did order it on Amazon . It is Silver Shield made by Natures Subshine. If you need anything else feel free to contact me again . I keep hoping that a cure will be found for all of us.
-
Like -
Helpful -
Hug
3 Reactions@erythromelalgiaca I see that you posted the same message twice, thinking that 1 person didn’t receive it. You can send the same message to several people as long as you put the @ symbol in front of each name. Try it!
You’ve been having a difficult time getting the help you need. Have you called GARD, genetic and rare diseases, or NORD, national organization for rare diseases?
https://rarediseases.org/
https://rarediseases.info.nih.gov/
They both have resources to help you and do have the names of doctors. Their phone numbers are on the website. (I have a bad feeling that I may have put the same links above. Sorry!)
Let me know what you find out!
I am guessing the anesthesiologist might suggest lidocaine infusion. They have published a few papers on the use of lidocaine in extreme cases where people can't function at all without their feet and sometimes entire body feeling like it is on fire all the time. However, it did work for those I read about.
Thank you all for your input.
P.S. I do find that every evening I soak my feet in warm water for 20 minutes. They get very red while doing it, but once out of the water I moisturize them and settle in my recliner to watch some t.v. Since I cannot tolerate a closed shoe or sneaker, I live in sandals year round and my feet take a beating. I live in NJ. Winters get cold, but my feet LOVE it. It is my happiest and most functional time of the year!!! My dog loves it too because he gets daily 3 mile walks in winter. Can't say the same for warmer weather. Oh, and get this one - One doctor I visited suggested I just move to Alaska!! I couldn't believe he said that.
Thanks to everyone for their input!!
-
Like -
Helpful -
Hug
5 ReactionsThis has a lot of useful information that everyone has shared just curious was anyone given sulfamethoxazole trimethoprim prior to getting the EM symptoms? I had a hysterectomy and got a bad infection and was given this medicine and right after taking it I started getting the burning feeling in my feet and then swelling and redness followed by a purple tint it has since started moving to my hands I have been in and out of Dr's the past 6 months and most of them just brush me off. I recently seen a neurologist at Mayo he said he believes I have EM and wants me to see a dermatologist but that is a 2 month wait I cam across a video from Mayo Clinic dermatologist Mark Davis posted in Jan of 23 saying Mayo sees a lot of these cases and have many doctors to treat it yet I am told only 1 doctor at mayo can so I have to wait 2 months to see them very frustrating so I am looking for alternative doctors anywhere to go to or anything that will help me get back to somewhat of a normal life. I have no other illnesses and have hot had any health problems in the past this all started right after my hysterectomy and when I was given the medicine for the infection so even though I show all the signs I don't know if I really have this or a long term side effect from something they did or gave me
-
Like -
Helpful -
Hug
3 ReactionsI have EM, not primary but assumed to be connected to my Peripheral Neuropathy.
I've never been to Mayo. I'm on gabapentin and B12 shots since it was discovered I was deficit.
It has helped but I still have flares. My face, ears and hands are the worst, I have Raynauds too.
I have be careful with showers, my diet.. like caffeine and sugar, wearing closed shoes, being in the sun, general temperature and humidity.
One medicine my neurologist said treats EM is Amitriptyline. Maybe that's been mentioned. I carry a handheld fan with me if I leave the house. Keep popsicles/frozen fruit cup, reusable ice packs and a pitcher of cold water to keep me cool. Always trying to prevent the flair, or at least downgrade it.
Cbd salves have helped with pain.
I feel for you, it's terrible. Anywhere I live there is a window AC permanently parked in my bedroom. Sleeping the worst, my body so finicky. I find a small wrapped ice pack under my neck helps. But I sleep at morgue temperatures so I keep an electric throw at my feet cause I can't wear socks to bed. Then that can wake me up, but it's always a toss up with EM.
-
Like -
Helpful -
Hug
5 ReactionsI use pentoxifylline 400mg 3x/day in my patients with this and low dose Naltrexone (2-4mg) nightly.
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3 Reactions...yes i have fan on me at night yet my body never liked cool air blowing on my skin... quite a dilema isn't it and no one-of-a-kind perfect help... i tore an old sheet into quarters so would have one of the 1/4s covering me to give me the feeling of a cover but not overly warm... never had diagnosis just found my own on here... this morning 4am was so painful but too tired to get up and get small gel packs from fridge.. agree sleeping is so uncomfortable and then so tired next day/s J.
-
Like -
Helpful -
Hug
5 ReactionsMy 21 year old son was diagnosed with Primary EM about 8 months ago. He has red feet, hands, forearms, face, knees and it's spreading and his hands are almost purple if not red. Fortunately, he does not have the pain associated with EM. However, this disease has severely affected his mental state and he says he no longer wants to live. He had no prior conditions, etc. He has taken aspirin, Gabapentin, Atenolol, Aspirin and is currently taking Topiramate but nothing has worked. He has also tried acupuncture. Has anyone taken any other medication or tried anything else that has helped them? I feel like his condition is more than just EM although he has had every blood test and was told there is nothing underlying. There has to be something that works and I'm desperate to find it.
-
Like -
Helpful -
Hug
2 ReactionsI’m new to mayo connect but I wanted to share a brief overview of my experience. My onset was as an adult not hereditary. I was working in the medical field in an area where I saw patients that experienced this condition. I felt so bad for them! Then when I experienced my episode I knew I needed a specialist who treated this rare disease. Last year my symptoms now include Raynauds during the winter months. It happens indoors because I keep the house temperature on the cooler side but when I go outside it feels like frostbite within minutes. So sad because I love being outside year round. The treatment I use is the cream that has four ingredients added to calm the burning painful sensation. My worst time is at night. Daytime is episodic depending on my activity, stress and what I’m wearing for socks and shoes.
-
Like -
Helpful -
Hug
3 Reactions