Well, I can add that I have PMR which is in remission, degenerative arthritis, high blood pressure, lymphedema, small fiber PN and have had both Pfizer vaccines, the new Shingrix vaccine and only minor reactions similar to what most people report.
Good for you. Unfortunately not everyone has your testimony regarding the vaccine and having only minor reaction when it came to SFN or other autoimmune challenges OR those without pre existing autoimmune concerns.
I read about a Doctor ( not on this forum) who said he developed tinnitus after receiving the vaccine and it has not reversed.
Again kudos to you with your minor reaction!👍🏾😊
Good for you. Unfortunately not everyone has your testimony regarding the vaccine and having only minor reaction when it came to SFN or other autoimmune challenges OR those without pre existing autoimmune concerns.
I read about a Doctor ( not on this forum) who said he developed tinnitus after receiving the vaccine and it has not reversed.
Again kudos to you with your minor reaction!👍🏾😊
What helps me at nights is Asper cream with 4% Lidocaine. I rub it on the top of my toes and foot and bottom. Sometimes it lasts all night and sometimes I have to repeat it. Good luck./
Be careful about long periods of ice packs on skin. I like the frozen microwaveable bed buddies (rice inside?) as they last long enough and do not damage skin.
I was searching for the connection between the COVID-19 vaccine and neurological issues like peripheral neuropathy, Erythromelagia, tinnitus, autoimmunity...you get where I am going. Wanted the find out who has experienced negative things to the point of regretting their decision to take it.
The CDC has the best information about reactions - I have MCTD, and despite a few days of higher inflammation, all was well. You are asking for anecdotal information on the COVID 19, but the size and accuracy of your "sample" is not statistically robust. The covid long haulers have severe lung issues and many of autoimmune systems. Just get the Jab!
The CDC has the best information about reactions - I have MCTD, and despite a few days of higher inflammation, all was well. You are asking for anecdotal information on the COVID 19, but the size and accuracy of your "sample" is not statistically robust. The covid long haulers have severe lung issues and many of autoimmune systems. Just get the Jab!
I was not posting "size and sample", merely making an inquiry and relaying that there are some based on their personal experience are not as lucky as others. To each his/her own subjective/personal knowledge. Brava for YOU👏🏾👏🏾😊👍🏾
I have secondary EM and idiopathic peripheral neuropathy. I have found several things that improved my EM and nerve pain. Many people do not believe or understand what it is like living with EM, and therefore think the suffering is only in the mind. I am not here to argue the reason why these things seem to have helped or make recommendations, only to share information that you can take or leave.
In no particular order:
1) Removed all root canals and metal fillings. Marked reduction in numbness after healing from dental surgery.
2) Warm (not hot) baths and keeping my foot temp as stable as possible with warm socks. Yes, it hurts at first, but soaking full body from the neck down helps reduce flares tremendously.
3) Avoiding vasodilators like epsom salt, certain meds, magnesium supplements, and for the most part chocolate. Important for managing recurrent flares.
4) Threw away my foam mattress and any cushions made of foam. Wool is expensive, but works wonders for temperature regulation.
5) Turned off the wifi to any and all electrical devices. Yes, it was annoying to switch everything to LAN cable, but it helped a great deal after an adjustment period.
6) Rarely wear shoes with foam inserts. Again the foam is terrible for temp regulation. Makes my feet start to burn within a short time of putting them on.
7) Spend time outside away from electrical devices whenever possible. This last one has taken me the longest to heal to a point to be able to do it. I was not able to do this while having huge EM flares.
I have secondary EM and idiopathic peripheral neuropathy. I have found several things that improved my EM and nerve pain. Many people do not believe or understand what it is like living with EM, and therefore think the suffering is only in the mind. I am not here to argue the reason why these things seem to have helped or make recommendations, only to share information that you can take or leave.
In no particular order:
1) Removed all root canals and metal fillings. Marked reduction in numbness after healing from dental surgery.
2) Warm (not hot) baths and keeping my foot temp as stable as possible with warm socks. Yes, it hurts at first, but soaking full body from the neck down helps reduce flares tremendously.
3) Avoiding vasodilators like epsom salt, certain meds, magnesium supplements, and for the most part chocolate. Important for managing recurrent flares.
4) Threw away my foam mattress and any cushions made of foam. Wool is expensive, but works wonders for temperature regulation.
5) Turned off the wifi to any and all electrical devices. Yes, it was annoying to switch everything to LAN cable, but it helped a great deal after an adjustment period.
6) Rarely wear shoes with foam inserts. Again the foam is terrible for temp regulation. Makes my feet start to burn within a short time of putting them on.
7) Spend time outside away from electrical devices whenever possible. This last one has taken me the longest to heal to a point to be able to do it. I was not able to do this while having huge EM flares.
Hello @crazyface5000, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing what helps you with your Erythromelalgia (EM). You've obviously been working on your list a long time.
Are you able to share any research tips for how you found the information that led to what has helped you?
Apologies, no I can not. These choices were made as result of long, careful thought on nerve signaling/damage, how that relates to radiant energy, temperature, and temperature regulation, and then personal trial and error which is why I make no claims as to why, how, or who this list may help.
Apologies, no I can not. These choices were made as result of long, careful thought on nerve signaling/damage, how that relates to radiant energy, temperature, and temperature regulation, and then personal trial and error which is why I make no claims as to why, how, or who this list may help.
I was just curious as I like to learn as much as I can about my conditions and do a lot of research using Google Scholar (https://scholar.google.com/) and a few other reliable sites for my idiopathic small fiber PN. The Erythromelalgia Association has some good information on their site if you haven't seen it before - https://erythromelalgia.org/resources/faqs/
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Good for you. Unfortunately not everyone has your testimony regarding the vaccine and having only minor reaction when it came to SFN or other autoimmune challenges OR those without pre existing autoimmune concerns.
I read about a Doctor ( not on this forum) who said he developed tinnitus after receiving the vaccine and it has not reversed.
Again kudos to you with your minor reaction!👍🏾😊
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Helpful -
Hug
1 ReactionHi I also know of someone who got debilitating tinnitus after the Covid vaccine. It was so sad.
Be careful about long periods of ice packs on skin. I like the frozen microwaveable bed buddies (rice inside?) as they last long enough and do not damage skin.
The CDC has the best information about reactions - I have MCTD, and despite a few days of higher inflammation, all was well. You are asking for anecdotal information on the COVID 19, but the size and accuracy of your "sample" is not statistically robust. The covid long haulers have severe lung issues and many of autoimmune systems. Just get the Jab!
-
Like -
Helpful -
Hug
1 ReactionI was not posting "size and sample", merely making an inquiry and relaying that there are some based on their personal experience are not as lucky as others. To each his/her own subjective/personal knowledge. Brava for YOU👏🏾👏🏾😊👍🏾
Is receiving the Covid vaccine of concern to anyone here in regard to possible worsening of flare ups??
I have secondary EM and idiopathic peripheral neuropathy. I have found several things that improved my EM and nerve pain. Many people do not believe or understand what it is like living with EM, and therefore think the suffering is only in the mind. I am not here to argue the reason why these things seem to have helped or make recommendations, only to share information that you can take or leave.
In no particular order:
1) Removed all root canals and metal fillings. Marked reduction in numbness after healing from dental surgery.
2) Warm (not hot) baths and keeping my foot temp as stable as possible with warm socks. Yes, it hurts at first, but soaking full body from the neck down helps reduce flares tremendously.
3) Avoiding vasodilators like epsom salt, certain meds, magnesium supplements, and for the most part chocolate. Important for managing recurrent flares.
4) Threw away my foam mattress and any cushions made of foam. Wool is expensive, but works wonders for temperature regulation.
5) Turned off the wifi to any and all electrical devices. Yes, it was annoying to switch everything to LAN cable, but it helped a great deal after an adjustment period.
6) Rarely wear shoes with foam inserts. Again the foam is terrible for temp regulation. Makes my feet start to burn within a short time of putting them on.
7) Spend time outside away from electrical devices whenever possible. This last one has taken me the longest to heal to a point to be able to do it. I was not able to do this while having huge EM flares.
Best of luck to my fellow EM survivors!
Hello @crazyface5000, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing what helps you with your Erythromelalgia (EM). You've obviously been working on your list a long time.
Are you able to share any research tips for how you found the information that led to what has helped you?
Apologies, no I can not. These choices were made as result of long, careful thought on nerve signaling/damage, how that relates to radiant energy, temperature, and temperature regulation, and then personal trial and error which is why I make no claims as to why, how, or who this list may help.
-
Like -
Helpful -
Hug
1 ReactionI was just curious as I like to learn as much as I can about my conditions and do a lot of research using Google Scholar (https://scholar.google.com/) and a few other reliable sites for my idiopathic small fiber PN. The Erythromelalgia Association has some good information on their site if you haven't seen it before - https://erythromelalgia.org/resources/faqs/