Fall of 2017 I became very ill with fatigue and tingling in my toes. Blood tests revealed a high ANA, so autoimmune disease was suspected. All markers for autoimmune were negative, but the tingling in toes started to move to feet and then legs from knees down. In 2020 the red, hot burning feet appeared. I diagnosed myself that very day once looking online at pictures of others with the same condition. I showed my doctor pictures of my feet and asked if he thought I had erythromelalgia. He agreed and said nothing could be done except pain management. I do not like drugs but I tried lyrica. Nothing happened. It did not help at all, so I discontinued it.
I later came to the conclusion that this was small fiber neuropathy - again after doing my online searches. I went to a neurologist and told him of my suspicion. He agreed to do a skin biopsy before he could diagnose me with SFN. The biopsy was positive. He thought that maybe ivig could help me. I received monthly infusions for six months. No improvement, so I discontinued that as well. I relate to all who have this dreadful condition.
Like others, I keep the heat low in winter and use air conditioning in summer. I love the winter since I can then walk with my dog for our 2 1/2 mile walk each day (wearing sandals of course). I cannot wear closed shoes. My feet heat up way too fast for that. I dread spring and summer. I feel like a prisoner in my home. Since I have a dog, I have to get out there and push through early morning walks and early evening walks.
Depression sets in as I realize warm weather is coming. My happiest days are cold, windy winter days when I can walk for miles.
I know others go through even worse things in life. I try to be grateful I don't have a systemic disease. Erythromelalgia is not dangerous, but it is life changing.
@mjohn Your erythromyalgia sounds like a real problem. And it sounds like the medicines weren’t working for you. Have you thought about getting a second opinion? You could research medical centers of excellence in your state or look up the Mayo Clinic’s Care Network. Link: HTTPS:// mayoclinic.org/about-mayo-clinic/care-network/members. You need a good diagnosis and proper care!
Is this something you would think about?
Mayo Clinic in Minn. has a dermatologist there who deals with erythromelalgia. Pain management is all they can really do for this. Creams, antidepressants, lyrica, etc. seem to be their go-to. No cures unless you can find out what exactly is causing the SFN which in turn goes into EM. I have been tested for all diabetes which does cause neuropathy. Negative there too. They can't find the cause, so there is no way to control whatever is causing it. Thank you for your post.
@mjohn Your erythromyalgia sounds like a real problem. And it sounds like the medicines weren’t working for you. Have you thought about getting a second opinion? You could research medical centers of excellence in your state or look up the Mayo Clinic’s Care Network. Link: HTTPS:// mayoclinic.org/about-mayo-clinic/care-network/members. You need a good diagnosis and proper care!
Is this something you would think about?
Yes, my neurologist seems to ignore it. He put me on PT for balance, but I only lose my balance when my ears have pressure, otherwise my balance is good.
....agony is how I would describe it. So it has been a year now since mine started... I had half hour sleep the other night,has gone from burning face to neck, chest-front and back and down legs and arms ... some days minimal some days a lot to cope with... saw Neurologist who didnt know what it is... so am left to figure this out myself. ..we do not have a lot of specialists where I life.... have ageing and other illnesses on top of it.. right now almost bedtime and face and even inside nose so painful, burning.... no swelling; not really on my feet but have p.m. in feet/cramping at night...
is it because not many people have this that no one seems to know what it is or what to do and they really dont seem to understand! ...
It's hard to prove your flesh is burning inside and out with no obvious signs, although when on my face it can be flushed but not always.... sorry to read your experiences too... but hope for a cure, when have been told they dont know what it is, doesn't appear possible 🙁
...glad to hear you have seen physicians who are trying to help with lab tests etc. ... i just had general blood work done, low vit d and b, but seems when take vit. pills feel queezy after so stopped taking
...I would like to pm yu but this week taking Trimethoprim for UTI - get them a lot as had cancer radiation (100 minutes total) back in the 1980s but last many years - long term radiation damage/pelvis. It all adds up doesn't it.
I have narrow angle glaucoma so cant take some meds, fecal incontinence, hypothryoid (had half taken out with goitre 1987, visual migraines, and the list goes on.. so local drs. dont have the time, inclination or energy to gtackle them all, having changed doctors over th eyears.. well will quit typing and read yours later .. thanks
....agony is how I would describe it. So it has been a year now since mine started... I had half hour sleep the other night,has gone from burning face to neck, chest-front and back and down legs and arms ... some days minimal some days a lot to cope with... saw Neurologist who didnt know what it is... so am left to figure this out myself. ..we do not have a lot of specialists where I life.... have ageing and other illnesses on top of it.. right now almost bedtime and face and even inside nose so painful, burning.... no swelling; not really on my feet but have p.m. in feet/cramping at night...
is it because not many people have this that no one seems to know what it is or what to do and they really dont seem to understand! ...
It's hard to prove your flesh is burning inside and out with no obvious signs, although when on my face it can be flushed but not always.... sorry to read your experiences too... but hope for a cure, when have been told they dont know what it is, doesn't appear possible 🙁
I don't know how to jump into this discussion. I never heard of Erythromelalgia before today, as referenced in a Neuropathy discussion. I searched high & low for why my feet had turned bright purple/red over the last 18 months & burn like they are on fire. I know I have PN, but my Vascular doc, PCP, Podiatrist, Pain Doc all had no idea about the skin changes. I know there is nothing any of them can do for me, but it helps to be able to, at least, do some research on my own. It's so frustrating & depressing to have a gaggle of doctors just shrug their shoulders and send my on my way. I think I found a name for this misery today, for whatever that's worth.
Heidi, I did find EM.org years ago when I first diagnosed myself with EM. I have been dealing since 2017. Okay, if you are going to contact one of the MD's on the list who supposedly treat EM be sure to ask when you make the appointment if he/she indeed treats EM. I visited a doctor on that site in PA around 2019, and she did not know one thing about EM. I even mentioned to the staff why I wanted an appointment and asked the receptionist to check with either the doctor or her nurse if she had an interest in EM. The receptionist came back to the phone and said, "I guess she does. She is smart and treats anything." That is the best I could get out of her. Anyway, I booked the appointment and waited 5 months to see her. When I showed up with photos during my flareups she wasn't familiar with EM and said she doesn't know why she would show up on the EM site as being proficient in treating EM.
Next - Heidi and others - go to you tube and goggle bob's protocol for EM. It is a desensitation program. Check that out and you will find valuable advice from other sufferers.
Good luck on your search for the life we all had before EM. I'm 6 years in now. Check out you tube!!!
I have had this for just over two years. My neurologist has tried different medications , done an EMG, x-rays, skin biopsy and other tests with no answers yet. I have found that for me a lotion called Silver Shield has helped lessen the burning of my skin. Anyone else tried this lotion ?
My son told me to look into a Homeopathic Dr. they ran some tests and then told me to try this cream. I was skeptical , but tried it and it does lessen the burning sone for me. Not a cure all but does offer me some relief . Let me know if it helps you any.
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@mjohn Your erythromyalgia sounds like a real problem. And it sounds like the medicines weren’t working for you. Have you thought about getting a second opinion? You could research medical centers of excellence in your state or look up the Mayo Clinic’s Care Network. Link: HTTPS:// mayoclinic.org/about-mayo-clinic/care-network/members. You need a good diagnosis and proper care!
Is this something you would think about?
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4 ReactionsMayo Clinic in Minn. has a dermatologist there who deals with erythromelalgia. Pain management is all they can really do for this. Creams, antidepressants, lyrica, etc. seem to be their go-to. No cures unless you can find out what exactly is causing the SFN which in turn goes into EM. I have been tested for all diabetes which does cause neuropathy. Negative there too. They can't find the cause, so there is no way to control whatever is causing it. Thank you for your post.
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Helpful -
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1 ReactionYes, my neurologist seems to ignore it. He put me on PT for balance, but I only lose my balance when my ears have pressure, otherwise my balance is good.
....agony is how I would describe it. So it has been a year now since mine started... I had half hour sleep the other night,has gone from burning face to neck, chest-front and back and down legs and arms ... some days minimal some days a lot to cope with... saw Neurologist who didnt know what it is... so am left to figure this out myself. ..we do not have a lot of specialists where I life.... have ageing and other illnesses on top of it.. right now almost bedtime and face and even inside nose so painful, burning.... no swelling; not really on my feet but have p.m. in feet/cramping at night...
is it because not many people have this that no one seems to know what it is or what to do and they really dont seem to understand! ...
It's hard to prove your flesh is burning inside and out with no obvious signs, although when on my face it can be flushed but not always.... sorry to read your experiences too... but hope for a cure, when have been told they dont know what it is, doesn't appear possible 🙁
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Helpful -
Hug
2 Reactions...glad to hear you have seen physicians who are trying to help with lab tests etc. ... i just had general blood work done, low vit d and b, but seems when take vit. pills feel queezy after so stopped taking
...I would like to pm yu but this week taking Trimethoprim for UTI - get them a lot as had cancer radiation (100 minutes total) back in the 1980s but last many years - long term radiation damage/pelvis. It all adds up doesn't it.
I have narrow angle glaucoma so cant take some meds, fecal incontinence, hypothryoid (had half taken out with goitre 1987, visual migraines, and the list goes on.. so local drs. dont have the time, inclination or energy to gtackle them all, having changed doctors over th eyears.. well will quit typing and read yours later .. thanks
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Helpful -
Hug
2 ReactionsI don't know how to jump into this discussion. I never heard of Erythromelalgia before today, as referenced in a Neuropathy discussion. I searched high & low for why my feet had turned bright purple/red over the last 18 months & burn like they are on fire. I know I have PN, but my Vascular doc, PCP, Podiatrist, Pain Doc all had no idea about the skin changes. I know there is nothing any of them can do for me, but it helps to be able to, at least, do some research on my own. It's so frustrating & depressing to have a gaggle of doctors just shrug their shoulders and send my on my way. I think I found a name for this misery today, for whatever that's worth.
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4 ReactionsThanks for posting the information Heidi for us to check.
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2 ReactionsHeidi, I did find EM.org years ago when I first diagnosed myself with EM. I have been dealing since 2017. Okay, if you are going to contact one of the MD's on the list who supposedly treat EM be sure to ask when you make the appointment if he/she indeed treats EM. I visited a doctor on that site in PA around 2019, and she did not know one thing about EM. I even mentioned to the staff why I wanted an appointment and asked the receptionist to check with either the doctor or her nurse if she had an interest in EM. The receptionist came back to the phone and said, "I guess she does. She is smart and treats anything." That is the best I could get out of her. Anyway, I booked the appointment and waited 5 months to see her. When I showed up with photos during my flareups she wasn't familiar with EM and said she doesn't know why she would show up on the EM site as being proficient in treating EM.
Next - Heidi and others - go to you tube and goggle bob's protocol for EM. It is a desensitation program. Check that out and you will find valuable advice from other sufferers.
Good luck on your search for the life we all had before EM. I'm 6 years in now. Check out you tube!!!
-
Like -
Helpful -
Hug
4 ReactionsI have had this for just over two years. My neurologist has tried different medications , done an EMG, x-rays, skin biopsy and other tests with no answers yet. I have found that for me a lotion called Silver Shield has helped lessen the burning of my skin. Anyone else tried this lotion ?
-
Like -
Helpful -
Hug
3 ReactionsMy son told me to look into a Homeopathic Dr. they ran some tests and then told me to try this cream. I was skeptical , but tried it and it does lessen the burning sone for me. Not a cure all but does offer me some relief . Let me know if it helps you any.
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Like -
Helpful -
Hug
3 Reactions