First post here to meet people and hopefully find answers when EM arrived in my life 2 months ago

General What's New With You?
1

Hello everyone, I am glad finally to find a place where I can share my new life experience which has definitely turned my life upside down, from never being sick or having strange symptoms, to turning it 180 degrees around.

It all started around March having a red spot on my toe which didn’t seem to cure really. At the same time I noticed that when I would step out of bed and touch my feet on the ground, I would feel a light sparkling feeling with tingly. I thought it was strange, but when on with my life as I thought it would go over some time. After that, I noticed now and then my fingertips were a bit numb in the morning when I went out for training. I thought it was the cold air during that time, but I noticed it was still there when working behind my laptop. Then I got the feeling of tingly feeling on the backside of my scalp, not the whole time but just a couple of seconds now and then. This did freak me out a bit as I wasn’t sure where it was coming from. This has now nearly gone luckily.

After a while, I noticed that when I was wearing shoes the whole day, it would become tingle very intensely under my feet, which is still the case, and sparkle the whole time. Although when I would take out my shoes and socks, it would vanish through 5-10 minutes and fade away. Strangely sometimes when my feet are tingly, because of wearing shoes and socks and I would take off my socks, my feet were not red. But most of the time they are when I get a flare, by doing some activities like gardening or something like that.

Then I noticed that when I would come out of the shower, my feet would have red stains due to the heat of the water and it would tingly intense too. The same happened as well during dinner time, that out of the blue I would get red toes and my feet become really warm, without doing any activity. So it really gave me a question mark to understand what I going on in my body.

I have done a lot of research on the internet, maybe a little too much as well. But this situation has made me so desperate that I come to a point that I would do anything to get rid of this. Although it doesn’t yet seem to do so.

I have done 12 acupuncture sessions and dramatically eating food that related to Yin deficiency, which should cool the body from inside and give some relief. But it hasn’t yet given any promising results, although it has given me some relief that the flares seem to be only in the evening without activity.

Because I am 41 and have some slight history with symptoms of Ankylosing spondylitis, I thought it was my immune system, but nothing has shown yet in my blood. I have done EMG tests and MRI scans, which showed perfect data to exclude diabetes, MS, etc. I went to the dermatologist Friday and she said based on my pictures it definitely looks like EM.

So I am now at the point really to understand better, how can trace where this is coming from?
As the medical specialist at the hospital in The Netherlands didn’t even know EM when I provided them the information.
I am seeing a hematologist this Friday to do some blood analysis.

Some questions I have for here:

  • When I wake up with my consciousness in bed in the mornings, my feet start to tingle straight away with some red stains on the side of my little toes on both feet. Does anyone else here have the same?

  • Does anyone experience tingly feet when you walk with socks and shoes, without the redness and warmth?

  • Does anyone experience tingly sensations on the back of your scalpel now and then?

Due to my age of 41, it looks like secondary EM and I sometimes have the slight idea that I have some kind of SFN, because of the tingle sensations I get on the sole of my feet when wearing shoes. But not 100% sure, because when I have bare feet and sit down or do not walk, I don’t have any symptoms really. It only starts when I do something or put on socks with shoes.

I am taking loads of supplements:

  • Lions mane
  • Fish Oil
  • Benfotiamine B1
  • Ashwagandha
  • Alpha Lipoic
  • L-carnitine
  • Magnesium

No meds yet, as I want to try to heal this first naturally with mind and body. But I am coming to a point that I would like to try something, but not sure where to start.

I have bought two books I have found on amazon about reversing EM.
One is about a raw fruit diet for 30 days and the second one is a book about using capsaicin cream on your feet in a plastic bag for 2 hours or so.

Other than that I am more than open to learning what has helped you?

I have found an interesting audio file of a neurologist who talks about treating EM as “Man on fire syndrome” and he basically said that a lot of patients with secondary EM have a good chance of healing EM during time with an average of 2,5 years to 5 years with the right approach. So that’s where I am holding to.

Look forward to hearing from you about what has helped.

Many thanks!.

Rgds,
James Cameron
The Netherlands

2

I’m sorry you’re having this trouble. You say you have a “slight history with symptoms of Ankylosing spondylitis”. What does that mean? Do you have Ankylosing spondylitis? EM can be secondary to autoimmune disease. EM can also sometimes present before an autoimmune disease. In instances where EM is secondary to another disease, treating the underlying condition is the standard of care.

As far as treatment, you need to let go of the idea there are any “natural” ones. Every compound or element is a chemical. “Supplements” are just chemical compounds not intended to treat or cure disease. You’re taking way too many to know if any single one might be providing benefit.

I recovered from EM. I took mexiletine, which is a sodium channel blocker.

1 Like
3

Thanks for the reply. Well it means I have been diagnosed several years ago through medical pictures that it looked like Ankylosing was emerging in my body, with lower back problems. Although through the years it slowly got a lot better and it is now in doubt by my neurologist if I really have Ankylosing. That having said I have been on daily diclofenac 30mg for 4 years, which is used for anti-inflammation. Sometimes I think could that have been the trigger why I am having EM and the tingly sensations. I have stopped taking diclofenac when the symptoms started, but so far not really any changes happened.

yes you may have a point there, that I have to cut down on the supplements. It’s just that I want to try anything that might help in my search for recovery. I think I might stop the supplements in take for next month and see how that works.

Interesting to read you recovered from mexiletine, when searching about it I can see it is not available on the Dutch market, only by exceptions when patients have a gene.

4

It’s probably coincidence but I was taking diclofenac when my EM started too. I had an athletic injury a few months prior and it was prescribed for that. I stopped taking it after the EM started but, like you, didn’t notice any immediate improvement.

It’s best to trial treatments one at a time. That way you can better ascertain whether the compound is providing any benefit.

5

Hi. Sorry to hear you are going through this, although your symptoms don’t appear to be too bad so far.
I have found that wearing sandals helps a lot. If you can get a good nights sleep you are doing well.
Diclofenac even at only 30mg is a potent medication and long term may cause skin rash.
Benfotiamine b1 and alpha lipoic can also cause skin rash.
Fish oil has been associated with increased prostate risk in males so be careful there as well.
It sounds as though you are very health conscious and I assume you are healthy body weight which also is key I believe.
Bear in mind you are in the hotter summer season as well which will exacerbate EM .
I notice your area is going through a very difficult COVID time with your hospital ICUs full up so the stress levels must be intense. This ( stress) will also exacerbate any medical problems.
I wonder if you are taking any other medications, if so study any potential side effects carefully. As Carter has said, a medication may have triggered the EM.
All the best.

6

Helo kiwi, many thanks for the reply and also for the kind words that I am doing oke so far, including the suggestions to be careful on some of the supplements.
Yes indeed wearing sandals does help a lot to go through the day. That having said, there are still a lot of occasions that I have to wear shoes.

I must say that for the last 2 days I have been testing my feet, what happens if I just hold my shoes on and accept the tingle sensations. What I noticed, is that the tingle sensations, like the feeling of having 1000 ants crawling under your feet, is there nearly the whole time. WhenI take of my shoes and socks, it takes 10-15min when it stops and the redness is quite oke. Not as bad as the flares I used to get when walking without socks and shoes and toes would become red.

It’s just that strange thing, that as soon as you put on shoes and start to move, it seems like your feet doesn’t have the ability to export the circulation of air or blood, because the pins and needles is continues on. Taking of the shoes it disappears. Wonder if this is always the case with having EM?

Coming back on your question, other than diclofenac I don’t take other meds. AlthoughI have had a replacement for the diclofenac, taking Etoricoxib which was suggested by my reumatologist at the time. I have stop taking this med when these symptons started though.

Is the pins and needles under feet a common thing for EM, next to the redness etc?

7

I would say it’s a little atypical. Paresthesia (pins and needles) is usually a byproduct of the erythema (redness). At least, it was for me.

Also, absent medication nothing besides ice application made my flares go away. I couldn’t wait them out. I tried many times and it was too painful. That you can wait 10-15 minutes and a flare will go away is better than I had it. I never once had a flare go away on its own.

EDIT: I couldn’t even wait out a flare with a fan. Wetting the skin and using a fan did not work either. Simply nothing worked except ice.

1 Like
8

I see you have already been forwarded some information on pins and needles. If you type in key words of interest in the search engine at top right hand corner you will discover a mine of information.
Your blood tests will help determine whether you have primary or secondary EM. If you don’t know what I mean by this, then suggest you look at Dermnet NZ website Erythromelalgia.
I wonder if your parents or grandparents ever complained of foot problems.
In the meantime I would cooperate with the inevitable and try not to wear socks and even shoes. If you feel you must wear shoes for work, perhaps talk to the boss or even get a medical certificate to back you up.
All the best.

1 Like
9

I have a lot of the same symptoms but mine is my hands as well as my feet. For me none of my symptoms happened until after my second dose of Pfizer vaccine. I’ve seen several specialists and I’m not sure if I will ever get answers or if this is permanent :frowning: Elevating my feet helps some and I’m on Cymbalta as well which has helped some. I hope we all find something to help us because this crap can be debilitating at times.

10

Hi James,
“Not as bad as the flares I used to get when walking without socks and shoes and toes would become red.”

I found this true as well. It seems keeping the feet at a consistent temperature helps reduce the intensity of flares. I read this here a while back . A long ago post mentioned trying to keep feet and hands at a consistent temperature.

While open toe shoes may be great in the heat. I found going from heat to air conditioner stores back to heat terrible. For me it is best to keep socks and shoes on for the extreme temp variables.

I as well get pins and needles sensations in feet, hands and sometimes scalp. Nothing has shown on tests so far and due to cost I have given up searching as to why.

11

If you have not seen this group yet, “Bob’s Protocol” has been very helpful for a lot of people. And while it did not cure my wife, the quality of life improvements can not be understated. She went from spending most days in bed or at best a chair, to being able to walk around the house and getting out at least when it isn’t to hot outside. Hope it helps! Facebook Groups

12

Hi Machel and Kiwi,

Thanks for the feedback, that is interesting to read through.

@CarterDK I sometimes think that it’s actually the other way around so that EM is a byproduct of the pins and needles sensation I get after walking or having shoes on daily. But I guess this is a million-dollar question for anyone.

My neurologist says all test with MRI and EMG show nothing strange, but still I have the pins and needles under my foot sole.

My blood test also shows no strange things which could lead to blood cluts or any given blood complex that can cause secondary EM. Also any Auto-immune or diabetes show nothings. I have stopped the medication I was taking for 2 months. So that seems also not the casuse. So this all brings me back to the drawing table, that it has to be something that relates to SFN or PN as I am getting those tingly sensations in feet and also small paraesthesia feelings now and than. I don’t get numbness or pain. It’s just a strange and uncomfortable feeling when you go out to do things. And also hard to explain to other people, because you are derived by it in your mind doing daily tasks.

Yesterday evening I was frying tofu in a pan in the kitchen and my feet when crazy feeling the warm, red glowing toes al over the place. It did calm down actually soon after I was finished cooking.

I am trying to find an EM specialist at a SFN specialist centre somewhere in the country. To see if that can lead to more answers where this is coming from.

I am starting a cleans ritual followed by Anthony William book “cleans to heal” when I get back from holidays. Also trying different bio resonation for improvements of cell regeneration in the body. I am confidence I am going to find and cure it, just so frustrating it is taking so long to find something.

@Matt_N Thanks, will check that.

13

That author is a con artist who dispenses pseudoscientific information to steal the money of others. Please, don’t be one of his victims.

14

Just to clarify, are you saying that you are no better, and maybe worse when wearing sandals or no socks?
Are you able to sleep ok? Do your feet start to react when you lie down to sleep?

15

Trying something on a natural base first can never hurt rather filling your body instantly with pharmaceuticals, which I am saving for a later stage if things don’t change.

Yes that’s correct indeed! I sleep oké, but my feet start instantly when I lay down to sleep and when I wake up, but than it is less severe. So is that a good or bad sign you think?

I am to Spain today for a holiday, so quite exciting how the hot weather is going to be.

16

The author of that book has no medical training and is a self-described “Medical Medium” who claims to get advice from a supernatural “Spirit”. He is a fraud who swindles money out of the sick. Sick people are the easiest to scam because they are often desperate. Please, don’t give him any money.

Snake oil is a term used to describe deceptive marketing, health care fraud, or a scam. Similarly, “snake oil salesman” is a common expression used to describe someone who sells, promotes, or is a general proponent of some valueless or fraudulent cure, remedy, or solution.

Wikipedia: Snake oil

17

Hope your Spain holiday goes well.
Whilst there in Spain perhaps you could try swimming as many people have had good relief with swimming.
EM sufferers have also occasionally obtained relief using magnesium as a more natural solution.
I have found after 67 years that many people will try to take money off people suffering. You are obviously very intelligent so do your due diligence carefully.
The leaders of this site have only your best interests at heart.
All the best.

18

Hi James,

I’m sorry you’re dealing with EM, hope you can find some help on this site.

First things first, you must work with doctors who have seen EM before, be it a dermatologist, neurologist, rheumatologist etc… The erythromelalgia association has a physician directory that can do just that.

Dr Cohen got his EM under control through trial/error, he has lots of valuable information on his website covering supplements, pharmaceutics etc…

Take a look at some of the threads on Bob’s Protocol, which Matt_N suggested, some have found improvement with that method.

As far as SFN goes, this is typically diagnosed with a hole punch biopsy. Dr Oaklander, a neurologist in Boston, specializes in this field and has some valuable information on her website, including a checklist for possible causes.

Checklist

Oaklander’s lecture on SFN

Lastly, you mention Ankylosing Spondylitis, I recall others on this site describing their experiences with AS and EM, may want to search it.

Good luck with everything.

1 Like
19

Thank your for your kind message and yes indeed Inreally appreciate the community here that al has the intention to help each other.

I must say that the holiday in Spain is quite oké with the outside temperature. Indeed dipping in water helps a lot. Only have to mind the hot sand and the evening are more sensitive for flares. Also has to do with late dinner I guess. I noticed a numb toe during the week which has given more the idea that a nerve damage somehow seems to be there I think that is causing it. My dermatologist said she can’t help me because she hasn’t got the right expertise. She also mentioned that a numb feeling has more direction to neurological damage than skin damage. and has supported to forward me to a academic hospital which has a SFN specialist centre with medics that have experience in treating symptoms of EM and SFN. So al my hopes are on there that they can help me finding the cause of these symptoms.

20

Hello kost, thank you so much for this insightful information! Really useful for me to help and guide the medics in the hospital to find the right approach.

When I get back from holiday I will have my third blood test to be done to search for autoimmune diaseases. My bloodtest for heamatologica hasn’t showed anything. They didn’t want to test fabry because they said it was unlikely that I would have that looking at the symptoms. I didn’t really like that so will ask my neurologist if she thinks the same.

That de cohen looks interesting. I was on the website before but couldn’t find the right page navigating throug it, so glad to see you have shared the right one.

The Bob protocol is the one related to capsaicin cream treatment isn’t it? Definitely something I am looking in to to give it a try.

Again thanks for everything! Really appreciate it.

Next week I have a call update with my neurologist to discuss next steps. I hope that she can support me to do more test on SFN to see what that picture can tell. Will keep you updated.