New to this great forum + questions!

Welcome New Member Introductions
1
Hello everyone, I'm very happy to have found your group, thank you for being a part of it!
It is great that we can share our experiences and help each other.

I was diagnosed with Erythromelalgia last month and I first noticed my symptoms 5 months ago. Like many others I found doctors to be quite difficult about this, even with pictures of flaring feet or after suggesting EM to them.

I get flares from walking for short periods or by being warm (some shops or restaurants are now off-limits). During flares I get very hot feet with swelling and redness, almost painless so far (though I seem to form blisters easily and to have a lower pain threshold nowadays).
I cannot wear closed shoes or even sandals that somehow touch the toes (unless it is ~0ºC). When not flaring, my feet are generally quite cold. Flaring is usually symmetric but not always.
My EM might be secondary to glandular fever, which lasted two years.
Does anyone have some insight on these matters?
1. What do you do when it rains? Wear closed shoes anyway and induce flares? Go out in the rain? Stay at home (how about work?)?
2. Regarding therapies: did your doctors ask for these tests?
In this article http://www.ncbi.nlm.nih.gov/pubmed/11050591 Dr. Cohen mentions tests to differentiate between between 3 types of EM, as the medication that improves one type might worsen the other types. The relevant section is below:
"Different subtypes of erythromelalgia? Belch has categorized 3 subtypes: thrombocytosis/hyperviscosity, microvascular ischemia (vasoconstrictive), and vasodilatory. Whereas most patients exhibit the vasoconstrictive/reactive-hyperemia type that responds to the infusion or invasive approaches mentioned above, the less common vasodilatory type will worsen with these therapies. Conversely, the latter may respond to the vasoconstriction of unselective beta blockers like propranolol, whereas the former will worsen with such treatment. To differentiate these types, Belch recommends vascular studies performed in warm and cool environments that include Doppler pressures, laser Doppler flowmetry, thermography, and tissue PO2 monitoring. The Mayo Clinic often performs nerve biopsies."
3. From what I've read, it is unusual for EM sufferers to sweat a lot but I do (possibly due to my hyperlaxity, I've been told), which makes my feet very attractive to fungi. The itch and pain caused by the infection, exacerbated by the heat from the EM, made me scream and cry. Did anyone else experience this?
Thank you all!
2

Hello Tarsius.

I haven't had all of the tests above but I have had an ultrasound of my vascular system upper and lower but the room temp at the time was not too warm or too cool so I wasn't symptomatic at the time and results came back normal. It is difficult because you can't know how you will be on test day. In hind site I probably should have let my car be warm prior to going in so I would be symptomatic.

I have a full on neurovascular instability where I have problems with both vascular dilation and constriction so I have had a hard time finding something that helps without making my other symptoms worse.

I don't sweat much now and for some time I didn't sweat at all. During that time my symptoms of EM were at their worst. If I am not burning my hands and feet are very cold if not completely numb and white or purple. Before my EM became a problem I had excessive sweating for a few years. I would try every deodorant I could find hoping to find one that would do anything. I never thought much of it t the time.

I have had EM now about 5 years and I haven't sweat like I used to since. It is either a small amount or not at all.

I can't work or go to other peoples houses or stores. I can't wear closed toe shoes unless it's very cold and it often still induces a flare. I don't leave my home often but if I must and it's raining I just wear my flip flops in the rain. I couldn't walk if I didn't.

I hope you are able to find something that helps you soon

3

Tarsius, this is fascinating information, and thank you for posting it.when I go to the NIH link you provided, all I can access is an abstract. How do I reach the fascinating information about the three subtypes of erythromelalgia?

I have had EM for 25 years. It has been very slow to progress, so I didn’t have to start limiting activities until about 10 years ago. Now, like Alina, my life is quite restricted. I am fortunate to be able to work at my computer a couple of hours a day. When I do venture out, I have to wear flip-flops or loose sandals, no matter what the weather/temperature.

Any time I stand in one place for a few minutes without moving, a flare begins. So I can induce a flare at the doctor’s office by just standing up and waiting. I also have flares every afternoon, usually starting around 4:00.

I have not had any testing. I don’t know where someone would find a doctor who would even know about these tests except at Mayo Clinic, Rochester.

I have never had any sweating abnormalities one way or the other. I have a pretty complete profile on my page, so if you want to check if there are any similarities, feel free to do so :slight_smile:

I hope you have success finding treatment and can adapt to have a full life!

4

Hello Tarsius,
You sound very like me when I began with EM nearly five years ago. I thought I would never again wear shoes or even sandals, nor would I ever be able to wear my drawerful of warm jumpers. By two and a half years later I was taking Clonazepam and cetirizine and added aspirin to the mix. My flares were markedly less severe in nature but my Raynauds became much worse. Paradoxically, when my EM was at its worst I didn’t sweat at all and I was a person who enjoyed being in the sun but sweated freely. Now that I am more likely to be found with frozen appendages which only warm up when I have a sudden flare, I sweat in parts of my body which do not flare. Never where I am flaring.
As for wearing shoes, at first it was unthinkable but if I have to go out into freezing rain I wear compression socks and tightly strapped shoes and I tolerate them well though I rip them off the second I get home. Gentle walking is OK but buses and tube trains are intolerable.

My EM is always evolving. It is different today than 6 months ago, different again to a year ago.

With regards to fungal infections, I had one in the early stages and once I had got it under control I took to using a foot cream all over my feet. I don’t know if that was a good thing or bad to do but I had no further fungus problems

Good luck with your research.
Nel

5

Hello Alina,

Thank you so much for you comment!

Not being able to induce flares can be problematic for diagnosis indeed.

I get purple feet sometimes even when they're warm, which I find puzzling.

Maybe my sweating will fade with time as well. I do sweat more during flares (like right now) but also when the toes are cold (again, puzzling).

I also get flares with closed shoes near 0ºC but take a bit longer to happen and seem milder. I hope I can find medication that works but I find the trial and error process somewhat scary since it can make things worse.

Thank you for you detailed description of what troubled you and how you handled it, I find it very helpful. I've also found so many unhelpful doctors for this condition and others - I don't quite know what to make of it. Fortunately there are a few good ones out there.

I hope you can find something that allows you to do more things that you like doing!

Thank you again and all the best!



Alina Delp said:

Hello Tarsius.

I haven't had all of the tests above but I have had an ultrasound of my vascular system upper and lower but the room temp at the time was not too warm or too cool so I wasn't symptomatic at the time and results came back normal. It is difficult because you can't know how you will be on test day. In hind site I probably should have let my car be warm prior to going in so I would be symptomatic.

I have a full on neurovascular instability where I have problems with both vascular dilation and constriction so I have had a hard time finding something that helps without making my other symptoms worse.

I don't sweat much now and for some time I didn't sweat at all. During that time my symptoms of EM were at their worst. If I am not burning my hands and feet are very cold if not completely numb and white or purple. Before my EM became a problem I had excessive sweating for a few years. I would try every deodorant I could find hoping to find one that would do anything. I never thought much of it t the time.

I have had EM now about 5 years and I haven't sweat like I used to since. It is either a small amount or not at all.

I can't work or go to other peoples houses or stores. I can't wear closed toe shoes unless it's very cold and it often still induces a flare. I don't leave my home often but if I must and it's raining I just wear my flip flops in the rain. I couldn't walk if I didn't.

I hope you are able to find something that helps you soon

6

Hello Anne,

Thank you for you comment!

I quoted all the info regarding the 3 subtypes of EM in that article (it is a citation from another article from Dr. Belch to which I do not have access: "Belch JL. Temperature-associated vascular disorders: Raynaud’s phenomenon and erythromelalgia. In: Lowe GD, Tooke JE, editors. A textbook of vascular medicine. London:Oxford University Press; 1996. p. 339-52.").

I would also like to learn more about them as I think I was prescribed a medication for potentially the wrong type. If I find out anything else I'll let you know.

It is probably useful to be able to induce flares at the doctor's office, at least they'll believe you (hopefully - you never know).

I'm currently looking for work but what I've been doing up until now isn't very compatible with wearing sandals, maybe I'll find something a bit different.

Thank you for putting up such a detailed description of what happened to you and how you handled it. Small details like cold air and water but not cold packs being triggers for Raynaud's can make such a difference.

I saw that you tried many different medications, I hope you can find something that helps you!

Thanks again and all the best!



Anne said:

Tarsius, this is fascinating information, and thank you for posting it.when I go to the NIH link you provided, all I can access is an abstract. How do I reach the fascinating information about the three subtypes of erythromelalgia?

I have had EM for 25 years. It has been very slow to progress, so I didn't have to start limiting activities until about 10 years ago. Now, like Alina, my life is quite restricted. I am fortunate to be able to work at my computer a couple of hours a day. When I do venture out, I have to wear flip-flops or loose sandals, no matter what the weather/temperature.

Any time I stand in one place for a few minutes without moving, a flare begins. So I can induce a flare at the doctor's office by just standing up and waiting. I also have flares every afternoon, usually starting around 4:00.

I have not had any testing. I don't know where someone would find a doctor who would even know about these tests except at Mayo Clinic, Rochester.

I have never had any sweating abnormalities one way or the other. I have a pretty complete profile on my page, so if you want to check if there are any similarities, feel free to do so :-)

I hope you have success finding treatment and can adapt to have a full life!
7

Hello Nel,

Thank you for your comment!

Raynaud's and EM do seem like a complicated mixture (though rather frequent). I've always had cold feet, I wonder if I will (or have already) develop(ed) that too. I very much sweat between my toes during flares (having one of those right now). I wouldn't care if it weren't for the fungi loving it so much. I applied several active principles in cream form and one of them as a pill but it keeps coming back. Trying a different pill now, hope it works. I'm happy it worked for you, I think it was a good thing that you did!

Walking around the house is usually ok but going outside will most likely result in flaring. Shoes are currently not an option, hope I can in the future, like you, wear closed shoes when it is raining, it is good to know that that possibility exists.

Thank you again and all the best!


Nel said:

Hello Tarsius,
You sound very like me when I began with EM nearly five years ago. I thought I would never again wear shoes or even sandals, nor would I ever be able to wear my drawerful of warm jumpers. By two and a half years later I was taking Clonazepam and cetirizine and added aspirin to the mix. My flares were markedly less severe in nature but my Raynauds became much worse. Paradoxically, when my EM was at its worst I didn't sweat at all and I was a person who enjoyed being in the sun but sweated freely. Now that I am more likely to be found with frozen appendages which only warm up when I have a sudden flare, I sweat in parts of my body which do not flare. Never where I am flaring.
As for wearing shoes, at first it was unthinkable but if I have to go out into freezing rain I wear compression socks and tightly strapped shoes and I tolerate them well though I rip them off the second I get home. Gentle walking is OK but buses and tube trains are intolerable.

My EM is always evolving. It is different today than 6 months ago, different again to a year ago.

With regards to fungal infections, I had one in the early stages and once I had got it under control I took to using a foot cream all over my feet. I don't know if that was a good thing or bad to do but I had no further fungus problems

Good luck with your research.
Nel
8

Tarsius,

I have had periods of night sweats where I drenched the bed, and foot sweating (also fungal infections that were very hard to get rid of). Now I barely sweat and do have issues with my body regulating temperature. I am recently diagnosed as well and still have good functionality with going out and such. I have had EM symptoms on some levels for at least 5 years. My preferred foot wear in summer is flip flops or sandals. This is the first winter that the EM has hit my feet aggressively. So far I am wearing a pair of slip on sneakers that have mesh top which is very ventilated, and crocs both with no socks unless it is freezing out. I am careful to keep car heat off my feet, especially in other people's cars, in my own car I use defrost only if I need it on my windshield. Otherwise very little heat. My feet do swell with going out but I try to elevate them asap when I get home and get off my footwear. So far I have been successful in that.

I had a vascular ultrasound but the doctor did not find anything at the time I was not flaring much like Alina reported.

9

Hello K-ren,

Thank you for you comment!

Can you tell me how you got rid of the fungal infections? I'm extremely careful and used several antifungals (and a UVC device on the shoes) but still get them.

I see that the tests that can differentiate between the 3 types of EM and would allow getting a more tupe-specific medication can be problematic since it is hard to induce flaring at will for so many people (me included).

I've also been having trouble sleeping lately, waking up frequently with flares. I'm thought it might be due to using a duvet but I was almost shivering last night and still had them. And also have dry eyes and feet skin (callous in the sole). For me also, tiny bumps also can cause excruciating pain but not always (maybe more so when it happens during a flare).

Thank you for your detailed description, I'll complete mine a bit more!

All the best to you!

10

Hello again Tarisus.

I know what you mean by sweating when you are cold.

It is the strangest thing but when my feet are cold white and numb this is when my feet sweat the most sometimes.

Even if I am not cold. just my feet. I will try to warm them with socks and slippers but they just sweat like crazy and the wetness from the sweat only makes them colder! When this happens I try to wrap my feet loosely in blankets so I don't have material snugly around my feet so they will warm up but the sweat will be able to dry because I am not wearing now wet socks. Just be careful when warming your feet that as soon as they don't feel cold immediately take off the blankets so they don't start to burn. If left on past that point a flare comes next for me. Sometimes my feet will be cold numb and sweating for days or weeks at a time then suddenly all they want to do is burn! This cold feet thing happens sometimes in the summer as well so it doesn't have to be cold for this to happen.

I am so glad you have found some doctors that are able and willing to help you.

Take care

11

Hi Tarisus

I experienced absolutely no sweating for about 6 years, then I started to sweat and started to sweat excessively (I have a dysautonomia - a dysfunctional autonomic nervous system and sweating profusely or little is a sreymptom). Now I sweat profusely if I expend any energy that is more than gentle. At other times my skin, all over, is dry and looks it.

Not so long ago I developed a fungal infection of the feet. I have been using a spray that is supposed to be effective but I find that it looks like the infection has gone away only to have it return. (I tried a cream but the cream itself made my feet feel unbearably hot -- I had to wash it all off almost immediately. I'm going to the chemist to buy some more spray. I never wear any shoes unless I am going out (which I rarely do, and the outings aren't for long), and it's then I put on a pair of very open roman/peasant style sandals -- no synthetics, all leather. I've been living mostly barefoot for 13 years now and I can only think it might be the heat that makes it so difficult to get rid of a fungal infection. I have to wonder if having hot feet was the reason for getting it in the first place because, as far as I understand, it is rare for people who are barefoot all the time to get fungal infections of the feet.

blue

12

Hi Alina,

Ok, so this can happen. Thank you for all the details! I've tried socks (after 15 min feet started flaring so, like you said, the moment they stop being cold I have to get them off), will try the loose blanket or sheet, thank you :)

I was very happy to find someone who even heard of this condition; now a specialist is needed (or 2 - I'm being greedy because I foresee the need for a backup one: for this condition and others that I have I seem to constantly bump into ignorant and/or evil doctors, which is stressful and expensive. Does this happen to you too?).

Take care!

13

I’ll say Tarsius! I spent thousands of dollars and at least 30 doctors ( I promise no exaggeration) before I found one that didn’t chalk me up for crazy. So many would just simply say…that’s not possible. Even when they saw me red all over they said I should switch soaps or lotions. If only one of them would have touched me they would have felt the warmth. I finally had to travel out of state and stay at a hotel for a month at the Mayo clinic before I was diagnosed. Even there I was called crazy. At the Mayo I saw probably 20 different doctors over that month and it was my last appointment when that doctor said I think that you have Erythromelalgia!
I only saw this doctor because the previous Rheumatologist spent all of 5 minutes with me if that he didn’t even give me any type exam. Just walked in and said my labs all look fine and he couldn’t help me. I was so pissed after spending 5 thousand dollars on the hotel alone not to mention eating out and medical expenses! I complained to a patient advocate that the last doctor just walked in and said he couldn’t help and walked out.
They gave me a new appointment with a new Rheumatologist who actually examined me. He had my shoes off and saw they were red. He touched them and said wow! Your feet are hot! That’s so strange because your labs show you have no inflammation but this looks like inflammation to me. You know what I think this is ? Erythromelalgia! And there it was! 2 years , thousands of dollars I don’t know how many tears and there it was. I don’t know what I would have done if I has to go home with no diagnosis.
Sorry for the long rant. It was just so frustrating being told you were just crazy for so long.
Short story short…yeah I get it :slight_smile:

14

Hi Blue,

Thank you for your comment!

So apart from the excessive sweating having started for you after EM and before for me, our stories seem similar regarding fungi and footwear at least. I wonder if I have dysautonomia too.

Fungi do like heat + moisture, not brilliant for EM sufferers who sweat profusely :/

One thing I noticed when using antifungal creams was that the cuts between the toes increased when I put more cream. I know this sounds nonsensical at first. I spoke to a doctor who told me that the water present in the cream can actually promote fungal growth, as they like moisture, despite the presence of the antifungal compound; that doctor told me to put as little cream as possible and/or remove the excess after applying it.

I had another infection this month (having had cuts between the toes since March). The itching and pain wouldn't let me sleep; it was heightened to almost unbearable levels by the heat generated during the flares (the neurologist confirmed this interpretation).

You might be allergic to something present in the cream; or maybe the fungus is resistant to that active principle (I used lamisil for a few months and I think the fungus became resistant to it as the itching spread to more toes with continuous use). I only got relief with oral antifungals containing fluconazole.

I also only wear sandals (unless it is close to 0ºC and still triggers flares) and made of leather only, to keep the feet as dry as possible. What do you do when it rains? Doesn't the water promote fungal growth?

I read that too, that enclosed shoes promote fungal growth more than open shoes. But sweating a lot and having hot feet probably pushes the balance in the wrong direction for us!

Take care

blue said:

Hi Tarisus

I experienced absolutely no sweating for about 6 years, then I started to sweat and started to sweat excessively (I have a dysautonomia - a dysfunctional autonomic nervous system and sweating profusely or little is a sreymptom). Now I sweat profusely if I expend any energy that is more than gentle. At other times my skin, all over, is dry and looks it.

Not so long ago I developed a fungal infection of the feet. I have been using a spray that is supposed to be effective but I find that it looks like the infection has gone away only to have it return. (I tried a cream but the cream itself made my feet feel unbearably hot -- I had to wash it all off almost immediately. I'm going to the chemist to buy some more spray. I never wear any shoes unless I am going out (which I rarely do, and the outings aren't for long), and it's then I put on a pair of very open roman/peasant style sandals -- no synthetics, all leather. I've been living mostly barefoot for 13 years now and I can only think it might be the heat that makes it so difficult to get rid of a fungal infection. I have to wonder if having hot feet was the reason for getting it in the first place because, as far as I understand, it is rare for people who are barefoot all the time to get fungal infections of the feet.

blue

15

Hi Alina!

I believe you! It's amazing what they can come up with despite of the evidence in front of their eyes (and ears). I've noticed this no-touch policy with orthopedists a lot (I sprain a lot because of the hyperlaxity); only physiotherapists actually have a hands-on approach and actually help.

I do consider myself to be very lucky in getting properly diagnosed after only a few months. I understand that the doctors not knowing what's going on with us can be unsettling and hard to admit regarding their pride; I don't know what it is like there but here doctors are viewed as some kind of supernatural entity who knows all and cures all, a view which can harm them and indirectly, us. If only they said "I don't know" (maybe "let me do some reading and I'll get back to you"?) and didn't offend us, it would be so much more bearable.

So far I've collected stories about 18 doctors who were ignorant and/or evil that I can remember. Hope my list doesn't grow :P

I thought that at the Mayo Clinic you'd have a bit more luck, that's shocking :/ But it worked eventually! I'm really glad that you went home with a proper diagnosis, despite being what it is. Knowing what is going on is completely different!

I get the being told we're crazy by doctors (and other people) being infuriating and frustrating!

Don't apologise, thank you so much for sharing :)

16

Dear Anne, that is posted somewhere as we have in my library. Rather than search may be quicker for me to upload again for you( see link). Hope you had an enjoyable and 'comfortable' Christmas. Big hug x

Anne said:

Tarsius, this is fascinating information, and thank you for posting it.when I go to the NIH link you provided, all I can access is an abstract. How do I reach the fascinating information about the three subtypes of erythromelalgia?

I have had EM for 25 years. It has been very slow to progress, so I didn't have to start limiting activities until about 10 years ago. Now, like Alina, my life is quite restricted. I am fortunate to be able to work at my computer a couple of hours a day. When I do venture out, I have to wear flip-flops or loose sandals, no matter what the weather/temperature.

Any time I stand in one place for a few minutes without moving, a flare begins. So I can induce a flare at the doctor's office by just standing up and waiting. I also have flares every afternoon, usually starting around 4:00.

I have not had any testing. I don't know where someone would find a doctor who would even know about these tests except at Mayo Clinic, Rochester.

I have never had any sweating abnormalities one way or the other. I have a pretty complete profile on my page, so if you want to check if there are any similarities, feel free to do so :-)

I hope you have success finding treatment and can adapt to have a full life!
17

Ola Tarsius,

Apologies for belated reply. This is a quick one to catch up with you and I ask lots of questions- sorry lol!.

Cohen is correct in that 3 known types of EM exist. Aside familial genetic ,EM may manifest randomly for unknown reasons (sporadically) or the condition may occur secondary to various underlying disorders, particularly myeloproliferative disorders, neuropathies, or certain autoimmune and connective tissue diseases. Evidence also suggests that erythromelalgia may also occur as an adverse effect secondary to certain drugs (e.g., bromocriptine, nifedipine, nicardipine) and specific antibiotics. It is interesting that you had glandular fever for 2 years which gave your immune system a pounding. Aside hypermobility, have you any other conditions?. How soon did your EM start after G fever? Were you given any antibiotics/other medications?

1. Flipflops rain, snow or shine :)

2. Regarding EM, no known diagnostic test out there. EM diagnosis is based on clinical presentation and patient history. Tests that may be performed such as small nerve (SFN), thermoregulating(sweat tests), electrophysiological are exclusion tests for differential diagnoses such as CRPS (Chronic regional pain syndrome)- many conditions mimic EM such as CRPS, RDS, burning feet syndrome, diabetic neuropathy. etc. SFN has been found in approx 40% of EM sufferers and considered strongly implicated in EM. However, many EM'ers do not have SFN so this is not an EM diagnostic . Blood/saliva tests(DNA sequencing ) will only pinpoint whether you have the primary genetic familial form of EM SCN9A (Nav 1.7 mutations). Only around 16% of EM'ers have this type. Interestingly , genetic mutations have been found in those classed as primary sporadic by Xenon's genetic saliva test trial earlier this year. As yet no one sure what these variants mean until dissemination next year.

3.Treatments/minimisation tactics to try better manage EM are considered to be exactly same regardless of type. Only difference is that Aspirin has been reported to 'work' better in primary familial EM. Also, with secondary EM they can treat the underlying disorder( e.g. lupus), or in case of medication induced, taper the medication. People often forget that diet may also trigger- especially histamine laden foods or additives. http://forum.livingwitherythromelalgia.org/forum/topics/antihistamine-therapy-in-the-management-of-em-revisiting-the-hypo

4. Sympathise tremendously with the' all in my head' feeling. Alina and I were discussing how EM'ers often considered 'mentally ill' because of our anxiety, frustration and sometimes hysteria. All this because EM is so misunderstood . I could see the flares, feel the flares but you actually start to question your sanity in those early days. Many of us get sent to a psychiatrist - thats invisible illness for you! Thats why this community is so important. Imperative we raise awareness, educate and offer support.

5. Sweating. It is common that EM'ers develop an inability to sweat or intermittent sweat patterns. Sweating is exclusively controlled by the autonomic nervous system. There are small fibers in all the nervous systems, but only autonomic nervous system small fibers run to skin blood vessels and skin sweat glands. Do you have problems with digestion, salivation,or heart rate blood pressure?

5. You mention hypermobility? Interesting again as connective disorders can underpin EM . I have developed hypermobility in my fingers and toes due to EM ,and latterly fibromyalgia.

Can i just check you have bilateral not unilateral flares. Can you induce a flare?

Burnt foot syndrome. Ok there is a condition called 'burning feet syndrome ,which mimics EM.

Athletes foot is frequently misdiagnosed as not being EM because of the itch/fungi. Have you considered your diet here? Cut out all sugar/carbs. Reported that organic coconut oil used topically with cotton socks/flipflops.

European see a UK Dr . Answer is Yes :-) Mi casa es tua casa.

Minimisation tips - What tactics are you using to 'cool' down or ease 'itch'?

It is all trial/error but hopefully we can point you in the right direction to speed things up. EM is a very individualised syndrome and not a one size fits all. Good news is that you were diagnosed very quickly and there are many medications, compound creams to try. Further good news is that many of us learn to better manage EM via a polypharmacy approach, lifestyle changes, minimisation tactics and psychosocial support.

What treatment have you tried or are you on? Have you been put on firstline treatments yet like gabapentin, amytripiline? Are you taking any supplements?

Have uploaded some articles for you to get going

Ate logo

Abraco

x

18

Olá Mads!

Thank you for your reply and questions (I welcome them :) )!

I think I was prescribed an inadequate medication (propranolol) for my subtype (really cold feet then flares, I presume vasoconstrictive+reactive hyperemia), which Dr. Cohen states would cause harm in the third article you attached.

I got the impression that after trying some therapies people get side effects that don't go away, is this correct?

Thank you! I ask about seeing UK doctors because someone in an older post said that EU citizens could see them for free (NHS) and I was under the impression before that it should only be for emergencies and not "premeditated" appointments.

Glandular Fever (GF): I think my immune system may have taken a pounding, yes. I keep citing the info on this link (http://www.cdc.gov/epstein-barr/hcp.html - mentions several types of immunity reduction, which I associate to my recurrent fungal infections) to doctors and they just dismiss me as an overly complicated/worried person. I'm just trying to find mechanisms to explain what is happening to me, as they provide none.

The EM symptoms started 5 months after I finally felt recovered from the GF, and 2 years and 4 months after the GF started. I've seen articles stating that GF can be one of the triggers for EM.

The angiologist insisted that the hypermobility could be the underlying cause for EM as connective tissue disorders have been known to trigger EM. I've always been hypermobile so maybe that in conjunction with the GF trigged the EM.

Medication and conditions (minor stuff compared to what I've seen here): for athlete's foot (AF) I used several topic antifungals (sertoconazole, bifonazole, terbinafine, tolnaftate) in cream and powder form and oral terbinafine since March. No antibiotics lately. Finished a 10 year course of lamotrigine in January and am on the pill (had polycystic ovary, ok now but need the pill to menstruate). Struggle to get rid of fungal infections in feet; sweat a lot from soles and palms; have small cuts between toes that won't go away and that increase with moisture. Since August I've had scalp itching (with folliculitis at the time) that has become less offensive but still disruptive. Hair now gets greasy much quicker and produce more earwax. Did a tilt test and was told I suffered from neurocardiogenic syncope. Hyperlaxity. Myopia and astigmatism. Dust mite allergy and SPF allergy (did tests). Two lipomas.

1. Would do the same if it weren't for the fungus! Don't know what to do when it rains and is warm when needing to go out.

2. The neurologist said I did not have neuropathy (electromyography), glycated hemoglobin was ok so shouldn't be diabetes; was confused by the burning feet syndrome article, they mention EM as a possible cause for it but the symptoms can be very similar.

3. If aspirin has had any effect it was that of creating unilateral flares. Not sure that counts as an improvement but, at least, when it happens, I can use the ice-cold foot to soothe the flaring one!

There are not many foods left (histamine stuff)! I haven't really noticed food triggers. I've had chocolate with and without flaring, wine with and without flaring, for instance, though it is difficult to be sure. I only took anti-histamines when I got the fungal-induced itching and usually took 1-2h to act. I still had flares whilst on it if I'm not mistaken.

4. Yes, I believe that if we become mentally ill, it is in part due to their disrespect for us. Great forum, well done :)

5. I have not noticed problems with any of those, just really the sweating, which I've always had. In that article not a single patient had hyperhidrosis! I found a couple of other EM sufferers with it in this forum, which is not a lot, no :P

6. Curious that you developed hypermobility in fingers and toes after having EM (not the fibromyalgia though). I wonder if mine will increase.

I have both bilateral and unilateral flares, initially just bilateral ones; unilateral ones started about 5 months after the first flares and 5 days after aspirin intake. I avoid flaring as much as I can but I managed to induce one (unwillingly) by trying on new enclosed shoes I had ordered for just a few minutes; it was late though, not sure it would happen during the day for testing or so.

I've tried a few essential oils for AF (eg, tea tree), not coconut yet. Do you mean that EM can cause itchiness and can be mistaken for AF? I considered that but really think it was AF since I had it for a week, just kept spreading to other toes and disappeared upon taking fluconazole orally.

Cutting down sugar is tricky but I'll try, it's good for other things anyway!

I can't wear socks for long, tried once recently and flared after 15 min (put them on because the feet were ice-cold during the day).

Polypharmacy seems very interesting but highly complicated to carry out!

I haven't tried anything but aspirin. I was taking vitamin supplements but stopped. On Dr. Cohen's list of medications I read that gabapentin could reduce pain but had no effect on heat and redness, which compose my flares so probably not good for me. I haven't tried amitriptyline, maybe it will work.

To cope with flares: I cannot use water ( because of the fungi) except when I quickly wash my feet at night; can't put them in plastic bags then in cold water because my feet cannot breathe and immediately start sweating profusely (and there come the cuts and fungi). I use fans (regular ones at home and a hand-held one when outside), will start using cold packs and I try to elevate feet. Walking, standing, enclosed shoes and hot environments trigger flares.

Thank you again for the support and all the info!

Abraço e beijos

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I also have dry callous foot skin, and occasionally bumps which I associate with a return of fungal infection. I do get rid of fungal infections but they come back for me a couple times a year. Its like a different sort of flare that keeps its own schedule. I have been fighting this for years and different things worked at different times. The best weapons so far have been doc prescribed ketoconazole and mitoconazole creams, taking time to thoroughly dry my feet after bathing, using OTC dry powder athletes foot spray before shoes go on. I find that moisturizers do not help my feet much because they are so dry nothing seems to penetrate. A massage therapist suggested for severe dry skin to add a Tablespoon of emu oil (mostly available at healthfood stores or online) to bath water. Being desperate and also sensitive to allot of lotions, I tried it. I now take baths occasionally just to have this relief for my skin. It does make my skin softer, less irritated overall, and seems to help the athletes foot problem as well-- maybe it makes the medications penetrate better as well? Unsure --but that is my current routine.

I get a chills type of feeling when I am having bad flares-- a similar feeling to when you are cold but have a fever. Also if your feet are burning at night it could be the EM and not athletes foot-- if your sleep is being interrupted you should contact your diagnosing doc and see if you can try some meds or get your meds adjusted.
Tarsius said:

Hello K-ren,

Thank you for you comment!

Can you tell me how you got rid of the fungal infections? I'm extremely careful and used several antifungals (and a UVC device on the shoes) but still get them.

I see that the tests that can differentiate between the 3 types of EM and would allow getting a more tupe-specific medication can be problematic since it is hard to induce flaring at will for so many people (me included).

I've also been having trouble sleeping lately, waking up frequently with flares. I'm thought it might be due to using a duvet but I was almost shivering last night and still had them. And also have dry eyes and feet skin (callous in the sole). For me also, tiny bumps also can cause excruciating pain but not always (maybe more so when it happens during a flare).

Thank you for your detailed description, I'll complete mine a bit more!

All the best to you!

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Hi Veerla,

Hope you're feeling better! Thank you for your reply.
Yeah, I think most EM sufferers do not sweat excessively, more the opposite. I am so sorry for the incredibly strong pain you have and for the not so much luck in the studies!
I cannot wear any socks, or at least not for more than 15 minutes. Enclosed shoes only at 0ºC and for no more than half an hour. Started buying one size too big too.
They should have given you those 2 years retroactively! I've been told that social benefits in Portugal are a tremendous joke.
The bit of not consciously registering a 25ºC difference is impressive, did the doctor(s) provide any explanation for that?
Sweating should help us with temperature regulation and yet... I sleep with a fan at my feet (uncovered) and a hot water bottle next to my stomach (that I try not to touch much but I feel so cold - except for my feet).
I also dress in layers now but some places are still off-limits. I know I look silly in sandals+feather coat but at this point I don't care anymore.
In my experience, even the doctors that know about EM don't seem very knowledgeable about types of medication according to type of EM. Thank you!
Take care


Veerla said:

Hi Tarsius,

Sorry for my late reply, haven't been well the last couple of weeks. Especially with all the social obligations of Christmas and new years eve. Anyways, i do sweat excessively. I always sweated more frequent and more instant compared to others, which i thought was a 'family-thing'. About 6,5 years ago my Em started, and it took one year and one switch of Dr/ Hospital to get diagnosed with familial genetic Em. Besides that i have small fibre neuropathy. In The Netherlands the experts talk about excessive sweating as if it is something that comes along with it, but reading the stories of others I think it's not that common. But, since i joined this forum i discovered that I am not similar on other areas as well. I do get a burning sensation non-stop, but the pain is more severe. It is deep sharp pain in feet, legs arms and hands (sporadically in head, buttock and back), it almost feels like a knife is stuck deeply in my body.

Wearing shoes and socks irritates the Em more, but i wear my socks inside out because of the lining. I buy my shoes one or two sizes too big, so that i have more space and it also enables me to put in gel pads, sometimes even 3 on top of each other (because the bottom of my feet hurt the most, almost as if they are an open wound). My Em progressed extremely rapid, and after 2 years i wasn't able to work at all anymore. Took me another 2 years to get approved for social disability funds (for the rest of my life, so that really helped getting rid of a lot of worries)

After many many many trail and errors of medications i am now using opiates and lyrica, which help just a tiny bit but it's better than nothing right? I also got a neuro-transmitter implanted in my back, but that hasn't helped (others in the study it did help, i was the only one who didn't benefit from it). I participated in several other drug studies which till so far haven't helped, but just the participation is consider as doing my part for MAYBE someday finding something other than opiates that might help (me and others of course). For me heat and cold make it worse, exercise and stress as well. Once i am too hot or too cold it takes me hours to have a normal temperature again. It seems that i have a lot of trouble with temperature and controlling it. Some tests have shown that i can't consciously register a temperature difference of almost 25 degrees (Celsius) yet my body does react to it so that results in thinking my feet/body are warm although they are extremely cold (and vice versa). So that means, many layers, a lot of deodorant and not switching and entering different stores/ locations because that just make it worse. I do wonder whether there are others that also have so much trouble with sweating and temperature?

Hope you will find some sort of help/medication that will help.And thanks for sharing such detailed research!

Best, Veerla