Please Read! Looking for answers

[seedubullyou]

Hi there! I've been searching for answers, and going to tons of different doctors for what has been going on with me for the past month and today I learned of a friend of a friend who has EM. I've been researching it a lot today, and it sounds almost exactly like what's going on with me.

So about a month ago, out of nowhere it seemed, my feet started itching horribly at night. It started on my toes, on my heels, and in my arches. I noticed quickly that they seemed to flare up when they were hot and the only thing that relieved the itch was to soak them in very cold water. The "rash" (I've been calling it) quickly spread over most of the tops of my feet, and completely covering the bottoms. It also has gone up my ankles and backs of my legs.

Over the next few weeks, I was waking up 4 or 5 (or more sometimes) times a night to soak them in cold water because my feet were uncontrollably itchy and red hot. In the mornings especially they'll feel extremely tender and swollen and it'll hurt to walk. During the day I've been having to either soak them, keep them cold, or keep them elevated which will maintain the discomfort for the most part, but as soon as I stop doing any of those things, they'll get red hot and uncomfortable.

The last few days I've noticed that I haven't been nearly as itchy as before (so I've been sleeping better, hallelujah!), but they are still getting just as red hot and swollen.

I've seen my family doctor a few times, a dermatologist, and an allergist. The dermatologist thought it was contact dermatitis from shoes, but I haven't been wearing shoes for the past few weeks (except maybe once a week, and they're shoes I wasn't wearing when this started) and it hasn't helped. I've also been prescribed tons of different antihistimines, topical corticosteroids, and prednisone. None of which seem to make any sort of a difference. I saw an allergist who was pretty puzzled by what's going on, but didn't rule out that it could still be an allergic reaction.

I'm wondering how you/your doctor was able to finally diagnose you correctly? At this point, I don't really think it's an allergic reaction because any allergy medications I take don't help. What type of specialist would be most familiar with EM so that I can consult them about it? I was not too fond of the dermatologist I saw, but I could maybe find a better one if that is who would see this more often.

I'm also wondering if any of you ever had this be accompanied by a rash on first onset? Mine started to appear as a rash, but the rash and the itch is slowly getting better, but the hot and the burning isn't.

Just to summarize my main symptoms:
-Itchy

-Rash

-Very red and hot

-Swollen

-Tingly (esp in toes)

-Painful to walk (when swollen and hot, usually in morning)

I also had this appear on my hand for about a week, but that went away.

Any thoughts? Does this sound like EM? Any comments would be greatly appreciated!
I've attached pictures for reference.

11-IMG_8952.JPG (123 KB) 12-IMG_9032.JPG (93.9 KB) 13-IMG_8861.JPG (107 KB)

[nwgirl]

Hi seedubullyou - I'm so sorry for what you've been going through. I'm sure that many of us on the forum can completely relate to your story. Finding a doctor who knows what's going on can be the trickiest part. I self-diagnosed and then had it eventually confirmed by a neurologist based on my symptoms. Prior to that, I saw several physicians who were completely unfamiliar with EM. Your symptoms and photos are in line with what you'd expect with EM. I suggest calling various physicians and inquiring if they have any experience treating EM. Keep calling until you find someone who actually knows something about it. It may take some patience and perseverance. You could also inquire on this forum if there is anyone who has found a doctor in your area. Good luck and hang in there.

Best wishes

[Liz_Sheppard]

I have not heard of a rash in association with EM, with the exception of chilblains. I only get chilblains when my feet have been wet and cold. Usually from too much foot soaking. They do itch, though, and they look like a rash.

[seedubullyou]

Thanks, that's really interesting! I'm not sure exactly what came first, but I started soaking my feet in cold water because that was the only thing that relieved the heat and the itch. How do you maintain your EM without soaking your feet too much or keeping them too cold (to prevent chilblains)? Or is chilblains just the price you pay for maintaining your EM? There are nights where I can't sleep at all unless I am able to keep my feet ice cold.

Liz Sheppard said:

I have not heard of a rash in association with EM, with the exception of chilblains. I only get chilblains when my feet have been wet and cold. Usually from too much foot soaking. They do itch, though, and they look like a rash.

[seedubullyou]

Thanks nwgirl. I tried calling around, and had no luck finding anyone who was familiar with it. I did find a neurologist who will be doing all sorts of nerve and blood tests on me, so hopefully they'll find something. Do you know what specifically led to your diagnosis with your neurologist? Like was there a specific test or anything that pretty much confirmed it? The neurologist I saw had never heard of EM, but suspects it could also be some sort of polyneuropathy. So I guess that's what I'll be tested for, I'm not sure.

nwgirl said:

Hi seedubullyou - I'm so sorry for what you've been going through. I'm sure that many of us on the forum can completely relate to your story. Finding a doctor who knows what's going on can be the trickiest part. I self-diagnosed and then had it eventually confirmed by a neurologist based on my symptoms. Prior to that, I saw several physicians who were completely unfamiliar with EM. Your symptoms and photos are in line with what you'd expect with EM. I suggest calling various physicians and inquiring if they have any experience treating EM. Keep calling until you find someone who actually knows something about it. It may take some patience and perseverance. You could also inquire on this forum if there is anyone who has found a doctor in your area. Good luck and hang in there.

Best wishes

[nwgirl]

I don't believe there are any specific tests which confirm EM conclusively. There are nerve studies that can be done to test for various neuropathies. Doctors will also try to figure out if the symptoms are secondary to some other health problem. In my case, I told the neurologist that I believed I had EM, he did some research since he didn't know much about it, and then ended up agreeing with me based on the fact that I have the hallmark symptoms. My primary doctor had already ruled out any other medical problems. For me EM appeared following a foot injury and has stuck around ever since.

[watchman]

Sometimes a dermatologist or neurologist can confirm whether you have burning foot syndrome or not. My mom had a mild version from a drug reaction in the mid 1990s which resolved when she got off that drug and then another drug appeared to have caused the bad flaring EM that never resolved since 2002.

One could in theory have a fungal infection and perhaps if that damaged the nerves somehow it could cause burning foot syndrome. One can also have a fungal infection and just have hot feet from it and perhaps the hot foot issues would resolve when the fungul infection was resolved. My mom took antifungal medications, and had fungus as well during the early part of her disease.

One can get EM flares or EM from an injury. If you get it from an injury that also moves symptoms around your body and doesn't heal but linger and gives more pain from small injuries that could be a sign of CRPS. CRPS can cause burning foot symptoms. But often the injury may stay on one side for quite some time or just stay on one side with CRPS. EM seems to stay confined more in the hands and feet. Small fiber and large fiber neuropathy can cause it. Mushroom poisoning can cause it so obviously a fungus (a mushroom) can damage nerve tissue and cause it.

Diabetics may get it as a part of their diabetic neuropathy. Someone who has small blood vessels filling up with sugar could have the capilaries stop feeding enough blood to their nerve endings and the small fiber nerves in their hands and feet could get numb and experience cold numb feet or hands and feet and also flares at times as well. Some get electrical shock like feelings as well or feel that their toenails are being pulled off. Infections can happen from the water you are dipping your feet in to cool them. Putting a small amount of hydrogen peroxide in the cooling water helped my mom a bit with some of the skin issues she was experiencing.

There are of course several things that can cause ones feet to burn and flare. If you have some kind of nerve damage or damage to your nervious system, a neuropathic pain can happen becuase something is interfering with your nerves, often away from the site of the pain. A pinched nerve can cause EM flares. Something growing on the nerve and putting pressure on the nerve can cause it. In the case of CRPS glial cell over activity can cause flares and issues of supersensitivity to pain, leading to RSD in some advanced stages of that. There may be CRPS drug techniques that could work on EM patients, if their nerve condition is tied to CRPS.

There are different stages that one may have with the disease. Some will have itching, burning and shooting pains, like jolts when they have the disease start. Some (thankfully) have minor versions of the disease and can deal with an occasional flare, and have some normal parts of life between flare episodes. Others develop flares and pain that seems to be unending and flares are the bad parts of a bad day. They may have to almost constantly chill their feet. Drug reactions can cause EM flares. Sugar deposits on the nerves can cause flares for diabetics. Tarsal tunnel syndrome can cause flares, based on an entrapped nerve. With EM diet with salt and sweets may cause flares to happen more often or cause a worse flare.

Heat will trigger the flare, and cold will help get rid of the flare. The heating of your foot causing flares is a basic trait which is used to determine that it's EM. Doctors and specialists may end up working for quite some time to find a solution to your EM if it's secondary to a disease that can be treated. If it's some kind of rare damage to your nerves or nervious system they will try to find a combination of drugs and methods to help you cope with the disease, which may not have a cure, depending on the version you might have. Many things are unknown and there is a 100 types of neuropathy for example that are out there. You could have a couple versions of neuropathy, and that could be enough to cause EM. It's difficult to say as every case can seem to be different and respond differently to treatments.

In the case of my mom's EM, she can only have some creams on her feet, those that won't hold in heat. She has used water baths in shallow plastic containers to chill her feet. She has used cold water spray under fans with cold air blowing over her feet. She has used ice packs, the artificial pea packs. She has lived in a chilled room under fans for waking and sleeping hours for over a decade. She has a bad case however and many are a bit more lucky to have a less damaging version of the disease and may get some relief and normalcy between flares.

I've only covered some of the things that can cause EM. There is more and a pretty good list on the Wikepedia site as well about EM.

[Mexicanrose]

I’m seeing a new Neurologist. The original Neuro blamed severe narrowing at L5-S1 as causing my burning feet (also pins/needles). The new Neuro has ordered new MRIs which will cover the entire lumbar spine, cervical & brain.
In his opinion, he doesn’t think the narrowing at L5-S1 is causing the burning, red feet. I also have a moderate neural foraminal narrowing in the neck, but he doesnt’ think that could cause much problem, because in his opinion “moderate” isn’t a real concern. He suggested to me that I take 81mg aspirin daily to see if that helps, because the vessels could be opening/closing.
He did not mention EM to me, but in his report to my GP, he said the 81mg of aspirin for “possible management of EM”. He never mentioned EM to me, but I can tell you for sure, I have no intention of taking aspirin daily on a “possible”. The EMG test was normal as was NCD, but the EMG does not test for small fibre neuropathy. Never has a skin or nerve biopsy been performed either. I do not have any past injuries to my feet or legs. Personally, I believe there is something aggravating the nerves. Just what that cuplrit is, remains to be seeen. I do not have back pain, bowels & bladder functions are normal. I did tell him that years ago I had suspected Reynaud’s Phenomena, but it was never clinically proven. Yes, my feet/hands become very cold very quickly during winter. In his report he also said that I denied blanching of the feet/hands when they get cold. I honestly don’t recall him asking me that question, but I can accurately say they DO get white, until warmed again. I don’t have any specific triggers at all. Also, the Neuro is referring me to a Rheumatologist/Internist to see if she can ascertain if there is any autoimuune issues to be addressed. All my bloodwork is fine, at least what the Neuro ordered to be tested. Perhaps the Rheumy will test further, I can’t say for sure.Yes, I do have several issues in the spine…multilevel degenerative spine disease without root or spinal cord abnormalities. The original Neuro dismissed my case, using the result of the lumbar & cervical spine results as the cause. She did not feel MRI of the brain was necessary. I feel she was downright LAZY with my treatment.
I can fully understand why some people are suffering terribly with EM. I do wonder now if this new Neuro is familiar with EM because of what he mentioned in his notes to my GP.
By the way, my feet do not swell at all & just the bottoms of my feet turn deep red in colour. Yes, they become very hot.
I shall wait to see the results of the new MRI’s & what they reveal if anything.
All the very best to people here on the forum.

[Artartartartanthony]

Hi Mexican rose

How long have you been suffering from EM pain?

I also have tried the aspirin too…recommended by many of the doctors I have seen. …didn’t do nothing for me
Which I think the doctors just Google EM and see the first page that pops up …and read taking aspirin as a recommendation

I also was given at my stay at Stanford , Tylenol
which I was sure wouldn’t do anything…
somehow for me it brought down the heat in my foot
…I was taking 1,000mg morning, 1,000mg noon, 1,000mg night …
I have now tapered the Tylenol because I think it’s too much to take for long periods of time
A nurse told me that 4,000mg is the recommended max a person should take a day
But that the recommended max dosage use to be up to 8,000mg a day

[Mexicanrose]

Hello…Symptoms started at the end of January/2014… At first, it felt like a thread was being drawn across the tops of both ankles. After a few days, that stopped. Then out of the blue, while relaxing & watching tv, I could feel my feet burning.When I saw them a pinkish colour, I couldn’t figure it out. Within minutes, it stopped. Things just got progressively worse from there on. The Dr. I had at the time was a lazy person, insisting we try this/that. Then decided to take me off Amlodipine because he felt there was co-incidence (it started when I started back on the Amlodipine) That was short lived 'til finally I was strong about seeing a Neuro. You read the story. I felt she was very lazy…didn’t know what was going on, likely because all bloodwork came back absolutely stellar, so I would suspect her scapegoat was to blame things on the MRI results. As you read in my post, the new Neuro, in his opinion doesn’t think the moderate-severe narrowing at L5-S1 is causing the problem. I suspect he thinks the L5 doesn’t affect the feet/legs. Also, I don’t have back pain. The bottoms of my feet can turn beet red to dark red. There is no pain., just extreme heat. The tops of my feet don’t turn red either, & there is no swelling. The stinging sensation is in my shins, but is progressing upwards. That does not turn red or swell either, but I do experience pins/needles the odd time. When I was taking Gabapentin prescribed by the original Neuro, the Gabapentin did nothing for the burning…nothing at all. While the pins/needles was tolerable, I found that taking the Gabapentin was useless. Believe it or not, what does help with the burning sensationsis SOLARCAINE! Believe it or not…yes you read it correctly…SOLARCAINE. I only use it when I can’t stand the burning any longer. Quite frankly, I think there’s more going on in my body that what meets the eye. I have problems with muscles in my neck. They become quite sore & stiff, as does some of the muscles in my shoulders. My GP believes I have tension headache, for which I am receiving RMT treatment. You mentioned taking 3,000mg Tylenol per day.That’s a lot! Tylenol will help reduce fever, but it does not reduce inflammation. Aspirin on the other hand, does help reduce inflammation. Be careful about taking so much Tylenol.The extra-strength at 500mg each is ok but only up to a maximum of 8 tabs/daily. In my mind, while things such as Tylenol or Aspirin may help, once we stop the regime, we put ourselves at risk for rebound, & the Tylenol/Aspirin is just a band-aid.EM seems to be just a wild guess by the new Neuro. I am assuming that just from his report. He never mentioned the word “EM” when I had my consult. All he said was…“it could be that the blood vessels are opening & closing, so perhaps if we tried 81mg aspirin/day it may help”. 99% of the time I will do whatever a Dr. suggests I do, but I will NOT take anything on a ‘possibility’. CONFIRMATION of something is what I look for. He does not know my history. To be quite honest, I wouldn’t be at all surprised to learn that there are changes in the spine. Something may be going on in the brain also because I do experience the odd time very mild pins/needles in the facial area. Also, I can experience…again the odd time…the feeling of a string being drawn across my tongue. THAT I can tell you is a little nerve-wracking. Imagine what goes through my mind. Part of the Central Nervous System is in the brain…which is why a lot of Drs not only order MRI’s on the lumbar/cervical spine, but the brain as well. The lazy Neuro did not order an MRI on the brain because she felt it would have been ‘overkill’ considering what was discovered in the lumbar/cervicalregions. This new Neuro has referred me to a Rheumatologist/Internist to see if there is anything autoimmune going on. I think it a good idea. Anything I read on the internet or when speaking to people say that Rheumatologists are quite the detectives when trying to track down what is ailing a patient. In fact, they have been described as “specialists on steroids”. lol lol It certainly won’t hurt for me to see this person. One never knows, she could find something that nobody thought about. I hate it when someone says “you know, as we get older, etc.etc.”. That makes my blood boil.I don’t care about that. While I may be 69 yrs of age, I have every right to feel well just as much as someone half my age. Sorry to be so lengthy., but I felt you needed to know the complete story.If you have any more questions, etc. please feel free to email.Thanks…Good luck!!Mexicanrose

[Mexicanrose]

Hi watchman…
I agree with what you say regarding the possibility of pinched nerves, also if there is some kind of nerve damage or damage to the nervous system, that too can cause burning. I have moderate-severe narrowing at L5-S1 with no back pain. The first Neuro I saw blamed my problem on that, but my new Neuro disagrees with it because he believes the L5 has no relation to the foot.
The bottoms of my feet can become quite red. The toes do not turn red but they can have a very hot sensation to them. I don’t have these ‘heat’ problems on a daily basis. I do experience the odd pins/needles sensations in my shins, & also some very mild stinging. The feet & legs do not swell, & I do not have excruciating pain. Oddly enough, a few months back when I was in Mexico on holiday, this one particular morning when I went to the dolphin tank, I could feel my toes burning.They were not red or swollen. I got into the water. The water was cool, not cold…it was the kind of cool because of early morning. The strange feeling was that the cool water did not relieve the burning in my toes. I could still feel my toes burning. Most of the time when my feet turn very red, they are not hot to the touch, even if they are burning. Sometimes they are very warm, but mostly they are not.
I’ve been dealing with my situation since late January/2014. My current Neuro has ordered new MRI’s of the lumbar/cervical spines & the brain. The former Neuro did not order MRI of the brain. She was lazy, & because all my bloodwork came back stellar, because of what was described on the MRI results wound up being blamed as the culprit. The pins/needles have always been very tolerable. Gabapentin did nothing for the burning sensations.
The new Neuro has made an appt for me with a Rheumatologist to rule out any autoimmune disease. He also said that it could be narrowing & opening of blood vessels, then suggested I take 81mg daily just to ‘see’ if that worked. In his consult note to my GP he did state this, but also said that the aspirin was suggested for “possible EM” He did NOT say that to me!!!
Although I usually follow a doctor’s instructions, I will NOT take aspirin on a ‘possible’. He does not know my history, & to start taking aspirin on a daily basis for a ‘possible’ doesn’t sit well with me, so I will not do it. I don’t think it fair that he state “possible” when he has not made a diagnosis. Please correct me if I’m on the wrong path with this attitude.
I have spent thousands of $ trying to find out what’s going on with me. I also experience the odd mild feeling of pins/needles in the facial area & on my scalp. Truly, I feel there is something going on with the nervous system. IF the MRI results show further deterioration of the discs, I don’t know what I will do about that. All education says not to let an orthopedic surgeon anywhere near the spine unless it’s the only answer.
I’d appreciate anything anyone might offer. Good luck to you all!!!

[Artartartartanthony]

Hi Mexican rose

Haha …!
your right the doctors make any excuses if there’s no answers

I also was told I’m 40 years old and I hit my plateau
And it’s basically all downhill now

They also were trying to say it was from drinking alcohol , but I never drank heavy at alll…

.
.

So don’t believe them about the age thing at all

[Artartartartanthony]

Hi Mexican rose

Also I must say …I just counted all the doctors I’ve seen

I’ve seen “59” total doctors/specialist
No lie
through this whole EM ordeal

Plus

3 chiropractors

2 foot doctors

1 Dentist to check for bacterial/mercury or anything ! For god sakes…lol

1 specialist nutritionist

1 acupuncture (EM patients should never go to a acupuncturist btw, you’re playing with fire with open wounds)
.

.
.
.

I guess my point is if you’re having a tough time getting answers or doctors being lazy …

Great advice I got is the best thing to do is show up with a Social Worker to the appointment
which is perfectly fine and you have a right to
And watch you’ll see how fast you’ll get answers and to the point!!

No stretching out appointments months to just get answers
Just clear answers fast
Which we need because we’re in so much pain

[Artartartartanthony]

It’s not my personality to fight at all. …I don’t even send back food at all at restaurants…I’m embarrassed to

But you really have to fight & fight for answers
Especially with EM

Which there’s very few answers For EM

Hopefully that changes soon

[Mexicanrose]

Hello again…My GP whom I dearly love as a Dr., once started to mention age when it comes to medical things.Before he could complete what he was saying, I said…“I’m going to stop you right there, Dr. I don’t want to hear about how things go when we get older. Age has nothing to do with it. If I’m not feeling well for whatever reason, I need treatment or deserve treatment just like anyone else. I don’t want to hear anything about age”. I did it nicer of course, & he nevermentioned age again. If doctors don’t know what the affliction is, why not just say so rather than send the patient here/there, or pump drugs into them. There’s no shame in saying, “I don’t know”.I still think that if that lazy 1st Neuro did a more thorough investigation or referred me to a Rheumy or whatever, I very likely would be ahead of the game by now, but no…I’m waiting to have MRI (August 13), then see the Neuro (Oct.5).It’s going to be a longggg Summer.I do see the Rheumatologist Aug. 30 though, & God knows what she’ll do if anything. Likely order blood tests, I hope. I know for sure the Neuro I have now did not ask for test on ANA/EnA, or SLE etc.etc., but the Rheumy likely will do that. Keep up the faith.Mexicanrose