I have all the symptoms but an extra one as well

Hi everyone! I am new to this page and undiagnosed. Hate to be another post being like do I have it? But I have no idea! About 2 years ago when it started to get warm here I developed these patches on my fingers, palms and feet. They were these flare ups of itching and burning that lasted about half hour. And after each flare up I would have a purple reddish mark in the place where they were for a couple days. Compared to other examples of erythromelalgia I DIDNT have any wide spread of patches except for when my ankles would get quite swollen.
It took me a long time to find erythromelalgia because I had a significant symptom which I haven’t seen anywhere else? Along with the itching and burning I got these weird white patches. As soon as I say this people tend to say it’s reynauds but I really think it isn’t that. These white patches aren’t big. They’re these squiggles and rings that appear whenever I get a flare up. I’ll attach an image but they would pulsate and disappear along with the pain. Very odd but I have seen no one with this. Not even on Reddit. I haven’t had a flare up in a long time but when it’s warm I get them on the bottom of my feet and toes. Has anyone else experienced this with erythromelalgia or am I completely on the wrong track?? Thank you! The image attached is an example of the white marks. This is one of the weird squiggles. I usually get them like this and also in a O shape or a C shape as well.

This is another photo, I could only add one to the post but hopefully people can see this as well ahah

This does not look like EM to me. What does the white area feel like? Does it have a “rope” like consistency to it? Does it move around during a flare? Do you do a lot of outdoor activities in nature? I was initially thinking it could be some tendonitis and chronic knots but you said it is on your feet as well so that kind of rules that out. If the white area does move around with flares, I would be concerned about a potential tissue roundworm infection. They can get it from anywhere and tend to become more problematic in warmer weather where vessels become more permeable. Other than that, have you seen a doctor for this?

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The white area doesn’t move around no! It doesn’t feel raised or anything either. It’s like when you press down on your skin and it goes white. It started as a warm itch that I can’t get rid of and the more I itch the more prominent the white mark shows. This doesn’t happen everytime during the flare ups but does most of the time. They just get whiter if I stretch out the area as well. And they’re actually most common on the bottom of my feet. It’s really weird but yeah I went once! I’m really awful with going to the doctors but when I went they kind of brushed it off as an allergic reaction. But I only showed them photos. They said they can’t do anything unless I come during a flare up because they won’t use photos as a proper reference. But like erythromelalgia the flare ups last less than a day so it’s impossible to go during one. I haven’t had one in a while but I actively search out on what was happening. I don’t go outside much but they do seem to act up more when I’m warm or I touch something too cold. I remember the first time it happened I touched a cold handle on a shed and my fingers were irritated for a hour and the next day had a purplish mark. Sorry for the long message haha just trying to get to the bottom of this I’ll attach an example of a flare up on my foot. With the redness around it and burning you can see why I thought it was erythromelalgia. Oh I forgot to add the pain it gave to my feet was unbearable. When the flare ups happened on them I couldn’t walk because as soon as I sat down after applying pressure they would feel like fire.

Outside of being tested otherwise, this doesn’t seem unusual to me. Plenty of photos on Facebook group indicate you can have white spots along with redness. The same as having only one or two fingers or toes flare up . It can happen.

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Is it a hive and itchy? Have you tried antihistamines? Also, does your heart rate go up with standing at all? It sounds like it dies not happen often, but trying zyrtec 10 mg daily for a while and see if it improves the itchiness?

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When the small capillaries under you skin are filled with blood you will have red skin from added blood flow. With a normal person one can press on the skin and a white blanched area will result which is just the blood being pushed out of the way. You can see that from pressing down on a normal healthy fingernail of say your thumb which may be pink as it’s filled with blood below the fingernail. When you press on it the blood flows out and it turns white and when you release the pressure the blood flow will return and it may be pink or reddish. That’s normal.

Raynaud’s can give a side effect of blotchy skin which is usually cold and white. No blood flow to areas of the skin and the skin can be cold. A person with that may also feel that the area is numb from what I’ve read, but I’m just am average caregiver.
My “uneducated guess” is maybe the capillaries are not fully filling up from the flare and causing the white areas to simply remain. . .difficult to figure.

The thing about EM which is pretty consistent although there could be other diseases maybe like 800 causes of pain and burning in the feet alone, from an old WEB MD or some similar lookup. . .sorry for the broken sentence. The thing about EM is - it’s always triggered by environmental warmth as far as I can tell and chilling the foot environmentally can resolve it. So if you take something warm and apply it just before you see the doctor you’re feet and hands will flare when he sees you. You can trigger it by environmental heat and cooling will help relieve the symptoms. That is a sign it’s EM.

So although a doctor may not force you to have flare you could create one yourself very easily by putting you’re feet or hands in warm water and then seeing the flare result. Many doctors will not do something to cause you to have a flare or trigger you’re flare for their viewing and diagnosis, but one test that someone had did something like that. I can’t recall the name of that test, it was a comprehensive test however with a bunch of things and I believe one of the patients here had it done and it was torture for them. There can be many triggers to EM and it can be frustrating, maybe depending on the person’s condition. I read up on a focus more on nerve related triggers because my mom is suffering from EM from damaged nerves. People who have EM from damaged nerves may have more than one kind of nerve damage and the different mix of damaged nerve conditions can cause mixed systems. Sometimes people seem to get it as a result of nerve pills that may cross the blood brain drug barrier so nerve medications for any problem with the mind well they are made to alter nerve chemistry so they are likely to cause other problems if you’re prone to get those. Foods, stress and exercise and merely having your body part like a foot down or working can cause increased blood flow. The blood flow can be increased or damaged by nerve damage anywhere along the limb affected or between the limb anywhere up to the brain. The damage can be somewhere else. Autoimmune disorders can sometimes trigger flares, Diabetics can get pain flares and they may go away at least the pain is reduced as the limb becomes numb from loss of nerves. The brain may make up for lost nerves and give phantom pain signals. Women can perhaps get EM like a HOT FLASH with the change of life perhaps triggering EM like flares or things that are like EM. Blood flow and regulation problems can give hot flares, vascular constriction and dialation issues can cause blood and flares. Some who get it have shocking feelings perhaps with initial nerve damage and attacks and may feel shocks or burning. One can even get EM as a side effect of mushroom poisoning and many other causes. Some have flares as a side effect of cancer or cancer drugs. You feet or hands may have blood rushed to them if a nerve is damaged and the brain is getting fewer signals because it thinks the nerve damage is a sign of injury and you’re body will send “blood” to cure the injury problem. Some get flares during the onset of rare disease like CRPS type 2 which was formerly called RSD which is believe it or not way worse than EM. And they may get it in that case with normal nerves but abnormal hyper-active GLIAL cells which are types of nerve cells that activate other nerve cells. Some get EM from drinking alcohol to much. I know of a girl who had EM symptoms and told me she found out it was related to cancer in her blood. I met another lady who had pain flares from the average neuropathy, but also had normal neuropathy numbness and other pain, not just EM flares. You may develop EM and it may be mild and get worse. Sometimes drugs can make it worse. Some drugs that may improve blood flow may make it worse. My mom has EM. My sister had some kind of EM flare like situation as well and she ended up taking heart medication that helped her. But she possibly has burning ear syndrome and there are only something like 32 confirmed cases of that in the world. My mom gets flares from many things. Activity and heat of course. Salt, sugar, sweet foods high temperature foods, stress, drugs like Risperdol (caused her major problem), Amitriptyline for some and maybe for her, blood thinners, One blood pressure medication that changes her heart rythm, but not lisinipril, CAT scan contrast agent, Potassium. Many things can cause her EM flares to become bad. She has it normally only in her feet, but it can affect her hands but rarely. She may experience pain in her nose and even a flare in her head if it’s a reaction to more medicine. There are many triggers. She also had light flares in the old days when taking XANAX. I’ve probably only covered a part of the problems. Doctors will often take blood work and run through all the possible primary causes, meaning other dieases that may cause it. They may check you for diabetic conditions. The doctors that most often catch the EM and identify it are Dermatologists for some reason. At least that is what I’ve read in the past. Most doctors won’t see what I call a pure case of EM or a regular EM. It resolve itself fast but a lot of activity and heat will bring on a flare. It can be like an allergy. My mom even takes allergy pills at times, but this to help her sleep. She takes a lot of pain killers and limits her mobility and often takes other pills and that can cause even more problems as she is compensating or trying to adapt and work around the pain by avoiding activities that increase a pain flare or increase pain. It may take up to 2 years or more before you find out you have a rare disease and what is is. Don’t be afraid to go to more doctors and see what they can do for you, if you’re current doctor can’t help you. If it’s EM the bad news is it could get worse and you might not know why or it could get a bit better as well. It’s very difficult to track triggers and things that cause a flare if so many things cause one. My mom has had flares on only part of her feet as well like two toes. She rarely has the white spots raised or sunken and cold which is more like what you are showing. She rarely has numb cold symptoms unless it’s from over chilling her feet. Many others here have mixed symptoms with more complex diseases as well. My sister had some kind of flare like symptoms which could mean it’s genetic or something, and was very frustrated with all kinds of other symptoms maybe hormonal and other problems. Doctors may not agree. We’ve met some of course who had pain flares and neuropathy. I know of one guy who I actually worked with on some projects a few times who had neuropathy and swelling and EM pain and he had a really bad case of Neuropathy but I never saw him during that condition. He was on major pain medication and in a nursing home and died at a fairly young age. But he had some really bad advanced neuropathy and I’m not sure what he died of. He had this problem and a fellow friend visited him. Another guy I met at an ER said he had burning EM conditions in his hands and he was working as a nurse in an ER. Our doctor who has a rather large practice never saw EM until he saw my mom. But I’m told there is one more patient in his practice that has EM as well. It is rather rare and many people won’t know of the diagnosis for some time, if they have it. I have heard that some people have it for a period of time during another illness and then it may resolve and go away, but that may be due to a progression of their other disease or when the other disease is resolved. We talked to a doctor from the U of M medical system who said he had an aunt who had bad EM from side effects from cancer drugs as she was dying of Cancer and he said her pain from EM was worse than the pain from the cancer that took her. So it can vary the intensity and the cause. It’s important to note millions of people have burning feet as a part of their trajectory for Diabetic nerve damage. So many can have burning foot or other flares as a secondary reason to some other condition. My mom’s feet used to annoy her and bother her until she got off the XANAX, but then later after being recovered from that for maybe 8 years or so she got it again from a different nerve pill which made it come back much worse. So I’d suggest as a “NON MEDICAL PIECE OF ADVICE” from a caregiver, if you get nerve medication at all and you have a flare from it, it’s better to give up the nerve medication and verify and track it’s not making things worse or causing more nerve damage, although those suffering from that seem to be rare as well. The body is a lot more amazing and complex than we realize it is. I guess we find that out when it starts to break down and we get older.

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Hi! Thank you for this reply. For me this all kind of started in 2019. I think from March into July it was really bad and I had flare ups every other day. And ever since then it’s been on and off. I haven’t had a flare up in a while but it’s been very rare. I don’t consider it a problem anymore but I continue to figure it out because it was so confusing. It’s funny you mention the medication triggering it because from January to March that year I was on sertraline, that was before it all happened is the only problem. It was a very confusing time for me, it just got so painful! I remember it being triggered on my hands by things like holding my iPad, which got hot from using it, in one space for a long time and even warm water from a small water gun made my fingers swell up. Excercise and warmth in my shoes made it bad, I had to crawl to the bathroom one night because the burning was so bad. It concerns me now because of how it just came about for a couple months and now hardly anymore. But that’s what I’ve read happens with other people with em. I predict in about a year I’ll probably get it again if it is EM. I wish I could go to the doctors now and just figure it out but since it’s not a problem I’ll have sit and wait haha. Thanks again for the reply, great insight on what this is all about and other peoples cases