My fingertips are already permanently red from EMs damage. Same with a couple of my toes but not as noticable. Right around the nails most strongly present.
Thank you for sharing the progression of your symptoms and your opinions, Dragica. Sometimes I'm tempted not to try medication as it can make things worse and take a long time to go back to "normal", if it ever does; but you seem to share my suspicion that flares indeed cause damage - highlighting the importance of medication to stop progression.
Magnesium with Protein almost killed me - My blood pressure became so high - including my eyeballs that I ended up in the hospital emergency room
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Deon said:
According to a Rheumatologist, Neurologist, and two Dermatoligists, i have EM. Just from what i described and have shown them. I have done countless tests of many kinds for over 1 year. Nothing has come up unusual except my ANA Antinuclear anitbodies test came out posititive. I get flares in my hands mostly which turn red and get hot, and at the same time from my elbow down my veins bulge out very big, it feels like someone has put a rubber band around my arm, alot of pressure feeling and heavyness. It is extremely irritating. My feet and ears experience this but rarely. Flares occur from mainly temperature, but also Physical activity, fatigue (later in the evening flares up easy), stress ( i can be doing an exam in class and flare up), and certain foods. I watch what i eat and have maintained a diet which helps my body from overheating. I avoid Nuts,Sugar, and Processed Grains.
Thanks Mads i will tell my family doctor about Calcium Channel Blockers. But maybe i wont do that because magnesium almost seemed to make it worse, my knuckles were very red and i actually experienced more flare ups. Thanks for letting me know there is a connection between the two. Yes im not taking any medication currently, i tried gabapentin and aspirin but both did not help. I took a drug called "Accutane" which i believe is why i have EM now. But that i dont know forsure.
You dont have to look into this issue tho, i will just scan this site from time to time. You do alot of work as it is, thanks for taking the time to read my post tho, i appreciate it. I will continue doing research and questioning my doctor. I will make a post if i ever find a medication that works or some good news :D My right hand is actually starting to get very warm from me trying to think hard about all this stuff, lol its a never ending battle.
Tarsius said:
Thank you for sharing the progression of your symptoms and your opinions, Dragica. Sometimes I'm tempted not to try medication as it can make things worse and take a long time to go back to "normal", if it ever does; but you seem to share my suspicion that flares indeed cause damage - highlighting the importance of medication to stop progression.
I do have a strong belief that increasing duration and intensity of flares eventually cause damage that, in turn, increases the severity and frequency of flares. It stands to reason that serious swelling caused by expanding blood vessels and increased blood flow (poorly-oxygenated blood) does the following:
That combined with the cooling methods EM sufferers tend to use also contribute to re-bound flares and very dry and/or damaged skin and surface blood vessels. My own feet are permanently red because of so much flaring--these are dark red purpura (small dots are visible all over my feet and lower legs).
- presses on small nerve fibers causing temporary malfunction and eventually damage
- increases capillary fragility because of the repeated stretching
- causes damage to the skin which is stretched too much and starved of well-oxygenated blood
- oxygen deprivation and pressure contribute to bleeds or oozing under toenails, which in turn can lead to loss of body hair and toenails
After starting medication the frequency and intensity of the worst flares has decreased and after only about a month the purpura on my legs lessened,and my toenails and body hair started to grow back (the hair on my legs looks like baby fuzz!!) and the sores on my toes started to heal faster. I still have daily flares, but the pain and intensity have lessened as long as I stay in a cool environment and use a fan 24/7. Good luck in finding something that works for your EM, TarsiusDragica
Hi Dragica,
What you wrote makes perfect sense, thank you for sharing.
I also have very dry skin and areas on my feet and ankles with tiny red dots but they don't look much like the pics I found online for purpura - here's a picture. I didn't apply cream outside of the red area so it's a bit dry and flaky. The cream is actually making it burn as if I applied alcohol to a wound, hmm.
I'm happy that you managed to decrease the frequency and intensity of the worst flares, let's see if I can find something too, thank you :)
I have burning/redness/ heat in feet. I have tried many different meds all with no benefit, I am currently trying fluoxtine and I have to say I have noticed a huge difference in no of flares. At first I thought it was down to the cooler weather here in the uk but now after coming off the drug for some weeks I realise it was defiantly helping with the heat/ redness/ burning feet . I do also have raynaulds which I would choose any day over the EM this has been unaffected by the fluoxtine. I do however, still experience the discolouration of black, blue, purple, red in feet. And also still get the blood pooling in shower or when standing. But the fluoxtine has helped massively for the heat and burning red feet.
Hope this helps,
Kate
Thank you Kate, I always find helpful information about effects of drugs, even more when they are positive!
I hope you can eventually get rid of the other symptoms as well!
Thanks Kate, yeah if meds work for someone it is always good to know. I will take note of that med
I choose Raynauds over EM anyday too, Kate!
Thanks for such great information on fluoxetine- an antidepressant of the selective serotonin reuptake inhibitor (SSRI) class. Good news to hear that it is easing things and keeping you more comfortable.Would you mind doing a post on its helping you with flares? I know all our members would love to know how its helping you :)
Big hug
x
Goodness, there are so many elements to this condition. After reading these posts I am so unsure as to how to proceed. Flying by the seat of my pants I guess.
I do not have a diagnosis as yet and feel that it may take quite some time before I do. My doctor was totally unaware of EM not having heard of it before until I showed him a print out of the symptoms.
These symptoms indicated EM in my case but reluctance on his part to confirm. I am no Doctor and can only be sure of my own case but having said that I cannot confirm or deny at this point. Having undergone no medical tests apart from normal full blood count, I shall have to wait to see what his next move shall be.
It is a given that I have had burning feet for many many years without anyone being able to help but moving to the sub-tropics in Qld from NSW has brought this to a full on, out of control condition with many symptoms that I am finding it terribly hard to deal with and isolate to a cause.
I have been warmly welcomed and I appreciate it immensely.
My only course of action is to arm myself with as much information as possible for my next appointment.
I wish those who are continuing their journey on here good luck and those just beginning, like me, also.
Before I finish I want to just add that for me there is no "flare". Whilst it remains hot my pain is continuous - softer in the morning first thing but once the day rolls by and beyond into the night it becomes much worse.
To be misunderstood or thought to be going off the deep end is frustrating to the extreme. I feel understood and not completely isolated. Thank you.
Hi,
I went through the same thing, when I first went to a doctor about my burning feet in 1986. He asked me when I had the burning pain I said “all the time”, he thought I was making it up…
It is disheartening to see that in 39 years, most doctors still do not have a clue! At least we now have a internet to research these conditions, back then, we only had doctors or the library.
Maybe you can print up some info from http://www.erythromelalgia.org/WhatisEM.aspx hopefully doctors know how to read…
I also never thought of the burning feet as flares, they used to always be burning, some time more then other times, but now they alternate with freezing cold, so it has more of a flare aspect to it.
Good luck, you are not alone!
Jon
Hotmary said:
Goodness, there are so many elements to this condition. After reading these posts I am so unsure as to how to proceed. Flying by the seat of my pants I guess.
I do not have a diagnosis as yet and feel that it may take quite some time before I do. My doctor was totally unaware of EM not having heard of it before until I showed him a print out of the symptoms.
These symptoms indicated EM in my case but reluctance on his part to confirm. I am no Doctor and can only be sure of my own case but having said that I cannot confirm or deny at this point. Having undergone no medical tests apart from normal full blood count, I shall have to wait to see what his next move shall be.
It is a given that I have had burning feet for many many years without anyone being able to help but moving to the sub-tropics in Qld from NSW has brought this to a full on, out of control condition with many symptoms that I am finding it terribly hard to deal with and isolate to a cause.
I have been warmly welcomed and I appreciate it immensely.
My only course of action is to arm myself with as much information as possible for my next appointment.
I wish those who are continuing their journey on here good luck and those just beginning, like me, also.
Before I finish I want to just add that for me there is no “flare”. Whilst it remains hot my pain is continuous - softer in the morning first thing but once the day rolls by and beyond into the night it becomes much worse.
To be misunderstood or thought to be going off the deep end is frustrating to the extreme. I feel understood and not completely isolated. Thank you.
Jon_sparky said:
Hi,
I went through the same thing, when I first went to a doctor about my burning feet in 1986. He asked me when I had the burning pain I said "all the time", he thought I was making it up...
It is disheartening to see that in 39 years, most doctors still do not have a clue! At least we now have a internet to research these conditions, back then, we only had doctors or the library.
Maybe you can print up some info from http://www.erythromelalgia.org/WhatisEM.aspx hopefully doctors know how to read...
I also never thought of the burning feet as flares, they used to always be burning, some time more then other times, but now they alternate with freezing cold, so it has more of a flare aspect to it.
Good luck, you are not alone!
Jon
Hotmary said:Goodness, there are so many elements to this condition. After reading these posts I am so unsure as to how to proceed. Flying by the seat of my pants I guess.
I do not have a diagnosis as yet and feel that it may take quite some time before I do. My doctor was totally unaware of EM not having heard of it before until I showed him a print out of the symptoms.
These symptoms indicated EM in my case but reluctance on his part to confirm. I am no Doctor and can only be sure of my own case but having said that I cannot confirm or deny at this point. Having undergone no medical tests apart from normal full blood count, I shall have to wait to see what his next move shall be.
It is a given that I have had burning feet for many many years without anyone being able to help but moving to the sub-tropics in Qld from NSW has brought this to a full on, out of control condition with many symptoms that I am finding it terribly hard to deal with and isolate to a cause.
I have been warmly welcomed and I appreciate it immensely.
My only course of action is to arm myself with as much information as possible for my next appointment.
I wish those who are continuing their journey on here good luck and those just beginning, like me, also.
Before I finish I want to just add that for me there is no "flare". Whilst it remains hot my pain is continuous - softer in the morning first thing but once the day rolls by and beyond into the night it becomes much worse.
To be misunderstood or thought to be going off the deep end is frustrating to the extreme. I feel understood and not completely isolated. Thank you.
Hi there Hotmary,
Sent you an inbox and comment wall message about burning feet syndrome?
Get back to us to discuss how we can best support you.
We have a lot of research, links and posts covering everything. We are slowly organising but may be quicker for one of us (Alina, Nel and myself), to search out relevant material for you for your pending Dr appointment
Healing hugs
x
Hotmary said:
Goodness, there are so many elements to this condition. After reading these posts I am so unsure as to how to proceed. Flying by the seat of my pants I guess.
I do not have a diagnosis as yet and feel that it may take quite some time before I do. My doctor was totally unaware of EM not having heard of it before until I showed him a print out of the symptoms.
These symptoms indicated EM in my case but reluctance on his part to confirm. I am no Doctor and can only be sure of my own case but having said that I cannot confirm or deny at this point. Having undergone no medical tests apart from normal full blood count, I shall have to wait to see what his next move shall be.
It is a given that I have had burning feet for many many years without anyone being able to help but moving to the sub-tropics in Qld from NSW has brought this to a full on, out of control condition with many symptoms that I am finding it terribly hard to deal with and isolate to a cause.
I have been warmly welcomed and I appreciate it immensely.
My only course of action is to arm myself with as much information as possible for my next appointment.
I wish those who are continuing their journey on here good luck and those just beginning, like me, also.
Before I finish I want to just add that for me there is no "flare". Whilst it remains hot my pain is continuous - softer in the morning first thing but once the day rolls by and beyond into the night it becomes much worse.
To be misunderstood or thought to be going off the deep end is frustrating to the extreme. I feel understood and not completely isolated. Thank you.
brm said:
PS: I've never been on accutane but have taken for décades (and still do) topical tretinoin. I've stopped it time and again without noticing any real difference with my problems. Topical means some 1/10 (at least) lower concentration ratio compared with oral route. And by the way, isotretinoin is said to induce rosacea, that is symptoms in the face, not hands, nor feet. I remain skeptical about a link between EM and tretinoin.
Maybe Accutane has to do with EM, maybe not. Anyway, i suggest there may be a correlation between EM and acne. Maybe both conditions are connected by the same pathogenesis. I too have had acne for many years and still have it.
Hi , Im somewhat similar Deon. My hands are slightly more of a issue. They become red and dilated veins with activity using my hands. I look down at my hands all day. My feet are very inconsistent. The veins become dilated, somtimes redness and sometimes discomfort. I was taking Advil , Lyrica, and Ultram as needed. Well i just saw my third neurologist, he said to stop taking everything because I was experiencing diffrent symptoms and he wanted to pinpoint what was what and what could be due to medications. My consistent symptoms are flaring hands and feet at times, intermittent neuropathy like symptoms all over by body. Like sunburn, vibrations under skin, tingling , pins and neededls sensation throughout. Any one else experience this ??