I'm Cheryl and I have burning feet.
I'm not dx'd but I have been dx'd with Plantar Fasciitis. I always felt I had Raynaud's especially in my hands because cold weather is so painful to my fingers. I was dx'd with Lupus once and they took that away, then Spondyloarthropathy which entails pain in the sacroiliac and painful sitting, and then they took that too. I do officially have SIBO and it was dx'd with a biopsy so they can't take that one back. I gave up my job in 2000 because of my health, and you know you can't get disability without a diagnosis.
My feet burn worse at night and the more I use them during the day the more painful the night pain is. I keep them elevated most of the day in my chair. I alternate one foot then the other. Shoes are my enemy, especially tennis shoes. I live in flip flops all year round. My feet start out fine in the mornings but later on the pain will be excruciating until I remove my shoes, but then when I go to bed, the hot feet are back. I know that putting them in cold water helps but it only helps while my feet are in the water. Sometimes I put my feet on my leg, just to cool them off and I can feel the heat from my feet. I don't know of any other diagnosis that so closely resembles my foot pain than EM. Do any of you have trouble wearing shoes?
One thing I've noticed lately is my feet turn red when standing, as if all the blood went to my feet. This is rather new. I've had burning feet for a looooooong time.
Are there tests to diagnose EM? Otherwise I'm gonna have a hard time getting a Dr to listen to me, I just know it.
Nice to meet you all.
Hello Cheryl and it’s nice to meet you too.
Well it certainly sounds like EM. It is common for the burning heat to begin towards the late afternoon and continue into the night and it is made worse by activity and shoe wearing and just plain heat.
The urge to put your feet into cold water is natural but dangerous as eventually the skin can start to break down and the result is ulcers, damaged skin and even gangrene. Far better to wet your feet briefly and then put them in range of a fan. Fans are life savers for EMers!
Sadly there are no tests for EM other than the test for a mutated gene in the very small number of people with the misfortune to have inherited EM.
Take photos of your flares to the doctor and he/she is more likely to take you seriously. They don’t like having a phone or iPad put in front of them in my experience so get photos printed out if you can and then they have the pictures on file.
Once they have agreed that there is something going on they need to look at and try to eliminate the diseases which might have caused the EM. In your case with symptoms you have suspected are Raynauds, EM is commonly secondary to Raynauds which is probably but not for certain, the case for me. In June we out a Spotlight on Raynauds so there is plenty to read up about the connection in the discussions. The next Spotlight will be on Thyroid issues which many of us have.
Your best bet could be to read up as much as you can about the diseases which can have EM as a secondary and see if they ring any bells. People with diabetes, MS, peripheral neuropathy for instance can all suffer with it. Print out any information you find which you think relates to your case and might convince your doctor.
It shouldn’t be so difficult but many, or most of us, struggled for years to get a diagnosis. One of our moderators, Mads, has compiled a Doctors Directory and will surely try to find a doctor in your area who is knowledgeable about EM if one exists.
I hope that doesn’t all sound too depressing. It is hard at first but you are in the best group for advice and support and I hope you will quickly feel at home here and find ways to manage the condition and keep on moving forward.
Thanks Nel. I do have thyroid issues too. What kind of doctor actually would be most likely to know about EM? Rheum or neurologist? I would've thought a Podiatrist would know about it but not mine and none of the Podiatry sites I read, ever gave EM as a cause of burning feet either.
I notice that some sites say shoes help, which is completely the opposite for me. The podiatrist made me shoe inserts which only made the burning worse because I felt like my feet were suffocating, for lack of a better description.
I will continue to search and learn.
I think it should be a dermatologist but in my case it was a neurologist and I then had a struggle to get the dermatologists to agree. I happened to have a huge flare in the neurologists office and bingo! I was also sent to a Lupus clinic and my hands did their dramatic thing and he just said ‘Classic Erythromelalgia’ which was good but followed that with ‘Any medication for the EM will impact badly on the Raynauds’ and did I want to chance it, so I said ‘No’ and the next thing was he referred me back to the ‘care’ of my GP. This was the GP who said ‘Never heard of it so I can’t help you’. I have changed to another surgery where they hadn’t heard of it either but are willing to learn.
I guess it all depends on the individual you see. I am now going to see another dermatologist in a different hospital at a clinic where they specialise in Raynauds, scleroderma etc. and are used to treating EM.
The idea of shoes helping is weird. There are some people helped by wearing compression socks and in mid-Winter I will wear them with the tightest shoes I can get into just for the time I am splashing through snow or slush. Most of us wear nothing or flip flops and in the Summer I keep a pair of flip flops in the fridge and change frequently. I have been recovering from a badly smashed leg and for safety’s sake when out with crutches I wear a very light pair of sandals which I whip off as soon as I get indoors.
As for the thyroid. It’s a strange one as I have never seen it stated that there is a connection but a large number of us have thyroid issues and the next Spotlight is going to be really interesting.
Good luck with the reading
My body is like my car..the minute I take it in for repair, it acts like it's in perfect condition. haha
The Rheum (long ago) saw my feet turn purple while I sat in his office and that's how I got dx'd with Lupus in the first place.
I don't know that I have flares...
And what is dependency of extremities? I read this and dont' know what that means (Patients should avoid precipitating factors such as warmth, dependency of extremities, exercise, tight footwear, and alcohol intake.)
Do you have Lupus then Cheryl? EM is known to be associated with Lupus.
Flares are just how we describe the moment when feet/hands/ears or what have you begin to burn and usually turn red.
I cannot imagine what ‘dependency of extremities’ is. Perhaps Mads will know. Google doesn’t seem to know.
I was dx'd with Lupus but had a negative ANA but the Rheum was positive I had it. I now have a positive ANA the last two blood tests but when they do the secondary tests of complements and such, mine are always normal. I probably skew the results because I do juice fasting and have done the SCD diet. I was just tested for Celiac, and I do have the gene but I stopped eating gluten long ago, trying out the SCD diet and then GAPS. I've not been perfect though but I get relief with juice fasting and water fasting, although it's hard to do. Migraines and foot pain will have you doing crazy things to stop the pain.
I see a new Rheum in September but it's a VA doctor and I don't have any faith in them at all. I complained of my feet hurting in 2000 and maybe before, and told them I couldn't wear shoes at all. That seems like a big clue to me but they didn't catch it. I had osteoporosis in my 30's and in my medical notes they call it menopausal osteoporosis..*laughs*, because they dont' read my history.
Everything you have said so far is all too familiar as far as my EM goes. Feet turn red and painful when standing ,wearing shoes or any slight warmth at all. It is extremely common for burning to be worse at night. I keep my house very cool , cooler than I would like but it stops most of my burning if I keep my feet up and rest most of the day but when evening comes even though nothing has changed the burning comes back. If my feet are left down in the sitting position and it's not too warm they too turn purple and almost black and swollen. My Doctor just saw this two days ago and said it looked as if my feet belonged to a corpse!
Like yourself my doctors suspected a connective tissue disorder of sorts but my test results keep changing just like yours and the result is inconclusive. My Rheumatologist did diagnose me with a non specific connective tissue disorder based on my symptoms including more than just the EM. She said if it looks like a duck and quacks like a duck it is probably a duck. I have been treated with autoimmune meds for a little over a year now and this has made great improvements in my other symptoms but hasn't effected my EM. I too have Raynaud's / Pernio / Levidoreticularis. These came on after my EM although I had freakishly cold hands and feet for about 6 months before my EM appeared. It is just that they didn't loose all blood flow and turn white and purple till about 6 months after EM started.
It took me about 3 years to get a diagnosis although I hadn't found this site and hadn't even heard of EM till I was lucky enough to find a doctor that knew what it was. I must have been to 20 to 30 different doctors in the previous 3 years and they all thought I was crazy because what I was describing wasn't possible! I don't care how possible it was because it was happening anyway!
You should at least have a leg up and hopefully get a diagnosis sooner than later now that you are aware of it existing and the fact you found this site so you will be armed with information to bring to your doctors and tips on what to do. As Nel said pictures are worth a thousand words because you never know if you will flare while there. I also would keep a diary of what causes your symptoms , when they occur and what helps make them better. As Nel mentioned Water is a no no as it can damage your skin. We have a member here that just posted recently she almost lost her feet to gang green because of her prolonged soaking. Fans are great as is spritzing water and of course air-conditioning. I have found Chillows are a God send. They can be found online and in some drug stores. I couldn't live without my Chillow. I have another member here to thank for that. I never would have known about it if not for him. That's why this site is so important to us. I have found so much life altering information here.
If after bringing your doctor photos and printed out research papers on EM if they still dismiss you it may be time to find a new one. Sometimes it takes a few before you find the right one for you. Just don't give up and don't take your crazy for an answer. You will find on the main page a post on information for new members . I would definitely check that out too.
Hang in there Cheryl.
I almost forgot!!! Dependency of extremities. This is my take on it.....The position of your extremities . If my hands or feet are down it increases the blood flow to those areas making my EM worse as does body position such as any position that puts pressure on my arms or legs. If I lean to the side a bit in my chair it will cause flaring particularly the electric like stinging symptoms . When I do this it also causes burning on the side I am leaning on both the actual place where there is pressure such as my arm and in my hands and feet of that same side. Strangely the opposite hand and foot goes extra cold. I usually just adjust my position to stop it but if for some reason I need to be in that position I cool my burning hand and foot with my opposite cold hand and foot. Don't ask how or why this happens! It just does!
So my theory is it means extremity position and or pressure on extremities. Either way they both can effect EM.
Thanks Alina! Guess what I just realized. I said before my feet turn red if I'm standing...well that's not always the case. I was outside in the heat the other day when they turned terribly red, so maybe that's not blood pooling in my feet like I thought. I'm gonna start paying closer attention...and I'm charging my camera ...*grins*
If I am lying in bed and my feet start to burn they don’t actually turn red until the pain drives me from my bed and my feet touch the floor. I wish I knew how that works.
I too will often feel the pain before the redness comes although I have some rare times when the red comes but no pain! If I don’t stop what I am doing to cause the redness and keep going the pain will always come. These weird inconsistencies are part of why diagnosis can be so challenging!
Haley3. My feet or hands or any other body part will turn red when not standing so that isn’t blood pooling. You may find like myself they will become redder upon standing and you will feel a rush of pressure as you stand as more blood rushes down but in this case for me it isn’t blood pooling so much as the vessels dilating excessively causing more blood to rush there if that makes sense.
If my feet turn red in the Winter that is a burning flare. However on a Summer’s day so long as I am not in the sun or being too active too late in the day my feet can go red without burning. Weird or what!
Oh it's also called Mitchell's disease! Might have to say both names when I bring it up.
Wow this is bad? Mine doesn't look like this at all. Does yours? That's major swelling.
Mine has never been quite that bad but close to the picture of the feet. That was only before I knew temperature was a trigger and my feet were burning along with other body parts 24/7 for a few months. I developed sores all over and some toe nails fell off. Now that I know how to minimize my flares I have never been that bad again.
I’m glad yours isn’t that bad.
Mine started like that too though bright red, not at all purply. Like Alina I learnt how to avoid the worst of it and, thanks to aspirin, when I flare I don’t swell the way I used to. My feet peeled but cracks were short-lived and I wasn’t that bad that I lost toe nails. But we all have EM for different reasons and live in different climates and we are all different.
I was looking at the photo of the arms in the link. And the way the picture is shot leads me to conclude the arms belong to separate individuals. Does anyone else see this or am I so brain fogged I've gotten it wrong?
I can see that the hands and feet belong to the same person. Mine do not swell up that badly, thank goodness. But I do get swelling which makes it hard to put my toes to the floor. Not just the pain but the swelling stops me able to do it. At these times I'm sort of walking around on the balls of my feet (red and swollen) and my heels (also red) and my toes sticking up. Mostly it's accompanied by the burning sensation but there have been times when my feet and legs up to mid calf have been swollen and red and my husband has bought my attention to them. Because there was no burning feeling and I was barefoot, I hadn't noticed they were swollen.
Hi Blue. It certainly looks like 2 different people because the arms are facing the wrong way. I guess they could have photo shopped her arm in when not flaring for comparison if not it has to be a different person. Good eye Blue. I did notice she has well kept finger and even toenails for someone in such bad shape. She must have a loving family member to do them for her as my sweet husband has done for me. Even my toes! I am spoiled
I know what you mean blue about your feet so swollen they don’t fit flat on the floor.
My burning at its worst goes up and over the knees and halfway up to my elbows.