Hello,
How many out there have both burning feet and ice cold feet? They will alternate several times during the day, but mostly are burning hot and red.
I did a test, using a infrared thermometer; when my feet were cold, the temperture read 69-75 degrees, when they are burning hot, the temp is around 95 degrees, though it feels like 120! Has anyone tried to measure the basal temperture of there feet?
I have been recently diagnosed with SLE Lupus and Polyneuropathy, but have had burning pain for several years. I always felt the ice cold numb feet were a relief compared to the burning pain.
I am currently taking Cymbalta for the nerve pain, but it hasn’t helped much for the burning pain. Are there any other medications that help, besides soaking them in ice water, as this is difficult during the day. I have already gone through the Gabapentin/Lyrica no pain reduction and horrible side effects.
My Rheumy explained it as a microcapilary abnormality, where my perepheral nerves cannot regulate the temperture of the body. Does this make sense?
I have noticed that when my feet and palms burn and get red, I can feel the pulse beating real strong in them, the veins will stick out in my forearm and feet.
I mentioned this at my last Neurology appointment, but the doctor just wanted to Dx this as Polyneuropathy and boot me out the door.
When my hands and feet get cold, they do not change color, but just get pale.
My old Rheumy asked me if I was going in shock, one time at the appointment because my hands were ice cold, I just laughed and said it was part of the neuropathy. I had a podiatrist tell me my feet were so hot, he could use me in the office as a heater!
Hi Jon and welcome to the group.
I have always said it is a shame we can’t somehow harness the energy put out by EM affected areas. My face alone could power a light bulb.
You don’t mention if you have Raynauds but those of us who do spend our lives veering from the frozen to the burning. Winter is of course the worst as I am never just nice and comfortable, always icy numb or flaring.
You mention using water to cool your your feet but this is an absolute No-No! It will lead to the deterioration of the quality of your skin and sores, indeed severe ulceration, can eventually follow. It sounds harsh but you mustn’t do it. Damp cloths and a fan are the way to go or buy Chillows to wrap around your feet. I usually cool my feet walking bare foot on cool grass or cold tiles
When I took the grandchildren to a Science Museum we all stood in front of a thermal imager and that was interesting. I was super hot and walking in bare feet but wearing gloves because my hands were cold and sure enough the imager showed me and the children glowing white hot but alone among them my hands and to a lesser extent my nose, showed up as deep purple, about as cold as could be.
Otherwise I have never measured the heat or cold of my skin but I don’t even have an ordinary thermometer. I reckon I know if I have a fever and I certainly know if my extremities are super cold or super hot. When I flare the veins stand out and throb and hands are swollen, hot and red then they lose colour and shrink before my eyes as they get cold.
I have only mild neuropathy apparently but the neurologist insists that the entire problem is neurological.
I used to gain great relief from one small aspirin a day but my heart specialist has banned it so I am not a happy bunny at the moment.
This summer will be three years Yes cold water helps but dried and cracked skin results I found a cool tile or smooth cement in my garage works well to ge them cold Before going to bed I must cool them down and then put a walgreens ice cooling unit from the frezzer that comes with a black insulation cover that allow s it to stay cooled all night
I tried all the recomenrd med,s and just decided to drop Lyrica not much help with a $500 co- pay out here in NC it was only $60 in NM Albq when I left there in Nov last yea.r I Take Cialis for daily use ( it improves blood flow to some extent) buy it from a Canadian source on the inte net <1$ each
I cut the bottom of my socks and go bare footed most of the times The problem is worst in afternoon ans evning after my nap OK most morning and i can ware shoes when I walk the dog. I talk to my heart and feet and tell them I love them and to keep things moving right a long, I think it helps too Love your self say it out load while looking at your seld in the mirra
I believer very big helpful magnetic trype energy changes ard coming to the earth and if we make it to 2017 all problem will be gone
This is to be the year of discovery, next acceptance, and 2017 completion Blessing to all Wiz John
Thanks for the info. I was actually mostly using refrigerated wet towels, had some chemo treatments on my face, so had to soak my face, then would put the towels on my feet afterward. I do like cold floors best! I have hypothyroidism too, I will list them all on my bio when I get a chance. Dry skin is a big problem with me, because my doctor keeps reducing my Armour thyroid meds, and I also have SLE Lupus that effects my skin. Lots of coconut oil helps. I will look into the chillies and other chilling devices! My face also seems to be effected, I will start sweating, and my face gets bright red sometimes, without exertion. I have had people sympathetically ask me if it is to hot, I say "no this is normal for me…
I would love to go around barefoot, but I live on a hundred acre farm, and need protective shoes, which drive me crazy with the heat, I wear flip flops as much as possible, but I am sensitive to UV and reluctant to put sunscreen on my feet!
It is true, that it is neurological, but I think it has to do with the small fiber nerves that control the microcapilaries in the hands and feet, (or whereever we are effected). A good neurological test would be a thermal sweat gland test, where they cover you in a powder that is heat sensitive, and uniformly bake you in a special chamber, then see how the body reacts, and temperture patterns. I wanted to get this, but being a cash patient, the Neuro dumped me in favor of his medicar patients… Not that it would help, but at least the Neuro would be able to Dx you. We know we have this, and that there is not much doctors can do, so at some point you just try to control your own symptoms.
Nel said:
Hi Jon and welcome to the group.
I have always said it is a shame we can’t somehow harness the energy put out by EM affected areas. My face alone could power a light bulb.
You don’t mention if you have Raynauds but those of us who do spend our lives veering from the frozen to the burning. Winter is of course the worst as I am never just nice and comfortable, always icy numb or flaring.
You mention using water to cool your your feet but this is an absolute No-No! It will lead to the deterioration of the quality of your skin and sores, indeed severe ulceration, can eventually follow. It sounds harsh but you mustn’t do it. Damp cloths and a fan are the way to go or buy Chillows to wrap around your feet. I usually cool my feet walking bare foot on cool grass or cold tiles
When I took the grandchildren to a Science Museum we all stood in front of a thermal imager and that was interesting. I was super hot and walking in bare feet but wearing gloves because my hands were cold and sure enough the imager showed me and the children glowing white hot but alone among them my hands and to a lesser extent my nose, showed up as deep purple, about as cold as could be.
Otherwise I have never measured the heat or cold of my skin but I don’t even have an ordinary thermometer. I reckon I know if I have a fever and I certainly know if my extremities are super cold or super hot. When I flare the veins stand out and throb and hands are swollen, hot and red then they lose colour and shrink before my eyes as they get cold.
I have only mild neuropathy apparently but the neurologist insists that the entire problem is neurological.
I used to gain great relief from one small aspirin a day but my heart specialist has banned it so I am not a happy bunny at the moment.
I have not been diagnosed with Raynaunds disease, I will ask the Rheumy on my next visit.
They do have those cooling units that circulate water, mainly used post surgery, I had one for my shoulders, maybe get one with booties!
I had horrible brain fog and blurred vision while on Lyrica, the doctor thinks the brain fog is from Lupus, so it has improved with antimalarial medication. Cymbalta helps about 50%… On a side, I now get my Rx wholesale through a friend that owns a pharmacy, he sells me them at his cost, it is amazing how much they mark everything up!
I have a iMRS unit that is a pulsing mat with sound and LED glasses, it hasn’t helped much… This replicates the earths magnet field…
Wizzard John said:
This summer will be three years Yes cold water helps but dried and cracked skin results I found a cool tile or smooth cement in my garage works well to ge them cold Before going to bed I must cool them down and then put a walgreens ice cooling unit from the frezzer that comes with a black insulation cover that allow s it to stay cooled all night
I tried all the recomenrd med,s and just decided to drop Lyrica not much help with a $500 co- pay out here in NC it was only $60 in NM Albq when I left there in Nov last yea.r I Take Cialis for daily use ( it improves blood flow to some extent) buy it from a Canadian source on the inte net <1$ each
I cut the bottom of my socks and go bare footed most of the times The problem is worst in afternoon ans evning after my nap OK most morning and i can ware shoes when I walk the dog. I talk to my heart and feet and tell them I love them and to keep things moving right a long, I think it helps too Love your self say it out load while looking at your seld in the mirra
I believer very big helpful magnetic trype energy changes ard coming to the earth and if we make it to 2017 all problem will be gone
This is to be the year of discovery, next acceptance, and 2017 completion Blessing to all Wiz John
Hi All, I really wonder how many people there are who suffer from this without actually knowing it I am sure there must be many and it might not be as rare as we think it is, purely that the doctors don't recognise it! I find exactly the same the only relief is water in a bowl, but not cold. On top of that I now put my feet inside freezer bags first so that the water doesn't actually get to my skin, seems to work well. In fact my bowl of water is actually at 20 degrees centigrade, which isn't cold really it's room temp, but it's the physical properties of water that take the heat out of your feet which are obviously higher than 20"C. That's why it feels cold when your feet first go in, mind you, I have to keep topping it up with water out of the fridge as it soon goes up in temperature! I purchased a thermometer that has a probe that you put in the water it was a photographic one for use in a darkroom.
I always used to be very hot even when it wasn't hot my whole body, strange except for my hands! However, that was due to another health problem which took me years to convince the doctors that I had it. I had a tumour on my adrenal gland and it was a pheo in short easier than the full name now my adrenal gland has been removed I am no longer hot except when the weather is hot. My feet however are a different matter they are really hot to the touch I did once measure the temperature of my skin but can't remember what it was must do it again.
I have had the same problem blamed on nerve damage partly as I was supposed to be diabetic, but I wasn't it was the adrenal gland pushing my glucose up now it's normal. However, the doctors are still saying it's nerve damage but the normal test came back as only very mild not consistent with my how they are. I saw a registrar neurologist and he thought it could be small fibre nerve damage and recommended a skin biopsy, but when the letter came to my GP it was from the consultant who had never seen me and he said it wasn't necessary!
Since then I have found out that I have thick blood, which can cause EM and had blood tests done last Friday which I haven't had the results of yet. At the time the consultant sounded really nice and understanding. However, today I have got a letter which really upset me it was a copy of what he had said to my GP. The first thing he said last week was that I should stop smoking, which is a fair comment. However, I told him that I had cut them down to next to non perhaps one or two a day and was hoping to give up altogether. Then it all went wrong and my husband had terminal cancer and lost the use of his right arm and leg and I didn't have help at home with him despite numerous attempts to get it. I was looking after him on my own and having to lift him which even carers aren't allowed to do on their own, plus there was the stress. What happened was that my smoking went up again and has continued that way as he only passed away in November and then there is the stress of fighting with doctors over my feet and legs. I told him all this and he said he could understand that. In the letter today he said that my thick blood was due to me being a heavy smoker, no mention of the fact that years ago I cut it down to just the odd one or two! My feet and leg problems have been going on for about 9 years now gradually getting worse and that was at a time when I wasn't smoking much. He also said I had asthma which I don't. My medical records said that I had asthma induced due to atenolol a beta blocker which I am allergic to and went into anaphylactic shock, so I didn't really have asthma. He also said that I was diabetic which I am not it was due to the adrenal gland over producing glucose and now my levels are fine without medication. He is still putting it down to nerve damage and said that my main problem was swelling of my feet and ankles nothing about the redness or the pain. Finally he said if the tests came back negative for this thick blood thing there would be no further treatment required! Of course it really depressed me and at one time this afternoon I felt like jumping off a nearby cliff and ending it as I felt so desperate.
Dear sheltielife. No wonder you feel awful with what you have had to deal with. Your doctor seems to be playing the blame game which they so often do when they are baffled. They have to find an explanation to save face and they achieve it by throwing it back at the patient.
Take it one small step at a time. Perhaps those blood tests will shed some light but if not you will have to put all your attention to minimising the pain in your feet and legs. My shins are always burning hot and I strap frozen wine cooler bags to them when I go to bed and that is helping.
Can you cast around for a new doctor? I moved doctors twice to get the kindness I needed, or do you live somewhere like my daughter does with only one doctor surgery in town and a five hour drive to see a consultant. Those of us who live in big cities lose sight of how it is for people in isolated communities.
One of the doctors I moved away from said he had “seen the symptoms before but never knew it had a name”. Obviously never looked it up either.
Hang in there
Best of luck
More about this tomorrow as I am relaxing before going to bed. BTW I have just changed GP practice and the new GP is great, it's the consultant I am having trouble with the haematologist. The vascular man that I saw that found out about my thick blood was brilliant, but of course I had to be referred to a haematologist as it isn't his field. My nearest hospital is 25 miles away so not such a long journey but far enough. I live in Cornwall, Mawgan Porth between Newquay and Padstow. One thing is I live in a wonderful place with a sea view!
oh Lucky you. what a beautiful place to live. 25 miles is a small thing if you live somewhere lovely. sleep well.
HI Jon Sparky and Nel.
I may have some infrared pictures to share with everyone very soon. I asked a school of engineering in Ontario, Canada if they could design a cooling sandal with remote control for people who suffer from EM. Amazingly,this is actually a very difficult project--apparently much more difficult than sending something to a space shuttle (another student project)!! However, a group of students has taken this on and as part of their project they took many thermal images of my feet. As it happened, one of my feet started to flare when I accidentally bumped one toe on a chair leg. It was quite amazing to see the flare in progress in these photos. The temp increased many degrees in my whole foot in a matter of minutes while the other foot remained OK. I've asked for copies of pictures and will share once I learn how to interpret the temperature gradient for each photo.
Dragica
Wow, that will be interesting to see!
I would think a cooling sandel might be possible with the cooling IC chip that they use for those solid state refrigerators. They would be a little thick as you have to incorporate cooling fins in the design, maybe part of the supporting sole of the sandel…
I have never had just one foot heat up, they have always been bilateral. I guess the sudden impact started inflammation that triggered the episode?
I would I imagine the video cameras that show a heat signature would give you a video of the temperture change, I have seen the, at the electrical trade shows, when I used to be able to go to them…
HI Jon-Sparky.
I originally thought they could use micro-cooling coils (like those developed by U Purdue) --that's why I contacted the Mechanical engineering folks. However, they discovered that the shoes would be too heavy because of the need to dissipate the heat. And the micro-coils were not flexible and strong enough to handle the pressure exerted by feet while walking. So, they are using thermoelectric plates (hot on one side--cool on the other as they are ultra light and thin) And they've found very thin and quiet fans to deal with the heat. The first prototype of the sole worked as far as cooling my feet, but was not really ready for walking--they're working on flexibility of the sole now. It's very exciting. Part of the team is working on an ultralight power source, another part is working on the remote temperature control device and another part is working out the system's issues. It is really complicated -- 3 departments of engineering are now involved. This is the second year of the work and the students are just wonderful to work with--it's a real back and forth of ideas. I'm keeping my fingers crossed.
Jon_sparky said:
Wow, that will be interesting to see!
I would think a cooling sandel might be possible with the cooling IC chip that they use for those solid state refrigerators. They would be a little thick as you have to incorporate cooling fins in the design, maybe part of the supporting sole of the sandel...
I have never had just one foot heat up, they have always been bilateral. I guess the sudden impact started inflammation that triggered the episode?
I would I imagine the video cameras that show a heat signature would give you a video of the temperture change, I have seen the, at the electrical trade shows, when I used to be able to go to them...
Ah, I thought so, they will be interesting to see what they come up with! I had a small frig that I repaired, it had two of these plates, and one had failed. Luckily I had scraped another and had one good plate. There weakness is in the dissipation of heat, if they get to hot, they will fail. That is a challenge to make the cooling fins flexible, I am sure someone in the class will come up with it!
Let's stay in touch about this. It is not a short-term project. I hope that they can complete the second prototype before their final year ends in April. Perhaps you might other suggestions as we move forward on this.
Cheers,
Dragica
Jon_sparky said:
Ah, I thought so, they will be interesting to see what they come up with! I had a small frig that I repaired, it had two of these plates, and one had failed. Luckily I had scraped another and had one good plate. There weakness is in the dissipation of heat, if they get to hot, they will fail. That is a challenge to make the cooling fins flexible, I am sure someone in the class will come up with it!
Will do! I am not going anywhere... I will think on it.
I feel your pain John sparky. I get these crazy fluctuations from to the bone frozen hands and feet to intense burning. I will have burning hands with frozen feet at the same time or vice versa. I have even had burning feet with small patches of white freezing just in the center of the ball of my feet like frozen islands in a lake of lava.
This can be very difficult to treat because treating one makes the other worse. My only advice would be to treat slowly so you can hopefully stop the heating or cooling soon enough to not trigger a flare in the other direction. I always lean on the side of cooling too much at times because the burning is much more painful. Don't get me wrong that to the bone cold is painful just not as much and more of an intensely annoying feeling when the frozen lasts a long time if that make any sense.
I have these slipper inserts I found at the drug store that you can put in the freezer to cool and microwave to warm. I always keep one pair in the freezer with one on standby for warming.
I hope you are able to find the right balance and find some comfort. For me it is now second nature constantly making adjustments throughout the day just trying to stay balanced on my little temperature tightrope.
Hi,
You can do what i do, use your cold hands to warm your cold feet, that will neutralize them! Actually I use my cold hands to ice my sore back, it is just like a ice pack.
My heat and cold are usually in sync, all areas hot or freezing. Your patch work condition blows my whole theory, or part of it, I guess if the brain is sending wrong signals to heat and cold, in your case it is just sending different wrong signals to those areas!
Over the last 38 years, I have used common sense methods like cooling my feeton a cold floor or heating them up when they are cold. I was told not to cool my feet, by the doctors that thought it was PN, so I did it anyway and felt guilty…
I prefer painful cold to painful hot! Maybe they should make a drug that reverses the condone, you could then have warm feet when it is cold, cold feet when it is hot, I would like that better!
BTW the reason they use gabapentin, Lyrica and anti depressants for conditions like this, they dampen the neurons in the brain so they don’t fire off, and in turn it dulls the pain.
Thanks--nice to know you're available to be a resource, if needed.
Dragica
Jon_sparky said:
Will do! I am not going anywhere... I will think on it.
Jon I drive with gloves on my freezing hands and the aircon directed at my wildly flaring feet. Sometimes one hand will flare and the other remain frozen. Then there is the nose and the ears flaring at this moment while I type in fingerless gloves and cool my feet on the cold tiles in the kitchen. I never know where I am. My neurologist was happy for me to take off my socks and shoes in his office today and I made him smile by saying no-one can strip off clothes faster than someone with EM.
I do the same thing when one part burning one ppat freezing… cool my burning part with my freezing part ie cool feet with hands or vice versa. Like Nel it can just be one side. . Cold hand burning hand. I just use one to cook the other. My cold hand feels so good on my burning one. You just can’t keep them together too long or the burning one will win and they will both burn! Little on little off works for me. 
I just noticed my typo saying one hand cooks the other instead of cools the other. I thought I would leave it in because it’s so true if you keep them together too long. It feels as if it could actually cook your hand!