Hello everyone!
I'm new here and I've never been diagnosed with EM. I'm not even sure that I have it, to be perfectly honest. But I'm curious about whether my symptoms are consistent with EM.
For the last 8 months or so, my face has been flushing red and hot in the evenings. Whether I'm hot or not, my face and ears go "fluorescent" (which is the word my coworker uses). At first it was every few days that it would occur. My doctor thought it was due to my recurrent sinus infections and put me on two different courses of antibiotics. Then my right hand started turning red, burning, and swelling too. It started with my thumb and first two fingers, which made my doctor think carpal tunnel or a neck injury. These were ruled out. I think the two are related since they started at around the same time, and are essentially the same thing. Now both hands are involved and all fingers. The fingers will swell and turn hot, but the top of my hand remains cool and white. My nose has now started swelling a bit when my face flares, as well. It's progressing and I have no clue what it is. I thought it was a new reaction to caffeine, but it consistently happens in the evenings whether I've drank tea that day or not. I also have a flare if I blush. I never used to blush, but now I do with ease whenever I am in a tense, embarrassing, or awkward situation. I work with the public, so this happens every now and then.
I don't know what to do at this point. I'm seeing an allergist next week to see if my sinus infections are related to an allergy such as mold. I don't know if sinus infections can cause this type of hot swelling and redness that comes and goes. I've also wondered about rosacea, but now my hands are involved which is confusing.
Does this sound familiar in any way? My doctor doesn't seem too worried at this point so I'm not sure who to ask to see. A dermatologist?
Hi tsaritsa.
Diagnosis of EM is notoriously difficult. Have you read the discussion ‘What do we all have in common?’?. It gives some idea of the difficulties.
I hope you are taking photographs of flares. It is most important that you take them, print them out so they are easy to look at and take them with you to the doctor where they should stay in your file. Print out some articles too, from reliable sources, and present them with the photos.
Which doctor is another debatable subject as members have been diagnosed by such a range. It’s probably a toss-up between neurology, dermatology and self diagnosis thanks to the Internet but I am sure members will have other suggestions. Sorry I cannot write more at the moment as I have a Sunday date with a nice cool woodland walk.
I would try for an appointment with a clinical Rheumatologist first, and with him I would ask whether in his opinion a dermatologist might have something to offer too.
I would mention this on-line group - so he/they understand that you are really interested in finding out what your problem is, and on which fronts your concerns lie i.e. "is this Erythromelalgia" and if not what is the diagnosis.
Do you live in the US?
Amazing this should crop up. For years I have thought I had EM but I never told a doctor that's what I thought it was and then there were more serious things to think about with both my husband and I and it got put on the back burner. However, recently I have been trying to find out more and this group has been wonderful all the information is incredible. It was looking on the internet that I found the association. So, mine is only self diagnosed at the moment. I recently changed GP for other reasons, not the one I was seeing, but the practice and it's the worst thing I ever did, as my normal GP was wonderful. I changed back to him this week. I am in the UK.
He came to visit me on Thursday as I just can't get to the surgery at the moment as my feet and legs are so bad all the time unless I have them in a bowl of cold water. He was here for about an hour, which is incredible for the UK. I showed him this association and he looked at the photos then looked at my legs and feet and immediately agreed that it looked very likely that I was right. He had actually heard of it, which is a miracle in itself, but he said he had only ever known once case previously in 30 years. I do have rheumatoid arthritis and thick blood. However, he suggested that I see a dermatologist. I said I would pay to see him rather than wait for the NHS. So he said he would do some looking up and then refer me to one. I also did my own looking up and found one in Truro, Cornwall, which is only 25 miles away. He has his own personal website and I could hardly believe my luck when I saw that he knew about EM! So, I wrote an email to my GP and he replied at 22.35 last night, a Saturday evening! He said he has come up with the same one as I found and is doing a referral when he is next at surgery which is Tuesday. So, it just shows how useful it is to be able to show a doctor this association.
I am pleased and wish you real good luck with this appointment to see a Derrmatologist, Sheltielife.
sheltielife said:
Amazing this should crop up. For years I have thought I had EM but I never told a doctor that's what I thought it was and then there were more serious things to think about with both my husband and I and it got put on the back burner. However, recently I have been trying to find out more and this group has been wonderful all the information is incredible. It was looking on the internet that I found the association. So, mine is only self diagnosed at the moment. I recently changed GP for other reasons, not the one I was seeing, but the practice and it's the worst thing I ever did, as my normal GP was wonderful. I changed back to him this week. I am in the UK.
He came to visit me on Thursday as I just can't get to the surgery at the moment as my feet and legs are so bad all the time unless I have them in a bowl of cold water. He was here for about an hour, which is incredible for the UK. I showed him this association and he looked at the photos then looked at my legs and feet and immediately agreed that it looked very likely that I was right. He had actually heard of it, which is a miracle in itself, but he said he had only ever known once case previously in 30 years. I do have rheumatoid arthritis and thick blood. However, he suggested that I see a dermatologist. I said I would pay to see him rather than wait for the NHS. So he said he would do some looking up and then refer me to one. I also did my own looking up and found one in Truro, Cornwall, which is only 25 miles away. He has his own personal website and I could hardly believe my luck when I saw that he knew about EM! So, I wrote an email to my GP and he replied at 22.35 last night, a Saturday evening! He said he has come up with the same one as I found and is doing a referral when he is next at surgery which is Tuesday. So, it just shows how useful it is to be able to show a doctor this association.
Diagnosing erythromelalgia is notoriously difficult, but there are 2 distinct features that seem to set it apart from most other disorders -- flares are invoked by heat and responsive to cold.
Have you worn gloves on your hands lately? You might want to try it and see if anything happens.
My hands are strange sometimes they are red on the palms and other times they are freezing! I do wear gloves in cold weather these days and I never used to. It seems like my body thermostat doesn't work well at all, at least that's how it feels. My feet and legs can be roasting and the top half of me can be freezing and shivering.
My comment was directed towards the discussion starter, sheltielife, since tsaritsa specifically mentioned his/her hands. I'm aware your problem is primarily your feet.
OK just curious because the 2 doctors in the US are at Mayo Clinic that specialize in it. I know University of Oxford is doing studies, so you may want to contact them and see if they can recommend anyone in the UK. Thats how I found Mayo Clinic. I emailed Dr Waxman who does most of the US research,
sheltielife said:
Amazing this should crop up. For years I have thought I had EM but I never told a doctor that's what I thought it was and then there were more serious things to think about with both my husband and I and it got put on the back burner. However, recently I have been trying to find out more and this group has been wonderful all the information is incredible. It was looking on the internet that I found the association. So, mine is only self diagnosed at the moment. I recently changed GP for other reasons, not the one I was seeing, but the practice and it's the worst thing I ever did, as my normal GP was wonderful. I changed back to him this week. I am in the UK.
He came to visit me on Thursday as I just can't get to the surgery at the moment as my feet and legs are so bad all the time unless I have them in a bowl of cold water. He was here for about an hour, which is incredible for the UK. I showed him this association and he looked at the photos then looked at my legs and feet and immediately agreed that it looked very likely that I was right. He had actually heard of it, which is a miracle in itself, but he said he had only ever known once case previously in 30 years. I do have rheumatoid arthritis and thick blood. However, he suggested that I see a dermatologist. I said I would pay to see him rather than wait for the NHS. So he said he would do some looking up and then refer me to one. I also did my own looking up and found one in Truro, Cornwall, which is only 25 miles away. He has his own personal website and I could hardly believe my luck when I saw that he knew about EM! So, I wrote an email to my GP and he replied at 22.35 last night, a Saturday evening! He said he has come up with the same one as I found and is doing a referral when he is next at surgery which is Tuesday. So, it just shows how useful it is to be able to show a doctor this association.
Hi, Thanks for the Oxford info may well have to do that.
NP2010 said:
OK just curious because the 2 doctors in the US are at Mayo Clinic that specialize in it. I know University of Oxford is doing studies, so you may want to contact them and see if they can recommend anyone in the UK. Thats how I found Mayo Clinic. I emailed Dr Waxman who does most of the US research,
sheltielife said:Amazing this should crop up. For years I have thought I had EM but I never told a doctor that's what I thought it was and then there were more serious things to think about with both my husband and I and it got put on the back burner. However, recently I have been trying to find out more and this group has been wonderful all the information is incredible. It was looking on the internet that I found the association. So, mine is only self diagnosed at the moment. I recently changed GP for other reasons, not the one I was seeing, but the practice and it's the worst thing I ever did, as my normal GP was wonderful. I changed back to him this week. I am in the UK.
He came to visit me on Thursday as I just can't get to the surgery at the moment as my feet and legs are so bad all the time unless I have them in a bowl of cold water. He was here for about an hour, which is incredible for the UK. I showed him this association and he looked at the photos then looked at my legs and feet and immediately agreed that it looked very likely that I was right. He had actually heard of it, which is a miracle in itself, but he said he had only ever known once case previously in 30 years. I do have rheumatoid arthritis and thick blood. However, he suggested that I see a dermatologist. I said I would pay to see him rather than wait for the NHS. So he said he would do some looking up and then refer me to one. I also did my own looking up and found one in Truro, Cornwall, which is only 25 miles away. He has his own personal website and I could hardly believe my luck when I saw that he knew about EM! So, I wrote an email to my GP and he replied at 22.35 last night, a Saturday evening! He said he has come up with the same one as I found and is doing a referral when he is next at surgery which is Tuesday. So, it just shows how useful it is to be able to show a doctor this association.
Thanks for the responses!
I'm in Canada. More specifically in the Toronto area.
I've noticed that heat does cause the symptoms. My work has a giant window in the front and the room gets quite warm in the evenings when the sun hits the windows. I usually don't notice the heat, but I know it's getting warm when my face and ears start to burn. Cooling does help. If I'm home, then I can run my hands under cool water and get them to stop swelling as much. I actually tested elevation last night after reading that you elevate for relief, carterdk. It makes a difference, but the moment I drop my hands down lower, they just start to flare again. I just have to wait until it's over. Usually less than an hour for me at this point. I'll try gloves to see what happens.. I'm assuming they should cause a reaction if they get hot?
Yeah, anything that would raise the internal temperature in the affected limb. You could try wearing a glove or simply putting your hand under a blanket. You would be looking for an abnormal autonomic response, namely localized erythema (redness) and heat in the affected limb. Many individuals with erythromelalgia also find hot showers and baths can invoke a flare.
tsaritsa said:
Thanks for the responses!
I'm in Canada. More specifically in the Toronto area.
I've noticed that heat does cause the symptoms. My work has a giant window in the front and the room gets quite warm in the evenings when the sun hits the windows. I usually don't notice the heat, but I know it's getting warm when my face and ears start to burn. Cooling does help. If I'm home, then I can run my hands under cool water and get them to stop swelling as much. I actually tested elevation last night after reading that you elevate for relief, carterdk. It makes a difference, but the moment I drop my hands down lower, they just start to flare again. I just have to wait until it's over. Usually less than an hour for me at this point. I'll try gloves to see what happens.. I'm assuming they should cause a reaction if they get hot?
Just looked up Oxford University and did a search for EM it came up with two results one was someone in Holland but the other someone at Oxford, but he seems to be more into the peripheral neuropathy cause, which in my case it could be. However, the problem is that I did have nerve tests done years ago and they said it was only mild not enough to make me as bad as I am. It was a registrar neurologist I saw and he said it could be small fibre nerve damage as that wouldn't show on the normal nerve test and recommended a skin biopsy. However, when the letter arrived with the GP it was from the consultant who I hadn't seen and he said that wasn't necessary! At the time I was annoyed, but there were other things going on and so I just left it. Apart from that I do have two things that could be the cause and that I have a diagnosis of one is rheumatoid arthritis and the other is thick blood i.e. high red blue cell count. I have poor circulation and recently I talked to a doctor about having the skin biopsy and he said it wouldn't be sensible at the moment as I have poor healing. I have two ulcers on my feet at the moment. So, I think it's a matter of pick which one is causing the EM or all of them. I am being referred to a dermatologist who has heard of EM so I am hoping that he can come up with something to find the cause by referring me to somebody else. I am currently under a rheumatologist but he seems to have no knowledge of EM. As for my high red blue cell count I had the JAK-2 test which came back negative and so he said no further treatment required, except to try a low dose aspirin which I have been doing but it hasn't changed a thing.
sheltielife said:
Hi, Thanks for the Oxford info may well have to do that.
NP2010 said:OK just curious because the 2 doctors in the US are at Mayo Clinic that specialize in it. I know University of Oxford is doing studies, so you may want to contact them and see if they can recommend anyone in the UK. Thats how I found Mayo Clinic. I emailed Dr Waxman who does most of the US research,
sheltielife said:Amazing this should crop up. For years I have thought I had EM but I never told a doctor that's what I thought it was and then there were more serious things to think about with both my husband and I and it got put on the back burner. However, recently I have been trying to find out more and this group has been wonderful all the information is incredible. It was looking on the internet that I found the association. So, mine is only self diagnosed at the moment. I recently changed GP for other reasons, not the one I was seeing, but the practice and it's the worst thing I ever did, as my normal GP was wonderful. I changed back to him this week. I am in the UK.
He came to visit me on Thursday as I just can't get to the surgery at the moment as my feet and legs are so bad all the time unless I have them in a bowl of cold water. He was here for about an hour, which is incredible for the UK. I showed him this association and he looked at the photos then looked at my legs and feet and immediately agreed that it looked very likely that I was right. He had actually heard of it, which is a miracle in itself, but he said he had only ever known once case previously in 30 years. I do have rheumatoid arthritis and thick blood. However, he suggested that I see a dermatologist. I said I would pay to see him rather than wait for the NHS. So he said he would do some looking up and then refer me to one. I also did my own looking up and found one in Truro, Cornwall, which is only 25 miles away. He has his own personal website and I could hardly believe my luck when I saw that he knew about EM! So, I wrote an email to my GP and he replied at 22.35 last night, a Saturday evening! He said he has come up with the same one as I found and is doing a referral when he is next at surgery which is Tuesday. So, it just shows how useful it is to be able to show a doctor this association.
@ Sheltielife. I have been AWOL recently due to burning. What are you trying to find out? Where studies are taking place or EM aware Dr in UK ? Im in UK myself :)
Whilst EM commonly known as heat intolerance , extreme cold also reportedly induces EM flares. EM- Raynauds ' burn' can be differentiated from skin perfusion /livido. Much less common . Alina and I suffer from hot/cold EM and Raynauds so can validate this is actually so.
HI mads, Well, it's all a bit confusing really! I haven't particularly noticed a flare in extreme cold, but then again I must say I haven't been anywhere in extreme cold for a long time! A lot of it is because I just can't walk anywhere, at the moment I am stuck in my wheelchair around the home! I used to do a lot of walking and mountaineering and would love to go walking again along the coastal path. Mountaineering is a different matter as I am 66 and have rheumatoid arthritis as well so that is definitely out of the question. I must have said previously I have had this undiagnosed as yet, for many years, starting with my feet just hurting a sort of burning pain that I could never explain to doctors. At the time they said I was diabetic, which I wasn't it was due to Cushing's Syndrome caused by a tumour on my adrenal gland which was removed last May. So, I think they jumped on the nerve damage bit and said that was the cause. Even though the nerve test didn't show much damage at all, but I never had the skin biopsy to check for small fibre nerve damage as the consultant said it wasn't necessary. It gradually got worse, first spreading to the palm of my hands and then further up my legs and now is up to just under my knee about 4 inches below. The next thing the doctors said was it was capillary fragility due to the Cushing's Syndrome but it hasn't got any better since last May and is going worse all the time. Then last September I took the top surface of the skin off the back of my heel and it got infected, the doctors said it wasn't even though there was yellow puss showing eventually they agreed and put me on antibiotics but it still wasn't right and became an ulcer, which has just about healed in the last couple of weeks. Then they found another ulcer on my little toe on the other foot, which still hasn't healed. About 3 weeks ago it hurt like mad to put my foot to the floor and I couldn't see what was going on and a neighbour looked and said he could see blood under the surface of my skin. Since then the skin has broken. I have been going to podiatry and the said it was getting better. Oh yes, one doctor said it was cellulitis and gave me antibiotics for 2 weeks, but they made no difference. Last week they said that the place that the blood was coming through was getting better, however the last couple of days there is blood coming through the dressing. I go to podiatry on Thursday. I know for sure that I am a lot worse when it's hot. I have been given all sorts of drugs non of which have helped at all, the only help is my bowl of water, not too cold, but colder than room temp. I changed back to my old GP last week and he came to see me on Thursday. I showed him this website and he agreed that it looked like EM and he had only ever seen 1 case in 30 years. I was told recently that a skin biopsy might not be a good idea at the moment with my poor healing. So, he said the best option was a dermatologist and he is doing me a referral when he is back in surgery tomorrow. I have picked one out and am paying to see him at The Duchy Hospital in Cornwall. He has his own website and actually mentions EM and so he must know something about it, but how much I don't know until I see him. I hope this explains my situation and yes, I did want to know who there was in the UK that knew anything at all about EM. Whether this one will know enough as I said remains to be seen. His name is Dr. Tom Luke his qualifications say MA (Cantab) MBBS FRCP if that means anything to you.
mads said:
@ Sheltielife. I have been AWOL recently due to burning. What are you trying to find out? Where studies are taking place or EM aware Dr in UK ? Im in UK myself :)
Whilst EM commonly known as heat intolerance , extreme cold also reportedly induces EM flares. EM- Raynauds ' burn' can be differentiated from skin perfusion /livido. Much less common . Alina and I suffer from hot/cold EM and Raynauds so can validate this is actually so.
Sorry I knew I would forget something there is my high red blood cell count as well
sheltielife said:
HI mads, Well, it’s all a bit confusing really! I haven’t particularly noticed a flare in extreme cold, but then again I must say I haven’t been anywhere in extreme cold for a long time! A lot of it is because I just can’t walk anywhere, at the moment I am stuck in my wheelchair around the home! I used to do a lot of walking and mountaineering and would love to go walking again along the coastal path. Mountaineering is a different matter as I am 66 and have rheumatoid arthritis as well so that is definitely out of the question. I must have said previously I have had this undiagnosed as yet, for many years, starting with my feet just hurting a sort of burning pain that I could never explain to doctors. At the time they said I was diabetic, which I wasn’t it was due to Cushing’s Syndrome caused by a tumour on my adrenal gland which was removed last May. So, I think they jumped on the nerve damage bit and said that was the cause. Even though the nerve test didn’t show much damage at all, but I never had the skin biopsy to check for small fibre nerve damage as the consultant said it wasn’t necessary. It gradually got worse, first spreading to the palm of my hands and then further up my legs and now is up to just under my knee about 4 inches below. The next thing the doctors said was it was capillary fragility due to the Cushing’s Syndrome but it hasn’t got any better since last May and is going worse all the time. Then last September I took the top surface of the skin off the back of my heel and it got infected, the doctors said it wasn’t even though there was yellow puss showing eventually they agreed and put me on antibiotics but it still wasn’t right and became an ulcer, which has just about healed in the last couple of weeks. Then they found another ulcer on my little toe on the other foot, which still hasn’t healed. About 3 weeks ago it hurt like mad to put my foot to the floor and I couldn’t see what was going on and a neighbour looked and said he could see blood under the surface of my skin. Since then the skin has broken. I have been going to podiatry and the said it was getting better. Oh yes, one doctor said it was cellulitis and gave me antibiotics for 2 weeks, but they made no difference. Last week they said that the place that the blood was coming through was getting better, however the last couple of days there is blood coming through the dressing. I go to podiatry on Thursday. I know for sure that I am a lot worse when it’s hot. I have been given all sorts of drugs non of which have helped at all, the only help is my bowl of water, not too cold, but colder than room temp. I changed back to my old GP last week and he came to see me on Thursday. I showed him this website and he agreed that it looked like EM and he had only ever seen 1 case in 30 years. I was told recently that a skin biopsy might not be a good idea at the moment with my poor healing. So, he said the best option was a dermatologist and he is doing me a referral when he is back in surgery tomorrow. I have picked one out and am paying to see him at The Duchy Hospital in Cornwall. He has his own website and actually mentions EM and so he must know something about it, but how much I don’t know until I see him. I hope this explains my situation and yes, I did want to know who there was in the UK that knew anything at all about EM. Whether this one will know enough as I said remains to be seen. His name is Dr. Tom Luke his qualifications say MA (Cantab) MBBS FRCP if that means anything to you.
mads said:@ Sheltielife. I have been AWOL recently due to burning. What are you trying to find out? Where studies are taking place or EM aware Dr in UK ? Im in UK myself
Whilst EM commonly known as heat intolerance , extreme cold also reportedly induces EM flares. EM- Raynauds ’ burn’ can be differentiated from skin perfusion /livido. Much less common . Alina and I suffer from hot/cold EM and Raynauds so can validate this is actually so.
With my mom. . . her burning foot syndrome has almost always been basically a hair trigger like flare that could happen any time in the past 14 years. She basically has a level 7 pain on a scale of 1 to 10 and it flares to 10 or (even higher) as she at times claims.
With her there were different diagnostic tests. Her's seems to have been a result of nerve damage which was likely due to a drug reaction to Risperdol. Her flare up really never ended. She requires a cool medical chilling procedure, meaning we use a make shift procedure to cool the feet. Regarding her onset of symptoms they were accompanied with a fungal like infection as well. And her skin in her feet looked and still often looks terrible. Partly because of perhaps that infection and maybe other ones. Her toenails were in pain as well. Sharp pains, not really any numbness, but spikes of pain like the pulling out of her toenails. He toenails are also damaged or gone from the early symptoms. In her case, she had some tests which included a skin biopsy from the bottom of the feet which didn't show, "Abnormal cells". Abnormal cell mophology(spelling) supposedly is present in 80 percent of the cases with skin biopsy's from the bottom of the affected feet of burning foot syndrome, at least that was one reported case. She had also "nerve velocity" studies, which involved putting needles in the inside of her legs for the tests, above the ankle, from what I've heard. Those caused pain and some pain, as if the needles are still in them still exists from time to time even 8 years after the tests according to her. In her case the "nerve reduction" of 50 percent was reported, which might mean she has a kind of neuropathy? I state that as a kind of question, because the neurologist never gave a definite diagnosis based on that 50% reduction observation.
Her feet flare and get hot. This usually starts at the bottom of the feet and travels up to other areas, according to one medical observer. The feet also can flare or I'll get complaints localized to one part of the foot, for example a toe alone may flare or some of the toes or the side of her foot may flare. The flare can extend up to her calves of her legs, especially after walking. She sits with her feet elevated on a pillow. Much of her body and skin even on the ankles and legs often is colder in response to the cold environment, which is cold air blowing over her feet. The rest of her body often will not flare up and experience hot flash like pains. It's also interesting to note in her case that changing from Lisinopryl to Metropolol, for blood pressure, didn't help her at all but caused hot blood and feelings of that to appear in her upper body. She takes high blood pressure pills for high blood pressure. High blood pressure may result from pain and treatment of that using blood pressure medication may exist. It can become a kind of pain and high blood pressure cycle. High pain can cause a spike in blood pressure and high blood pressure can cause the feet to burn and swell and cause more pain, so the two can feed off each other, at least in my mom's case.
There are also other conditions that can exist at the same time or perhaps be misdiagnosed. For example she has a hot flare that can exist in one or both legs up in the calves when she walks a short distance to a bedside commode or toilet. This flare causes localized heat and swelling of the leg which turns hot red. When I say hot, I mean hot compared to other skin temperature. You can get a skin temperature sensor and see the effects of localized heat happening by pointing the thing and bouncing the IR sensor off the person's skin, and measure the surface temperature of the skin. For her, the temperature of her feet may be 101 F during a flare while other parts of her body are 98 degrees or lower, that is skin temperature is different. Also at times under cold air, her legs may show a skin temperature of 70 degrees, which is cold which is what my legs or feet would show when cold under blowing air at 60 degrees chilled by an air conditioner. The skin temperature of a normal person and even on parts of her exposed leg may be 70 degrees, this is not the same as the core temperature, but just the surface temperature. Normal people would have a feeling of being chilled, but her burning feet, won't measure necessarily a temperature per say that would be uncomfortable to a normal human being but perhaps 97 degrees a lot of the time, during a flare, and that regular temperature is accompanied by red skin and swelling in other words classic burning foot syndrome symptoms. In that case, her feet which should feel normal after all my feet could be that temperature in a normal room and feel fine, still feel hot to her. So it's not just that her feet are running a temperature, but they are running a "higher elevated" temperature compared to the surrounding normal reaction to the environment. So we have to chill her feet, but warm other parts of her body by wrapping her up, if we are using air chilling by Air conditioners for the entire room and blow that air across her feet on pillows.
Recently our home visiting doctor saw her swelling and hot legs and said she had a skin infection that caused the legs to swell. I mentioned this is a normal reaction for her afterwards, but the doctor said this was what she had, via the doctors observations. I asked if a blood test would show cellulitis and the doctor said, "no". At times in the past when she first came down with the problem ER doctors said her feet had this same infection and claimed antibiotics would help and heal her. But they didn't. However at times antibiotics have helped her, or that was her perception, saying she felt better.
She received one treatment of a strong antibiotic and claimed it helped her a bit. She wanted a second weeks treatment and was given that. She claimed it seemed to help a bit. And thought she might be on a road to recovery, but this might be wishful thinking or positive thinking. She also reacts well to a really low mild dose of muscle relaxer added to the mix of her pain pills and pain patch. But this will take her to a point of being tired and getting more rest which may help as well. The Muscle relaxant seems to help a little bit, by helping I'd say her condition is maybe 5% better to 15% better meaning 85 percent of the time or more she shows no improvement, but this helps some and her "pain patch dose" was reduced and she adapted to a 50mg pain patch down from a 75mg pain patch, fentenyl pain patches are a part of her life as is Norco.
It's difficult to say if tests do much or really told us much. In our case with the muscle relaxant, and it's a really low dose, this added some help, but also lowered her blood pressure more added to the other drugs, which is a cause for guarded concern at least at first, when watching her as a care giver. The doctors are concerned with her being over medicated if the medication causes her BP to go to low. It's interesting to note that she had low blood pressure before burning foot syndrome but has high blood pressure, likely quite a bit higher since she has developed it. Her blood flow is good and she has good circulation, maybe to good.
With the muscle relaxant, added to her mix her blood pressure is lower and she gets more sleep from time to time, which is good. She is also restless, either from the frustration of being homebound or other reasons (almost like a manic energy state). She gets about 3 hours sleep per night plus naps during the day. Sometimes long naps of 2 or 3 hours which usually results in her being better, but may reduce her sleeping at night.
The muscle relaxing pill caused her system to change a bit, that is at times her feet will be out of a flare and be cold to the touch and cold and more purple looking. It's not a red hot but more of a purple looking which can happen to feet if they are immersed and almost frozen in ice water. That reminds me of more of a neuropathy like or diabetic dead nerve condition. So it's interesting to see that at times, her feet have reacted differently due to the added muscle relaxant being used. The scary thing of course is are the cold feet episodes due to low blood pressure reactions that is we are simply lowering her blood pressure with added medication and this is just a general lack of circulation? I guess that would be the negative way of looking at it. We rarely use cold water immersion but use spray water to cause cooling by evaporation. Since her muscle relaxant pills have been added, and these were added for a different injury but had this effect on her feet, since that, we've seen some periods of her feet being cold and we use thin cotton socks, Buster Brown brand, which can be on her feet from time to time and they can be sprayed to cool down her feet, as the socks stay wet. So they help with chilling with the cold fans blowing over her feet and with warming at times if her feet feel cold which is really a fairly new reaction since the muscle relaxers were added to the mix.
Nerve velocity studies and samples of cells, may help at least give you some idea what is going on. I suppose that did help us a little bit, but overall both procedures seemed to hurt her a little bit and she complains about them. I'd say overall her nerves in her feet are "over-sensitive" to touch and painful. It's not like a numbness or neuropathy, at least not her case. It's more like an oversensitivity. Also her feet react to diet and things that excite her. Basically sweet, hot spicy foods and even warm foods affect her feet. Salt is bad as well. Even getting emotionally excited is bad.
These problems may have resulted in her situation as a result of taking a lot of different nerve medications over the years, which were being taken after she had "hot flashes" and for other ailments. She is 76 now, but has had the problem for 14 years now. Just throwing my subjective experience example in the mix. And the doctors who have seen her have all basically said she was the first case they saw. And also some said, the worse case, meaning I suppose the worse case they have heard of.
He feet also respond to topical Lanocaine cream, but everyone is different.
It's also important to note, with my mom, she has feet that look bad, they look terrible, like a person who has bad diabetic feet and neuropathy. But people with neuropathy often loose muscle mass and can't walk or use their limbs. In my mom's case she doesn't lose strength. She has the benefits of a kind of a diabetic like foot without the numbness masking for the most part. So it's almost like her Burning foot syndrome is the opposite of neuropathy. She may lose weight, but it's not localized, it's probably due to the restricted diet and being in a cold environment and having to burn more calories to keep the rest of her body warm. We also use heating pads and covers and wraps on the other parts of her body to keep the rest of her from freezing in the cold 60 degree room.
Your poor mother Watchman. She is lucky to have you taking such care of her.
Her situation just shows how different we EMers are from each other. Living at such a low temperature would cause me to have permanent flaring and chilblains on hands and feet. I need the cold to get rid of a flare but conversely being cold for long makes me feel ill and aching and results in worse flares than keeping reasonably warm. I know Alina too needs to keep the temperature very low and the thought of it makes me shudder. However I couldn’t possibly tolerate heating pads on any part of me, nor can I wear extra clothing to keep warm. It is a strange syndrome!
It certainly is, Nel. It's probably more accurate to describe erythromelagia as a symptom with many different causes. Much in the same way anemia is a symptom and not a disease.