Glad to find out that you have a diagnosis. In some ways you might be a bit lucky to have that diagnosis compared to a more pure EM. You may find you have more functionality with that condition than with a purely HOT EM condition.
THIS IS A LONG POST so many may want to skip it, but briefly it’s about drug reactions and some possible reasons they are causing EM. It’s basically my lay theory, but it’s based on knowledge that is easy to find on Wikepedia. When it doubt verify this stuff with a doctor, preferably a neurologist who knows a ton about nerve conditions.
I want to mention that some in trying to treat EM end up getting Raynauds like symptoms. It’s as if the medications can push effects like “Serotinon sydrome” and that can lead to cold episodes and Raynauds. This has happened with my mother at times, but it’s kind of rare. The cold episodes of the feet with numbness are extremely rare for her and actually a relief when they happen, compared to the burning. As an example Flexerol added to the mix of my mom’s pills might push serotonin syndrome which can cause cold raynaud’s like symptoms.
I also wanted to mention that taking zoloft might be a thing that caused it or triggered a mild version of it. I have a theory on this but I’m not a doctor, you need to talk to doctors and often a neurologist to get more information on this.
Here’s what I’ve found from this board but also from Wikepedia and some "rare side effects of course listed. Some of this may be related to others and some rare reports and some is related to my mom’s condition, which you can read about in other posts. I’ll try to be brief and I’m giving my mom as the prime example as she took two medications which gave her burning feet and one that might have also caused it temporarily during the course of a "rare treatment of it’.
- She took Xanax and had mild burning feet symptoms without pain. That was a sign of possibly worse things to come, but we didn’t realize it. It could have been a sign we should have taken to beware of other drugs, but we had no way of knowing what would happen later. So she got off the Xanax and the symptoms resolved. Xanax doesn’t have much to do with Serotonin however. It blocks or acts on other nerve channels GABA, so it’s a possible sign of a EM problem, but I don’t think it was her main problem. But don’t ignore signs. My guess is if one nerve pill can cause EM like symptoms, there may be others that can as well, because they may affect the nerves in a similar manner.
(Also note the nerves and how they act are very complex and there are many bundles of different types of nerve cells and even the experts are still learning more and more. The guys who know the most about this are often neurologists.)
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She took Risperdol. Which has a rare side effect of the “body losing it’s ability to control it’s own temperature.” Now here is what is interesting. You can take ONE DOSE of Risperdol, just one dose and it can cause irreversable damage. So it’s not like you can test it, in this case I believe from what I’ve heard it can do this. It can cause Irreversable antagonist of the 5HT7 serotonin receptor, which is one of seven receptors in the 5HT (Serotonin) sites that can affect blood flow, or temperature. There are seven receptors that Risperdol can affect, but it’s antagonist effects (slowing down or stopping the channel, blocking the signal) can be permanent for 5HT7 where other sites blocked may not be permanent. So that to me makes Risperdol very dangerous to a few rare individuals who seem to be more prone to be affected by this dangerous drug. Of course this is my lay opinion based on the hell we descended into from this drug in 2002.
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Now 6 weeks of taking this pill over that course of time, her feet started burning, really badly with ten level flares and never stopped. Heavy duty drugs took down the pain a bit down to 7 level but environmental chilling and lack of activity was required. It took us over a year to find drugs that started to work and she ended up getting a lot of pain medication which has been a constant part of her life since 2002. Risperdal and EM destroyed our family life, basically taking out three people from any chance of a normal life.
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What’s interesting however is some “cures” which are rare and help, not really a cure but a way to reduce the pain include something like Ketamine cream which also contain amitriptyline which has been studied by Mayo Clinic specialists as a possible way to help some with burning foot pain. The lowest level dose of 0.5% ketamine and 1% amitriptyline cream has been tried by some with good results. The amitriptyline is a tricyclic antidepressant, and supposedly would calm you down from the side effects of ketamine. Some who have tried this cream have reported a feeling of “heat” for the first few minutes, perhaps up to five minutes once the cream is first applied to the feet. My mom tried the cream with this mixture and had the heat feeling at first, her feet felt warm, then the ketamine kicked in and reduced pain for up to 12 hours, almost equivalent to the foot being numbed by a nerve injection to numb the foot for an operation (tibial nerve block). The Ketamine cream knocked down her pain to a level 2 or 3, so low it was not really even a distraction. It was perhaps 5 to 10 times more effective than Opoid drugs. It might have an additive effect with the pain killers as well which might have helped, but there is no way opiods alone could have done it because to take the same level to get that effect with opoids alone would have killed her.
But she had some other side effects,with the Keta/amatriptyline mix. When I started to research the side effects the amitriptyline, which can also be administered as a drug Elavil, for depression or anxiety I suppose, has some side effects which mom thought was due to the ketamine cream. So I wanted to try the Ketamine without the amitriptyline, which we tried in another test. But also I found something strange about amitriptyline. In looking at Wikepedia, six of the seven 5HT Serotonin nerve receptors affected with an Antagonistic effect by Risperdol are also affected the same way with amitriptyline. It stops or inhibits the activity of these same sites which affect vacsular dialation or construction - blood flow and temperature. So amitriptyline might be causing the same seratonin side effects that Risperdol causes which could cause (in my mom’s case at least) EM.
Some have reported that amitriptyline helped their EM symptoms, others reported that they started to have EM symptoms when they were on Elavil (amitriptyline). So that’s an interesting sign or data point.
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Now you’re mentioning Zoloft as causing some burning symptoms. So I fire up Wikepedia and look for the effects of Zoloft on the 5HT sites, of course it’s a nerve medication and Serotonin sites are nerve sites and maybe it effects them. Well it does effect one of the receptor sites in the Seretonin or 5HT receptor. Site 5HT2 which can affect blood flow. So there’s another clue. These antidepressants, being used naturally to help in other conditions, might trigger nerve or foot problems with some people. And of course if you read about Serotonin syndrome which can happen from many mixtures of drugs, you’ll find it can cause neuropathy symptoms, but Serotonin syndrome and poisoning is usually a quick problem, that can be quickly resolved as the drugs leave the system. Some “treatments” may be pushing the 5HT sites and give Raynauds like temporary symptoms, which could mimic some kinds of neuropathy. (There are 100 kinds of neuropathy and to make things more complicated one could have more than one type of nerve damage in play.) And EM is something that can happen with nerve damage almost anywhere in the pathway, including the DRG and brain. EM is even a interesting proof that neuropathic pain exists as pain from something other than damage to the site experiencing the pain.
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So I’m thinking but is based on my thoughts on the 5HT sites, if you have mild burning foot symptoms, by all means try to avoid amitriptyline, or Risperdal at all costs because they might make your foot condition much worse. A mild version of burning foot syndrome which is caused by some drugs might turn into a major one with other drugs that do the same activity on the nerves. So I’d suggest erring on the side of caution.
Now what do the doctors say about my mom’s condition? Well her MD that was treating her for many physical things, but didn’t prescribe the Risperdal said, the Risperdal clearly was the cause of her burning foot syndrome. It did her nerves in basically.
Is the 5HT activity (it looks documented, but I’m not a medical professional) a good theory about the nerves? Well I think it is, but when I ran it across her current MD and showed him some documentation he was very cautious and careful in how he answered me. He said, “I’m not saying your theory is wrong” but he cast a lot of doubt on it, making it seem that it was unlikely. It seemed like a kindness in his statement, but he seemed doubtful regarding my theory. He had one question which is a pretty good question for me, which was if it affected her nerves on the 5ht and caused this damage, then “WHY DOES IT ONLY bother HER FEET?” this was a very interesting and intelligent question.
And I’m not going to say I’m sure I’m correct in my theory, and be so proud that I must have the right theory about this. I can’t necessarily prove my theory is the correct one or the mechanism, but it sure looks like the smoking gun to me. When I mentioned that it appeared that Risperdal caused it. . . I also stated to her current doctor, “I know Risperdal is supposed to be very safe” . . . I was saying that drug was very safe based on common quotes I used to hear from many doctors or pharmacists, so that’s old knowledge I would now say. The MD countered with “Risperdal isn’t very safe at all, where did you hear that?”, he continued to say it’s full of possible dangerous side effects. He basically didn’t give Risperdal any kind of free pass which others seemed to give it. But he also added that maybe Risperdal didn’t “cause the damage” but brought out a flaw that my mom had or brought out a disease she had which would cause it.
To me as a lay person it’s kind of a mincing of words, or playing with words. It’s like you are passing the blame back to the patient and saying, well it doesn’t cause the problem like a poison, it just so happens to be for your genetic makeup (in this rare case) it caused your flaw to appear. From a practical matter, to the patient, it doesn’t matter how the drug caused it, the fact remains the problem appeared with the drug and as some kind of result of it being in their body, and the damage is still a problem.
So my opinion, but take it with the grain of salt from a person who is just a caregiver, but my opinion is some of these medications for brain function that affect nerves and “pass the blood brain barrier” can obviously affect nerves in such a way to cause permanent nerve damage and EM or burning feet. Hopefully the medication can cause a temporary loss of function and it can be resolved as soon as you get off the medication. In that case you would be a lucky person, but in some cases, the damage can be permanent. In my mom’s case it seems it has been. Now of course her case is a rare case among EM cases, not perhaps the worse case, but one of the bad ones. I also want to note that one doctor tried to prescribe Risperdal again after we had said and showed it clearly caused her burning foot problem. This during a subsequent hospital visit. And again, in our records I found Elivil was prescribed but quickly was stopped, because it didn’t work for her some time back. I didn’t reven realize that is was amitriptyline, nor the commonality of effects it might put on her nerves at that earlier time - back in 2006.
Some have mild versions of burning foot syndrome, and I’m not writing about my mom’s severe case to scare you, but I’d urge caution if you’re case started with a side effect, other drugs have side effects as well. So be careful out there.
Also there are some who have burning foot symptoms that are more mild or temporary or related to other diseases and can fluctuate. They may have burning foot syndrome but cold and numb feet as well with other types of nerve damage or an overlap of many nerve problems or medical conditions. So they may not all respond to different treatments the same way.
Many people for example have burning foot flares as a result of diabetic foot conditions. And these number in a large group. There may be many remedies that are geared toward the occasional flare and often cold neuropathy, that might not work on other types of neuropathy at all which seem to be more exclusively hot EM rare burning foot conditions. Some who for example have Small Fiber Neuropathy, may have burning feet, but never cold feet. They only have cold feet if they freeze them, not from a medical condition. And they may have cold feet temporarily if they are mixing medications and causing Serotonin syndrome like symptoms which can push the EM disease toward Raynaud like symptoms. A person with EM may push or counter the disease to a numb cold symptom with drugs, but often when they stop those drugs the EM hot condition will return.
I like to think of EM as being a kind of sensory thing like a roadway. With temperature readings on the left side being cold temps and on the right side being hot temps. And the normal person might have comfortable feet like cool feet but not to cold at 85 degrees F and still a wide margin, maybe up to 102 degrees with them being warm but not uncomfortable. But in my mom’s case that roadway has become very narrow like a foot path. And there is a sharp cliff on both sides. And the normal temperature on her road way is now very narrow. She wants her feet to be 85 degrees or even colder down to pre-fostbite like temps to feel numb or normal. If the temps rise to 90 or 95 my feet will feel fine, but her feet will start to swell and get red and hot and be in pain. So it’s almost like a strange condition where the pain sensors or nerves bundles are so damaged, that their latitude for what is considered normal is missing entirely. It’s like her feet want to be cold like on a dead corpse, to feel okay. Anything that creates heat, action, activity, stress, foods, anything that gives normal life, can cause a trigger in her case. It’s like her feet want to die, to feel normal. I hate to put it that way and sound dramatic, but that’s how they seem to act.
Well I’ve written a rather long post. So I’ll stop now.