Hi,
My 12 yo son was just diagnosed with Erythromelalgia. I am wondering if anyone has seen any relationship between this and ADHD and or Sensory Integration DIsorder?Also wondering if anyone has had any success with any alternative therapies like accupunture or Cranial Sacral work?
He has been put on neurontin and will start that today for lack of any better solution to stop the excruciating pain.
Thank you
Jame
Welcome Jame.
I have a 12 yr old son with ADHD, sensory issues and learning disabilities living with erythromalgia.
We started seeing the symptoms a few years ago but didn’t start seeking help until last spring when it became so bad he was missing school and suffering damage to his flesh during flares.
We have not saught a treatment yet and his Dr.s do not have any recommendations at this time. He was seen by a pediatric rheumatologist from Seattle children’s hospital who advised us to take him to their adolescents clinic for biofeedback. There are many problems to doing this as it would require us to be hundreds of miles from home for two months, unlikely to be covered by insurance and uncertain to help.
We have an appointment with a specialty pschyatrist in a few weeks who we hope can help us figure out if his current medications are causing or confounding the EM.
Does your child take psychiatric meds? Ours has Vyvanse, Floxitine, and Clonidine. All of which I have found at least one reference to EM symptoms when googling.
Also, how did you come to this diagnosis? I had to being my own research in to our Drs to get ours and then to have it confirmed by the rheumatologist.
Hi,
How have you treated his flesh damage, as Sam has some now and could not go to school from the pain. I am also wondering if anyone has used medical marijuana for this condition as alot of the neurological meds have other side effects. Additionally, Sam has also had a history of vit D deficiency and I found some case study that was cured of the condition after vit D supplementation was given. Interesting since you are in Seattle and Vit D deficiency is common there because of the lack of sun. (lived there for 7 years)
I have a theory, at least in the case of my mother. This is our best guess as to the cause of her EM symptoms. It was due to drugs in our case. Now we can't say that for certain. But she was on Xanex and Thorozane for years. On Xanex she had some hot flares or burning feet but it was low level and more of an annoyance. That likely was a sign. If you have minor symptoms, by all means be careful with other drugs you take, because that could be a bad sign and make things worse.
So she was on Xanex but dropped it. Then was on Thorazane. These for Anxiety and Fear supposedly, but there was a hidden diagnosis that she had which we were unaware of from a psychatrist. The Psychatrist gave her Risperdol to help her get of the Thorozane. She was taking Thorozane and Risperdol at the same time and within 6 weeks the burning foot symptoms really flared up into debilitating flares. We stopped taking both pills and tried all kinds of pain killers. Within a few months we heard of the diagnosis of Burning Foot Syndrome and tried drugs like baby asperin and Tramodol, and other medications that supposedly help people with burning foot syndrome with no help.
Mom's pain has been constant, meaning a constant level of pain, unless her feet are frozen with ice water baths, which is only a very short term fix and that is something we used to do at times, but we don't do anymore.
Her pain is constant at a level of about 7 on a scale of 1 to 10 with ten being in sight whenever she walks or with any activity that gets her blood pressure pumping.
Without going into more of her symptoms, let me state that we strongly feel that this was a result of Risperdol. The nerve damage or problems that happened, however resemble other possible causes as well. Risperdol may have been a trigger for us, or maybe I have got it wrong. One thing to consider is these nerve medications can alter neurotranmitters and signals in the brain and these can perhaps effect nerves elsewhere in your body, the autotomic nerves send message to increase blood flow to parts of the body automatically. If these nerves are somehow damaged or perhaps depressed and become use to a level of suppression, when the suppression is removed, they may be overactive or perhaps a damage to them will cause them to function incorrectly. So I highly suspect medications that affect the brain chemistry could affect nerves elsewhere in the body and cause damage.
Consider that this is an opinion from a person who is not in the medical field. I've lived with and cared for my mother who has had this for over a decade however.
Now in our case, there were other symptoms of problems which may have caused the burning foot syndrome. She had an infection that was basically ringworm with sores in her mouth and on other parts of her body when the flaring happened. We guessed at many possible causes including a scratch by a cat. We live in the USA. It's interesting to note that there are other causes, rare causes of EM that may relate to the primary source of EM. A Nav 1.7 sodium channel defect which is a genetic thing.
We like so many others ask what could it have been? Could it be a rare Poxvirus related to a virus that affected Chinese students that somehow caused it? Could it be from some fungal infection that travelled through her body? A reaction to stubbing her toe, which happened? Or a drug side effect? which is our chief suspect.
We live in the great state of Michigan in the USA. One of the "great things" about living in the state of Michigan is governor Engler and a Republican group of lawmakers created a law back in 1994 in Michigan that prevents people from suing drug companies for bad drug side effects from drugs. Supposedly if the FDA says it's safe, then it's safe. And we have no recourse or way to recoup costs if drugs caused the problem and put a huge expense on your family.
What does this effectively mean? Well we have a two year statue of limitation on malpractice with doctors as well, so by the time you figure out you have EM and that it may have been caused by a doctor prescribing drugs. Well can you blame the doctor? It may just be a rare side effect, and some people will not want to or be predisposed to suing doctors. My parents for example believe in "sue no man" as a theology and way of living. So they would not be predisposed to suing their doctor and liked the doctor who prescribed the drugs, even if the drugs may have hurt them. So the doctor gets a pass. My mom would have liked to have sued the makers of Risperdol. But of course there's a law that states we can't sue them. So if we were in any other state we could sue them. There may be a way around this in our case, because part of the time we were traveling out of state when she was taking the medication, so we might argue part of the damage happened when we were outside of the state of Michigan on a trip to Florida. But I doubt this would stand up in court as the prescription happened in Michigan and we live in Michigan. So we and I may say anyone who lives in Michigan are effectively medical test dummys for the drug companies. Your doctor can prescribe anything they want off label and try it and experiment on you as a patient and try things. Then report the results to the drug companies if you live in Michigan. And if you're damaged by that, there is no legal recourse (except perhaps to sue to doctor).
How bad is my mom's version of EM? Well it's constant. If I measured the amount of time I was around during the past 13 years and replaced myself with a hired aid, it would cost $400,000 to $800,000 just for a basic aid to be here. For 24 hour care, which is what we give her (my father and I) we are talking about close to one million dollars every decade.
If my mother lives 20 more years, that's about $3 million in expenses for just one helper. That doesn't take into account the cost in terms of what we missed, because we are not rich and how it affected our lives in other ways. We certainly would appreciate some help from the chief suspect of our EM flare which is the makers of Risperdol. One of the rare side effects of Risperdol is the "bodys inability to control it's own temperature". Now perhaps we are jumping on that medication because we took it and the flares happened while taking it and never stopped since. Perhaps it was some other drug.
My mom has restless leg or feet that move when she is awake. There are several other things we have found that are interesting as well. Over time you will find things that work and don't work. We only get reduction in pain, until recently and have had no real relief from drugs in our case. She is on Cymbalta (which she thinks helps the pain, but we have no way of knowing if it does and it causes other side effects). She is on Fentynol pain patch (spelling). She is on Norco. She is taking some other pills as well but this for other side effects. She has cooling on her feet 24 hours a day. There is no times when she can walk or behave normally it's like having an EM flare or being on the edge of one 24 hours a day for 13 years. A constant level of pain. When I hear of other EM sufferers who have times of no pain and no flares I think to myself, how lucky are you. Because we have basically complete debilitating conditions.
And if you have a minor version of EM it could get worse. It might be argued that my mom was experiencing minor versions of EM a long time ago back in the late 80s or early to mid 90's under other medications and we didn't know or realize it. Then with Risperdol, came the big hit. So I'd say, but this is based on my subjective experience with my mom, most of these nerve medications are pretty dangerous and you never know what side effects will do to you're body if you take these pills.
There are some interesting new developments in my mom's case. She recently went on a muscle relaxer flexural for a pulled tendon or some injury that happened and that seems to cause her flares (at least the hot feet) to cycle. It means she gets cold and hot feet now, instead of only hot feet. This seems to increase pain or hot flares in her hands to 4 to 8 times every two months, up from 1 time every two months. So this means she has cold feet but not always hot foot issues. This means the flexural is doing something to her. It's overall effect is lowering blood pressure possibly with the other medications which could be dangerous for her and we have to watch her.
My mother had low blood pressure before she had EM. I haven't verified that baseline figure before she had EM but we know i was low compared to normal people. Her Blood Pressure is almost aways high and spikes to dangerous levels when she has a flare. She can have a flare in one foot or both feet. If she has a flare on one side, more often than not, the blood pressure on that side of her body is about 10 to 15 points higher than on the side without the hot burning flare.
Low blood pressure and low pulse will cause her feet to get cold. This doesn't however cause her pain to be reduced. Her foot pain can still be there with the new medication in the mix, even with her feet cold, so that's an interesting issue. Foot pain without heat, sounds more like neuropathy, so maybe that's a sign of more than one problem. Supposedly she has 50 percent reduction in nerve velocity which is a sign of neuropathy as well. I wonder if the flexural(spelling) is causing her feet to have less symptoms just because of lower blood pressure. Maybe if your blood pressure is low then the burning from high blood pressure is reduced. Note: BP and pain flares are often tied, but not always tied in her condition. We had one pain flare on the lower blood pressure side, so it's not always consistent.
We tried a different blood pressure medication, instead of Lisinopryl which we were using. The other blood pressure pill works differently and that pill Metropolol slow acting 25mg, two times a day - caused her to experience a pain flare that was really bad during a one day switch over to that drug. It was worse than most flares I've seen from the other medication, so we are back on the Lisinopryl (one 10mg dose per day).
The 75mg pain patch helps as well, and we leave the old patch on when we put the new one on. So she may get close to 100mg pain patch at first and we leave the old patch on her. This per neurologist instructions. WE can't use 100mg patch that is to much for Fentenyl in my mother's case.
The muscle relaxer dose we are giving her is a 5mg pill three times a day, in theory on the label but in reality it's only half a pill or 2.5 mg dose, twice a day most days. We found that a "small dose of 5mg" was to much for her, causing her to sleep for 8 hours. And this knocked her out to much. We reduced it to twice a day, meaning for example a 10 am dose would mean a 10PM dose as well. But often we don't give her the evening dose until she is in bed and she goes to bed late, around 1 to 3am. She spends 3 hours getting into bed each night, which is another long drawn out story. She often has a 21 hour schedule during the day and only 3 hours sleep at night. So it's a complete strain on my dad and I, trying to keep up with (the terminator of) pain.
Of course these comments are from my mom's experience and she has perhaps a totally different version of the disease or disease combination than others. So one cannot take the results from one patient and apply those to others. We are all still learning about this and this is a syndrome of set of symptoms.
It would be interesting to see if those who have pain flares in one foot and then another have blood pressure ratings that are higher on the side that is experiencing the flare.
I come up with other theories of course. My mother looses a great deal of sleep and gets only 3 hours a night with naps during the day. With the muscle relaxer at times she has had 8 hours of sleep at a time now, which may improve her health, getting more sleep. This is not consistent. And it's not a cure. But perhaps it's a clue on how to cope or deal with her condition.
One friend of mine who is not a doctor mentioned that it might be that my mother's system was used to the psych drugs and was used to be suppressed. When she stopped those, her system reacted and was used to them so now it's more wired (mind or mind and body) And this caused her to lose more and more sleep and the insomnia is not allowing her body enough time to rest, burning the end of her nerve endings and not allowing repair time. This is a novel idea and not likely to be confirmed by a doctor. We mentioned this theory to one doctor and he said, that might be a part of what is happening, but he didn't say that was 100% responsible for her condition or venture to say that was the problem.
It's important to note that drugs that affect nerve messages in the brain, may be affecting nerve messages elsewhere. Consider that the next time someone wants to alter your mood.
Thank you> My son was on Risperdol about 5 years ago briefly. Its a horrible medication. The doctor who vehemently denied that the meds were not the problem seemed a little less confident when he saw my sons feet. Terrible disorder. Hope we and you find a solution
watchman said:
I have a theory, at least in the case of my mother. This is our best guess as to the cause of her EM symptoms. It was due to drugs in our case. Now we can't say that for certain. But she was on Xanex and Thorozane for years. On Xanex she had some hot flares or burning feet but it was low level and more of an annoyance. That likely was a sign. If you have minor symptoms, by all means be careful with other drugs you take, because that could be a bad sign and make things worse.
So she was on Xanex but dropped it. Then was on Thorazane. These for Anxiety and Fear supposedly, but there was a hidden diagnosis that she had which we were unaware of from a psychatrist. The Psychatrist gave her Risperdol to help her get of the Thorozane. She was taking Thorozane and Risperdol at the same time and within 6 weeks the burning foot symptoms really flared up into debilitating flares. We stopped taking both pills and tried all kinds of pain killers. Within a few months we heard of the diagnosis of Burning Foot Syndrome and tried drugs like baby asperin and Tramodol, and other medications that supposedly help people with burning foot syndrome with no help.
Mom's pain has been constant, meaning a constant level of pain, unless her feet are frozen with ice water baths, which is only a very short term fix and that is something we used to do at times, but we don't do anymore.
Her pain is constant at a level of about 7 on a scale of 1 to 10 with ten being in sight whenever she walks or with any activity that gets her blood pressure pumping.
Without going into more of her symptoms, let me state that we strongly feel that this was a result of Risperdol. The nerve damage or problems that happened, however resemble other possible causes as well. Risperdol may have been a trigger for us, or maybe I have got it wrong. One thing to consider is these nerve medications can alter neurotranmitters and signals in the brain and these can perhaps effect nerves elsewhere in your body, the autotomic nerves send message to increase blood flow to parts of the body automatically. If these nerves are somehow damaged or perhaps depressed and become use to a level of suppression, when the suppression is removed, they may be overactive or perhaps a damage to them will cause them to function incorrectly. So I highly suspect medications that affect the brain chemistry could affect nerves elsewhere in the body and cause damage.
Consider that this is an opinion from a person who is not in the medical field. I've lived with and cared for my mother who has had this for over a decade however.
Now in our case, there were other symptoms of problems which may have caused the burning foot syndrome. She had an infection that was basically ringworm with sores in her mouth and on other parts of her body when the flaring happened. We guessed at many possible causes including a scratch by a cat. We live in the USA. It's interesting to note that there are other causes, rare causes of EM that may relate to the primary source of EM. A Nav 1.7 sodium channel defect which is a genetic thing.
We like so many others ask what could it have been? Could it be a rare Poxvirus related to a virus that affected Chinese students that somehow caused it? Could it be from some fungal infection that travelled through her body? A reaction to stubbing her toe, which happened? Or a drug side effect? which is our chief suspect.
We live in the great state of Michigan in the USA. One of the "great things" about living in the state of Michigan is governor Engler and a Republican group of lawmakers created a law back in 1994 in Michigan that prevents people from suing drug companies for bad drug side effects from drugs. Supposedly if the FDA says it's safe, then it's safe. And we have no recourse or way to recoup costs if drugs caused the problem and put a huge expense on your family.
What does this effectively mean? Well we have a two year statue of limitation on malpractice with doctors as well, so by the time you figure out you have EM and that it may have been caused by a doctor prescribing drugs. Well can you blame the doctor? It may just be a rare side effect, and some people will not want to or be predisposed to suing doctors. My parents for example believe in "sue no man" as a theology and way of living. So they would not be predisposed to suing their doctor and liked the doctor who prescribed the drugs, even if the drugs may have hurt them. So the doctor gets a pass. My mom would have liked to have sued the makers of Risperdol. But of course there's a law that states we can't sue them. So if we were in any other state we could sue them. There may be a way around this in our case, because part of the time we were traveling out of state when she was taking the medication, so we might argue part of the damage happened when we were outside of the state of Michigan on a trip to Florida. But I doubt this would stand up in court as the prescription happened in Michigan and we live in Michigan. So we and I may say anyone who lives in Michigan are effectively medical test dummys for the drug companies. Your doctor can prescribe anything they want off label and try it and experiment on you as a patient and try things. Then report the results to the drug companies if you live in Michigan. And if you're damaged by that, there is no legal recourse (except perhaps to sue to doctor).
How bad is my mom's version of EM? Well it's constant. If I measured the amount of time I was around during the past 13 years and replaced myself with a hired aid, it would cost $400,000 to $800,000 just for a basic aid to be here. For 24 hour care, which is what we give her (my father and I) we are talking about close to one million dollars every decade.
If my mother lives 20 more years, that's about $3 million in expenses for just one helper. That doesn't take into account the cost in terms of what we missed, because we are not rich and how it affected our lives in other ways. We certainly would appreciate some help from the chief suspect of our EM flare which is the makers of Risperdol. One of the rare side effects of Risperdol is the "bodys inability to control it's own temperature". Now perhaps we are jumping on that medication because we took it and the flares happened while taking it and never stopped since. Perhaps it was some other drug.
My mom has restless leg or feet that move when she is awake. There are several other things we have found that are interesting as well. Over time you will find things that work and don't work. We only get reduction in pain, until recently and have had no real relief from drugs in our case. She is on Cymbalta (which she thinks helps the pain, but we have no way of knowing if it does and it causes other side effects). She is on Fentynol pain patch (spelling). She is on Norco. She is taking some other pills as well but this for other side effects. She has cooling on her feet 24 hours a day. There is no times when she can walk or behave normally it's like having an EM flare or being on the edge of one 24 hours a day for 13 years. A constant level of pain. When I hear of other EM sufferers who have times of no pain and no flares I think to myself, how lucky are you. Because we have basically complete debilitating conditions.
And if you have a minor version of EM it could get worse. It might be argued that my mom was experiencing minor versions of EM a long time ago back in the late 80s or early to mid 90's under other medications and we didn't know or realize it. Then with Risperdol, came the big hit. So I'd say, but this is based on my subjective experience with my mom, most of these nerve medications are pretty dangerous and you never know what side effects will do to you're body if you take these pills.
There are some interesting new developments in my mom's case. She recently went on a muscle relaxer flexural for a pulled tendon or some injury that happened and that seems to cause her flares (at least the hot feet) to cycle. It means she gets cold and hot feet now, instead of only hot feet. This seems to increase pain or hot flares in her hands to 4 to 8 times every two months, up from 1 time every two months. So this means she has cold feet but not always hot foot issues. This means the flexural is doing something to her. It's overall effect is lowering blood pressure possibly with the other medications which could be dangerous for her and we have to watch her.
My mother had low blood pressure before she had EM. I haven't verified that baseline figure before she had EM but we know i was low compared to normal people. Her Blood Pressure is almost aways high and spikes to dangerous levels when she has a flare. She can have a flare in one foot or both feet. If she has a flare on one side, more often than not, the blood pressure on that side of her body is about 10 to 15 points higher than on the side without the hot burning flare.
Low blood pressure and low pulse will cause her feet to get cold. This doesn't however cause her pain to be reduced. Her foot pain can still be there with the new medication in the mix, even with her feet cold, so that's an interesting issue. Foot pain without heat, sounds more like neuropathy, so maybe that's a sign of more than one problem. Supposedly she has 50 percent reduction in nerve velocity which is a sign of neuropathy as well. I wonder if the flexural(spelling) is causing her feet to have less symptoms just because of lower blood pressure. Maybe if your blood pressure is low then the burning from high blood pressure is reduced. Note: BP and pain flares are often tied, but not always tied in her condition. We had one pain flare on the lower blood pressure side, so it's not always consistent.
We tried a different blood pressure medication, instead of Lisinopryl which we were using. The other blood pressure pill works differently and that pill Metropolol slow acting 25mg, two times a day - caused her to experience a pain flare that was really bad during a one day switch over to that drug. It was worse than most flares I've seen from the other medication, so we are back on the Lisinopryl (one 10mg dose per day).
The 75mg pain patch helps as well, and we leave the old patch on when we put the new one on. So she may get close to 100mg pain patch at first and we leave the old patch on her. This per neurologist instructions. WE can't use 100mg patch that is to much for Fentenyl in my mother's case.
The muscle relaxer dose we are giving her is a 5mg pill three times a day, in theory on the label but in reality it's only half a pill or 2.5 mg dose, twice a day most days. We found that a "small dose of 5mg" was to much for her, causing her to sleep for 8 hours. And this knocked her out to much. We reduced it to twice a day, meaning for example a 10 am dose would mean a 10PM dose as well. But often we don't give her the evening dose until she is in bed and she goes to bed late, around 1 to 3am. She spends 3 hours getting into bed each night, which is another long drawn out story. She often has a 21 hour schedule during the day and only 3 hours sleep at night. So it's a complete strain on my dad and I, trying to keep up with (the terminator of) pain.
Of course these comments are from my mom's experience and she has perhaps a totally different version of the disease or disease combination than others. So one cannot take the results from one patient and apply those to others. We are all still learning about this and this is a syndrome of set of symptoms.
It would be interesting to see if those who have pain flares in one foot and then another have blood pressure ratings that are higher on the side that is experiencing the flare.
I come up with other theories of course. My mother looses a great deal of sleep and gets only 3 hours a night with naps during the day. With the muscle relaxer at times she has had 8 hours of sleep at a time now, which may improve her health, getting more sleep. This is not consistent. And it's not a cure. But perhaps it's a clue on how to cope or deal with her condition.
One friend of mine who is not a doctor mentioned that it might be that my mother's system was used to the psych drugs and was used to be suppressed. When she stopped those, her system reacted and was used to them so now it's more wired (mind or mind and body) And this caused her to lose more and more sleep and the insomnia is not allowing her body enough time to rest, burning the end of her nerve endings and not allowing repair time. This is a novel idea and not likely to be confirmed by a doctor. We mentioned this theory to one doctor and he said, that might be a part of what is happening, but he didn't say that was 100% responsible for her condition or venture to say that was the problem.It's important to note that drugs that affect nerve messages in the brain, may be affecting nerve messages elsewhere. Consider that the next time someone wants to alter your mood.
My mom had to worry about Vitamin D as well. This due to sun sensitivity from drugs she was taking.
She takes vitamins and doesn't have low vitamin D.
Because I'm at home so much my vitamin D level was low (4) when I had my blood checked and I have to take pills now to bring it up. I don't have EM however.
Two eggs a day will provide enough Vitamin D if you can eat them and don't want to take a pill for it.