Newly Diagnosed


For 3 years now my son has suffered with pain in his legs the nights were the worst if he did anything during the day (running,playing etc) I had to give him tylenol before bed just so that in the middle of the night he'd only wake up crying instead of screaming, shaking, and crying. We went to numerous doctors and one doctor even told me that I need therapy because I want something to be wrong with my son. Yes, because three open heart surgeries isn't quite enough I need to add made-up leg pain!

I kept pushing though, because I *KNEW* something was wrong. I stay up all hours of the night with him in pain, he can't use stairs, he can't walk more then a street length and he's always in pain. So I push and we were sent to a neuromuscular specialists. He had an EMG that returned pretty normal, his reflexes were a little slow/abnormal but nothing too concerning.

His specialist was amazing. He was not happy with just sending us home so he started researching. He had thought that Primary Erythromelalgia was what he had but I hadn't mentioned the red feet (because for 3 years I was told that had nothing to do with anything and no one would look at my photos) when I showed him the pictures of his red feet he knew that this is what he had.

I guess this is a rare condition? Because we have to get a special permission from our government to pay for the test to diagnose it. Has anyone had the test? I'm sitting here freaking out that it's going to be super invasive.

Also, I'm looking just for any advice...we're not at the treatment part of it yet because the doctors didn't know much about it and he just cried for 2 hours now going to bed because he had to walk at the doctors office...and I'm just a little hopeless right now reading everything about it. What works for you guys? How are you guys doing? I'm reading that patients with this are often severely depressed and alienated and it's breaking my heart...any advice or stories or just anything would really help me right now.

Hello concernedMomma.

Please first know this isn't hopeless. For some it takes longer than others to find the right treatment but there are options. Strange thing about this condition is there is no one treatment fits all. What works for one may not work for another so it is a game of trial and error. A common first line of treatment is daily aspirin under the care of a doctor. After that if no success Gabapenton / Lyrica are other options. There are still more options available if these don't work. I myself had found no relief from those although many have. My most recent and my most promising treatment has been lidocaine infusions and Mexiletine. Please excuse the probable miss spellings of these meds but they are close enough if you google them it should tell you what they really are!

So far I have only had one infusion and I was supposed to start the Mexiletine right away but couldn't due to insurance problems so It wasn't the most accurate results as these are supposed to work together. Any how for the first time in almost 5 years for just a few days after the infusion I felt no pain. It would still happen and I wouldn't know it but it didn't hurt. Keeping in mind it isn't as if I was trying to go out side in real heat or run around or anything so my symptoms were on the milder side anyway but I have never found anything that helped even my milder symptoms. I didn't push my self because I wanted to see what it could do at the milder levels before I really pushed my self. After the next infusion I will push more invoking worse flares to see if it still as effective.

Now this only worked about 3 - 4 days before the pain started coming back but it is promising. The Mexiletine which I am now on is supposed to prolong that effect and increase it's efficacy over time . I am keeping my fingers crossed for this one!

Some things you can do now to help him are keeping the house cooler in general if you can. I myself keep mine at 63 degress because I get it all over my body and it is too difficult to spot treat when there are so many spots! I also limit my activity as activity generates heat therefore causing symptoms. I know this is especially hard for children. How old id your son? I find fans and oooooh I love Chillows. These are available online and in some drug stores. You can place this right on the burning area and it coos so well it is often a shocking experience at first then just turns to feels so good!

I am managing mine at present through prevention essentially. Staying in cold environment. I may have to add a sheet or sweatshirt or slippers on, slippers off. Gloves on , gloves off, One glove and one slipper! You get the drift. I make my environment cold then warm only the areas with clothing that are too cold because it is easier to take clothes off and on to adjust my temperature needs than it is to change the temp in the home. I do very little activity but I do as much as I can. I do things in 5- 10 minute increments and it rarely happens but if I do have to go long distances Such as once at the airport I get a wheel chair. It was hard for me to do the wheel chair in all but If I am capable of doing more with the help of a wheel chair where I can sit in it with fan and cooling pads helping me instead of not doing it at all it is just something I have to do.

I know a lot of people struggle emotionally but I am a lucky one that doesn't have that problem on a daily basis. Sure I have bad days at times as would be expected. To keep some form of social life I post here and play games with friends online as well as Skype with family so I can see them instead of just a phone call. I don't know how old your child is or if he plays video games and if so what system he has but I have them all. XBOX WII and PlayStation . I think the last to accommodate online playing with friends where you can talk to them while playing for some added social time. If this is something he is interested in and he has an game that can be played on line with others I would love to play with him and we could talk if he would like. He could say anything he wanted including complaining about his condition to someone who understands. I know this is a strange offer coming from a 40 something year old woman but obviously I am young at heart or I wouldn't have so many video games! I know a lot of the games are inappropriate for younger children and those aren't the ones I like any way. He can name any game and I will buy it so we could play together. I am always looking for a good excuse to buy another game when I already have plenty I haven't finished yet!

Sorry it has been such a long post but I just had so much to say:)

Hang in there ConcernedMomma,

Take care,


PS..... Doctors almost always think you are crazy at first. I am so glad you stuck to your guns and got him the help he needs.

Good work Concerned Momma :)

These articles may help you and could help showing them to your doctors and 2013.

They are written by Dr. Jay S. Cohen who had EM and still does.

Good luck

Greetings, Concerned Momma. I'm glad you found this web site; my EM isn't nearly as bad as your son's, but I've found lots of useful information and support here. One study that was posted here reported on (relatively) longterm outcomes. As I remember, the finding was that after about ten years, 30% of EM sufferers got worse, 30% stayed the same, 30% got getter, and 10% were completely free of symptoms. (I hope that's accurate--maybe someone will correct me if it's not.) I found that encouraging because some of what I'd "heard" indicated that the symptoms usually get worse. And evidently, that's not true.

You've probably tried this, but does your son like to be in the water? Many people say that swimming is the one form of exercise that they can enjoy and benefit from.

Wishing strength to you AND your son--


Hi concerned mama,

Some great, informed advice from alina and some really good practical stuff there for him to do. Distraction helps. I read, a lot, and watch tv, good and bad, and lots of movies. I also do a lot of writing -this keeps my brain awake and I get to pour emotions onto the page, expressing stuff makes it easier to deal with, I have found. Probably the most effective thing I do is write for myself . If I had any artistic abilities at all, i would be drawing or painting or sculpting but I'm afraid I'm not even crafty. I missed that gene in my family

Visits from friends/family can be a good distraction although it seems to be the nature of many that they don't like to see other people ill or in pain. The online, interactive video games, that Alina suggests, sound good. My teenage nephew enjoys this too, interacting with other people in real time playing a game. Domina has written about Dr Cohen, who apparently still has EM but it is minimal now, which is encouraging. And he writes about what has worked for himself and others. And as Lynn said, swimming is wonderful. I find wonderful relief in the cool, not too cold, salt water of the ocean. I don't like pools, But I have read of others getting relief swimming in pools. The past two summers in australia I did not swim regularly and I think I was probably in more pain than I had to be. I am determined to find a way to get to the beach more regularly this summer.


Hi ConcernedMomma,

My heart breaks for your son! I am newly diagnosed as well so probably don't have much input other than that a neurologist did an EMG on me and didn't find anything either. When I went to the rheumatologist, he said that it's not uncommon for the test to be negative as it tests the large nerves and that EM is more in the fine nerve endings. I'm not sure that is true as he wasn't very helpful beyond that. I can't imagine watching my child in such pain. Keep on pushing for help in every way you can and stay strong.


Thank you everyone for the replies! My son doesn’t understand what is going on when he’s in pain and refuses to go into water because the temperature is too drastic and often pains him.

I’m just so happy he’s been diagnosed. I’m terrified don’t get me wrong, but we’ve been told its just growing pains and we were crazy and dramatic. I knew it was more then that and pushed and pushed.

It’s heart breaking. He can’t run like other kids, he can’t walk hes always asking to be picked up. He can’t sleep alone because he gets so scared waking up in pain.

They said there is a test for it? Has anyone had it? They said it can give faluse negatives and that thia is definitely what he has but it helps to see if they can get a positive. Is it invasive? I was already so scared about the test with the needles in his leg.

I’m sorry I just saw Alinas comment, I’m on mobile and didn’t realize i had previous posts haha!

Those are all great suggestions thank you! We have his room in the basement which is very cool and since last night (after being diagnosed and researching for 4 hours) we have added a fan in his room as well and today he didn’t complain as much though we did only quiet activities today.

How long has everyone been dealing with this? Anyone diagnosed early like my son? My son is 4 years old. So we were very lucky to be diagnosed. I’m so greatful for our specialist.

Also, he’s already on aspirin for his heart defects it has slightly improved his pain but not a lot.

I’m worried that the medications available for EM are not something I can give a child? Or since he’s so young he will build up immunities and run out of options later in life.

Please ConcernedMomma don’t expect the worst case scenario. What has happened to our friend dkel is extreme and you will be reading frightening things about it being a progressive disease and getting ever worse and that’s is only in a minority of cases.
There is no test for EM, only tests to eliminate diseases which might be causing the condition. I was going to say that only blood tests are involved but your little boy is only four and I remember my four and two year olds having blood taken regularly for a kidney condition and it is scary for them, I have to say that they do get used to it and bribery and distraction work. The only definitive test is the test for a defective gene which causes inherited EM but that is no more than a saliva sample so more fun than pain.
I am so sorry you are going through this. There are quite a number of children taking these adult meds and doctors don’t seem to be worried about prescribing them. As for losing their efficacy I cannot say but I am hoping that some of our members who are mothers of children with EM will contribute to this discussion when they notice it.
I understand your happiness at getting a diagnosis. I was so happy to see at the top of letters from hospital to GP and hospital to hospital the words at the beginning of the letter “Diagnosis: Erythromelalgia” at the top of a list of conditions I have assembled over 70 plus years. Validation at last, not just a hysterical old person!
I can honestly say after four years I am no worse than when I first started EM and because of a change of life style and medications I am in fact a whole lot better, in my head at least.
I do so hope that the doctors can help your little boy and send every best wish to you both.

Hi again concernedmomma,

Oh, your little four year old son. This must be so tough on your son and on yourself and your husband. Heart operations and now this. I'm going to detail a whole lot of stuff I do. It makes for boring reading but I figure at 4 years of age your son will not have fully worked out how he gets to feel most comfortable. And I know that at four kids are better at experiencing stuff than explaining the stuff they are experiencing. If something hurts, it just hurts.

I can't believe I didn't mention my fans when I responded to your posts. I'm glad you came across that information. My fans rate highly, up there with my best friends. I have a non buffering fan (a Dyson) it's not really as strong as I'd like it but it has a smooth flow -- no buffering -- which doesn't irritate me and I can direct it onto the hottest parts of my body easily. They are very expensive for a fan though, around 300 dollars here in Australia and they aren't really strong as they should be, certainly not for the price, but it can be effective on many days. They have no blades and I imagine that they would be relatively safe for kids as long as they don't mess with the electicals, etc. My younger grandkids are fascinated by the fact there are no blades yet the air blows through .I'm actually more relaxed when my little grandaughter is around to have this fan on as it is fairly stable and there are no blades she can get at. I also have the usual type of fan with blades, that gives out stronger air flow, and helps me too and s much, much cheaper. It depends on the sort of burning sensation that I experiencing which one I will choose to put on. I don't have central air. Although it's a goal of mine to get it. I've learned to have two fans in the house at all times because one will inevitably break down, as I'm using them for a long time.

I do have a portable air conditioning unit that cools the room and empties all hot air through a tube in a window, outside. You don't have to cut the window or anything. The window is open a bit and a metal piece fits into it which has a hole for the tube. I am careful when my grandchildren visit because we live two floors up and I do worry they could push the metal piece out and fall out. So I turn it off if I'm alone with them and just use my fan. I take the metal piece and tubing out and close the window. Just in case I have to leave the room. For years I had a sort of airconditioner that I had to put water in (to cool the air) and that didn't have an outlet to the outside, and this was effective, but the one I have now is just as effective without adding water. However the one I have now is really noisy and it cranks up and down to maintain an even temperature and will wake me at times. It's made by a company called DeLonghi. You could probably find a quieter one if you wanted to look into this option. I'm sticking with the one I have until I get central air conditioning. I've noticed that when in a hospital environment or large medical centre a lot of my pain and flaring often goes away. I attribute it to the good airconditioning they have. Also, although I'm not able to shop at the moment the temperatures maintained by big shopping malls is often great. A very mild evening or late afternoon is the best time for me to get outdoors as if I can cool down in the very late afternoon or early evening I will usually feel better for longer. I'm lucky that I live across the road from the harbour so I can go to the park in the late afternoon or early evening and often experience the cool air coming off the harbour.

A number of members of the forum use chillows to rest their feet and other hot body parts on. I didn't know about them until I joined the forum in April. I haven't bought any yet but will when the current winter in Australia comes to a close and it starts to warm up. You can buy chillows over the net.

Has your son indicated a preference for certain clothes or even no clothes at all?. I'm not alone in that I am often getting around the house dressed in very soft t-shirts of a particular brand and my underpants. Other members find they need to dress in a similar fashion. I buy the same style every time and only in the white because the white seems to be a different, softer cotton than the other colours. Crazy sounding I know. When I need to buy clothing I always do a 'face test' before purchasing it. If it's soft enough on my cheeks then there's a good chance it will be soft enough for my most hot and painful times. I'm a bit like the story of the princess and the pea. Your son may not experience this, not everyone does, but I'm mentioning it to you because he may not have realized that it is a problem for him yet. Or he might not know exactly what is the problem.

I rarely wear shoes. And when I do I find loosely fitting all leather sandals -- with no synthetics -- are best for me. This winter things have changed for me. I used to always be barefoot but now I find that on some cold days I need to put on light socks or my feet will get very cold and painful -- they can often feel like they are icy but burning at the same time. The light socks prevent this for me. Most days, usually between 5 and 7pm, I start to feel warmer than I have all day and if I've had socks on my feet start to get a bit warm too and I take them off and it always feels like such a relief.

I'll often be stripped down to underpants and t-shirt and hubby will be sitting next to me on the couch in sweat pants, sweaters, thick socks etc. Sometimes, the seams of clothing can irritate and hurt. On those days, when around the house, I wear things inside out. I often do it too when I'm going out - wear my t-shirt turned inside out. If it's not hot I will wear old clothes made of silk as the silk will be cooling and very smooth. Most comforting. When it's hot weather the silk just does not breathe well enough for me and gets too hot, then cotton is best for me.

Sheets and pillow cases have to be very soft high grade cotton and it's better for me when they have the sateen type finish. For cold nights, when I need to cover most of my body, or parts of my body with a blanket I have the softest acyrilic one I could find. After 4 years I'm wearing it out and it's time to get a new one. Cotton blankets can be a bit rough and I can't wear wool or have woollen blankets anywhere near my skin. Some people find they can't have coverings on them at all and when they sleep they have to use a cage that the covers go over so that they stay warm but not hot and their skin doesn't hurt from the feel/weight of the clothes. I'm sure they will come along and see your post and explain exactly how they manage this. All this might be unneccessary for your son, and I don't want to overwhelm you, but I'm just trying to run through the things that help me and things I can remember that help others.

I do want to say that there are days that I can wear very normal looking clothing. Days when my skin is not as sensitised and flaring. Sometimes I can wear slip on shoes but they are made from soft suede with leather soles etc. I just find synthetic shoes make my feet burn within minutes. It depends on the day what I'll choose to wear but if I'm staying home I always go for the really soft t-shirts and pj pants. I usually turn my pyjama pants inside out because often the material is softer on the outside of the pj pants for some ungodly reason.

Hot drinks can set off a flare. I tend to drink cool water or warm drinks, never hot. Depends on the weather temperature. I have a problem with many foods. I went on a very restrictive diet not long after the EM flared badly the first time. It helped me a lot to begin with but I've found that I'm now flaring even when on the restrictive diet. I sort of stuck on this restrictive diet because going back to a more normal way of eating makes it all worse. I wish I'd left well enough alone in this regard and never started the diet. Having said that chocolate is a flare certainty for me (and still, very very occasionally I'll get an urge to eat some and then curse myself for doing so when the flare kicks in). Some people say sugar is a problem for them. In my case I'm fine with sugar. At my last visit to my EM and POTS specialist, the doctor who diagnosed me with these conditions nearly 9 years ago -- I've been thinking it was 8 years for so long I forgot to think of time passing -- anyway my specialist mentioned avoiding foods high in salicylates. He mentioned fruit specifically. Plus he said to stay away from spices. I was already doing this, so in the past 9 years he has actually caught up with the possible food trigger aspect of EM. You can find lists of high salicylate foods on the net. Just make sure it's a reputable source. But I do caution anyone going down this route that you may find yourself in a worse mess eventually. Avoiding certain foods can help. But a few people, I'm one of them, become more reactive to them by avoiding them. And it can mess with the nutritional aspect of your diet. It has certainly messed with mine. I'm actually hestitant to mention diet but feel you should know of all the possible ways of getting relief for your little son. Just be cautious about messing with his diet and seek the help of a dietician that understands high salicylate restrictive diets. This science is not proven. It's all pretty much subjective science and has been criticised for there being no objective studies done on this. I'm critical of it, whether it does more harm than good, in the end.

I don't think it's universal when it comes to EM that all people are comfortable with cool water. I'm sure someone else will come along and tell you that they find cool water to have the opposite effect it has for me. We are all different in so many ways, and the same in others. I have found everyone on this forum to be really kind and I have come across people whose descriptions of pain and heat are almost exactly like mine. I should have thought more about this before I mentioned the beach being beneficial. I have learned this winter that cold air temperatures can cause me to flare. Sometimes I can get very cold and then flare up red and hot. Up until this current winter I used to love winter but something has changed in my body.

My fan is my best thing when my skin is hot and burning. It will cool me down. I like the cool water, as i said, so a cool shower followed by sitting in front of a fan and keeping my feet elevated really helps. Some people have to elevate their feet and legs up against the wall to gain relief.'''

I'm sure I'll think of more stuff. And so will other people. I hope I haven't overwhelmed you. And please try to comfort yourself with the thought that EM does resolve in many people. And that even now they are trialling a new med for it. New things come up all the time.


There can’t be much else to say but I just wanted to add that different things help different people and though a number of people say they have to keep the home really cool I find that if my hands or feet get cold I will flare for sure so I try to keep a constant not too cold temperature especially in Winter, if only because I cannot wear layers of clothing.
It took me two years to work out a way of life to manage EM so you will just have to keep trying and if it doesn’t work change tack and try something else.
Best of luck.

I agree Nel. If you are one of those people that have difficulty wearing clothing as many EM sufferers have it can be too difficult to keep your house cold. It only works I’d if you can still cover those areas that aren’t burning. I know some people have pain just from the texture of clothing and there is no way you can do what needs to be done to make it work. Just like the treatments for it …it’s all trial and error.
Take care,

Dear Concernedmomma,

Please read the post 'information for new members'. It has videos, blog and research articles that will tell you all you need to know about EM, treatment options to help manage symptoms, triggers to avoid etc..

In my experience the 30% quote is arbitary. These hypothesised percentages often prove terribly upsetting and misleading . Truth is no one actually knows. Signs are that progressive EM usually occurs when it has followed an acute rather than chronic onset. Progression of EM is also complicated and confounded by many other EM related factors/disorders. Take heart in that many EM'ers do remain stable(by managing symptoms/minimising triggers), and I personally know a few cases of remission.

You are inspirational!

God bless


I'm so lucky my son can vocalize how he feels. He tells me when it's too much for him to leave the house and when we are at home he is pants-less 100% of the time.

I finally for the first time got 6 hours of uninterrupted sleep. First time in four YEARS that this has happened. For four years I have been woken up multiple times with crying for the first year it was because he was a baby, and for the next three it's been due to his legs. I'm sure some (or all) of you know exactly how satisfying it is to finally sleep.

I tried a combination of your suggestions. No pants, light blanket, elevated legs, tylenol before he even goes to sleep, a fan on his legs and no socks. I always used to put socks on because I was worried he'd get cold and now I realize that could've been hurting him! I feel so bad!

I am so glad your son is getting some relief! What a blessing :slight_smile:
I am glad you are finally able to get some rest.
I am sure he is happy to finally get some sleep too and getting the rest he so desperately needs can further his improvements. Lack of sleep like stress just adds to it and can make his symptoms worse.

It’s a wonderful day and cause for celebration!

Take care,


Dear ConcernedMomma,

Please make sure that you look after you too. We have a wonderful caregiver support community available on Bens Friends should you ever feel like 'offloading'.

You are inspirational.

Sending healing hugs to you both

God bless


Bless you, ConcernedMama! I certainly understand your mother-heart breaking for your little son in such mysterious pain! I went through something like that with our son as a young adult when he was medically separated from our Navy boot camp. He was essentially crippled when we brought him home, but the military drs could find nothing wrong with him. He was our rough-and-tumble son who never let a little pain stop him from achieving his goals, especially that of following the family military tradition. But when he came to me in tears a couple of times at the beginning, after bringing him home, asking for something to help his pain, I knew that pain had to be excruciating. It took us 3 ½ yrs to finally find a dr that believed there was something wrong, and then tried to help him with surgery. The dr found both our son’s plantar fascias twisted, crumpled and covered with scar tissue. The surgeries helped but were not the “end-all” to his problem - and there may never be one. He is still in pain and unable to do any of the things he loves to do to a normal extent. Instead, he is learning to find the new direction God has for his life. The moral of my little story that I had to learn (as well as through my own EM journey), but that you have already learned through your persistence against great odds, was “NEVER GIVE UP”. Your son is a gift, a precious charge, and all that you have done & continue to do in trying to find help for him is right and good! Don't let any doctor cow you with their arrogant ignorance. One day your little son will bless you!!

I'm so glad he has found relief through sleeping in the basement with a fan! Cool air & fans are a tremendous help for those with EM. However, as I have learned, there is a lower limit, a temperature at which the cold can elicit a flare, so you want to avoid that. During my first winter I kept our house at 56-58 degrees and really struggled with pain and flares. I think, now that summer is here and we are keeping our bedroom at about 67 degrees, that was much too cold. I am sleeping better with my feet and lower legs exposed, and the rest of me covered with blankets, and a heating pad under my upper back that I can turn on in the night if I get chilled. During the day we are keeping the house at 68-72 depending on the time of day. We don't have central air, just a window A/C for our great room area. Since our house is on top of a ridge in south central Colorado it gets the sun all day long, so by afternoon the A/C can't maintain the temp I prefer. :-/

One of the consequences of warmer air in the great room is warmer floors. Since I have to wear compression stockings which hold in heat, the warmer air is uncomfortable, but having to also walk barefoot on warmer floors makes it even more so. I have to have a small fan blowing on my feet and legs when I go into the kitchen so they don't overheat, even though I'm standing on ceramic tile.

Is your son able to wear socks & shoes comfortably? If not, does he tolerate all of the different flooring materials you have in your home well? I've found there are certain materials that hold heat around my feet and will result in them flaring (like carpeting!!! and vinyl flooring). You might want to keep an eye on that to see if he has any triggers in that area. When we go to visit other people (rarely) or go to the drs, I take a glass cutting "board" with me that we keep in a cooler bag with a Chillow, an ice pack, and a small portable fan. If the office is carpeted or has tile but the air is warm, I set it on the floor to put my feet on to keep them cool, using the portable fan on them if necessary. If the wait in the drs office is long, and the glass heats up, then I'll pull out the Chillow to put on the glass plate to cool my feet.

As your son's body grows his muscles will scream for activity. Can he ride a trike or bike yet? You might want to talk to a pediatrician or investigate online ways to help him exercise that won't induce flares - like doing fun isometric things perhaps. Having a fan blowing on him during such times would be a good idea. And if he has some music that he likes you could have him do his exercise to that, perhaps choose one particular one that could become his theme for awhile and then change to another one.

Anyway, I hope some of this is helpful and/or encouraging, Concernedmama! Remember, he is not alone, and now that you are coming here, YOU are not alone!


Dearest Mona,

Thank you for your wonderful response to concernedmomma. Just to let you know we have put her and her son in touch with other parents of children suffering with EM.

God bless