I had various tests over 3 visits. EMGs MRIs Loads of bloods (I actually think the genetic testing was through blood and not the biopsy, think the biopsy was for nerve damage)
all i have are photos-they seem to think that is sufficient for a diagnosis
Have you vseen a rhuematologist or Neurologist..? I took photos with me to several of my appointments but usually had flares by the time I got into the drs office anyway..! Are you in the uk..?? I would keep going back until they do something if you are, I know it's much harder than that in the States because of the high cost of medical appointments.!
rheumatologist at Addenbrookes, Cambridge. Not sure whether need tests-just would like pain relief that works and doesnt pile on weight!
The summers are bad, especially if I go out in the hot Texas heat, however, the cold is just as bad if not worse. I believe I have primary EM, but since I have had polycythemia vera for 33 years, it may be caused by that.
Good Evening,
I'm Brian. First post reply as I am just feeling comfortable that this is what I "have" now. I was diagnosed with late stage Lyme disease in January of 2011 and have been taking antibiotics ever since, including IV for approximately 12 months. The disease comes and goes and has damaged my nerves to the point that I have EM and Fibro Diagnosis as well in the past 6 months. So, I suppose I'm secondary EM, but I have yet to find a doctor that understands any of it except how to diagnose.
My EM has a Raynauds component as well and I find that they both are very painful - primarily in my hands but also in my feet. I used to work outside for USDA and am in the process of disability retirement from federal service. I get it when its cold and when its hot. When I come in from working with the chickens or winter garden and warm up in the house my hands go from blue to swollen and red (sometimes past red and all the way to purple with tons of white bloches). They look like sausages. Hands and feet tingle constantly 24/7 and burn and itch irritably-- on the inside as I like to explain to the kids...
When it flares real bad (30% of the time) the pain goes all the way up into my shoulders and jaw and my ears ring like crazy. Often hard to tell whats EM, whats Fibro, and whats the medications...
Sending blessing to you all! Thanks for making me feel somewhat sane!
Hi Laura
Yes, I too have similar problems but am quite sure I have primary EM
If you want you can go to my profile, I posted a picture of my feet while flaring from Em AND Raynaud simultaneously !
It's quite something to witness !!!
Hope this helps...
Happy "flare free" holidays!
Thank you for this post. I have sensory nerve damage in all extremities, FMS, EM and other DX. However, with the cold this year I have been feeling crazy as I thought the winter would be better. I am stuck in a place of no knowing if my body is burning hot, burning cold or even being able to feel my feet somedays. Thank you for this post, as least my anxiety can now go down :) Michelle
I don't get burning from the cold, but the blood vessels in my feet get really constricted - they go white and numb and feel like marble to the touch - my hands get very cold too. Then when I come into the warm everything sort of swells up in a sort of mild flush reaction. Didn't happen before the EM so clearly linked in some weird way...
Frances
I also have Raynauds so the cold bothers me too. If I have a Raynauds attack, which are painful in themselves, I have an EM attack as my extremities warm and the blood flow is returned. We need a bubble to live in that keeps the temperature just right for us. Lol Hang in there!
At the risk of sounding like a complete oddity I have created at least a nighttime ‘bubble’ for the winter months. I can’t heat the whole house but have a heater on a thermostat in the smallest bedroom and because bedclothes or nightclothes cause almost instant EM flares, I sleep under a ‘cage’ made from a fire guard. Over the cage go the blanket and duvet which once would have gone over me and from the waist up I am covered with a baby’s quilt. Temperatures here for the last three nights ranged from 0 to -4 but I managed to stay in bed and not flare. Neither the heater nor the cage can alone cope with the nighttime drop in temperature but the two together work for me. I wake up warm and the Raynauds kicks in as soon as I get up followed by EM and/or Raynauds all afternoon and evening. No wonder my GP thinks I am eccentric/deranged. I don’t like to think what my electricity bill will be like but it has to be worth it if I can stay in bed and not spend the night walking round the freezing kitchen trying to reverse the flares.
This is exactly what i experienced for several years. I was assured it was oversensitive sympatetic chain reaction. Completely disappeared after sypmatectomy a year ago. (Not here to recommend the surgery to anyone, it's everyone's choice what treatment they try and choose) After year the hand started to freeze in cold and then swell and burn when heated again, but it's definitely not as bad as it used to be. I remember I couldn't even go shopping in the winter because of the overheated shops, it made me suffer too bad. My feet are okay since the surgery, THANKS GOD! Seems very raynaud's like to me, first white and painful, then blue and numb and then red and flared up.
FrancesE said:
I don't get burning from the cold, but the blood vessels in my feet get really constricted - they go white and numb and feel like marble to the touch - my hands get very cold too. Then when I come into the warm everything sort of swells up in a sort of mild flush reaction. Didn't happen before the EM so clearly linked in some weird way...
Frances
Do you get EM attacks always after the raynaud's one or you get EM flare sometimes without the raynaud's attack before? Because I found my EM attacks come ONLY after the raynaud's so that's why I think the flares are "just" the hot phase of raynauds. I read that secondary EM related to raynaud's can be treated when you avoid the cold. (works perfectly for me, but kind of hard when the temperatures are around -10°C outside and despite the house is heated it doesnt go above 18°C inside). How long does it take to get to normal for you after the flare up? thanks, Liz
akf32 said:
I also have Raynauds so the cold bothers me too. If I have a Raynauds attack, which are painful in themselves, I have an EM attack as my extremities warm and the blood flow is returned. We need a bubble to live in that keeps the temperature just right for us. Lol Hang in there!
Exactly my story. My EM developed the same way, too cold feet, chillblains, redness, itching and then EM flares.
LibbyK said:
I have always had very cold hands/feet - in fact, my EM began shortly after one particular night when my feet got so incredibly cold the pain was horrible. Over the next few days, they developed chillblains and then toes started turning red and hot and tingly/itchy. Eventually this turned into the frequent EM flares I have now, which are just my toes and easily triggered. Mine is actually FAR worse in winter - my guess is that, for me, it has to do with temperature extremes (and the temperature changes that come with it, like going from A/C to hot outdoors, or freezing outdoors to warm room), because I actually went into remission for a month or two last fall when the temps never got below 45 or above 60.
Liz, it is blowing my mind just a bit to have found someone whose case mirrors my own! I haven't been diagnosed since each doc I see has never heard of EM before, and my experience doesn't exactly fit the textbook description. My biggest discoveries are the remission when the weather gets mild in autumn, and also swimming for exercise (even in a heated pool, the water seems to regulate the temp of my toes).
Do you improve if/when outside temperatures become cool and steady? Have you had any breakthroughs or discoveries that have helped you? Sorry for the questions, but like I said - I am really amazed to find that someone else has had the same experience! Maybe we can help each other with our discoveries. :)
liz said:
Exactly my story. My EM developed the same way, too cold feet, chillblains, redness, itching and then EM flares.
Hi Libby, I'd glady share my EM experience with you. :) To make it clear, my EM started in winter 2008/09 after really long time of dealing with cold feet/hands and having chillblains after every winter. I'm sure the biggest trigger was when i was riding motocross bike in very cold temperatures once, after that my feet were all red, cold, painfull and when i came home I definitely made a mistake by warming them too fast. Funny that all my bike mates were w/o problems... Typical. I had really hard 3 months i couldnt even sleep or walk bcuz of EM (doctors didnt know what was wrong, they only told me to cool down my feet/hands) I diagnosed myself 5/2009, found only one doctor who knows about at least something about EM here and she agreed it could be that. Then I really improved with beta-blockers and high doses of magnesium and topical applied aspirin (my own recipe lol). This was till 10/2011 when I decided to undego upper and lower sympatectomy which brought me complete relief for feet and hands (not for face/ears which i dont care much for tbh). I was told the effect should be permanent for the feet but no any guarantee for the hands. I had "normal" temperature on my feet/hands, not too cold not hot. After more than a year now, the hands becoming very cold outside (doesnt matter if i wear gloves or not, it helps nothing) and yes of course the more cold the more warm they get after. It's not as bad as it used to be before the surgery, but I'm affraid what's go i My flares are definitely coming after the small vessel spams, so the winter is and always been the worst part of a year, specially moving from cold temperatures into overheated supermarket (from exteme to another one) used to cause me real hell. So, I think trying to keep the extremities in ideal temperature is the best. Easy to tell, hard to do right ;) I'm trying to keep my hands away from too cold temperatures, but it's almost impossible these days. I also had problems with any kind of excercising it always caused me bad flare up, never tried swimming, I didnt visit a public pool since I was like 14 and had a really bad "women organs" infection from that (and of course I can't afford a private pool lol). As for the EM textbook description, my also doesnt fit exactly and never did, I think its obvious it's a secondary condition, because we both experienced long years of having poor blood circulation in our feet. Always seemed to me it's like if the brain (or nerves or whatever) made a mistake when realizing the feet were too cold and it sends TOO MUCH blood into it and that causes an EM flare that can lasts for hours. On the other side exercising caused me EM without being too cold before, so it's kinda complicated. As I said, I'm EM free on my feet since the surgery (God bless my doctor) and I hope it will never come back. I don't have to say how painful it was since you know it too well. :/ So, for me except the surgery, I was good with beta blockers, antidepressants and magnesium. Don't use too cold water or ice, never! It only made it all worse for me. It brings relief but only for a while and it made my flares to become more often im sure! Fan is good but for me my best discovery was a topical applied vodka when flared up and/or topical applied effervescent aspirin. and of course, try to keep your feet warm when not flared up! I'm sorry for such a long and disordered answer, I always been good into writing, but not in a foreign language. :)) btw, you can text me to ttsseett@gmail.com if you want to or we can talk here, I'm okay with everything. :) Liz
LibbyK said:
Liz, it is blowing my mind just a bit to have found someone whose case mirrors my own! I haven't been diagnosed since each doc I see has never heard of EM before, and my experience doesn't exactly fit the textbook description. My biggest discoveries are the remission when the weather gets mild in autumn, and also swimming for exercise (even in a heated pool, the water seems to regulate the temp of my toes).
Do you improve if/when outside temperatures become cool and steady? Have you had any breakthroughs or discoveries that have helped you? Sorry for the questions, but like I said - I am really amazed to find that someone else has had the same experience! Maybe we can help each other with our discoveries. :)
liz said:Exactly my story. My EM developed the same way, too cold feet, chillblains, redness, itching and then EM flares.
Thank you so much, Liz. I figured I would write back here so that all this info might someday help another person who's trying to figure out what is going on with their toes.
I also warmed my toes up too fast the night they got freezing cold - I was living in a cold, drafty house, so I had little space heaters and I put my feet in front of one that night when I got home. My greatest wish is that I never went on that run to the hardware store that night.
My EM seems most likely to be primary, actually. I have been tested for everything the doctors could think of and they've found nothing. I am in my mid-twenties (EM for 2 years now) and my mother says that she always had cold feet until when she was in her twenties, when suddenly her feet became hot all the time instead (and have been that way ever since). She does not have flares or cold periods like I have with my toes, but it would be an amazing coincidence if these heat issues were not related between me and her. My older brother has Raynaud's (but he lives in a warm place so he doesn't have much problem with it), so I think something is running in my family! Perhaps we have that gene mutation, but my understanding is that there's no one in the US who tests for it.
That vodka idea is genius! Do you put it in a spray bottle? I am thinking now that hand sanitizer gel or rubbing alcohol might give the same relief... Or sanitizing wipes - those would be easy to travel with!
I am so glad you found some relief after your surgery. I don't think my pain is bad enough that I would do that (yet, knock on wood), but it is good to know that it helped you. Thanks again for sharing your experiences with me. :)
Oh, and if it was yeast that gave you problems with swimming, that generally won't happen if you dry off and change into dry clothes immediately after getting out of the pool. :)
liz said:
Hi Libby, I'd glady share my EM experience with you...
Hi Liz, where can I find those articles? I have tried to google things about it but didn't get good results. Thanks!
liz said:
Yes, I know what you describing very well! I was diagnosed with raynauds after years with EM. I'm sure it has something in common. The vessels narrows too much in cold (which causes bad pain) and then it starts burning as the vessels get too wide and full of blood. You can even have one finger cold and other with EM flare. The feeling is almost the same (well the burning is worse than freezing no way!), sometimes i also had to touch to know if they cold or burning. Definitely a secondary condition. EM can even be "just" a raynaud's disease "hot phase". There are several articles on internet about that.
Yes, sadly hot or cold . Double whammy! I have been told I have sporadic (idiopathic) primary otherwise known as non familial/genetic primary.
God bless.
I find the winter much worse. I think that once my feet get cold, the increase of blood by body to warm them just starts a flare. As long as I can wear open-toe shoes, I am somewhat ok. The flares are not as bad or last as long. However, in winter when I were shoes, the flares (after cold) are severe and tend to last much longer. I have secondary EM.