I am wondering if anybody else suffer from the cold weather as well as the HEAT..??? I have as much pain, numbness, burning and nerve pain when it's cold which then turn into a full on EM flare once I start to warm up again. Certain times of the year I have to physically touch my feet to see if they are freezing or burning..!! Dr Bennett said it was more common in people with secondary EM. Do you suffer like this and if so have you got primary or secondary EM..??
I have primary EM and the cold does not bother me. Just heat. Not sure about others but this may solidify the doctor's theory.
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.
I do-I have been told i am more sensitive to the pain in the cold cos it makes the fibromyalgia worse-I think might even be worse than summer :(
My main problem with the cold is that my skin stays so warm that I think it fools my internal body into thinking I’ve got a fever because I will feel like I have the chills and even my teeth will chatter, but if I try to cover up with anything too substantial, I start getting that uncomfortable heat and pain… Sometimes I can’t find any comfortable medium, I just go back and forth til it passes… 
yes, for may years I have had excruciating pain in my hands in the cold weather even with gloves - I have to get to a warm place very quickly as it becomes truly unbearable. Now I have EM in my feet in hands with all the symptoms(;burning pain, readness, swelling, tenderness) also have symptoms of raynauds with hand turning blue in cold etc. Lately I have beegun developing tingling and numbness in my hands.. Additionally , the sensation of burning heat travels thru my face, lips , whole body really- it will wake me up out of a sound sleep and then I becaome horribly cold. I go back and forth with this alternating hot and cold frequently thruought the day and the accompanying symptoms are weakness and a general sense of malaise. I think my blood pressure drops during these periods as well.
I have raynuad's and em and yes the cold is just as bad
@invisiblenature I have (or high possibility) fibromyalgia too, I had one specialist say it was fibro then another the following week say pain sensitisation! I do however have all the symptoms of fibro and was thinking I had it before the drs even suggested it to me.! I also find the winter harder than the summer because I bounce back and forth from em flares as soon as I start to warm up even a little. Is your em secondary..?
invisiblenature said:
I do-I have been told i am more sensitive to the pain in the cold cos it makes the fibromyalgia worse-I think might even be worse than summer :(
I am finding the Winter far more painful than the Summer. A hot Summer is bad but a cold Winter is worse. I freeze from the moment I get up until mid or late afternoon when the flares start and my fingers go from blue to red and I take off my gloves, whereupon they freeze again and I put them back on… My house is heated but it is difficult when it is this cold to warm it adequately. Yesterday and today have been awful and I have needed constant hot drinks to stop the shivers. Sometimes I am cold and flaring, numb and burning all at the same time. I can pull off my socks because my feet feel that they are burning and find they are not red which is really odd. It is supposed to warm up slightly at the weekend but for how long… As for night time, the colder I get the worse the flares and it is torture to have to get up, burning from face to toes and walk about in the freezing house until about 3am when I start to freeze again. I have had Raynauds since I was very young so presumably EM is secondary to that.
@Leah Is yours primary or secondary..?
Leah said:
yes, for may years I have had excruciating pain in my hands in the cold weather even with gloves - I have to get to a warm place very quickly as it becomes truly unbearable. Now I have EM in my feet in hands with all the symptoms(;burning pain, readness, swelling, tenderness) also have symptoms of raynauds with hand turning blue in cold etc. Lately I have beegun developing tingling and numbness in my hands.. Additionally , the sensation of burning heat travels thru my face, lips , whole body really- it will wake me up out of a sound sleep and then I becaome horribly cold. I go back and forth with this alternating hot and cold frequently thruought the day and the accompanying symptoms are weakness and a general sense of malaise. I think my blood pressure drops during these periods as well.
It does seem that those with secondary seem to have problems with cold as well as heat...Thanks for the replies. It would be great to get as many replies to this as possible so I could get a bigger picture..
I have to agree winter is a horrible time to try to find a happy medium, at least in the summer it's warm or hot most days and it makes it easier to wear sandles..!
only had EM for a year-had fibro for 10+ years
lauraflora1 said:
@invisiblenature I have (or high possibility) fibromyalgia too, I had one specialist say it was fibro then another the following week say pain sensitisation! I do however have all the symptoms of fibro and was thinking I had it before the drs even suggested it to me.! I also find the winter harder than the summer because I bounce back and forth from em flares as soon as I start to warm up even a little. Is your em secondary..?
invisiblenature said:I do-I have been told i am more sensitive to the pain in the cold cos it makes the fibromyalgia worse-I think might even be worse than summer :(
I've had EM for abour 4 or 5 years and Fibro for 2 years.!
invisiblenature said:
only had EM for a year-had fibro for 10+ years
lauraflora1 said:@invisiblenature I have (or high possibility) fibromyalgia too, I had one specialist say it was fibro then another the following week say pain sensitisation! I do however have all the symptoms of fibro and was thinking I had it before the drs even suggested it to me.! I also find the winter harder than the summer because I bounce back and forth from em flares as soon as I start to warm up even a little. Is your em secondary..?
invisiblenature said:I do-I have been told i am more sensitive to the pain in the cold cos it makes the fibromyalgia worse-I think might even be worse than summer :(
ohhhhh yes!!! it is so bad if it goes below 30 degrees. i do not know whether to get my feet colder and make them stop flaring or get them warming because the cold caused it. i usually like to get my upper body warm in a shower by going on my knees on a foam mat.
i have secondary as well
what is your EM secondary to?
lauraflora1 said:
I've had EM for abour 4 or 5 years and Fibro for 2 years.!
invisiblenature said:only had EM for a year-had fibro for 10+ years
lauraflora1 said:@invisiblenature I have (or high possibility) fibromyalgia too, I had one specialist say it was fibro then another the following week say pain sensitisation! I do however have all the symptoms of fibro and was thinking I had it before the drs even suggested it to me.! I also find the winter harder than the summer because I bounce back and forth from em flares as soon as I start to warm up even a little. Is your em secondary..?
invisiblenature said:I do-I have been told i am more sensitive to the pain in the cold cos it makes the fibromyalgia worse-I think might even be worse than summer :(
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.
I don't know what it's secondary to, I've been that some people with EM never find out what their primary condition is. I hope I do, it's horrible not knowing, never knowing if or when things might get worse etc.!
invisiblenature said:
what is your EM secondary to?
lauraflora1 said:I've had EM for abour 4 or 5 years and Fibro for 2 years.!
invisiblenature said:only had EM for a year-had fibro for 10+ years
lauraflora1 said:@invisiblenature I have (or high possibility) fibromyalgia too, I had one specialist say it was fibro then another the following week say pain sensitisation! I do however have all the symptoms of fibro and was thinking I had it before the drs even suggested it to me.! I also find the winter harder than the summer because I bounce back and forth from em flares as soon as I start to warm up even a little. Is your em secondary..?
invisiblenature said:I do-I have been told i am more sensitive to the pain in the cold cos it makes the fibromyalgia worse-I think might even be worse than summer :(
I agree-but how do you know if it is secondary if you dont know what it is secondary too??
I was diagnosed with secondary at Kings in London. The specialist said the symptoms are slightly different. Some are helped by asprin some not, some are effected by heat only whereas people with secondary find heat and cold painful. The biopsy I had confirmed I didn't have the gene that people with primary have too... I think there are other ways that they know but I can't remember them off the top of my head.!
did you have any tests other than the biopsy to see if you have the gene?