Hi everyone,
was thinking it might be very interesting to compile an extensive inventory of all experienced EM symptoms . Some , such as the ankle pain, are not well documented. I , personally, have such an array of symptoms which my specialist has never heard of , let alone come across. Also I have found symptoms morph and manifest at different stages.
mads
Hi Mads. It is hard to tell what is EM for myself because of my autoimmune disorder causing other problems. One thing I know is part of my EM because it happens only when I am burning. It usually happens in my hands or feet but sometimes gets my knees and head/ scalp. It feels as if they are going to explode. It starts with burning then if I don’t get cooled soon enough there is a rush of extreme pressure. It feels like a lot of burning electric needles all through the effected area. It is so intense it has caused me to run out of a doctors appointment waiting area yelling " I have to go! Call me! It’s too hot in here!" Crying looking like a crazy person. If I get them cool or at least raised above my heart it gets better instantly. Put my hands back down and I swear they will explode. When it happens in my hands I call them my surgeon hands because I have to hold them up like a surgeon who just washed their hands do! It’s a much bigger problem when it happens to my feet of knees. It’s no so easy to get those above your heart especially if you happen to be out and about. That’s when you just have to run somewhere cold as fast as you can! It is the most painful part of my EM. I would be curious if others feel this intense pressure. Thank you for taking the time to try and compile a list of different EM symptoms. Take care
Alina
I have the burning stinging pins and needles in my hands and feet. I also get flares on my chest neck face and ears even on the top of my head sometimes! I do have fibro but never had such achy muscles in all of my life until these last couple years. This year has been the worst yet, constant migraines, my calves hurt so bad all the time. I have a deep pain in my bones. My blood sugar has been all over the place and i've never had problems with this before. Another newish thing is extreme flushing and swelling on my face and chest, it is painful and hot. My face gets really dry itchy and annoying. My whole body will swell when this happens. With this stomach cramps and diarrhea immediately follow and usually last all day and night. Extreme thirst, can't seem to get enough to drink. Putting my feet above my heart doesn't help me nor does my hands. My hands are so bad at night i have to lay them both on a gel pack under the covers.
I'm sure i'll think of some more! Lots of time left!
Interesting you say you get extreem thirst and stomach cramping? I go through periods lasting weeks or months where I have those problems too then it goes away for a few weeks or months. I was tested
For diabetes because of the extreem thirst. I couldn’t make it more than a minute without needing more to drink.i would be so thirsty I couldn’t talk or swallow. I would drink so much it would make me sick to drink more so I would swish water in my mouth and spit it out. My stomach cramping tends to flare up with warmth. Strange… It’s like what I was just discussing with my doctor. It seems whatever happens in our bodies with temperature change seems to do other things to us that aren’t just burning and swelling. It effects other internal things like my extreem back pain that tends to present itself when I am too warm and burning. The back doesn’t burn it just feels as if I am being stabbed in the back and usually when I am too warm! So weird. I think there is a lot more to this symptom wise than we know is linked to EM. I am sorry it seems to be getting worse for you. I hope yours fluctuates like mine so you hopefully get a little better soon. Take care, and please keep the strange symptoms coming. I am curious what other things may be related. , Alina.
Okay, for as long as I can remember, these are the symptoms I have experienced. My feet get really red and hot, especially at night (every night), when exercising or wearing hot shoes, which is why I love to wear flipflops. I get the pins and needles feelings everyone talks about. My fingers get red, swell, and burn too. My face will flush a lot which doctors have said it was depression, but my face can turn blood red and burn, along with my ears, when I'm feeling my calmest. Sometimes the redness and burning can go down my chest and shoulders. My symptoms are only getting worse and its hard to find anything that helps. Last night before I laid down, I took two Tylenol 3s to help me get some sleep, given to me by a family member. Here in Kentucky, every doctor looks at you like a drug addict and its hard to get any help I have also noticed in the last little bit that the redness and burning has been running up my legs.
ok, i will add my symptoms and experiences.....
My flare ups usually begin with flu like symptoms (tiredness and aches and pains all over)
Then i get arthritic pain in my knees and ankle joints ( feels like the bones/cartlidge are rubbing together)
Then i get the burning in my feet ( like the skin is on fire- mainly on the soles of my feet, but varies and usually affects the skin up to my calf muscles)
Then i get throbbing pain in my bones mainy toes (feels like every bone in each foot has been run over by a truck)
Then i get electric shock like sharp pain when extending my knee and ankle joints
Then usually once the flare up is residing i get muscle fatigue and tightness- to the point where they are so sore and stiff that they need massaging.( especially up the back of my legs) i am yet to work out if this is part of decreased nerve reflex or simply because i have been walking bent over
I also get Horner's Syndrome ( Drooping Eyelid and reduced Pupil response) in my right eye and sometimes an ear infection. Something to do with the Sympathetic Nervous system response. This is normally one of the first symptoms before a flare up.
I do find that my EM has a cycle of pain symptoms that change over the course of the flare up.
I notice my eye feels swollen but haven't really ever looked to see if it is…weird i'll have to check that out. I too have the extreme body pain, everywhere.
lou said:
ok, i will add my symptoms and experiences.....
My flare ups usually begin with flu like symptoms (tiredness and aches and pains all over)
Then i get arthritic pain in my knees and ankle joints ( feels like the bones/cartlidge are rubbing together)
Then i get the burning in my feet ( like the skin is on fire- mainly on the soles of my feet, but varies and usually affects the skin up to my calf muscles)
Then i get throbbing pain in my bones mainy toes (feels like every bone in each foot has been run over by a truck)
Then i get electric shock like sharp pain when extending my knee and ankle joints
Then usually once the flare up is residing i get muscle fatigue and tightness- to the point where they are so sore and stiff that they need massaging.( especially up the back of my legs) i am yet to work out if this is part of decreased nerve reflex or simply because i have been walking bent over
I also get Horner's Syndrome ( Drooping Eyelid and reduced Pupil response) in my right eye and sometimes an ear infection. Something to do with the Sympathetic Nervous system response. This is normally one of the first symptoms before a flare up.
I do find that my EM has a cycle of pain symptoms that change over the course of the flare up.