Pain,pain,pain!

hey everyone. just out of curiosity, whats the worst part to you all about living wwith EM?

Never being able to just relax confortably without any symptoms at all and just forget about it. Not even for 5 minutes..

yea. i hear you on that one. its the worst.the medication im on really helps. were you perscribed medication yet?

I take amitriptyline, codeine and a sleeping pill. Due for Iloprost infusions in just over a weeks time. Am limited with opiates for pain relief as they affect my breathing so the codeine and sleep pill make things worse. Rock and hard place at times. What is the worst about EM for you?

i love jah said:

yea. i hear you on that one. its the worst.the medication im on really helps. were you perscribed medication yet?

The worst part of EM for me is the (15 years of pain) has robbed me of enjoying the lives of my grandchildren to it's fullest. I could participate in the early years of the oldest, but not the youngest. They might rarely spend the night and my husband has to do all the entertaining. I try to play with them, but mostly it is in vain. My life is pretty much spent at home with the daily routine of trying to get out of pain.

The worse part for me is how nobody understands at all what you're going through. They can be out on a hot summer day running around, but if I'm reluctant to join they think it's because I'm just being anti-social. It's the pain in my hands that's the worst, with my fingertips stinging like they're covered in red ants any time the rest of my body is at a comfortable temperature. I'm in the stage of trying to find something to take the edge off, but probably the absolute worst part is the feeling like you just can't escape it, like you have no control over your life anymore. Not to be a downer or anything haha.

Not being able to cover my feet in winter, without severe consequences. When I have to go out, I have to wear shoes (I live in Idaho!), but when I get to my doctor's appt or whatever I have to take them off! Can't have a blanket over my feet, even if they get cold, without waking up an hour later feeling like they are on FIRE.

Have to lie around with my feet up most of the time, or my feet and legs swell and the EM gets worse. The EM on chest, face and ears comes and goes without rhyme or reason (well, always gets bad if I'm the least bit warm). I feel like I have to plan around EM all the time.... I no longer have a life. I have seven autoimmune diseases, fibromyalgia, Lyme disease plus 3 other tick-borne illnesses.... so I am one sick puppy anyway. Each condition causes issues, but EM is one of the WORST.

The pain.

For me, the worst part about living with EM is the noise of pain. There is never a quiet moment. When I'm alone the pain seems more intense because there are fewer distractions. The pain crowds out all my thoughts and fills my head with the noise of intense clutter banging back and forth across my brain, legs, feet and toes. When I'm in a group setting the pain is so dominant in my thoughts that at times I'm unable to follow or understand what's being said. The noise of pain is so loud the outside world can be blocked from my consciousness. Sleeping with all this noise is next to impossible My eyes see people but I'm not really looking at them. My brain is searching for some kind of relief that it never finds. My being is trapped in this cauldron of boiling pain that can't be understood by anyone in my life. The noise of pain is deafening.

Aside from the pain, the worst thing for me is the unpredictability of flares. My EM is atypical - I have flares even when it’s below zero and I haven’t done anything strenuous. I’m getting married this spring and hope to honeymoon in Scotland but I live in fear of a flare ruining the trip.

and being new to the forum, I have to say the level 10 burning pain and the regular pain if this in fact what I have.....the wife and I are not of retirement age but both have retired. They say retirement is the golden years and it seems more like the rusty years with the pain in my feet. Almost afraid to go anywhere as I dont know when my feet might get severe or not. So hesitant to travel and enjoy retirement like I expected to and it frustrates the wife. Looking forward to reading all your posts as the more I read the more I will learn.

The worse part for me is not the EM, although my EM is at a pretty high level and I am more constant with it rather than flare ups… My EM doesn’t get to me the worse part is the connected nerve damage which took away my ability to walk and although EM reduced my walking… I could still walk like a normal person.

Suppose the worse part if we are just focussing on EM is that meds are so trial and error and nothing works.

sorry for the slow reply. the hardest part for me is the winter time. im not able to wear sneakers or boots. it just snowed and i was still wearing flat shoes. at times im able to wear sneakers but it has to be freezing outside for me to do that. the once im in the building, i HAVE TO take the shoes off. if i dont i'll be out of school for days sometimes even weeks.also not being able to stand for a very long time. its hard for me to work on things and makes me second guess my selfwhen applying for any job. right now im on allegra for the hives and indomethacin for the pain as well as baby asprin.

tillyp said:

I take amitriptyline, codeine and a sleeping pill. Due for Iloprost infusions in just over a weeks time. Am limited with opiates for pain relief as they affect my breathing so the codeine and sleep pill make things worse. Rock and hard place at times. What is the worst about EM for you?

i love jah said:

yea. i hear you on that one. its the worst.the medication im on really helps. were you perscribed medication yet?

thats terrible. i was also struck with that walking thing. but it cleared up once the docs got me on meds.my feet were always so swollen and itchy that i started walking like i had some discomfort in by butt and i started walking slower lol. it wasnt funny at the time though. i hope the best for you though. im so sorry to hear.i didnt even realize that EM causes nerve damage. first time im hearing that one.

Lauren said:

The worse part for me is not the EM, although my EM is at a pretty high level and I am more constant with it rather than flare ups.. My EM doesn't get to me the worse part is the connected nerve damage which took away my ability to walk and although EM reduced my walking... I could still walk like a normal person.

Suppose the worse part if we are just focussing on EM is that meds are so trial and error and nothing works.


i hope the best for you.ask your doctor about indomethacin. it helps me alot with pain.....when i take it how im suppose to,which is 2 a day instead of how i take it, 1 every when i feel like it ha. i just dont want my body developing an immunity to it
Tom said:

and being new to the forum, I have to say the level 10 burning pain and the regular pain if this in fact what I have.....the wife and I are not of retirement age but both have retired. They say retirement is the golden years and it seems more like the rusty years with the pain in my feet. Almost afraid to go anywhere as I dont know when my feet might get severe or not. So hesitant to travel and enjoy retirement like I expected to and it frustrates the wife. Looking forward to reading all your posts as the more I read the more I will learn.


i know EXACTLY how you feel.congrats on your wedding too. i use to live my life in fear of doing anything fun with my family because i didnt want to ruin the trip with my flare ups. when its freezing outside, there is a possibility of u having a flare up.its so cold that the nerves are being numbed and the switch over from cold to hot makes our nerves upset. kind of like when your playing in the snow with no gloves and run your hands under hot water. EM is very tricky.it cant be too hot OR too cold. stay away from heat as well. heat will eat you alive! i had too learn the hard way.


MarshaK said:

Aside from the pain, the worst thing for me is the unpredictability of flares. My EM is atypical - I have flares even when it's below zero and I haven't done anything strenuous. I'm getting married this spring and hope to honeymoon in Scotland but I live in fear of a flare ruining the trip.


i know how u feel. i had the same problem. it was to the point where i thought i would never be able to have a job or drive a car. ask your doctor about indomethacin. its been helping me with pain when i take it how im suppose to. try to be occupied.when i was first diagnosed, the tv was my best friend lol spongebob was my bestfriend,and maury.i was also to the point that i would take sleeping pills so i can go to sleep. sleep was my only soother.my eyes needed to rest from crying and besides emotionally tired, i was physically and mentally tired! it drove me crazy.i couldnt keep myself occupied because my body wanted to always do the opposite. i couldnt read a book because my feeet were always itching and burning and hurting. the worst. i will say though that one thing that helped me have hope was the bible.very true. though i couldnt "read" it,i would see what i can do then cry,as usual because i couldnt concentrate. i felt like a mouse.no one understood my pain. it would be crazy how people think im listening but im too busy thinking of was i can have relief for tomorrow or at night or how i will explain to the person in nicer terms" please stop talking, i cant 'hear' you. my mind isnt 'here'"


R. Mike said:

For me, the worst part about living with EM is the noise of pain. There is never a quiet moment. When I'm alone the pain seems more intense because there are fewer distractions. The pain crowds out all my thoughts and fills my head with the noise of intense clutter banging back and forth across my brain, legs, feet and toes. When I'm in a group setting the pain is so dominant in my thoughts that at times I'm unable to follow or understand what's being said. The noise of pain is so loud the outside world can be blocked from my consciousness. Sleeping with all this noise is next to impossible My eyes see people but I'm not really looking at them. My brain is searching for some kind of relief that it never finds. My being is trapped in this cauldron of boiling pain that can't be understood by anyone in my life. The noise of pain is deafening.

WOW! i'll keep you in my prayers tonight. thats crazy! and yes! i cant cover my feet either. if i do, the heat and coldnews have to balance out so that my feet wont swell and i have a flare up. do you get hives? try wearing flats,the shoes that are opened on top. be carefull not to get ganegreen. PLEASE!also try Aveeno active naturals Skin relief moisturizing lotion with cooling menthol. that should help alot. please dont let your feet get too cold. i did the same thing and had to go to the hospital because the blood was flowing so slow to my feet. PLEASE BE CAREFUL! i cant stress that enough! that lotion i mentioned relieved my itching and burning due to the menthol in it.try it. i think it's only $8...the most.

clarissajo said:

Not being able to cover my feet in winter, without severe consequences. When I have to go out, I have to wear shoes (I live in Idaho!), but when I get to my doctor's appt or whatever I have to take them off! Can't have a blanket over my feet, even if they get cold, without waking up an hour later feeling like they are on FIRE.

Have to lie around with my feet up most of the time, or my feet and legs swell and the EM gets worse. The EM on chest, face and ears comes and goes without rhyme or reason (well, always gets bad if I'm the least bit warm). I feel like I have to plan around EM all the time.... I no longer have a life. I have seven autoimmune diseases, fibromyalgia, Lyme disease plus 3 other tick-borne illnesses.... so I am one sick puppy anyway. Each condition causes issues, but EM is one of the WORST.

haha. i felt the same way. everyone thought i was lame, anti-social,its because of my religion, im stuck up, i want attention, people said all kinds of things. i just had to remember that no ones perfect, they dont understand.mayb it would be easier wearing a sign on our chest so people would understand haha.try Aveeno Active Naturals Skin Relief Moisturizing Lotion with Cooling Menthol. that should help with the burning and itching. its at most $8.

Chalx said:

The worse part for me is how nobody understands at all what you're going through. They can be out on a hot summer day running around, but if I'm reluctant to join they think it's because I'm just being anti-social. It's the pain in my hands that's the worst, with my fingertips stinging like they're covered in red ants any time the rest of my body is at a comfortable temperature. I'm in the stage of trying to find something to take the edge off, but probably the absolute worst part is the feeling like you just can't escape it, like you have no control over your life anymore. Not to be a downer or anything haha.

ask your doctor abput indomethacin, thats what itake and it helps with my pain. im so sorry to hear. i hope the best for you. i really do.

Kathleenlynn said:

The worst part of EM for me is the (15 years of pain) has robbed me of enjoying the lives of my grandchildren to it's fullest. I could participate in the early years of the oldest, but not the youngest. They might rarely spend the night and my husband has to do all the entertaining. I try to play with them, but mostly it is in vain. My life is pretty much spent at home with the daily routine of trying to get out of pain.