So I guess I'm looking to find out how other people with EM cope emotionally. For me, everything gets on top of me. Speaking honestly, I feel like I'm losing my mind completely. I lash out at the people that try and help me, I become very self destructive, I cry and scream uncontrollably, I bang on the walls and tables, I cry out for god to help me, I scream at my partner to make the pain go away, i just beg and plead in general, I ask why me, what did I do so bad, as if this is some kind of punishment.....ehh the list goes on. I realise i may sound like a full on psychopath, however I have never experienced a pain like this before, to give you an idea on my pain tolerance i have gone through an induced birth with 1 minute contractions every 45 second for 17 hours without pain medication and also 3 c-sections with paracetamol as the only pain relief. Reading peoples stories on here breaks my heart completely, just knowing other people are going through such a horrible thing upsets me....no one should ever have to experience anything like EM or otherwise. I really respect each and every one of you. Tell me how each of you guy make it through each day,
Wow, I hardly know what to say. I have suffered a lot with EM but it came on gradually. To have it start so suddenly and have a baby to care for on top of it…no wonder you feel like you are losing it. I use ice packs and cold water (being careful not to damage my skin). I have an electric wheelchair and a scooter. It was hard to reach a point, mentally, where I felt comfortable using them but they have given me a lot of my life back. Even though I carry ice packs and cold watered everywhere, take morphine, can’t walk much, etc…I seldom actually THINK about my EM. I have just gotten used to the changes in my life. I go to a pain clinic, a hypnotherapist, am on disability… EM has changed everything. But it is possible to adjust and still have a good life. New things will take the place of what has been lost.
I’m sure it is not much consolation to hear me say that. For a long time, all I could think about is how or when I might be CURED. And whether or not I should keep living if I couldn’t be. Please try to get past that kind of thinking. Focus on new ways to do things. Ways to cope with the pain if it can’t be eliminated. Hypnosis, meditation, spinal cord stimulator, nerve blocks, medications. There are many things to try. Maybe you could get some kind of household help. A chronic pain support group. Not only do you have big changes to deal with; so do your family and friends. They need to understand what you are going through, how they can help, what you can still do and what you can’t.
Be methodical. Go through the different forums online, read books, talk to people…then make lists of things you need to try and to research further. Questions you need to get answered. Help you need to arrange for yourself and family. Treatments and medications to try. Favors you can ask from friends.
I’m just so sorry that you have been hit so hard and fast. Hang in there. You are not alone. Things will get better.
Hi, I remember feeling similar to that when my EM started 7 years ago. I was very desperate to find out what the heck was going on with my feet and why. I finally realized that I am in control of my health (& pain). I have found out thru trial & error (while keeping a food diary) which foods would trigger a bad flare. I also started yoga. I can do it in the morning but not at night.
I know it's hard but try to be positive & KNOW that it will get better. Look into everything! Even alternative medicine and practices like reiki. I KNOW you will be able to get a hold of it eventually. Then you & others around you won't have to suffer so much. Karen
It’s 7:35 am and my left foot is on fire. The weather turned cold and didn’t offer any type of relief from this awe inspiring pain. I’ve had to gasp for breath and hold on a couple times already this morning and it’s still coming. All my days have hang on periods where my goal is to “get through it”. That’s what I do; I work as hard as anyone in their respective profession to just get through the minutes/hours of absolute pain domination. Music (Pandora), meditation, rest/relaxation, da pups and the outer reaches of my mind are working tools to steer my thoughts toward something other than the pain.
Writing is a secondary tool, meaning I do very little writing when peak hits, however putting my thought on “paper” has helped me understand the exact nature of my pain and how it manifests itself throughout the day/night/day/night… I have written about my pain a few times during peak to try and accurately describe the different concurrent sensations melding in my lower legs. It’s fun to dissect the pain and identify each individual sensation, then write graphic descriptions. Writing has helped me verbalize with more detail to doctors, family and others who express interest and engage me in conversation about my ugly lower legs. Mostly, writing gives me a no rules, whatever I want to say avenue to vent and be able to get to the next minute.
Everyone is different with their EM symptoms. Mine are generally at night. When my feet are still red in the morning a cup or two can calm them down since it constricts my blood vessels.
If I have a very severe, strong flare I can hardly do anything more than stick my feet in cold running water and soak them in the sink while gritting my teeth and breathing as if I was in a lamanze class. When it subsides enough to walk, I lay down and put cooling creams on my elevated feet.
Then I can write about it on the next day. I usually try to figure out what caused it.
I've had EM my whole life I have the geneic mutation. My dad was diagnosed with it when he was 9 at the mayo clinic in Minnesota. There is about a 75% chance that my children could have it, we already think my little 2 year old neice has it cause her feet and hands turn red in the bath tub. I have to stay strong cause I know she will need help coping with it when she starts to ask questions about why she hurts.
The hardest was my teen years, cause I was trying to fit in and do things that other teenagers were doing, like going to camp or riding bikes everywhere in the summertime. It was really hard trying when my feet would start burning and my friends would look at me and they would try to understand but even I couldn't understand. I have had several fantasies growing up of suicide or having my feel amputated, but with my luck my nubs would probably burn lol. but in all seriousness i don't really know cause I have never known a life without erythromelalgia. I never had a time where I could do all these great athletic things. I am so sorry to the people that have been able to be active their whole lives and for them to just wake up one day and not be able to. I pray that you can find peace about it.
I feel for you girl, at one point I was were you are at I would have done anything to be out of pain. At one time I wanted to take a knife and cut off my feet because I thought the pain would go away if I did. It killed me alot of the time sleepness nights and countless of doctors looking at me like I was crazy and never believeing me. Until one day a doctor finally did, thank god I still have pain and insomina then fatigue always fun. But the pain isn’t as bad as it was. I just live day to day I don’t make palns for anything anymore cause I never know how I am gonna feel. I am not supposed to get stressed out but other then I guess its okay I never will be 100% better I wish for those days back but they never will be here agian. I hope you get some relief very soon. And I hope this message helps you. 
WOW... can I relate. I love reading that there are others of us out here ~~~ And sorry at the same time. I've punched walls because it hurts so badly. Some days, I can't even speak, or think. Currently, I am on NO medicines and decided to stop trying everything. (For about 2 1/2 years) I've tried over 50 medicines. I love to dance, hike, bike, play sports, go to concerts etc. I feel like my life was taken away. I used to work, and can't anymore. I have cried so much. My life is always revolving around the temperature, inside, outside, and taking ice packs with me where ever I go. My A/C bill in the summer is high. I go through about 4 fans a year. I was pissed at "God", for a long time. We were made as emotional creatures, and I decided that it was o.k. for me to feel low. I contemplated not being here anymore several occasions. I have told SO MANY doctors that it has to be impossible for a human being to withstand so much pain and still be conscious. I gave birth naturally too. Loud Music, a COLD house, and distractions help. I also actually "tune in" to the pain, and experience it with full intention, when it hurts so badly, I put my mind into now, I used to push it away. I eat spicy foods, to increase my endorphins, I think that's why punching something helps. I wanted to be an MMA fighter because I know having went through this, I could take any girls best shot, and remain standing. There would be no hit to any portion of my body, that would compare to this. I have written letters to specialists everywhere, and even requested help from colleagues of specialists. I haven't made peace with this as being part of me, I still believe my body can heal itself. Pain can take you to almost Euphoric states of meditation. Some days I can do it, others I can't. I don't plan anything anymore either like Angelheart360 above. My life is different then it was. What I feel like most of all, is that I was/am all alone, and every doctor, even those at Mayo Clinic, do NOT have the answers. I put my "faith" in Pain Docotors, and was crushed to be released from there care because " I was beond treating". This spiritual journey I am on has brought me to myself. I hope seeing this helps you feel like you are o.k. and not crazy, Much Love and Light
The most important things to help me cope are 1) HOPE; always working at finding something new to try that may help even a little, 2) people to talk to who understand; online EM groups & empathetic doctors, 3) advocating for myself with doctors, at work, with family and friends to have the environment I need to minimize pain and refusing activities that are triggers with no shame or guilt and, 4) as someone else mentioned, methodically figuring out triggers and anti-triggers like EXACTLY what the thermostat must be set on to sleep, etc.
There are many, many things that help a tiny bit each. It takes a long time to figure it out and I'm still working on it. But I'm much better off than I was at my EM peak around 1999-2001. If 50 different things help, and you do them all, it really makes a difference. But we're all different so it takes a lot of trial and error to see what helps. I just recently discovered that some triggers that other people have, I actually have too but hadn't realized it because instead of immediately triggering an episode, some things just lower my temperature threshold in general so the connection wasn't obvious. My most recent discoveries along that line are regarding some nutritional supplements, foods, fabrics and shoe insole materiels and arch support types. Things can get better. Not easy, but much better.
Hi, I was 31 not so long out of college when my illnesses and EM came into my life. My career was just taking off, I was finally ready to think about settling down, buying a house, a family and WHAM. I think for the first few years I kept thinking I would simply wake up one day and feel better. I would be able to go back to work and get on with my life. I have been on SSDI for four years now and feel I am loosing everything I have ever worked for. Alone, in pain, I have lost my medical insurance, edge closer to never being able to have children of my own and can now no longer afford my home (apt) where I have lived for 11 years. I feel desperate, angry, alone and left to rot. I sit by myself, in pain, sick or both day after day still wishing I could "wake up." Sometimes I stay in bed as my dreams are better than my life. My family has been devastated at what has become of my life, and have tried to do all they can in their retirement including being financially drained. I wonder how anyone can ever love me and all of my issues. I understand my limitations are difficult on friends and have watched them all fall to the way side busy with their own family's and lives. I have a therapist. I try to remember to stay positive and remember if I can achieve 4 good hours per day that is a success. But I am not very good at it yet. I just feel tired of being sick and in pain. I don't wake up thinking what I can do today. I wake up wondering if my body will let me do anything. I have become totally isolated. I do find comfort on all of your posts
I TRY TO RELAX AT LEAST 4 OR 5 HOURS A DAY.....IT WORKS....FEEL SO VERY LONELY SOMETIMES.......GOOD LUCK JAN
I have such a mild case of EM compared to so many on this list, yet am still going through the stages of grief on my way to accepting what has happened/is happening to my body. For me, a huge part of coping is my Christian faith and belief that my trial will strengthen me as a person and that I never have to feel alone through it. I still haven't figured out how to talk to people about it, and I still hold on to the hope that perhaps this isn't really happening to me and that it will somehow all go away.
Every day I awaken with the pain, but cool my feet and then do some exercises to get my circulation moving. It helps a lot. Since starting on the aspirin, I can usually distract myself most days enough that the pain is only in the background and I can work productively. But, I no longer schedule events in the evening as that is when I flare most easily. Music does wonders for my mood, as does consistently using positive thoughts and afirmations. Even making a conscious decision to smile helps, as does looking for and recognizing the blessings in my life.
I hope you're able to learn some strategies from the wonderful people here who have walked where you are walking and I hope you find peace.
I am relatively new to EM, I have only been diagnosed 5 months. But I find that I have my attention span is so much shorter than it used to be and I lose my temper a lot more easier than I used to. I get angry and cry in frustration at myself and the pain I am in and the inability that I have to do simple tasks. For example, when I am in a lot of pain, I am unable to get comfy on the sofa on my own or get up off the sofa on my own. I am quiet a large lady but I struggle to just get comfortable. I don't really know what advice I can offer as I would also love to know how people cope!
This is an old thread, please tell me if things are ok with you. You say coping emotionally, I say mental health. I've been in that system for a long time, learned a lot. If you don't think you are coping with all that, and it is a lot to me, you may not be. Can you go get checked for depression? At least Google symptoms, OK? But I think the biggest thing that I have done to cope is to accept what is happening, is happening. I accept my pain when it comes even though I don't want it to begin with. EM changed my life, and I now accept that change.