Being an EM sufferer means chronic pain . Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
As part of our 'Smilin thru' feature we wish to compile our own 'living with erythromelalgia' letter.
So, please take a few minutes to share with us what you would put in your letter to people without the chronic pain of EM?
What would you like people to understand about Erythromelalgia before they judge you?
I second that reply! I will be back, I’m on my way to the Doctor(ugh!) I will be back to share! My Doctor visits are quite an ordeal, I may not be back till tomorrow. Torie
One thing I would like to put into the letter is that I haven’t become anti-social, I haven’t had a personality change, I haven’t even lost my sense of humour, but EM has stolen my physical ability to join in. I didn’t choose to become a recluse and miss out on all the fun.
What I would want to say about EM is that what you you are seeing is not what I am feeling.
I understand TorY. Dr visit is usually it for the day and sometimes two for me as well. I hope it goes well for you today.
I like what Nel said… what you are seeing is not what I’m feeling. So true.
I would like to add that I have bad days and worse days even every once in a blue moon OK days. I do just as much as I am capable every day. Just because I may be able to acomlish something one day it doesn’t mean I can do that same thing everyday. It is often something I have saved up for if you know what I mean and something I will pay for dearly in the days to come. So please don’t take what I do for granite Or expect this ie dinner or make myself look nice on a daily basis because it’s just not possible.
I understand what Nell is saying, but I have become somewhat a recluse...I am tired of explaining, of slapping the smile on my face, of feeling guilty...of everything. When I do muster up the strength and do something to "help" I usually break something.
Here is what I would say to non-chronic pain sufferers: Sometimes we are just too tired and hurting to explain how we feel and "No, nothing helps."
It would probably help to hear from some of the caregivers that help and suffer along with us.
I clearly do not know what to say on this front. This sort of burning pain and swelling for me in legs and feet does by its nature cause people to adopt a reclusive type of existence. For me I have largely accepted this. I have to put something on my feet to get outside - this footwear is now normally beach shoes. When shoes have to be worn, I can't wait to remove them when I get home, and travel around indoors bare footed. I think I am so used to burning legs that this condition is "natural" to me now. I don't talk about my condition and there is no one save doctors for me to ask nor is there anyone to ask me as I have no living relatives in the county. My daughter who is "of a different age" has I think no understanding of Erythromelalgia and apart from those occasions when I am housebound and need to extra elevate, does not realize that I feel different than she does .I read all that I can about this affliction - EM seems to have so many variations that it is difficult to imagine that research will soon pinpoint a blanket cure.
dazsa said:
I understand what Nell is saying, but I have become somewhat a recluse...I am tired of explaining, of slapping the smile on my face, of feeling guilty...of everything. When I do muster up the strength and do something to "help" I usually break something.
Here is what I would say to non-chronic pain sufferers: Sometimes we are just too tired and hurting to explain how we feel and "No, nothing helps."
It would probably help to hear from some of the caregivers that help and suffer along with us.
It's like living surrounded by thunderstorms 24/7. Lightning may strike any part of my body at any time and it's painful and the rolling thunder continues the pain indefinitely. Sometimes the storm is mild and seems far away and sometimes it's so severe that I have to hide in a dark corner. But unlike weather predictions I cannot predict how I will feel tomorrow or the next hour. If you want my company you will have to accept that my smile may fade at any moment and there is nothing that you or I can do about it. You will have to ignore that I may do *strange* things, like wearing sandals when you wear boots, like wanting a glass of ice water at the dinner table - not to drink but to wrap my hands around the cold glass. And when I say *I can't do that!* don't argue with me - just say: * I am sorry* and leave it at that.
to be judged would be good, as sometimes peaple who judge can actually affend you more than the pain at times…No I’m not lazy, no I’m not imagineing or making my pain up,just cos someone can’t see it it dosnt mean we can’t feel it…I get sick of being judged,stared at thought as a lier,being lazy,puting on a brave face,insulted,explaining,and more,and too top it off sick of the pain, if only peaple could understand and not judge ,but like I say: to know u would have to have and to have you would suffer just like us,
"Unless people have experienced and felt the trauma of living with constant chronic pain - day in - day out, then it will not matter how many tears you shed trying to explain to them what it is like - they will NEVER understand"
- Belive me I have tried, whether it is a loved one, a relative, a doctor, a nurse, a social worker or a person in the street - these people just do not have a clue - it is not their fault, but they just cannot understand, because they have not experienced it for themselves ... That is just the plain & simple truth of it.
I have had enough of trying to explain it to people - the desperation of trying to get them to understand has left me totally frazzled - burnt out and it has made me anti social and feeling totally helpless as there is just false hope with everything I try to get relief - I can't seem to string 2 days of being pain free together - I have forgotten what it feels like - it has made me angry, frustrated, emotionally hurting as much as the pain of EM is causing me and that seems to compound the total pain of living (existing) with chronic pain irrespective of what disease or condition it is.
I feel totally lost -hopeless, helpless, intimidated and let down by the whole process and feeling in such a negative state that I know that it probably won't be too long before I put an end to it all.
I can't see any point of continuing a life of misery and endless pain - if you can't understand that then I have really wasted my time writing this....
This may be my last time here - for those others out there who do believe in GOD, then PRAY for ME - I can't take any more of living (existing) like I have been... there is just no point in doing so - I have even tried to donate my body for research into EM and Diabetes but NO ONE wants it - and do you know how totally useless that makes me feel and I can't see any point to life at all ...
Thanks for all of the great comments--I think you've covered much of what could say.
I thought I'd add something that has helped me deal with acquaintances and strangers. I have prepared this little script in my head for people I meet in the street or stores who ask what's wrong with my feet (which are always bright purple/red when I am standing/walking).
"I have a non-communicable disease called erythromelalgia--called EM for short. It causes too much blood to flow into my feet. It is very painful. It feels like I am putting my feet into scalding bath water, but I can't take them out. I can't wear shoes or socks because they make it worse. There is no cure for this disease and no really effective treatment. Thanks for your concern for me. The more people ask, the more people will know about it--and the more likely we'll get the attention needed to find a cure for this terrible disease."
I find people are so kind and often offer to help--it's been a great way for me to feel that I can make a difference one person at a time. Knowledge is power.
Don't give up, frostbite. You've got to believe that help is on the way. Many pharmaceutical companies are researching a Nav1.7 pain blocker. They're in clinical trials. If you quit now and a solution that could provide you relief comes to market next year, that would be a shame. Just hold on. Use stronger opiates in the meantime.
Don't quit.
frostbite said:
All I would like to say in this regard is -
"Unless people have experienced and felt the trauma of living with constant chronic pain - day in - day out, then it will not matter how many tears you shed trying to explain to them what it is like - they will NEVER understand"
- Belive me I have tried, whether it is a loved one, a relative, a doctor, a nurse, a social worker or a person in the street - these people just do not have a clue - it is not their fault, but they just cannot understand, because they have not experienced it for themselves ... That is just the plain & simple truth of it.
I have had enough of trying to explain it to people - the desperation of trying to get them to understand has left me totally frazzled - burnt out and it has made me anti social and feeling totally helpless as there is just false hope with everything I try to get relief - I can't seem to string 2 days of being pain free together - I have forgotten what it feels like - it has made me angry, frustrated, emotionally hurting as much as the pain of EM is causing me and that seems to compound the total pain of living (existing) with chronic pain irrespective of what disease or condition it is.
I feel totally lost -hopeless, helpless, intimidated and let down by the whole process and feeling in such a negative state that I know that it probably won't be too long before I put an end to it all.
I can't see any point of continuing a life of misery and endless pain - if you can't understand that then I have really wasted my time writing this....
This may be my last time here - for those others out there who do believe in GOD, then PRAY for ME - I can't take any more of living (existing) like I have been... there is just no point in doing so - I have even tried to donate my body for research into EM and Diabetes but NO ONE wants it - and do you know how totally useless that makes me feel and I can't see any point to life at all ...
It makes me feel sad to hear that you are in so much pain and that you want to give up the fight. You have been a great source of information and compassion to many of us in this group. We need you--we know you have value.
I really hear you. At this point, I do not have any pain-free waking moments, like many folks in this online support group. While meds have helped, they do not give me a life outside a rigid, temperature-controlled environment. It's very difficult to explain one's problems to medical people--they are generally the worst. And getting help is so very difficult even in a large, cosmopolitan city in a wealthy nation like Canada.
What I have found makes a big difference for me is having counselling regularly, doing self-hypnosis, meditation and tapping. And I continue to do research, volunteer work on my computer and doing things I find interesting and fulfilling.
I am convinced that it is we folks in this support group who will actually find the answers to EM. We have the capacity to make a difference for ourselves and those to come. I would like to do some research with others from this group to help the outside world understand EM better and publish that work online. What is currently available is so sparse and technical it really doesn't describe our experiences at all. Your research has been invaluable to me as a relatively new member. Please do not underestimate your worth!!!! I hope you'll stay with us to continue our work and fight.
I am not religious, but I am a spiritual person and will ask the universe to offer you some sign that you matter and that you will find some real comfort in the days ahead for your physical and emotional suffering.
Friends, family and acquaintances can take a while to understand that it is a real problem, and a chronic one that, no, it hasn't gone away yet. I was also perplexed when people insisted they wanted to have this disease even though I explained how bad it was and how much worse it could be. The non-communicable bit is important, I've recently started saying that too!
I agree that this group is fundamental for finding answers to EM. We have problems that are not debated by the scientific community. I often find myself saying "several people on the forum have said that" regarding things that I find important but haven't found anywhere in the literature. It might be a communication problem, as it is seems to be difficult with most doctors to tell them all we feel is important, let alone things that might be important. If we could compile relevant data that hasn't be examined yet we might greatly contribute to finding a cure.
Don't give up, frostbite. You've got to believe that help is on the way. Many pharmaceutical companies are researching a Nav1.7 pain blocker. They're in clinical trials. If you quit now and a solution that could provide you relief comes to market next year, that would be a shame. Just hold on. Use stronger opiates in the meantime.
Don't quit.
frostbite said:
All I would like to say in this regard is -
"Unless people have experienced and felt the trauma of living with constant chronic pain - day in - day out, then it will not matter how many tears you shed trying to explain to them what it is like - they will NEVER understand"
- Belive me I have tried, whether it is a loved one, a relative, a doctor, a nurse, a social worker or a person in the street - these people just do not have a clue - it is not their fault, but they just cannot understand, because they have not experienced it for themselves ... That is just the plain & simple truth of it.
I have had enough of trying to explain it to people - the desperation of trying to get them to understand has left me totally frazzled - burnt out and it has made me anti social and feeling totally helpless as there is just false hope with everything I try to get relief - I can't seem to string 2 days of being pain free together - I have forgotten what it feels like - it has made me angry, frustrated, emotionally hurting as much as the pain of EM is causing me and that seems to compound the total pain of living (existing) with chronic pain irrespective of what disease or condition it is.
I feel totally lost -hopeless, helpless, intimidated and let down by the whole process and feeling in such a negative state that I know that it probably won't be too long before I put an end to it all.
I can't see any point of continuing a life of misery and endless pain - if you can't understand that then I have really wasted my time writing this....
This may be my last time here - for those others out there who do believe in GOD, then PRAY for ME - I can't take any more of living (existing) like I have been... there is just no point in doing so - I have even tried to donate my body for research into EM and Diabetes but NO ONE wants it - and do you know how totally useless that makes me feel and I can't see any point to life at all ...
So long and Farewell to All here -
frostbite (Greg)
COOMA NSW
Australia.
Hi Frostbite. I thought about you a lot last night and today. I have been sending positive thoughts your way and meditating on your behalf. I hope you are able to sense them. Recovering hope is hard when you're really feeling depleted. Please reach out and find someone where you live who you can talk to. I care about you and I am certain others do too. Sometimes when things have looked so bleak, I promised myself I will hang on for one more day and then I would see. Then I promised I'd hang on for one more day. I'm still here!
I am giving up as well. Life is unfair, and the only free decision I still have is to determine when my life and hence, my suffrance end. Maybe this will wake up some special people. those who got me to the point I am now - physically and mentally. But I guess even this wont happen, the world will keep moving as if nothing had happened.
I refer to my pain with EM as 10 times worse than your worst sun burn. I too am grounded from doing all the things I love to do. B4 EM I was a very active person, working out three times a week at my health club, playing golf often in sunny florida, playing pickle ball, playing softball and loving the outdoor and lots of sunshine. Now with EM its definitely out of the heat, sun and humidity. I often say to my wife I know you don't understand my pain and I wish you could just feel it for 5 sec. so you could better understand what I feel almost 24/7.