Adjusting to a life with EM with you family

General
1

Hello Everyone,

I was diagnosed with EM a month ago. I am a young active 24 year old living in sunny southern California. If you have EM, you probably just read that and said "poor thing" or "bless her heart" (if you are from the south)- because you know that the sun, heat, and exercise are not EM's best friend. I am slowly learning this as well, and it is almost devastating. Although I do tend to worry about how I will manage the pain each day, I worry more about how this will affect my friends, family, and relationships. I have only been dealing with this for a month, and many of you have been strong and worked through this diagnosis for years. I really look forward to your comments, coping skills, and learning from you all.

I know EM is different for everyone, and for me, it has really affected my social and occupational life just in the first month. I feel bad telling my friends I can't go to dinner because I don't know how hot the restaurant will be, and how it will affect my feet. Or, I can't go to the gym because of my feet. OR having to leave early from work because the pain is so bad I can't concentrate. It's been a month and I am so tired of using my "FEET/EM" as an excuse.

I guess I want to know how others have coped with the diagnosis, and how you have adjusted/made accommodations to continue the things you love/loved doing before EM?

Any feedback and suggestions are greatly appreciated. I have started a positive note book and my quote for the day is: You never know how strong you are until strong is the only choice your have left- Bob Marley

Thank you all! I am a new member to the group and this is my first post :)

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2

Hi Little K -

Welcome to the group (although I'm sorry that EM is even on your radar)! You sound like a very positive person and it's great that you really want to figure out how to move forward keeping life as normal as possible. I'm amazed that you were diagnosed so quickly - that is almost unheard of! Most folks spend a lot of time just trying to find a doctor who has a clue about what is happening to them. At least you have that part taken care of.

I also like to work out at the gym so I just do it anyway. I definitely pay the price for it in terms of the effects on my feet, but it's worth it for the benefits to my sanity. I find I've grown accustomed to the pain and discomfort over time. Initially, it was all I could think about but now I am able to shove it to the background for the duration of the workout, knowing that I have cooling strategies to use once the workout is finished. Once I'm home, a cool shower really helps as well as elevating my feet for awhile and the careful use of ice packs. It typically works pretty well.

Regarding social situations, I really try to take control of where, when, how long as much as possible. It often goes back to weighing how much I want to go out vs. putting up with the discomfort. If your friends are aware of your condition, they might be more than happy to accommodate you. If mornings are a better time of day for you, see if they'd like to meet for brunch. If you want to avoid a hot restaurant, ask them if they're game to sit outside. Or invite them to your place and order in. I've found you can get fairly creative once you figure out what works for you.

Another lesson I've learned is that I think about my feet WAY more often than anyone else does. Because the pain and discomfort can be so persistent (or you're trying to avoid bringing it on, or worrying about the next flare), it can become hard to focus on anything else. But the reality is that others are thinking about their own lives and will likely only think about your feet when you bring it up. So I try really hard not to bring it up.

It's been two years since the onset of my EM and it's definitely been challenging. At first, I was so distraught and desperate - just wanting to find a way to make it disappear. It's extra difficult having a condition that very few medical professionals know about. I can't count the number of times I've thought how unbelievable it is that I could have something that is so rare and has no known cure at this point. It is so unlike most conditions where doctors can give you a structured tried-and-true framework for how to get better. But over time I've adapted and it has gotten mentally easier. Thankfully, my condition has not progressed so I feel very fortunate for that. I know there are many people on this site who are in a much more severe state. My advice here would likely not be very useful to them. I hope that it can be useful to you.

Keep up the positive attitude (but don't feel bad if you have to throw a tantrum now and then). :)

Best wishes

3

Hi nwgirl

Thank you so much for the comments and suggestions. I really like your creativity and positivity. What I like even more, is giving yourself/and myself the permission to be sad, feel pain, and "throw a trantrum". Yet, be sure that I have less of those moments and more positive moments.

My primary care doctor had no idea what was going on. She thought that that the pain was coming from my joints- so she sent me to a Rheumatologist. While starring and poking at my feet, he decided to bring in another doctor and the two of them together diagnosed me. I was then seen by a dermatologist (I refused to believe that my diagnosis was true) and he also agreed with the diagnosis.

I am a masters level social worker and work a lot with clients regarding their mental health. We talk about the pros and cons of being diagnosed. The cons, often times stigma, the label etc. But then we talk about the pros, identifying the problem so you can treat it, the resilience that often comes from trauma and hard times etc. It is definitely easier to talk to someone rather than being on the other end of the table; which I am now.

I am only 1 1/2 months into this diagnosis- and I have moments of weaknesses almost every other day, but they are short and brief and I keep telling myself that something positive will come from all of this. Whether it makes me a better social worker, a better friend, enjoy life and all the little moments etc.

Thank you again for your reply, positive words, and helpful comments. Also, thanks for the gym motivation. You have given me hope that I can get back in there and handle this pain :)


nwgirl said:

Hi Little K -

Welcome to the group (although I'm sorry that EM is even on your radar)! You sound like a very positive person and it's great that you really want to figure out how to move forward keeping life as normal as possible. I'm amazed that you were diagnosed so quickly - that is almost unheard of! Most folks spend a lot of time just trying to find a doctor who has a clue about what is happening to them. At least you have that part taken care of.

I also like to work out at the gym so I just do it anyway. I definitely pay the price for it in terms of the effects on my feet, but it's worth it for the benefits to my sanity. I find I've grown accustomed to the pain and discomfort over time. Initially, it was all I could think about but now I am able to shove it to the background for the duration of the workout, knowing that I have cooling strategies to use once the workout is finished. Once I'm home, a cool shower really helps as well as elevating my feet for awhile and the careful use of ice packs. It typically works pretty well.

Regarding social situations, I really try to take control of where, when, how long as much as possible. It often goes back to weighing how much I want to go out vs. putting up with the discomfort. If your friends are aware of your condition, they might be more than happy to accommodate you. If mornings are a better time of day for you, see if they'd like to meet for brunch. If you want to avoid a hot restaurant, ask them if they're game to sit outside. Or invite them to your place and order in. I've found you can get fairly creative once you figure out what works for you.

Another lesson I've learned is that I think about my feet WAY more often than anyone else does. Because the pain and discomfort can be so persistent (or you're trying to avoid bringing it on, or worrying about the next flare), it can become hard to focus on anything else. But the reality is that others are thinking about their own lives and will likely only think about your feet when you bring it up. So I try really hard not to bring it up.

It's been two years since the onset of my EM and it's definitely been challenging. At first, I was so distraught and desperate - just wanting to find a way to make it disappear. It's extra difficult having a condition that very few medical professionals know about. I can't count the number of times I've thought how unbelievable it is that I could have something that is so rare and has no known cure at this point. It is so unlike most conditions where doctors can give you a structured tried-and-true framework for how to get better. But over time I've adapted and it has gotten mentally easier. Thankfully, my condition has not progressed so I feel very fortunate for that. I know there are many people on this site who are in a much more severe state. My advice here would likely not be very useful to them. I hope that it can be useful to you.

Keep up the positive attitude (but don't feel bad if you have to throw a tantrum now and then). :)

Best wishes

4

Hello Little K! I was diagnosed there a little over a year now. 39, active, full of loving things, two horses (riding boots farewell since!), Worshiping the restaurants in the evenings and conferences, etc .. I went through a very hard stage, almost suicidal, because my life completely escaped me. I entered the em very suddenly one night with symptoms that progressed rapidly restricting myself more and more. Currently they stopped progress but have not decreased. Some tips that allow me to continue to live and work (I'm a teacher).For me, it is difficult to walk more than 10 minutes without putting water on my feet.

1- I do not cooled my feet as I can because I noticed it kept a vicious circle.

2 - I do not hesitate to show people who do not understand my pathology medical reports of the hospital indiquand that pain is "severe and debilitating."

3- I am handicap recognition approaches and have a priority card for not queuing (I'm from France).

4-I avoid restaurants in the evening to the fullest and I explain why. I go there for lunch.

5- I no longer wear closed shoes or socks.

6- I travel by electric bike and I can walk beside my friends rolling gently and chat with them.

7- When I walk, I am equipped with fresh water that I put my feet on a regular basis (every 5 minutes in the summer) to contain the pain to an acceptable level. I also have refreshing sprays inside. Wet my shoes and do not tighten at all that when I walk, there is evaporation between my foot and my shoe and it naturally refreshes.

8. At work, I asked the facilities and provides medical documents.

9- I am looking for all possible ways to reduce the pain, even a little bit. All combine makes a little more.

10- I meditate, I make projects anyway, I think it will pass one day when I realized why I have this !!

11 – To sleep I take a very little meal on the evening and use hypnosis to fall asleep.
5

You are very fortunate to have gotten a diagnosis so quickly. I am still trying to get a diagnosis after 3yrs of struggle. I have just now come to the realization that a diagnosis isn’t going to make it go away. So I chose knowledge. Since I found this site of loving , caring people I have been so much better off. I have learned more coping strategies from the people on here than I had from 3 specialists my gp and my own experiences. My advice would be to live the best you can in each moment. Take all advise and sift through to what works for you. One thing I’ve noticed with this condition is that there is no real “norm” except that we all understand the burning pain and frustration. You are already blessed with what sounds like an amazing team of doctors and a contagious positivity. I think you’re many steps ahead on this journey

6

Thank you all for sharing your stories, suggestions, and advice. I really appreciate every bit of it. I am also very thankful for this site and having so many people to understand this situation.

Even more, I find it exciting to meet so many great people. I can't say it is a good thing to have EM at all, but I would have probably never met you wonderful people-or even known what EM is/was/

Thanks everyone! Thankful to continue my journey with all of you.