I have recently been diagnosed with E.M. and raynauds.
I don’t know what to do. I don’t know how to plan my future.
I can’t wear shoes, I can’t wear socks. And I can’t find a job that allows me to wear sandals!
My question is what did everyone else do when u were in this situation?
Should I just prepare myself to be disabled and sitting at home for the rest of my life?
I don’t. Know how to wrap my head around that, I once was a very active outdoors type of person and I miss my old life.
Any advise would be awesome because anyone else I talk to doesn’t understand and tells me everything will be fine and I have a hard time believing that.
Thanks
If you cant use sandals, as I do most of the year, you could buy plastic winecoolers and put them on your feet when nobody watches--although I do it in open because I have to...
With a medical diagnosis, you should be able to work with wearing what you need. This is under the heading of making reasonable accommodation for a person with a medical problem. Unless the job entails specific dress code that everyone must follow you should have the right to ask for this minor change. Get more information about reasonable accommodation regulations in your state and go prepared to have polite but informed discussion when asking for variance in footwear.
My name is Sean, 30yrs, I've had EM for a little over two years. As for employment, I am a project coordinator which is basically a bunch of office work am I get to sit for most of the day.
1) For starters, if you aren't aware, Dr. Cohen is a rockstar when it comes to EM advise and I would encourage you to check out his page of info on EM - http://www.jaycohenmd.com/erythromelalgia.html (also, these documents help educate family and friends who are trying to understand)
2) Medications & Supplements- keep at at, trail and error till you find some assistance (lots of suggestions are listed on the site above)
3) Compression Socks- These thing are outstanding when it comes to EM. Basically they are tight socks that promote circulation and minimize swelling. That said, I am able to go out at night because I know the EM socks will prevent major flare ups. I dont wear them 24/7 just during times I know I will likely get a flare up and will have to push through it. I purchase 30-40mmgh from Jobst - http://tinyurl.com/jvj8s65
4)Cooling techniques - elevation is good (90 degree angle for my feet) however to cool I typically keep my compression socks on and use frozen bags of corn. Also I have cold towels as previously mentioned. For showering, I stand in a lg plastic bucket with slightly cool water.
Have you tried a largish dose of Aspirin? I tried 300mg and it worked well.
It would seem you are in one of 3 types with EM - platelet mediated (Aspirin works), Primary or secondary.
thank you all for your responses to my question. I went and saw Dr.Pimstone at the university of British Columbia yesterday and he assured me that we would be able to find the correct treatment plan for me. I have primary em. I have recently found out that I am pregnant also. Does anyone have any experiences with em and pregnancy???
Hi KyKy, I'm so sorry for what you're going through, just beginning to adjust. I think it's to your advantage that you live in British Columbia, where hopefully it's a bit cool. I use to walk a lot, too. Now I only go about a mile, sometimes two. I live in the mountains, so when I can't stand it, I lie under a tree with my feet up on it's trunk (I'm getting to know the trees more personally, which I like). And if there's snow (not too deep-) on the ground, I wear Keen sandals, great treads and arch supports and protection, but open and the snow refreshes. And I can walk farther. Even with light socks, the snow helps me.
I'm retired, but if I have to go to town, which involves an hour each way and time in the store, I carry a small ice cooler with cool water, to periodically soak my feet. In summer I wear socks with my sandals, and dip my feet in the cooler to wet/cool the socks. Here in New Mexico, the dryness makes wet things nice and cool. In winter, I bundle (we were 11 below, F last night) and use the vent in the car.
Maybe this is nuts, but can you get a job with shoes on, and then later just wear sandals without asking, and if they complain, bring up Seattlegirl's point that you have a condition demanding sandals. I assume Canada also states such rights?
The hard part might be just being on your feet all day. The blood stays in your feet if you can't put them up. Can you work on a computer? Then you could maybe have a small stool and pillow for your feet? I wish I could think of a perfect job. If a brilliant (???) idea comes to me, I'll speak up.
The best for you! Jane
Hi Kyky. Wow! Congratulations! How exciting and terrifying at the same time. I have no idea how EM effects pregnancy. If you don’t get any responses back concerning that I would consider reposting another question with pregnancy and EM in the subject matter. I would assume if someone has gone through that and they saw you are too they would jump at the chance to help you. I am in Seattle Tacoma area. I am not too far from you but a little too far to just meet up. That is unless you find your way down here any way or me up there. I used to spend a fair amount of time in Vancouver for work but I can’t work anymore. I was a flight attendant before this. All the best to you and your little one. I am very excited for you. Take care
Alina
Thanks for the replays.
Jane that is another one of my issues is being on my feet for long periods of time. I have tried having different types of jobs and by the end of a day on my feet I’m ready to chop my feet off haha. I live in a small town so there really aren’t a lot of options as to where to work. My doctor ordered me off work 2 years ago however I wasn’t able to go on disability because they had not come up with a diagnosis. Now that they have concluded that it’s EM, the doctors want me to get my disability set up so I guess I will just wait and see what happens.
Alina, i have read. Few stories of people with EM that are pregnant or went through it and it sounds like it can go either way, some people say their symptoms go away and then come back twice as bad after the baby is born, some say that their feet are horrible through the whole pregnancy and some people even say that they get EM only during the pregnancy, then never have to deal with it again.
As for myself, I am not enjoying things. I have been very sick the whole time and my feet keep me up all night. I have not been able to find much relief but myself and the doctors would like me to be drug free during my pregnancy, so I’m doing my best to cope. I can’t say that I’m not already counting down the days till I have the baby so that I can get back on a treatment plan.
hi Kyky. I don’t know why I didn’t think of it but I didn’t. You have to stop your meds! I remember what it was like before I had any help with my pain and I wouldn’t wish that on anyone.i don’t know if you have tried chilli pads yet but they are amazing for that night time pain and itching that keeps us up so much. I have two of them. You wet it with just room temp water and wrap your feet snugly in them. It works through evaporation drawing the heat out of them instead of trying to cool the skin itself. It lasts for hours at a time. You can’t walk around with them on your feet so they don’t help for mobility but it does wonders for when you are sleeping or suffering so much you can’t walk anyway. Maybe you could be a lucky one that pregnancy changes things and after you have your baby it might lessen or go away! Hang in there.
Alina
I know this is an old post but I cannot stand anything on my feet…socks or shoes, so not sure how you can wear compression socks.