As the weather has got cold I've realised that certain parts of my job are going to be agony. I have to spend half a day, twice a week outside in the outdoor learning area working with the children. The icy coldness starts a flare (I want to be checked out for Raunauds) of icy cold burning/tingling which turns into a full on EM flare as soon as I go into the warm again. I am still sufferring the flare in both my hands and feet 4 hours after coming in out of the cold with no signs of easing. This is new to me as it used to be mostly heat that casued flares and only in my feet previously..!! Distressing times :(
Anybody got any advice to make this winter easier...?
Hi Laura, That is a difficult combination with EM/Raynauds...going outside and then inside. I have both EM and Raynauds. In weather with near or below freezing temps. I have to wear socks and gloves outside and then remove them immediately upon entering indoor temps.near or above 70 deg. F. It's hard to remember to do this if a person is busy thinking about your work. Sometimes I will go back outside without the socks and even without shoes if necessary to get the EM flare to settle down. Can you use reusable icey gel packs indoors? Beta-blocker meds helps to reduce the frequency and severity of both reactions to cold and hot.
I have both EM and Raynauds too. I find that I need to wrap up well outside and then as David said, to remove the layers as soon as you get inside. It sounds like you do have Raynauds and that the Raynauds flare tips you into an EM flare.
I wouldn't recommend using icepacks, as they damage the skin and can actually set you up for another flare later on, creating a vicious circle.
I know you may not like the idea of doing so, but if the above doesn't work, then you need to speak to someone at work about adapting your responsibilities. The Disability Discrimination Act states that reasonable adaptations have to be made to a person's work to accommodate a disability. As long as the main part of your job isn't to take the children outside (for example if you are a playground supervisor), it is a reasonable adaption for you to be excused that part of your job, even if it is mentioned as one of your duties in your job description.
I hope the simple measures you've been given help, as I know invoking the DDA is not a nice thing to have to do. Good luck, let us know how you get on.
Clarification: There are gel packs available in the US recommended for medical uses that are not true ice. They are not as cold as frozen liquids and if used covered with cloth or other adequate barrier provide a mild cooling effect for the skin that can be beneficial with the EM flare-ups. The ones I speak of, if available other than in the US, do not damage the skin. I hope you find good support at the school, too. David
Thank you David and Starsmurf… I am hoping to find a solution without having to resort to changing my role as the rest of the job role I absolutely love. I’m an early years practitioner and am in my first term so a change so early on would be a hassle. (luckily I’ve worked in and been reliable in the school for the last 11 years, previously working 1:1 with children with special needs so they know I’m a hard worker)
Ps my boss isn’t aware of my EM because I had it mostly under control…!
I am desperately trying to get an appointment with my gp for this week to discuss all the new symptoms and ask if upping my dose of Gabapentin might be a way forward… Fingers crossed.
Just been working my way round this discussion and have ordered some of the gel packs that David mentioned. I find the freezer blocks too hard. I do always cover them before using. Also read somewhere on the site about the bean bag type thingies you can heat or chill which I realised I already had. They work quite well but only short term which is enough to get through a meal at the table without fidgeting too much.
The skin on my feet comes out in blisters with the heat generated by a flare and they itch like crazy. I once foolishly ran my fingernails over them lightly during a flare and aaargh the pain!!! Some blisters have popped and are trying to heal but the oedema prevents it. Any ideason how to resolve that one?
I'm surprised we haven't all got chilblains with trying to keep our feet cool. I'm sure I've got windburn from having the fan on all night and quite a lot of the day.
wow, and hi all. I had no idea others were suffering with Raunauds and EM. It had been mentioned I have both but not by a doc but he has never seen it before and does not not about EM. I live alone and keep my house very cold. However, this winter I find I go from painful freezing and painful burning in an hour due to slight temperature changes, ie, cooling down at night. I was so hot the other night and it was 63 degrees in my apt. I go from freezing to burning. I feel as if I get up to turn the heat up and down constantly. I was confused why my burning feet would need socks ect.
Until this site everythign I have read said to stay away from cold water and ice. Even though sometimes I just cant. I get EM on my face and head so....Anyway thanks for all the tips and too this site I have learned and am learning so much.