Hi all,
I am still new to this disease having just gotten a positive lip biopsy a couple days ago and only first noticing symptoms that seemed to come on very suddenly at the end of June. So I am not really sure what to expect with the cold weather coming up. I live in Michigan and the snow is starting to fall. I have Raynauds I am pretty sure because I get the white fingers and toes and even dark purple at times when they are cold or I am stressed, I have noticed other parts of my body turn white too. I think I have other vasculitis issues because my lower legs and arms seem to change to weird colors, and according to the allergist I saw my allergic reaction and hives were a type of uticarial vasculitits.
So my question is how does the cold weather affect this condition? I have a conundrum. Wouldn't you know, a little over a year ago, before I had any knowledge of Sjogrens, I planned my dream trip to go to Iceland in January in search of aurora borealis. I have been saving money to do this for a very long time and was finally able to make it happen with a tour group guided by one of my favorite astrophysicists! Needless to say I am super excited about it. But also now very nervous and apprehensive as to how I will react to the cold weather there? There are several treks in the snow planned including a glacier. Not to mention the long airplane ride. Ughhh I don't know what to do. I do have insurance if I have to cancel this trip, but I would be heart broken :( it's been on my bucket list soooo long.
How do you all fair in the cold and snow? thanks for any recommendations or advice.
I live in MN so i have experienced a little of that 4 letter word from time to time. Dress for the weather. Dress for extreme cold. Sip, Swish and Swallow your water. (Carry a bottle with you at all times. Breath through your nose. When out side, cover your mouth and nose. Puff tissues with lotion are best to use. I like airborne when I have a cold or drippy nose. I will take up to 5000 mg per day when needed. I bring my own antihistamine and Aleve. I also bring Pepto tablets and Imodium tablets when I travel. I wear SPF 50 clothing 24 hour a day. When traveling I add UV blocking sun glasses, and gloves. For driving we have a screen that I can put upon the side window. On air plane rides I do a lot of meditating. I meditate during most of my free time.
When we travel by land, I bring my own recliner as I have trouble sleeping in a bed. We make frequent rest stops and snack stops.
You should take the trip for the experience. With preparation it should be fine. We will sometimes see the northern lights from our home in MN. Seeing a high voltage display is a sight to behold.
Thanks so much Joe for those great tips! I really don't want to miss this trip. I will have to find some good UV sunglasses, great idea. I bought some of those hand and foot warmers so I'll give them a try too. I have a water bottle to bring, I hear Iceland has really good water. I'm thinking about practicing a winter hike here to see how I react. Need to find me a good pair of gloves first. Thanks much appreciated.
Don't know about Ireland's cold, I live in Ohio. I love the cold weather since my sjogrens began. I am always overheated,
Cannot stand summer days in the sun.....I cannot sweat much anymore....when I start to get hot I get sick to
my stomach. Love cool..cold weather.
Shelly
I am going to approach this from a different angle. I don't blame you for wanting to do this trip. It sounds awesome. Now, as an old grandma who is a retired RN I will give you my "skinny" on this issue.
You want to go. You need to go!!! You got ill sort of quickly with sudden onset pretty bothersome symptoms. You have not said if you are on medication for your Raynauds and your vasculitis. You don't know how you will react to cold or the stress of travel. I am sure you know that flying is very stressful and it can be quite chilly on planes. Dressing for the occasion will help but this is going to be very new to you....dealing with illness in a strange country.
I am thinking of medical care in case of some severe health issues. Have yoyo checked out medical insurance in foreign country and have you checked out the medical care in Iceland. My conservative thoughts are that maybe a trip that is stateside----such as Alaska where you would be in familiar medical care and culture might be the way to go the first time around. Is your condition stable or haven't you had time to find that out yet. I would think that after you have learned your body reaction to these ailments it would be easier to plan an out of the country trip. There is really nothing worse than being sick and miserable when far away from home and the stress can make our autoimmune diseases even worse.
I don't mean to be a spoil sport, but I wanted you to think about this trip in a different way. Only you with research, and the help of your doctors, can make this decision. You might ask the doc about taking along specific meds for circumstances that might come up. Good luck Irish
You bring up very valid concerns that I have been having. I really don't know if I am stable. It seems to go up and down for me with symptoms of dryness and muscle and nerve pain. The only meds I'm on at present are, cevemeline, xiidra, Ibuprofen and 2 antihistamines per day per allergist doctor (pepsid and xyzal) plus some supplements. When I told my rheumy my fingers and skin changes colors she kind of blew me off. I see her at end of December so I'm hoping now with a positive lip biopsy she will take me more serious :(
What kind of meds are given for Raynauds? I am not sure I want to start any new heavy meds before the trip in case I have a bad reaction to them there, so I was not planning to start any new ones till I get back. I was going to ask her if I could get a steroid pack to take with me just in case? I also am planning a couple practice hikes in the snow here before I go. But looking into the insurance and health care there is great advice.
I am very apprehensive about going, but I just don't want to miss it. What happens to people with Raynauds if they are cold for an extended period of time? Can it cause something serious? I bought a big box of those hand and feet warmers, I'll stuff them everywhere.
Ahhh what to do, what to do? Such bad timing, it seems my life has been filled with bad timing :( not that there is any good time to get a chronic illness.
Hi Shelly it's good to hear that cool weather can help. I am thinking it may have helped me with my hot flashes and night sweats a bit, they seem to be farther apart since it's cooled down. Hoping it continues to lessen.
I used to live in Ohio but now live in Florida. I have Raynauds and it can be quite uncomfortable in the cold weather. If you keep your hands and feet warm you will probably be ok. I just can?t take the cold and avoid it as much as possible.
It seems we are all different. Good luck to you!
Anna