Any sugestions for a good climate when you have EM and Raynauds?

General
1

I live in Palmdale, CA. It is the High Desert. Today its 98 degrees and not too humid. Between the Raynaud's flaring and the EM flaring I am in agony all the time. In the house and out of the house.

My (separated) husband just spent $5200.00 adding a mini central air room system in my bedroom and it feels too humid. The air tech is coming today to check it out. But I think it is me, not the unit.

I only go out to doctors appts. I think I feel better (better than horrible!) in low humidity and cool temps, maybe 58-64 degrees.

Does anyone have any ideas about this?

I would move tomorrow if I felt the climate would at least reduce the severity or amount of flaring.

I wish there was a community of people like us somewhere. Like the Del Webb 55+ communities, we should have our own.

2

I live in Austin, Texas and have central air. I can go outside in ten to twenty minute increments early in the morning or late evenings. It’s incredibly hot and humid here. We had something like 50+ days over 100 degrees last summer. So, this one should be equally as brutal. We are planning to check out Seattle and Portland within the next few weeks. It would make my suffering a little less if I could just go outside!

X

Witsend

3

I live in Seattle / Tacoma . I Don't know what it is like to have this elsewhere but I am assuming I have it better off. I have EM and Raynaud's and you still have to walk that fine tightrope of temps but I think it is easier. I have to have central air even here even in the cooler months sometimes but I can go outside more. The summer comes and I am a prisoner in my own home unless I leave really early in the morning because our summers still get into the 70s and 80s with a sprinkle of 90s here and there and the 70s is still too hot for me. With temps like this however my AC can keep my house a nice 63 unless it gets into 90s then 65-66. think an AC can only cool the house about 15 degrees from outside temp give or take. If it is 100 the best you might get with AC is maybe 80-85 degrees OUCH!!!!!

In the spring and fall I can actually go sit at the park with my husband when it is in the 50s and 60s I still can't walk around much but it is nice just to see the outside world. Winters I must stay in because of the Raynaud's. I actually get Raynaud's in the summer too from touching things in the refrigerator or freezer and sometimes my AC will cause it. It isn't really that cold here in the winter. It rarely gets cold enough to snow but my Raynaud's is so darn sensitive I get it going from the car to the store in the winter and that is with wearing gloves and bringing flip flops for once I get in the store.

If I could live anywhere I would live in Monteray California. I used to visit my grandmother there. The temps are mild /cool year round . It is the most beautiful place I have ever seen. It is just so expensive to live there. Some day.......

I am quite positive moving to a cooler but not freezing environment would be beneficial to your symptoms. I don't know how everyone that lives in hot climates ever survive!

Take care,

Alina

4

The perfect solution for me would be to be here in the UK in the summer and somewhere in Australia in the Winter. Tasmania where my daughter lives has a climate almost identical to southern England and perfect for me though perhaps too warm for some of you. Perfect for me is upper 60s, lower 70s. Anything cooler will trigger Raynauds and long long EM flares. Don’t tell my son-in-law but I have seriously considered overwintering over there!

5

I have often wondered about this too. I used to live in the desert, very low humidity, and did not have any trouble with my feet. Too hot to live there in the summer though. We moved to the seacoast and the first foggy, rainy winter we were here I developed the foot pain. Cold damp climate is the worst for me, for feet and all over body pain. I have noticed that when I visit areas with very dry climates my feet and body feel better, if it's not extremely hot. I had more trouble when we visited Hawaii where the temps are in the 80's with high humidity. Very low humidity with temps in the 60's, 70's and low 80's would be ideal for me but I don't know of such a place year round. The desert has become more humid now with the addition of all the golf courses and lawns. I would like to hear others' stories of how climate affects them.

6

My perfect climate was in Pismo Beach, California. It was almost always in the 60s or 70s. Frequently overcast or with heavy marine layer. LOVED it!! Now living in Boise Idaho and it is in the 90s this week. :( But my EM has gotten a little better since I was treated for Lyme disease, so I think there was a connection there for me. Well, Lyme also triggered fibromyalgia and numerous autoimmune diseases, so I don't really know the connection, but it has improved since my year of IV antibiotics (Rocephin and Merrem).

7

Hi guys,

Very interesting topic, and I wanted to add my response. My husband and I moved up from Southern California [the Los Angeles area], but this was years before my EM surfaced.

About 10 years ago, while we were living in Silicon Valley, my EM woke up and started tormenting me daily. We lived in a small town called Menlo Park, and temps would easily get up into the low hundreds during the summer. Most of the area that we lived in did not have air conditioning, and I was usually often too miserable to do anything other than lie down with ice packs on top of me and cry.

I saw an EM specialist at UCSF medical center about 6 years ago, and the first thing that he told us was that we needed to get out of town and move to a cooler climate. We found a very sleepy and very foggy beach town called Pacifica. We live here in Pacifica now and this is as cool of a climate as I can get too, [or get my husband to move to. He absolutely abhors the cold!].

We had to install AC about two years ago though since the very cool temperatures here were not cold enough for me. This is the best that I can do is without moving farther up north, like the Seattle or another city in beautiful Washington.

Although it is very appealing to me to move there immediately, I do still love my husband and don’t want to ruin my marriage by dragging him to the climate that he detests! So I am trying to manage the best I can, and so is he. Yes, this is one of those situations where my EM is not just mine, but also my husbands, as he has to share in this journey with me. But I am thankful for that.

Very interesting responses here, thanks so much for posting!

Pesto

8

Hi all. I live in Auckland, New Zealand. I think it’s almost too warm here. But I have a small a small suspicion that it is the humidity that makes my em worse.
I used to live in Christchurch, which gets hotter in summer, but is a dryer heat.
Does anyone else think this is the case?

9

I find living near the Coast of California, The fog and cool temps. help with the EM symptoms greatly. I've been living with EM since the year 2000. I'm 64 years old now and living near the ocean is a must. Hope this helps.

10

The agony I can relate to. Sacramento--105 earlier this week--high 90's is pleasant? But I just try to manage my pain. I do get out there on my bike, but I try to beat the heat, go early, and I wear cycling sandals. Otherwise, I'm inside a lot. Tonight we're going to a bbq down the street--last year I burned my foot on a sparkler b/c I couldn't keep my shoes on, too painful. I'm already imagining that I'll be home in an hour b/c my feet are so on fire right now. I'm so jealous of your new unit. It's got to work better than it has been--seems like it would be a life changer. We have only 2 window units--old fixer upper, adjunct professor salary=no central. We'll never move. I love my home, my town, but the weather is my nemesis so much of the time. It's just something I have to accept.

11

Yep, a doctor said that to me earlier this year...not moving.

Pesto said:

Hi guys,

Very interesting topic, and I wanted to add my response. My husband and I moved up from Southern California [the Los Angeles area], but this was years before my EM surfaced.

About 10 years ago, while we were living in Silicon Valley, my EM woke up and started tormenting me daily. We lived in a small town called Menlo Park, and temps would easily get up into the low hundreds during the summer. Most of the area that we lived in did not have air conditioning, and I was usually often too miserable to do anything other than lie down with ice packs on top of me and cry.

I saw an EM specialist at UCSF medical center about 6 years ago, and the first thing that he told us was that we needed to get out of town and move to a cooler climate. We found a very sleepy and very foggy beach town called Pacifica. We live here in Pacifica now and this is as cool of a climate as I can get too, [or get my husband to move to. He absolutely abhors the cold!].

We had to install AC about two years ago though since the very cool temperatures here were not cold enough for me. This is the best that I can do is without moving farther up north, like the Seattle or another city in beautiful Washington.

Although it is very appealing to me to move there immediately, I do still love my husband and don't want to ruin my marriage by dragging him to the climate that he detests! So I am trying to manage the best I can, and so is he. Yes, this is one of those situations where my EM is not just mine, but also my husbands, as he has to share in this journey with me. But I am thankful for that.

Very interesting responses here, thanks so much for posting!

Pesto
12

Hey there, I am also a Texan w EM & Raynauds. I will take Ray symptoms over the heat & throbbing of EM any day. If we could we would live any place but here. Which is hard for a Texas girl to say.

13

I used to want to move south to colder climates but now, not so sure. Given my new distaste for winter.

Until this Australian winter I definately preferred winter. The heat of summer is usually tougher on POTS and EM, for me, and last summer was a particularly hot one and I was so looking forward to winter. I was doing worse this past summer than I have since I've had POTS and EM symptoms.

But I've found that my EM is more difficult to manage this winter. My new, very recent, experience is that I get bone-chillingly cold during the day (as winter temps have dropped) and can be shivering inside my home under a blanket. If I let my feet get too cold they will feel like they are freezing (and sometimes burning at the same time -- a sort of ice-y burning). Or they will freeze and then start burning -- typical of the sort of thing many here have mentioned. Some days very light cotton socks are enough to keep my feet from freezing -- burning. Go without the socks and I'm asking for burning/freezing feet. Between about 5pm and 6pm I start to warm up. Suddenly my apartment is not 'too cold' as it has been all day. At a time of day when the sun has gone down, the temperature has dropped and hubby is complaining of the cold, that's when I start to feel okay. I start to feel more comfortable for a while -- which is good. Then I start feeling too warm. Then I go to bed and not long after I get too hot and burn, too cold and shiver, too hot and burn and repeat most nights, through the night, as I'm waking, and taking off and putting on bedsheets. Then there are the nights where I'm too cold all night, I wake repeatedly shivering and fall back asleep shivering. And occasionally, like last night, when I wake with my t-shirt damp and chilled -- at some point I've been sweating in my sleep but have not woken until I've coold down. On some winter nights I wake so hot I can't get out of bed quick enough to stand on cold tiles and cool down. On other winter nights (few occasions) I'm waking so chilled it stops me getting back to sleep.

I haven't used a heater in years. With EM I thought I wouldn't need a heater in winter, (or as long as the EM lasts). But I'm thinking about going to buy one for when I'm desperate to warm up. I can't believe I just wrote that. I haven't needed to warm up in years as I've felt way too warm generally. It's long been that I'm too hot. Now, getting the temperature right is like trying to steer a rudderless boat. I've realized that I hardly have any winter clothes. Nothing warm enough for when I get freezing cold. I walk around my apartment like a homeless lady, layered in clothing. Taking it off, putting it on as needed.

I guess the best place for me to live, now, is not about living somewhere colder as I had thought up until this winter. But it could be about leaving the city and high density living (although I might think differently if I had central air conditioning). I've lived nearly my whole life in the city and we live on a very busy road and the noise and just general busyness of it are starting to really affect me negatively. I am longing for the quiet of a more country area. Somewhere by the sea so I can take my swims on hot days. And central air. I need that, too. At the moment though, I'm relieved that we didn't have the opportunity to move somewhere colder given the changes I am now seeing in EM symptoms and what I assume is temperature dysregulation which is a symptom of POTS. Moving somewhere cooler could have been more difficult.

I'd like to say, though Sydney does get some very hot days in summer with high humidity most of the summer (which I hate) that I haven't experienced some of the extreme hot temperatures some members of this site have experienced day after day all through summer. If I lived in places that got that hot I'd definately want to move somewhere more temperate.

I've just realized that, for a while now, I haven't experienced that need to cover parts of my body to keep them warm and, at the same time, leave other parts uncovered to cool them. I guess everything just keeps changing and I have to adapt and find ways of coping.

blue

14

@erin79 - I hear ya! I never wanted to live anywhere but Texas, especially now that I have a brand new grand daughter. However, every summer, I start questioning my sanity.

15

Hello from a lurker here. I, like many of you, yearn for a more coastal environment. I live in south central Montana, with wild temp extremes. Today was nearly 100. Winter temps can go down to -20F. Right now I scuttle about as early as I can in the morning,or very late at night, trying to keep my plants watered. I am also at 3200 ft elevation, and I believe higher elevations are not friends to EM. I would like to live south of Bellingham Washington, where you get the cooler air from the water and don’t have huge temp fluctuations during the seasons. I find consistent temps easier to take- of course not the high temps! I don’t wear socks here, even in the winter!