How does the weather affect your sarc?

exultant
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I am planning to make a major life change - going to graduate school. This change will most likely involve a move to a new location in N. America or maybe even Europe. I currently live in N. Texas (USA), and find fall, winters and springs tolerable, but in the summer - I hide from the oppressive heat (100F in July & August) and the sunlight. My onset happened when I lived in the San Francisco Bay Area, known for being cool and temperate. I really don't want to go back especially since I and a couple of friends acquired sarc and RA there, and there have been lots of fires (yikes, smoke!) and outbreaks of a nasty mold spore respiratory infection. I got better when I left California and moved to Texas.

How do you find the weather where you live affects you and your health? Is your weather conducive to being active and feeling healthy, or do you hide or stay inside? I ask your humble advice :)

9 replies

gonenatural

I live in Massachusetts. When I went out in the summer on hot and very sunny days and was active I became sick quickly. In the winter I just make sure I bundle up because my fingers and toes get cold and blue quicker and I am not able to shovel anymore but not to often we see snow these days.

When I was in the ER Thursday my nurse was kind enough to ask another nurse if she knew what Symtatic Sarcoid was and I only heard a tiny piece due to the pain much she mentioned that it is worse in CA due to the sun and ?, I don't know if she metioned more reasons or not.

A magazine, I believe it is: www.sunprotection.com sells clothing for those that need sunprotection but still look normal. If that is proper let me know and I will look for it.

Good luck in your adventure. My friend, daughter, son in law and grandbaby live in TX.
Happy Thanksgiving

RuthfromOz

Looking back on my worst-ever flare (the last 2 1/2 years) I haven't really found a strong link between temperature and sarcoid activity. I started getting worse in April - May, which is autumn here, and was struggling to breathe and in crippling pain right through the next year with very little if any seasonal variation. Over the past year I have improved, mainly I think due to medication change (pred to MTX), but with only days to the start of summer my breathing & pain levels aren't much different to the way I was 4 or 5 months ago.

I'm not quite sure how the temperature variations in my little part of the world compares with yours, so I'll put the numbers out so you can see for yourself. The low figure is the average daily minimum, the high figure is the average daily maximum.
Winter temps: -5 to 9 C (23 - 48 F) Summer temps: 12 - 32 C (54 - 90 F)
Winters can drop as low as -12 (10 F) overnight some nights, while summer days can climb to the very high thirties & low forties (100+ F) at times.

I sit here now at midnight, 22 C (72 F), my breathing is tight but not too bad, and I ache everywhere, just like I did in July.

pippin

I have found a definite link to my outbreaks and the climate. I was symptom free for six years when I lived in Chicago, IL. I suffered in South and Central Florida and Puerto Rico.
I now live in Tyler, TX and with medication I improve in the winter months. I am not sure that it is the temperature or the exposure to toxins that are prevalent in the summertime. I was thriving last winter but in March when I started getting outside working in the yard, I had a set back. Now i have begun to improve. Next summer I plan to hibernate.

smillers07

I have lived in several parts of the US and in Germany. I find that drier climates with cooler temps work best for me. I now live in the Rockies (Colorado) and even living at over 8500 ft. I find I breath easier then in the more humid/hot lowlands and my pain is less as well. Good luck on your search!

exultant

Thank so much to all of you. Although I've come a long way, I'm still trying to figure out the "best life" puzzle in relation to this sarcoidosis stuff.

priscurl

I live in Australia, under the ozone hole and at the risk of Global warming being a drought ridden disaster. Last summer and this summer look like being wet and cool. Before that we had years of the worst drought since records began. It can get to 110 and 112 F on many summer days, especially early in the year. We have many over 95 F. Also, in Australia even on cloudy or rainy days in summer, the UV index is extreme. Its because of our latitude. Latitude is important because of the angle of the sun's rays.

I am often worse in late January, February (High Summer) this is when the UV rays are making all extra vitamin D under the skin. The sarcoid granulomas convert it into 1,25 Bioactive D or calcidiol. In sarcoid, the enzyme which breaks down excess 1,25 D is not made because of a genetic problem. So our calcidiol levels continue to rise and rise.

I spent 3 months in the UK five years ago and it was bliss. Late Autumn early to early winter, it was. It got dark at 3pm. I spent most of the time in libraries where the sun don't shine, (in rare manuscripts depts there is rarely much natural light). I was the best I felt for 10 years. When I came back to Australia, I was leaving the UK winter and coming back to the Australian high summer. Now I had been to the UK before in early spring and summer and came back to the Sydney midwinter. That was not such a big climate shock. But coming from a cloudy, dark Britain back to Sydney in Highsummer was like being in a candlelit restraunt and having a search light, or spot light, suddenly turned on. I didn't realise how BRIGHT it was. Within twenty days of my return, I had a severe, severe sarcoid flare and was ill right up until July when they finally agreed that's what it was and put me on prednisone. I had relief within two weeks.

I have funny attacks and no one knows what they are. I have been getting them since I was 19 and I am now 48. I only get them in summer. It is definitely sun driven.

Winter or late autumn is when most sarc is diagnosed. This is 'cause you have the disease, but you catch a bug on top of it and it settles on the chest. The cold exacerbates this. Hence with pneumia, pleurisy and bronchitis that doesn't appear to respond, docs send you off for and x-ray and BINGO - sarc.

Pris

BUNKIE

I am just the oposite. I do awful in Michigan winters. Too damp and cold and gray. Although humidity does bother me I can still do better in the summer. I was diagnosed in California 5 years ago before moving. I did well there but stayed out of the midday sun and heat. I feel the dryness helped.
Bunkie

blammms

i live in chicago and experience the same as gone natural. have a very hard time breathing and chest pain just walking the dog around the block in summer humidity and toes and fingers freeze in winter. was diagnosed in 1992 after having numerous symptoms for 4 years and a schmuck for a rheumatologist who told me he found nothing wrong. (wish i could put up his name) my family dr and infectous disease dr diagnosed me. also a very good surgeon to do the scalene lymph node surgery.

gonenatural

Hi Blams,

There is a site where you can report drs and how you feel you where mistreated. I don't know it right now but if you push me I bet I can find it. Maybe google his name and it will come up. That is how I find it.

I think we are going to have a dozy of a winter. We are due. Dogs and I have already settled in and the heater is on high. We don't care about the fuel bill at this point.

Was thinking about going into the sheds to get my yard ornaments but it is raining and raw. Was sleeting earlier, ucky.

Good luck to you

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