Best Climate in the US for Sarcoidosis Suffers?

I wanted to start a discussion with people whom moved around the US and noticed that some areas were better or worse for Sarcoidosis symptoms. There is no magic place where Sarcoidosis just goes away but I have lived in several areas of the US and can say that I had a much a harder time in certain areas.

Worst:
Las Vegas
2nd worst Denver
3rd worst St. Louis
4th worst Tampa

Best:
Seattle
2nd Best Boston

For me, Sunlight is the killer. It causes swelling, dizziness, mental confusion, and extreme fatigue. When I lived in Las Vegas for example I felt almost normal at night but during the "light hours" I suffered horribly. I have also come to believe that changes in barometric pressure also trigger Sarcoidosis symptoms. For the most part if the sun never came out I think I would be cured.

Seattle is damp, cold, and rainy 9 months a year so its not ideal. You tend to stay in the house all the time. Boston is nice in the spring and fall but the winters are brutal. No matter where I live I seem to be healthiest during the winter months since solar radiation is at its minimum.

While I'm not about to follow the Marshall Protocol, I have to say that he is on to something when we talks about avoiding all sunlight. Ok your turn.. If you have lived in multiple areas of the US, share your experiences..

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78 replies. Join the discussion

I'm far from an expert. But I have some thoughts.

The fact that you have had this problem since childhood makes me wonder if your only problem is sarc. Children can and do get sarc but it's unusual. I found a website that lists a large number of illnesses that have both extreme fatigue and sun sensitivity as symptoms. Might be worth looking at:

http://symptoms.rightdiagnosis.com/cosymptoms/extreme-fatigue/sun-sensitivi ty-desc.htm

Do you have any skin problems? Lupus can also cause extreme sensitivity to the sun. Children can have lupus. You can have lupus without a skin rash. I actually googled "lupus hot head" and came up with the following site:

http://www.drbanerjee.com/lupus-symptoms.html

Have you seen a rheumatologist? You may want to see a rheumy and not tell him about the sarc diagnosis and just provide the symptoms and see what they say. By not providing your sarc diagnosis the doc won't be pre-disposed to any particular diagnosis.

As for your apartment, have you tried room darkening shades or heavy, dark colored drapes that block out all sunlight.

You may have sarc and another disease. It's not unusual to have sarc and another inflammatory or autoimmune disease.

Pred gives us energy of a sort but also makes us more sensitive to the sun.

If your only current symptom is the sunlight problem and you have no other sarc symptoms, it may very well be something else.

If I were you, I'd see a rheumatologist and ask for a script for Focalin while you're there to help you stay awake.

I would also see an endocrinologist.

Bev

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Bev,

I have no skin issues at all. I've been to the 3 or so rheumatologists over the years and they run
lots a of tests then say everything is normal. They say its all in my head. I talked one into giving
me the Prednisone for a month and I was 90% better after about a 1 week. But then I put on 20lbs
after the 30 days and the Dr. said it was just a trial and wouln't write me any more. I told him I felt
a lot better on it and he told me everyone feels great Prednisone but it slowly kills you so you can't
stay on it. I didn't argue. He scared me off with talk about diabetis, cateracts, blindness, etc etc.

Its almost 9PM and I feel back to normal now.. Until the sun comes up that is..

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I asked a Doctor about Lupus back in 2000. He ran some blood test that he says identifies it.
ANA test I think. It came back within a some range that he said was normal. That and the fact
that I have no rashes or skin problems caused him to rule is out. I do get tired and I fight to
stay active. I read up on lupus and it does also fit my sympoms. Both are sun related.

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DetroitGee,

I live in Lansing and absolutely hate Mi for my Sarcoid. I lived in Pasadena Ca for 20 years and did well but moved back to care for my parents. They have both passed and I am now trying to figure out what to do with the house. It is nice to own but I hate it here for my Sarc. Also my allergies are 300% worst here than they were.

I feel your pain.

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Is it possible you're a vampire?

Seriously though, a diagnosis of sarcoidosis is NOT done on the basis of symptoms.

A diagnosis of sarcoidosis requires diagnostic imaging showing enlarged lymph nodes and lesions compatible with sarcoidosis in at least one other organ - heart, lungs, central nervous system, bone, liver, spleen, etc. A biopsy of the affected tissues then needs to be done, and it must show non-caseating granulomas. Then, all other causes of granulomatous disease need to be eliminated. Sometimes, diagnostic imaging isn't needed because the affected tissues are visible (in the eye and tear glands, for example) and they are easy to biopsy. In other circumstances (for pulmonary sarcoidosis), a biopsy may not be needed, because the diagnostic imaging is so typical, with enlarged hilar lymph nodes and parenchymal lung involvement, and NO symptoms. In this case, the only other diseases that would produce similar images on chest X-ray or CT scan (lymphoma or TB) either produce clear and obvious symptoms, or progress very rapidly. Asymptomatic disease that remains stable for a year to 18 months then rules out alternative diagnoses, and thus establishes a diagnosis of sarcoidosis.

In the absence of compatible diagnostic imaging and or a biopsy showing non-caseating granulomas, there’s nothing on which to base a diagnosis of sarcoidosis.

Janyce

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Janyce:

This almost sounds like the standard doctor's speech that "If I there isn't a blood test that says yes you have something, then you don't have it and therefore you are healthy".

At age 43, I have suffered since early childhood with sun induced breathing issues, sun induced fatigue, and sun induced allergies, sun induced brainfog, etc.

With Lupus and Sarcoidosis being the only 2 ailments that appear be triggered by sunlight and with doctors whom tell me since "I can't fail a blood test then I am perfectly healthy", I am willing to assume I have one of the two on my own as a best guess. I am getting too old to deal with useless doctors that can't treat anything that doesn't fail a blood test. People whom have Chronic Fatigue Syndrome or Gulf War Syndrome are ignored by doctors because there is no simple blood test for their doctors to perform. Does that mean they are not sick or are faking it? It would seem that doctors think so.

It makes me sick (no pun intended) that doctors are so dependent on lab tests. How are the new and complicated diseases ever going to be cured if doctors rely solely on the old and long established lab tests? Obviously these long established lab tests can not detect many of the new diseases.

I can't tell if you are trying to be helpful or not. If I can't fail and ANA for Lupus and I can't prove I have Sarcoidosis are you saying I have neither? And if that's the case,what next? Should I just assume that I must be faking 43 years of symptoms because "In the absence of compatible diagnostic" there is no proof I am really sick? When I ask the doctor how to get better, I find it pathetic that they can only run a panel of tests and do only what the test results say. If the test results don't say "yes he has this", doctors send you home telling you that you are perfectly healthy. It is so very sad.

I am an engineer by trade and I am required to resolve complex problems on a daily basis. If I told my boss:

"No there is no problem because there exists no 'compatible diagnostic' to confirm the syndrome"
or
"No, I cannot fix it because there exists no 'compatible diagnostic' to tell me what is causing the problem"

I would be fired for incompetence. In my experience doctors operate in this manner and I do believe this to be highly incompetent behavior. When I solve a problem, I begin to treat the issues with educated "best guesses" until the problem is resolved. I think doctors should be expected to think for themselves as well.

I am sure a lot of people are told by their doctors "I can't find the problem so there isn't anything I can do"..

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I'm not saying there isn't something wrong with you.

Just that there's no evidence (yet) that your 'something' is in fact sarcoidosis.

There is a very clear-cut process that needs to be followed in order to diagnose this disease. Until that process has been done, sarcoidosis cannot be the diagnosis.

Everyone here has come by this diagnosis the hard way.

Sometimes it can take a long time to get from vague symptoms to a biopsy. Other times a simple chest X-ray is all it takes. Nevertheless, at some point, something has been biopsied, and the result is non-caseating granulomas of unknown etiology.

Statistically, more than 95% of sarcoidosis patients have some form of lung and lymph node involvement. In these people, a simple chest X-ray is all that it takes to determine this. If you have enlarged lymph nodes and a pile of crud in your lungs, then the diagnosis is pretty certain, and no-one will argue with you. (That's how I was diagnosed, by the way.)

Janyce

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Sun is definitely not good for the majority of sarcies. I live in Sydney Australia, so I reckon that would be equivalent to climate in LA or San Fran. When I lived in the UK for three months during late Autumn I felt really good. I felt rotten in Singapore, thank God I was not there for more than a few day. The British Summer is not so good due to the long twilights however. I had problems during Summer in the UK in 1988.

Pris

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sacred hopefully you find out what ails you. Sarc can affect anyone differently and my dr always says that nothing suprises him. not only do i have sarc (where your immune system is over active and attacks itself) I also have a rare immune disease called CVID (where your body fails to activate and lies dormant, i actually have to recieve platelets for this so i can fight off infection) well many drs said i couldnt have both but my dr confirmed both by labs and my sarc by lung biopsy. still when i see other drs they are baffled that i have a positive biopsy confirmation of sarc with my CVID. dr. at the clinic told me there are only 6 of us that he knows of in the US who have both of these. so stay aggressive and find a dr that is willing to get to the bottom of things. if sarc is suspected they HAVE to do a biopsy for you to know, either of your lungs or at the time your lymph nodes are enlarged somewher (which is usually all the time.. lol) Good luck to you!

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I think some respond different to different climates, I have lived in several parts of the country while having Sarc I was surprized by your list to see Denver on the list as second worst, the humidity is very low and I would not really consider it "high alltitude" as opposed to other locations in CO. take in consideration it has one of the Best treatment facilitys in the country "NJH" and I think Denver is one of the Best not worst. "JMO"

My list would look something like this:

Worst:
Any place with heat and high humidity (both at the same time)
Any place with much OZONE and bad air quality

Best
Opposite of above

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Hi sarced,

I don't know how I have missed this post over the past couple of weeks?
For me living in the S. F. Bay Area of California where the weather is always mild has been - IMO - good for my sarc not being any worse. But then I have lived here ever since I got sarc symptoms, so maybe that is not a good indicator.

I have lived in Texas and the winters were great, but the summers were too hot and humid. I felt ill and fatigued in heat and humidity. Then I lived in North Dakota where the Summers are Hot and Humid, and the Winters are Cold and Dry and even without any sarc symptoms the weather was the pits. About 30 days in the spring and another 30 days in the fall were nice.

I keep my hat and sunglasses on when ever I am out in the sun, and keep hunting for shady spots but I will not ever live any place else. I am a San Francisco native and I intend to stay close to my favorite city.

DJ

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ekim56:

For me, Sun light is my poison. Most people (including myself) do breath better in
cool dry air than in hot humid air. But for me, humidity is not what makes me sick.
Denver being at 5,000ft allows a whole lot more of the Sun's radiation to reach you.

In the winter time I did fine in Denver. (same dry air in the winter as summer) In the Summer
I was for the most part disabled and barely survived. Maybe what I have is some
massive swelling oriented auto-immune disease that is brought upon by the Sun's radiation.
The only time I seem to like the Sun is in Dec when the peak UV index for the day is 1.

For my sickness, I would not move to Phoenix, Vegas, Denver for any reason.

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San Francisco seems like the ideal climate (as we discussed earlier in this thread)
but for me its not even remotely a financial possibility.

The salaries out there do no allow you to buy even a 1200 sq foot 2 bedroom condo.
I was called on a job in SF last week so I took a peak at apartments in craigslist.
The nice 2 bedroom apartments went for $4,000 mo. The cost of living there is utterly
insane.

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Thats what sun screen is for or limit your time in the sun not sure being 5000 ft closer to something that is 93 million miles away has made that much difference for me. For the record I have lived in Calif and Fl both great places to visit, but think I like Denver best. JMO

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Hi Janyce,

I don't know if you have read anything on the latest research done by Dr. Laura Koth at UCSF. Her findings about doing diagnosis via blood tests were published by the American Journal of Respiratory and Critical Care Medicine in July of 2011. Volume 187 article # 1158.

I have a pdf copy of this article but it cannot be shared on this site in that format. I don't know if you have access to the Journal, but you might want to read the article. Please let me know if you want further information.

DJ

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I lived in Orange County CA for 2 years before taking a job transfer to Denver. My symptoms were 10 times worse in Denver. I now live/work in the DC area with insane humidity and heat equal to Florida and I while I struggle, Denver and Las Vegas were far worse for me. Denver has High Elevation, Constant Low Barometric Pressure due its elevation, more radiation from the sun, and a lower oxygen content in the air. Maybe these factors made me feel worse when I lived in Denver.

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Wow, I must be the exception. I currently live in Chicago, and Indianapolis (2 hours south) before that. I'm in the process of moving to Las Vegas due to the warm weather and dry climate. I NEED the sun.

The winters are terrible for me, I cough until my sides and stomach hurt, My lungs crackle and its just plain hard to breath. I recently spent 2 months in Vegas this summer and realized I need this type of weather. I haven't felt that good in a long time.
I love my current city but the winters are just far too harsh, and Im willing to make the move to not feel like Im dying 6 months out of the year.

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"barometric pressure also trigger Sarcoidosis symptoms." boy howdy doody it can. Humid weather can put me right in bed. Can't hardly move those days.
San Diego is like San Fransisco in price and cost of living. Even living with my brother I can't afford it. LOL

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