I have been coping with autoimmune issues for more than 50 years and living with a dx of lupus for 45-46 years. I have put a great deal of time and effort into learning how to identify and then avoid those things which trigger my flares. One of my important triggers is rapid and dramatic changes in the weather, including changes in barometric pressure. I currently live in Central Virginia (I am a military "brat" and have spent some time in most regions of the U.S.A.). Here we catch severe weather from both the Atlantic Storms and the Gulf Storms. So during the summer storm season, I try to keep an eye on the storms that are forming over both bodies of water.
Today, I decided to check the storm forecast for this weekend on www.weather.com. I have not been obsessive about getting my storm supplies together this year and I was wondering if I need to go out tomorrow. So I spent some time looking at the fact that things are getting lively in the Atlantic.
This was the first time that I noticed that they offered an "aches and pains" forecast. I don't know if it works - because I just found it today. But if you experience flares due to changes in the weather, you might find this tool useful for your record keeping.
Preventing/avoiding a flare is better than any treatment I have ever had or read about. How does that old saying go, "An ounce of prevention is worth a pound of cure."
Very interesting reading Ann A. I live in a place where the weather is roughly the same all year. Can get a bit humid in "summer' but winter is T shirt weather & bust out the occasional cardigan if outdoors.
I have a Q for you as a long term Lupus manager. I am a newbie & (fortunately) have the Cuteanous variant of Lupus. In a real mess at present. This is my first 'flare' 21 weeks & counting.
My Q - As a Cuteanous Lupus Pt, do I have to endeavour to 'avoid' flare ups in a similar fashion to Systemic Lupus Pt's? I mean will I likely experience peaks & troughs with Cuteanous Lupus (though with a narrower range of 'issus') as do Systemic Pt's?
The readings I have done seem to indicate Cutaenous Lupus as just "skin' issues. I'm not just skin issues right now & don't quite understand how the future may play out. I'm advised that only 20-30% of Cutaenous Lupus Dx tip over into Systemic Lupus.
Have updated my profile to reflect current meds. Thankyou in advance for your time.
In the beginning, I was told I had discoid lupus. I think that’s the same as cutaneous lupus. I had a rash and tested negative for the ANA and was told it wouldn’t likely change. But I started having a lot of trouble with fatigue and joint pain and finally went to see a rheumatologist. He did a full Lupus panel and found that I had the SSA antibody (I guess that’s what it is as I haven’t actually seen it on paper yet) and a low platelet count. I know this doesn’t answer your question exactly but prior to the SLE dx I was told that I needed to avoid, sun, stress, exhaustion, etc… All the things it seems all Lupus patients need to avoid to prevent a flare. But if you haven’t had a FULL lupus panel (which my dermatologist and gp did not even seem to know could be done) then there might be something your doctors are missing since more than you’re skin is being affected. And maybe u have had a full panel but to my understanding, antibodies can develope later on??? Just a thought…
Yes - changes in weather affect my flares. The sun is obviously a trigger so I simply do not go in it at all - but for me the HEAT and Humidity here in Central Texas increase my flare levels and rashes and can also trigger a flare when I didn't have one before.
If I remove the Sun from the equation (pretend it doesn't exist), the Heat all by itself is just as triggering for me! We don't get the real "cold, cold" here, not like the Northern States. It gets somewhat cold, but I've never seen more than a few inches of snow on the ground (barely covers the grass)- never once made a snowman and only had a snowball fight with snowballs the size of marbles or golf balls! The cold is bad enough, but it is easy to dress warm here and fight it off - WAY easier than our Northern state friends.
The HEAT though? The HEAT is my enemy - if I leave the house and go out, it can take me days to recover from it - even if the sun does not touch me at all! :(
I think changes in the Barometric Pressure causes my migraines though! I've noticed that!
I have a rash on my legs. My kidney doctor told me to do a topical anti-fungal. Needless to say, it hasn't worked. I'm going back to my PCP next week to see what she says.
Ann A. said:
Another factor that is broadly related to climate and weather which affects my lupus symptoms is "altitude." At higher altitudes it takes even less sunlight to produce a rash on my skin. But altitude also impacts my respiratory symptoms. The higher the altitude the more likely I am to develop pleurisy (pleuritis), pleural effusions, and even pneumonia. I love Santa Fe, New Mexico but the altitude of Santa Fe does not love me. I love Flagstaff, Arizona. But my friends know that I will not visit them there. They have to meet me down in the valley. Above 10,000 feet, I can sometimes feel as though I am drowning while standing on dry land. Crossing the Continental Divide has been problematic for as long as I can remember. So am interested to learn how many variables this "aches and pains" forecaster actually uses.
Over the decades, I have encountered a number of physicians who were not aware of all of the effects that sunlight (and UV from other sources) can have on people with lupus. Right now the rash that was produced by 5-10 minutes of sunlight exposure is confined to the area of my right wrist. Before I gave up gardening, the rash would eventually cover my entire forearm on both sides, even when I was gardening "carefully." I have had physicians look at the circular rash and diagnose it as ring worm. I have had several of them, including a dermatologist, continue the misdiagnosis even after examining the scrapings of the lesions under a microscope. The process has gone like this.
We discuss the fact that I have lupus.
I show them the rash.
They take scrapings.
They look at the scrapings under a microscope.
They comeback and tell me that they do not see any fungi in the scrapings
They write me a prescription for anti-fungal medication and send me home.
These experiences definitely made me understand how people can go undiagnosed for so long. It also helped me to understand how people can be diagnosed but not given adequate instructions on protecting themselves from UV rays.
One of the reasons that I picked my current primary care physician is that he looked at the rash and immediately ordered an ANA and some additional blood work. I think that what is obvious to one physician is not always obvious to another.
Draginfli.. I think that's been my problem too! Wow. For the past few years, I have gotten the sickest during the summer months! Hmm.. something to really think about..
So, what do you suggest if we can't go out into the heat that much? Any advice is appreciated.
Draginfli said:
Ann -
Yes - changes in weather affect my flares. The sun is obviously a trigger so I simply do not go in it at all - but for me the HEAT and Humidity here in Central Texas increase my flare levels and rashes and can also trigger a flare when I didn't have one before.
If I remove the Sun from the equation (pretend it doesn't exist), the Heat all by itself is just as triggering for me! We don't get the real "cold, cold" here, not like the Northern States. It gets somewhat cold, but I've never seen more than a few inches of snow on the ground (barely covers the grass)- never once made a snowman and only had a snowball fight with snowballs the size of marbles or golf balls! The cold is bad enough, but it is easy to dress warm here and fight it off - WAY easier than our Northern state friends.
The HEAT though? The HEAT is my enemy - if I leave the house and go out, it can take me days to recover from it - even if the sun does not touch me at all! :(
I think changes in the Barometric Pressure causes my migraines though! I've noticed that!
Alicia, how low have your platelets been? I had ITP (platelets have been as low as 2,000!) Then, I had a splenectomy and haven't had problems since.
alicia1310 said:
Kaz...
In the beginning, I was told I had discoid lupus. I think that's the same as cutaneous lupus. I had a rash and tested negative for the ANA and was told it wouldn't likely change. But I started having a lot of trouble with fatigue and joint pain and finally went to see a rheumatologist. He did a full Lupus panel and found that I had the SSA antibody (I guess that's what it is as I haven't actually seen it on paper yet) and a low platelet count. I know this doesn't answer your question exactly but prior to the SLE dx I was told that I needed to avoid, sun, stress, exhaustion, etc... All the things it seems all Lupus patients need to avoid to prevent a flare. But if you haven't had a FULL lupus panel (which my dermatologist and gp did not even seem to know could be done) then there might be something your doctors are missing since more than you're skin is being affected. And maybe u have had a full panel but to my understanding, antibodies can develope later on??? Just a thought...
Thanks for these sites. For years I have observed weather definitely affects my pain level. Bob says I am more reliable than the weather reports if he wants to know what is in store for us. I usually get some relief after the front goes through our area or the barometer gets more steady.
I only go outdoors to get into the car. Walking around the yard is not acceptable in the hot summer months. For an outdoors person who loves nature, walking, flowers etc...this has been a major adjustment for me. We have windows that bring the outdoors in for me..Yay!
Thank you Ann. I always find your discussions helpful... as I'm sure other do also!
Mechelle… I don’t know for sure what the count was. My rheumatologist just said that it was low and I haven’t rcvd a copy of all the labs yet. I’m assuming it wasn’t dangerously low or anything though or he would have made a bigger deal out of it???
Mechelle said:
Alicia, how low have your platelets been? I had ITP (platelets have been as low as 2,000!) Then, I had a splenectomy and haven’t had problems since.
alicia1310 said:
Kaz…
In the beginning, I was told I had discoid lupus. I think that’s the same as cutaneous lupus. I had a rash and tested negative for the ANA and was told it wouldn’t likely change. But I started having a lot of trouble with fatigue and joint pain and finally went to see a rheumatologist. He did a full Lupus panel and found that I had the SSA antibody (I guess that’s what it is as I haven’t actually seen it on paper yet) and a low platelet count. I know this doesn’t answer your question exactly but prior to the SLE dx I was told that I needed to avoid, sun, stress, exhaustion, etc… All the things it seems all Lupus patients need to avoid to prevent a flare. But if you haven’t had a FULL lupus panel (which my dermatologist and gp did not even seem to know could be done) then there might be something your doctors are missing since more than you’re skin is being affected. And maybe u have had a full panel but to my understanding, antibodies can develope later on??? Just a thought…
Europe has had aches and pains report, asthma report and more for many many years. It's kind of new to this side of the world. There's scientific proof that fast weather changes, high barometric pressure, excessive heat or cold, or certain other weather patterns make certain conditions flare. Mom and I wish we had the strength to move somewhere that the weather does not change so dramatically so we are not laid out flat so much of the time. Europe is also aware of how the EMFs (electromagnetic frequencies) from solar flares are causing massive symptoms worldwide, and the solar flares have been worse since February than ever before, and are supposed to continue to increase for the next few years. On the days I was really suffering, I sometimes would look at the solar flare report from NASA, and would find that it WAS a really active day on the sun. So yes, the weather affects every animal and humans.
Mechelle, have you tried OTC cortisone cream on the rash?
Sheila
Mechelle said:
I have a rash on my legs. My kidney doctor told me to do a topical anti-fungal. Needless to say, it hasn't worked. I'm going back to my PCP next week to see what she says.
You may not have had to get rid of everything electric. I bought a gadget that measures the EMFs from each of my gadgets. It was $34. The worst offenders were my old color TV, my old digital alarm clock (that surprised me) and the microwave, but if I stand 3 feet away from the microwave, there are no more EMFs. I also looked for 3 years for something to neutralize the dangerous levels of EMFs. I researched every gadget advertised, looked at the scientific evidence. Most were VERY expensive scams, and finally I found that the least expensive gadget worked the best! I put it in the house and didn't tell Mom anything about it. The instructions said it would take 3 days for all the air to circulate through it to start showing some benefits, and on that third day, mom said "You know, for the first time in my life, I did not have to use nose spray all through the night, and my gluten allergy is not giving me grief today." She used to go through a bottle of nasal spray a month. Now it's about 1 a year. Soon the EMFs increased from the solar flares, and I got the same symptoms that I had before, so I bought a second one of these gadgets, and it helped again! Mylar sheets also help if you can put them in between your blankets and sheet or something. The first and best info I found was from the World Health Organization (WHO) and from Canada, and one letter from the leader of Germany to Obama, BEGGING him not to let digital TV into the USA, because they started digital TV town by town, and watched as first the birds left each town, then the elderly got sick, then the children did, then the rest did. All got undiagnosable vague but disabling symptoms. Of course Obama had no power over all the TV companies who had a date to change over to digital TV. I think it was February 2010 or 11. Here are the sites I use the most for "dirty electricity" or EMF sensitivity.
I have a dozen other sites. I wish I had the strength to moderate a group about EMFs and their effect on us. I did see a girl here who was giving the daily solar storm report from NASA because she knows it affects her lupus so much. If Interested, I can also tell you the gadget I got to measure EMFs, the gadget I bought to neutralize most of it in my home, and more info. Thanks for your links, I’ll add them to my EMF file.
Blessings, Sheila
Ann A. said:
Thanks Sheila W.,
Your previous posting has me actively researching EMF and EMF sensitivity. The toaster, the electric blanket, the heating pad, the microwaves are gone.
The weather plays a huge role with the arthritis for me. I’m in Atlantic Canada so this weekend has been rough. I’m aching and my hands & feet were swollen when I woke up this morning. My hubby jokes that I predict weather better than the weather network! Also seems that the changing of the seasons (spring and fall) are rough. Once we get past the dampness into the dry heat or dry cold it seems to settle down. This seems to be the worst summer so far with the rain not even clearing the air! I’ll have to take a look at that site and see if they have it for my area.
The weather plays a huge role with the arthritis for me. I'm in Atlantic Canada so this weekend has been rough. I'm aching and my hands & feet were swollen when I woke up this morning. My hubby jokes that I predict weather better than the weather network! Also seems that the changing of the seasons (spring and fall) are rough. Once we get past the dampness into the dry heat or dry cold it seems to settle down. This seems to be the worst summer so far with the rain not even clearing the air! I'll have to take a look at that site and see if they have it for my area.
I go to my PCP tomorrow. I will certainly ask her about that.
Sheila W. said:
Mechelle, have you tried OTC cortisone cream on the rash?
Sheila
Mechelle said:
I have a rash on my legs. My kidney doctor told me to do a topical anti-fungal. Needless to say, it hasn't worked. I'm going back to my PCP next week to see what she says.
Ann, I didn't even think of that! And yes. I do remember Hurricane Irene. Hopefully, like you said, we'll be better prepared this year.
I'm in Petersburg, although I'm moving in a few months. Are you a member of any support groups here?
Ann A. said:
You are very welcome Mechelle,
One of the problems with storms is that the winds blow in all sorts of things that trigger my allergies and cause me to have infections. Since you too live in central Virginia, I am sure that you have fond memories of the visit that hurricane Irene paid us last year. I was miserable for days as my breathing problems increased.So preparing for hurricane season means making sure that have what I need in order to breathe.
Just before Irene, when the storm activity started, I also got an ear infection. It was probably a common staph infection but it was severe enough that it took two courses of antibiotics to wipe it out and it forced the postponement of my back surgery. I try to avoid infections because they too can trigger my lupus flares.
Oh how I love these storms.
Mechelle said:
Thank you for this, Ann! I live in Central Virginia, too! ;)
You're right, Alicia. He would have mentioned it if it were too low.
By the way, how do you deal with stress, the sun, etc.?
alicia1310 said:
Mechelle... I don't know for sure what the count was. My rheumatologist just said that it was low and I haven't rcvd a copy of all the labs yet. I'm assuming it wasn't dangerously low or anything though or he would have made a bigger deal out of it???
Mechelle said:
Alicia, how low have your platelets been? I had ITP (platelets have been as low as 2,000!) Then, I had a splenectomy and haven't had problems since.
alicia1310 said:
Kaz...
In the beginning, I was told I had discoid lupus. I think that's the same as cutaneous lupus. I had a rash and tested negative for the ANA and was told it wouldn't likely change. But I started having a lot of trouble with fatigue and joint pain and finally went to see a rheumatologist. He did a full Lupus panel and found that I had the SSA antibody (I guess that's what it is as I haven't actually seen it on paper yet) and a low platelet count. I know this doesn't answer your question exactly but prior to the SLE dx I was told that I needed to avoid, sun, stress, exhaustion, etc... All the things it seems all Lupus patients need to avoid to prevent a flare. But if you haven't had a FULL lupus panel (which my dermatologist and gp did not even seem to know could be done) then there might be something your doctors are missing since more than you're skin is being affected. And maybe u have had a full panel but to my understanding, antibodies can develope later on??? Just a thought...
Well… I don’t really. I guess I’m still in denial about the sun being the cause of all this. I don’t get a rash while in the sun or right after. The only thing being in the sun seems to do to me is make me very tired and sick feeling. The rash on my scalp is there regardless of whether I’m in the sun or not but is not as noticible in the winter and seems to get worse with stress. Im in arkasas so theres no way to avoid heat and sun I dont really have a way to deal with stress. Between working, taking care of my daughter (which is a blessing and hardship at times), & dealing with my soon to be ex-husband I don’t have much time or energy left for anything else. I’m staying with my parents while I figure out what to do with my marriage and they help with my daughter but they make sure to remind me daily that I’m not doing enough and that I just need to “shake it off”. I’m sorry… I don’t have much to offer as far as solutions go I just try not to think about it too much… That’s not very effective though
Thank you Ann… I just meant that I have always swam, camped, canoed and hiked and never even had to worry about sun block before. I haven’t done any of those things in a while so I have been limiting my exposure. Again… I was just diagnosed a few weeks ago so its not that I dont want to do things to make myself feel better, I’m just still learning what I’m supposed to do and not supposed to do and it’s contradictory to what I’m use to.
I dont really have a way to deal with stress. Between working, taking care of my daughter (which is a blessing and hardship at times), & dealing with my soon to be ex-husband I don’t have much time or energy left for anything else. I’m staying with my parents while I figure out what to do with my marriage and they help with my daughter but they make sure to remind me daily that I’m not doing enough and that I just need to “shake it off”. I’m sorry… I don’t have much to offer as far as solutions go 
I just try not to think about it too much… That’s not very effective though 