It's still nearly two months until my very first appointment with a rheumy. I'm trying very hard to both allow myself to work through accepting that I might have Lupus, as well as trying to balance that by not convincing myself that HAS to be what it is. That's a hard line to walk!
But what I wanted to ask you all has to do with flare triggers. I've done my research, I know many things can be triggers. I've read about foods, stress, sunlight, etc. But I have yet to see anywhere that weather patterns can be a trigger. I live in a place that has very dramatic weather certain times of the year. When my joints first started really giving me trouble, I didn't think there was a pattern at all. But as the pain worsened, and became more frequent, I started realizing that it coincided with the major fronts or storms coming through my area.
My GP told me very firmly that it was impossible for the weather to make my joints hurt. "Going over a mountain pass has more barometric pressure change than changing weather does!" Having identified this pattern as real, his blustering and pooh-poohing my theory only made me believe his opinions less. (He didn't want to consider that it might be Lupus. That's a whole other story.)
Since that time, there have been times I was better able to predict the weather than the weatherman, stating there would be a storm two days before the forecast brought it up. There is no question that when weather comes in, I brace for impact. Mostly it is joint pain, but exhaustion as well.
What I'd like to know is: Do any of you have weather patterns as triggers? Or heard of someone else who has had this? Or is this an indication that my joint pain is NOT Lupus?
I haven't been diagnosed with lupus but I have been diagnosed with fibromyalgia, chronic fatigue, sleep disorder, chronic occipital headaches, mercury poisoning and now possible lyme disease. I have test results showing positive mycoplasm infection, and EBV. Weather is a huge trigger for worsening of my symptoms especially pain and fatigue. It starts happening even before the weatherman predicts it. I haven't found anything that can prevent this from happening, just ride it out till the weather clears is what I do.
I just know that you better darn well know for sure what you have because if it's not lupus, wouldn't want to take wrong medication for a wrong diagnosis. My doctor is an MD who practices integrative/functional medicine. They test you for everything.
For the last two years, I get a flare every December when the temperature really starts to drop. My aches and fatigue are never as bad in the summer as they are during the winter.
I have more pain and fatigue in the cold, less when it's warm. Being in very cold a/c can trigger pain for me, especially if it is blowing directly on me. Wind also flares me.
Yes, I react to all kinds of weather changes. Recently I asked family if a storm was coming our way and no one knew about it. Guess what? I knew before the weatherman. For me it doesn't matter the change, it affects me and has for years. Most doctors I see believe that the weather affects people.
I absolutely feel different when storms come and go. I usually feel more joint pain, more muscle pain and all over aching. I also feel more fatigued, but I wonder if that's because of the pain. My husband gets severe sinus headaches, my Grandmother had minears (sp?) disease and these fronts would put her in bed. They haven't diagnosed my father yet, but he suffers with chronic pain and I know he feels the fronts as well. I try not to think about it much, but its hard not to when you feel so crummy!
Just know you're not the only one and you're not crazy! Good luck with your new rheumy!
For me, cold weather (especially damp) sets off flares...no doubt about it. I don't care what any physician says. We ("Lupans") who are constant readers and researchers not to mention sufferers, usually know more than our physicians. All the best, LupanCatwoman Gail
Weather, particularly bad weather, certainly affects my joint and muscle pain, emotional tolerance, energy levels, and has always given me nosebleeds. What I’ve heard about it is that most people with lupus and many other chronic inflammatory conditions do know the weather affects them, and some doctors really believe them, but in general the medical community isn’t aware of any mechanistic explanation. But they forgot that most things aren’t explained until many years of research, which of course nobody is doing!
About his ridiculous comment on the mountain pass… I get nasty symptoms from elevation-related changes as well, including having nearly intolerable pain on airplane rides! When I was young I met an older woman on a plane going through the same thing (eerie how I ended up in the same boat 10 years later!) But I would say it’s not worth arguing with him about. Especially since there isn’t anything he can do about it. Since it’s not considered a legitimate symptom, nor is it specific to lupus, it won’t help you get diagnosed… Yet observing the patterns will help you personally to work around it somehow (or at least know why while you wait out the weather front!) Definitely don’t think you’re alone, crazy or a complainer. It’s real, and really hard to deal with!
That’s just silly of him to say!!! Of course weather plays a role. Any orthopedic specialist will tell you that the cold, heat, and damp all effect the joints!!! I feel for you waiting for that first all anticipated appt with rheumy. I remember trying to balance the same thing. I didn’t want that to be the issue but at the same time it was validation and no more head scratching. Only advice I can give is try not to obsess researching stuff on the Internet because no matter how hard you try it kinda gets in your head. That being said I understand that knowledge is power good luck!!!
Thanks for the responses, y'all! Warm or cold, temperature doesn't seem to bother me much. I live in a very hot place, and we can get monsoons during the summer. The quiet, hot points are not what make me hurt. It's the incoming storms. (It can be rather funny to have a strong hailstorm in July!) It might be the dramatic change from hot to cold, but somehow I doubt that. Strong A/C doesn't bother me at all (oh my, it feels soooo good during the summer!), so I think I can rule that out.
It is indeed nice to hear that others have the same thing happen, and that it is not somehow all in my head. It does, however, make me wonder what in the world I'm supposed to do when I read things that say "avoid triggers". How do they expect me to avoid the weather??
Tal...don't know if you're old enough to remember the old Doors' song "Riders on the Storm"?? That's what we all are, we gotta ride the storms out. LOL
Ally
Talencia said:
Thanks for the responses, y'all! Warm or cold, temperature doesn't seem to bother me much. I live in a very hot place, and we can get monsoons during the summer. The quiet, hot points are not what make me hurt. It's the incoming storms. (It can be rather funny to have a strong hailstorm in July!) It might be the dramatic change from hot to cold, but somehow I doubt that. Strong A/C doesn't bother me at all (oh my, it feels soooo good during the summer!), so I think I can rule that out.
It is indeed nice to hear that others have the same thing happen, and that it is not somehow all in my head. It does, however, make me wonder what in the world I'm supposed to do when I read things that say "avoid triggers". How do they expect me to avoid the weather??
Weather definitely affects my flares...if a low pressure or cold rain or snow is coming in.....I can feel it in my joints and have headaches...all the symptoms then kick in. I agree with "ALLERGIC"...cold a.c. or cold wind blowing in my face can trigger a flare. I am much better during the warm months. This has been a very long, cold winter here and one flare right after the other with the constant weather changes !
Some people literally move to places with steadier weather… But there are all kinda of reasons that can be difficult! The elderly woman I met on an airplane 10 years ago lived in Forks, WA, one of the dampest places on earth (and setting of the Twilight series…), which was horrible on her joints, She was flying back from spending some of the winter in Arizona where she always feels much better. I remember thinking, why on earth would someone stay living there when it causes so much pain??? But I was 15 and wasn’t fully aware of all the reasons it can be tough to relocate. I’m certainly keeping it in mind as I go through my choices setting up my life, but the best I can do is refuse to move anywhere that might make it worse and hope to be able to find somewhere it’s better and have a feasible way to live there…
I live in Arizona but used to live on the east coast. Big difference in weather. I sometimes miss the four seasons and all the foliage, but I also know how the damp, cold, cloudy weather makes me feel so terrible mentally and physically. I'm staying here. I figure I can always go 'visit' another location.
Ally
Faladora said:
Some people literally move to places with steadier weather... But there are all kinda of reasons that can be difficult! The elderly woman I met on an airplane 10 years ago lived in Forks, WA, one of the dampest places on earth (and setting of the Twilight series...), which was horrible on her joints, She was flying back from spending some of the winter in Arizona where she always feels much better. I remember thinking, why on earth would someone stay living there when it causes so much pain??? But I was 15 and wasn't fully aware of all the reasons it can be tough to relocate. I'm certainly keeping it in mind as I go through my choices setting up my life, but the best I can do is refuse to move anywhere that might make it worse and hope to be able to find somewhere it's better and have a feasible way to live there...
I haven't really noticed any flares happening as a result of the weather, but I have heard that Gout flares up when stormy weather is on the way. You might check into that.
As for your joint pain being an indicator of Lupus, that is almost impossible to say. My knees and ankles swell due to water retention. Sometimes it goes down, sometimes it doesn't. I had to give up horseback riding some years ago due to the pressure in my knees being unbearable when sitting on a horse.
I was feeling exhaustion almost all the time, but haven't had it bad for the last few months. Only if I don't get the sleep I need now, do I experience it. I believe that not being exhausted all the time is probably due entirely to taking Vitamin D3.
Yep, I noticed a big difference living in Oakland (East/sunny side of the bay from San Fran) because gray weather happens but is fewer and farther between! Plus, I could literally induce symptoms but taking the subway across the bay, then watch them disappear when I came back! I love it there for other reasons, so even though SoCal might be better for symptoms, Id like the Bay to be home. If I can ever afford it…
I’m now staying back in my hometown of Seattle (gray capital of the US in terms of urban areas, though the WA coast still has it beat by a long shot!) for a number of months getting my lupus under control and set up with a more sustainable career plan for long term. I moved to CA hoping to get into medical school there, but ended up in a year-long major battle with the lupus I just found out I had and probably have had a long time! I really came back kicking and screaming, and it really is harder to get better here, but with my parents supporting me right now till I get back on my feet, I don’t really get final say. They are finally coming around to understanding things a bit, but none of us can change how expensive it is down there. Working hard to increase my chances to get back there, even fighting uphill with the NW weather!
Allergic said:
Faladora,
I live in Arizona but used to live on the east coast. Big difference in weather. I sometimes miss the four seasons and all the foliage, but I also know how the damp, cold, cloudy weather makes me feel so terrible mentally and physically. I’m staying here. I figure I can always go ‘visit’ another location.
Ally
Faladora said:
Some people literally move to places with steadier weather… But there are all kinda of reasons that can be difficult! The elderly woman I met on an airplane 10 years ago lived in Forks, WA, one of the dampest places on earth (and setting of the Twilight series…), which was horrible on her joints, She was flying back from spending some of the winter in Arizona where she always feels much better. I remember thinking, why on earth would someone stay living there when it causes so much pain??? But I was 15 and wasn’t fully aware of all the reasons it can be tough to relocate. I’m certainly keeping it in mind as I go through my choices setting up my life, but the best I can do is refuse to move anywhere that might make it worse and hope to be able to find somewhere it’s better and have a feasible way to live there…
Lol, I actually have a nosebleed right now!!! Weather must have changed… I haven’t looked, still in bed aching at 2pm. It’s been like that all week with particularly heavy overcast and moisture hanging in the air that doesn’t quite empty out as rain. The sad part is, Seattle will be like this till mid-July…
Faladora said:
Weather, particularly bad weather, certainly affects my joint and muscle pain, emotional tolerance, energy levels, and has always given me nosebleeds. What I’ve heard about it is that most people with lupus and many other chronic inflammatory conditions do know the weather affects them, and some doctors really believe them, but in general the medical community isn’t aware of any mechanistic explanation. But they forgot that most things aren’t explained until many years of research, which of course nobody is doing!
About his ridiculous comment on the mountain pass… I get nasty symptoms from elevation-related changes as well, including having nearly intolerable pain on airplane rides! When I was young I met an older woman on a plane going through the same thing (eerie how I ended up in the same boat 10 years later!) But I would say it’s not worth arguing with him about. Especially since there isn’t anything he can do about it. Since it’s not considered a legitimate symptom, nor is it specific to lupus, it won’t help you get diagnosed… Yet observing the patterns will help you personally to work around it somehow (or at least know why while you wait out the weather front!) Definitely don’t think you’re alone, crazy or a complainer. It’s real, and really hard to deal with!
The worst times of the year for me are fall and spring, most episodes last anywhere from 2 weeks to 4 mths. It seems that summer is best for me as long as I am not in direct sunlight for to long or humidity.
I had indeed considered gout, but the pieces don't fall together very neatly for that. (Not to say it's impossible.) I am not old enough, and one of the worst places I ache is my hips, which I have not seen as being a gouty joint. This is, however, why I'm seeing my rheumy!
And ooooh yes, I love the CA coast! I was blessed to live along the coast for a while, and I miss the ocean dearly. I would move back if I could, but circumstances simply are not right for moving whatsoever. Perhaps someday we'll be able to afford such a heavenly move!
good luck!!!