Tal,
I definitely have more pain and swelling as well as "fog" during wet, cold weather. I do think that has more to do with the Rheumatoid factor than the Lupus itself. But, as we all can attest, Lupus is never just lupus. That is what is so difficult...the fact that we have more than just "lupus" symptoms. Our symptoms can manifest artheritis, heart disease, headaches, kidney and liver disease, etc.
It definitely appears that many members have the same issues. Not much can be done, but I do wear Heat Wraps, heating pads, warm baths and anti-inflammatories during this time.
I hope that you get a diagnosis soon so that you can start managing the disease rather than have it manage you.
Good luck in finding the answer. Not everyone is ANA positive, but if your kidney or liver panels come back abnormal insist on a biopsy as that should halp you find the answers.
Best to you,
DeAnne
Thank you for the advice, DeAnne. I know something is going on with my kidneys, due to my GP discovering a semi-consistent (always there, though in differing degrees) amount of blood in my urine. No stones that they could find, so he was sending me to a specialist for that specifically, but at that point I had gotten fed up with his methods of paying attention to SOME things and not to others. So I hadn't gone to that specialist. (Probably bad of me.) It took a lot of courage for me to work up the nerve to approach this rheumy, though, and so I'll stick with this. If he opts to send me to a similiar specialist for the urine thing, then so be it.
The funny thing is, concerning my joint pains, heat is what I feel from them, so I avoid making them hotter. For me, anything cold or cool feels blissful on them. Even cool glass surfaces (like my Kindle) feel nice on the backs of my knuckles. Occasionally I'll go so far as to use cold packs, but that's usually when the advil only takes the edge off, leaving me still very painful. Those are bad days. I'm definitely looking forward to getting some sort of answers and being able to move forward with lessening the problems.
~Tal
Yes my doctors tell me it's impossible too, but on the day before a storm comes in, I can barely move! And when the wind is really bad, the emergency room is FULL of people with worse pain and migraines. I have such a bad reaction to weather, I'm hoping to win the lottery and move my family to a place where the weather is mild year round. I feel like I'm wasting so much of my life being unable to function due to weather changes. Every patient with pain will tell you it DOES make a difference, even if we rarely read about it in scientific or medical papers.
Good stuff, Ann! Glad to see you back, you had taken a break right before I ended up on an unintentional break due to major disruptions in my lupus and personal life! I guess we a need breaks sometime, but it sure is great to get the benefit of participating… Like this book title and a good laugh about docs with their head in their behind.
Ann A. said:
Today the weather has made me decide to stay home where I can be warm and dry. Staying warm and dry will help me to avoid a flare.
The leading textbook Lupus Erythematosus by DuBois covered changes in barometric pressure. I used to share that chapter with doubtful docs. Internet posts can be dismissed. DuBois was not dismissed so easily. Too bad the book has become so large that this appendix only appears online.
Ann A.
My husband told me yesterday that there is a chance that we may get transferred to the London office. No offense to any of our friend "accross the pond" but I am totally freaking out about the healthcare situation. Nearly every picture depicts cold, wet weather but I have also seen some that are quite beautiful.
How do you give up the dry warm weather in Vegas for the perceived weather in England?
Weather has absolutely been a trigger for me, to the point that I was in KY during winter once and was homebound. I never want to experience that again.
Hugs to all,
DeAnne
DeAnne,
I will pray that your husband doesn't get transferred. That is totally opposite weather. My body would freak. Think positive, it hasn't happened yet.
Hugs,
Ally
London weather is a lot like Seattle weather (where I’m from and am staying for a few months now…) damp, dark, and occasionally gorgeous while staying temperate (beautiful summer days stay I’m the 70s for the most part, and very low humidity even on hotter ones in the 80s.) I always used to say Seattle’s perfect summers (and gorgeous views when sunny) make the dreary 9 months of the year worth it 
But then I moved to the San Feancisco East Bay (sunny side of the bay) and got that weather throughout the year, with sunny, warmish days at least a week or two of each winter month!
I don’t know London’s exact patterns, but I spent June there one year and a week of November another year. Winter is definitely colder than what I was used to in Seattle, but not harsh like the Midwest and Northeastern US! Not a ton of snow, just cold. I think it may have been a damp cold like Seattle gets, where a 45-degree day still feels freezing cold and permeates right into your joints! June was very mild, and a bit overcast about half the time. Of course Londoners can tell you far more accurate and typical patterns, but to me it was like Seattle with a chillier winter. I know Vegas gets that desert cold in the winter, so you may do alright with the winters, but the overall dampness will be tough to adjust to. I grew up dealing with it in Seattle, always knew it tortured me a bit (especially changes… Even before I got any pain with it I used to get nosebleeds as a kid when the weather shifted) and I really saw how much it affected me when I moved away! The Bay Area has its own problems of erratic weather: sunny and gorgeous November days in the high 60s might be followed by two weeks like Seattle November! Comparing and contrasting the weather patterns’ effects showed me a lot. I think the biggest factor that would bother you about living anywhere other than the non-coastal southwest is the unpredictability and changes. I have the suspicion we can adjust pretty well to different climates (physically, not psychologically!) if they don’t knock us back to go every few days or weeks!
If it does turn out he’s going, the wonderful thing would be a chance to be in such a dynamic, international, historical, and huge city. I’d love the chance to live there, but I’m totally a city girl. However, if your health doesn’t permit you to enjoy any of it, that’s a wash anyway! I would hope his company can make exceptions for medically necessary reasons, and I would bet that through FMLA or something similar they may have to legally. If you can get a doctor to sign that the relocation itself and/or the climate difference would cause undue hardship for you. Have him talk to the HR dept about his rights/options… They’re usually supportive of the employee and wouldn’t tell the managers what was discussed. Good luck!!!
Thanks for all of the super advice. I am from San Diego so needless to say a bit spoiled when it comes to weather. Didn't even have A/C always just opened the windows and used the heater about 2 weeks out of the year. Vegas is nice because of the dryness of the climate. Like you said Brynn it would be super to be in such a wonderful city...but only if I could leave the house to enjoy it. When it is cold here I wear a heat wrap which does wonders because it's not usually a wet cold.
Like you said, hasn't happened yet and will keep fingers crossed.
Thanks all,
DeAnne
::hugs to DeAnne:: Oh, that has to be daunting, not only because of the weather difference and culture difference, but as you said, the healthcare standards and procedures being so vastly different. I think it would scare me pretty badly too. Hang in there!
I have been down the last two weeks, but for once not due to weather/joint problems, nor exhaustion, nor even having a cold. It's those stinkin MULBERRIES! With the mulberry trees doing their thing, I get seriously asthmatic. I can't go outside, and going up and down the stairs has to be limited, cause it makes me short of breath. This is even WITH medications for it, lol. Ooooh, I hate Vegas this time of year!!! Thankfully it's easing now, but since it is easing, now my joints are acting up again. Augh, I can't win! ::amused rather than truly upset::
Thanks Talencia,
At least I won't have to go through any new changes alone...I have my family (you guys). I can't remember but do you live in Vegas. I admit the wind and allergies are a real downer, but the temperate weather is fantastic. Won't be but a couple of months before we are in 90 degrees at least. NOT looking forward to that.
We have a couple here from LV and I would love to get us together.
XOXO,
DeAnne
Talencia said:
::hugs to DeAnne:: Oh, that has to be daunting, not only because of the weather difference and culture difference, but as you said, the healthcare standards and procedures being so vastly different. I think it would scare me pretty badly too. Hang in there!
I have been down the last two weeks, but for once not due to weather/joint problems, nor exhaustion, nor even having a cold. It's those stinkin MULBERRIES! With the mulberry trees doing their thing, I get seriously asthmatic. I can't go outside, and going up and down the stairs has to be limited, cause it makes me short of breath. This is even WITH medications for it, lol. Ooooh, I hate Vegas this time of year!!! Thankfully it's easing now, but since it is easing, now my joints are acting up again. Augh, I can't win! ::amused rather than truly upset::
Yes, I do live in Vegas. I despise the heat, I hate the mulberries blooming, but I do love the monsoons! I'd be hesitantly interested in a get-together, but it would be nice to be able to talk to folks who understand a little better. I'm very lucky that I have quite a few people who love me and are very understanding, even if they aren't very familiar with lupus, not to mention my hubby, who is absolutely fantastic. Even so, it is always nice to come here and be able to express concerns or experiences and not be alone in them. ::hugs to all::
Talencia,
Please feel free to PM me. I guess sometimes it's just nice to have someone to chill and watch movies (or whatever) without judgement. No pressure and I am finding that there are actually very few of us in this area. It is one of the better areas if you have to have this disease. My husband has started to be more like himself, which I have to assume had to do with him weighing the moving issue.
Anyway, so glad that you have a wonderful support system. You are very lucky.
Hugs to all,
DeAnne
Talencia said:
Yes, I do live in Vegas. I despise the heat, I hate the mulberries blooming, but I do love the monsoons! I'd be hesitantly interested in a get-together, but it would be nice to be able to talk to folks who understand a little better. I'm very lucky that I have quite a few people who love me and are very understanding, even if they aren't very familiar with lupus, not to mention my hubby, who is absolutely fantastic. Even so, it is always nice to come here and be able to express concerns or experiences and not be alone in them. ::hugs to all::