Hi everyone :) I have a quick question about flare ups .... I live in Arizona and we all know that summers here are rough butI noticed i have more joint and knee pain and swelling as the weather gets warmer here..I know usually the cold weather causes most the symptoms to flare but mine always seems to feel worse in the warm/hot weather . ..so just wondering if anyone else feels worse or flare ups are worse in the summer months then in the cool weather ?
Hi - I live in South Africa, in Johannesburg in particular. Ive also encountered the same, the sun and heat makes me miserable. I have suffered alot this summer with joint pain, including my knees literally' telling 'me when the summer rains are approaching! I try and stay away from the sun as much as I can. My husband recently bought me a mobile battery operated fan to wear around my neck for the times when I have to dash from the car into a building. I find the heat makes me sick and miserable for a very long time. Makes my migraines worse too, especially when the sun shines brightly.
I haven't noticed that heat or cold makes my joints hurt any worse... however, that being said, I do know that Arizona has monsoons like Vegas does, and those DO make my joints ache much worse. I haven't figured out the correlation (is it barometric pressure? Something else they haven't quite pinned down?), but it is undeniably there. It doesn't bother me as much during winter months, but if we have major storms, I still hurt then too.
I do want to note, however, that being too warm triggers other aspects of my Lupus. I get my butterfly rash if I get too hot, and I start to feel yucky. Lethargic, uncomfortable, exhausted, cranky, and flu-like type symptoms too.
I am convinced that the barometric pressure plays a roles in how much pain I feel. I have found that when the barometric pressure is over 30.1, I am in pain. I have been monitoring this recently. It could be different for each person. I also find that the level of humidity impacts me but I think that is also related to barometric pressure so I will see how it goes as I continue to monitor it over the upcoming summer months. I do know that last summer, I had a lot of pain on hot, humid days and anytime we had big changes in the weather.
I live in So Ca & dread summer. Last summer I was in a constant flare requiring Cytoxan. The heat & sun make me sick. Right now I’m back on Cytoxan for retinal issues & low platelet count so hopefully I’ll be ok for 6 mos as long as I stay on Cytoxan. My joints hurt when it rains not so much in summer. I’ve lived in Az & it felt like a blast furnace in summers, hot & dry heat. I only lasted 10 mos & had to move to Ca. At the time I didn’t have Lupus.
Ann A. said:
PHOTOSENSITIVITY IS NOT LIMITED TO SKIN RASHES IT CAN CAUSE ALL THE CONSEQUENCES OF A MAJOR FLARE INCLUDING ORGAN DAMAGE.
REFERENCES UPON REQUEST
Hi Ann,
You have mentioned in your post " references upon request" well im very interested in those references ..... I have SLE Lupus and Sojgrens, but I do not get, and have never gotten the butterfly Rash on my face, i do get everything else though and do have some kidney involvement ...
Thank you to all of u for responding to my question.... :)
I've also experienced the same. Whilst sensitive to light, when i do spend time in the sun I tend to get itchy lumps on my head,itching and redness on my arms and feet. Sometimes I do get a fine rash on my forehead - especially before the onset of the awful low grade fevers. But I have never got the butterfly rash. My Mum is a Loopie (in denial) and Ive seen her rash a number of times.
When I was first diagnosed, I was told about the Sjogrens Disease. But oddly I had none of the dry eyes etc,still don't. I suspect the bloody Doctor just didnt want to say 'Lupus' because I've gone on to be treated for Fibromalgia and RA. The attitude of the doctor really blew my whistle, he said I should just get up and get going. No Pity Party. And I spent 4 months (on-and-off) in hospital thereafter because he didnt 'believe' in Lupus etc. I digress, but my frustration with doctors is never ending. I dont trust them,at all!
Hey Nikki,
Sounds like you have a sun/heat trigger. I do too. Make sure you are staying cool as you can and use a good sun screen. Also try not to let yourself get dehydrated for some reason that always makes the joint pain worse. I hope that helps. God Bless Julie
Hi Niki,
With Lupus, both the sun and heat itself are notorious for causing flares. Just try to learn your limits of how long you can stay in the sun or in a hot location-- give yourself frequent breaks, cover up in light clothing & use sunscreen, keep water with you, and always try to recognize the coolest place where ever you go just incase heat gets to be too much, etc.
Take care!
I live in Florida, the sun and heat makes me miserable. just 5 minutes drains me and I have to rest for hours. I try limit my time outside but I work so its impossible for to limit my time outside. in florida we don't have spring, we juse slide into summer 10 long month of summer.asia64
I live in Arizona also, I feel worse in the heat than in the winter. I can tell when the weather is going to change by my aches and pains but the overall fatigue, nausea and just plain hit by bus feeling is usually saved for summer here. It has helped me to avoid the sun at all costs and try not to go out in the heat as much as possible. I have talked to my Dr. about it and she seems to think it is a combination of the lupus not liking the heat as well as the meds I'm on don't play nice in the heat. I wish I had an answer to make it better, just know you are not alone. :-)
Oh , yesthe summer months, I really stay inside when it’s daytime til at least the sub is almost setting. I can’t handle it it’s like my body get’s a mind of its own I’d am outside for hours. I don’t understand why, but have its been 4years now for me with SLE LUPUS n I haven’t mastered that part YEY! Best wishes for you…Beverly L.
The sun makes my bones ache. I'm not technically diagnosed yet but thought I would throw that in there.
I suspect I may have lupus. And do have fibro. Sooooo
Wow, I posted a similar question, so I guess we may be onto something! I've visited Florida.twice within a matter of months, while returning to.Massachusetts in between Andy knees hurt much more in Florida, plus they are also stiff and feel heavy. Cramps to in the calf. Both times I came back to Florida this happened but was fine in Massachusetts.
Maybe it's lupus that causes the change in warmer months? Insure would love to know if there is a link between the two and I am sure you would too! I find that icing them helps. I guess it makes sense as it brings down swelling and inflammation. Hang in there!
Bubbly - I can relate to your feelings. I also don't get the butterfly rash either. I do however get a scalp rash and am starting to get bald spots and also have very itchy rashes on my legs. My doc just ignores me on those. I have been diagnosed with Connective Tissue Disease but she tells me it is "Lupus Like" and she is treating me with Plaquenil. Apparently I tested positive for Lupus and for RA but didn't have all of the proteins for either, but I still don't know what that means. My daughter has Lupus. My condition seems to be getting worse, joint pain, fatigue, etc. The cold weather and the hot weather; either extreme, cause extreme pain and there are days when I can barely get out of bed but like you said, no understanding from the doctor, just an attitude of "what's your problem, you're fine, come back in four months". I'm really looking forward to Spring although rainy weather hurts too!
Bubbly said:
I've also experienced the same. Whilst sensitive to light, when i do spend time in the sun I tend to get itchy lumps on my head,itching and redness on my arms and feet. Sometimes I do get a fine rash on my forehead - especially before the onset of the awful low grade fevers. But I have never got the butterfly rash. My Mum is a Loopie (in denial) and Ive seen her rash a number of times.
When I was first diagnosed, I was told about the Sjogrens Disease. But oddly I had none of the dry eyes etc,still don't. I suspect the bloody Doctor just didnt want to say 'Lupus' because I've gone on to be treated for Fibromalgia and RA. The attitude of the doctor really blew my whistle, he said I should just get up and get going. No Pity Party. And I spent 4 months (on-and-off) in hospital thereafter because he didnt 'believe' in Lupus etc. I digress, but my frustration with doctors is never ending. I dont trust them,at all!
Up until last July I lived in Vegas. My husband got a job transfer to Hawaii and I thought "Oh, yippee". Not so much now...however, what I have noticed is that ANY dramatic (10 degrees ) change in weather, specifically pressure, either direction causes severe pain in my joints. I think k we are all looking for Nirvana, but I think it is important to really be prepared for whichever direction your weather is headed. Probably finally got used to your winter weather and then they flip the switch...ugh!
Good luck and hope you find something to help you feel better.
Cathy,
Just FYI, 1% of lupus sufferers are NOT ANA positive. Mine was found through a kidney biopsy. I have never been positive. Don't give up until you get the answer YOU need.
And a lot of lupus are very sun sensitive, many times causing a rash.
Cathy In MD said:
Bubbly - I can relate to your feelings. I also don't get the butterfly rash either. I do however get a scalp rash and am starting to get bald spots and also have very itchy rashes on my legs. My doc just ignores me on those. I have been diagnosed with Connective Tissue Disease but she tells me it is "Lupus Like" and she is treating me with Plaquenil. Apparently I tested positive for Lupus and for RA but didn't have all of the proteins for either, but I still don't know what that means. My daughter has Lupus. My condition seems to be getting worse, joint pain, fatigue, etc. The cold weather and the hot weather; either extreme, cause extreme pain and there are days when I can barely get out of bed but like you said, no understanding from the doctor, just an attitude of "what's your problem, you're fine, come back in four months". I'm really looking forward to Spring although rainy weather hurts too!
Bubbly said:I've also experienced the same. Whilst sensitive to light, when i do spend time in the sun I tend to get itchy lumps on my head,itching and redness on my arms and feet. Sometimes I do get a fine rash on my forehead - especially before the onset of the awful low grade fevers. But I have never got the butterfly rash. My Mum is a Loopie (in denial) and Ive seen her rash a number of times.
When I was first diagnosed, I was told about the Sjogrens Disease. But oddly I had none of the dry eyes etc,still don't. I suspect the bloody Doctor just didnt want to say 'Lupus' because I've gone on to be treated for Fibromalgia and RA. The attitude of the doctor really blew my whistle, he said I should just get up and get going. No Pity Party. And I spent 4 months (on-and-off) in hospital thereafter because he didnt 'believe' in Lupus etc. I digress, but my frustration with doctors is never ending. I dont trust them,at all!
I haven't experienced having lupus during the cooler weather, but I have experienced joint and knee pain in the summer weather so I totally understand your pain. After this winter I will let you know which is worse personally for me.