Summer weather????

So my question is do any of you have a harder time once summer hits even if you stay inside? I had lupus symptoms for years but thought they were normal as I knew no different. Then when things started getting really bad to the point it was affecting my functioning I started to wonder. A few years ago we had a BBQ in the back yard and after the afternoon in the sun I ended up horribly sick and in bed for 3 days. Ever since then things have progressed each year it seems like end of June beginning of July I go into a flare up no matter what we do. Im on prednisone, plaquenil, and Benlysta infusions trying to combat the Lupus. Was starting to have results since starting the Benlysta and then this month have drastically gone down hill. Have been in a constant flare state the past 3 years. Had to quit working in December and have now come to the point that I can't even go to the store unless my husband pushes me in a wheelchair as the energy it take makes me flare up worse and puts me In bed for days. The last 2 years have been extremely hard as it seems like we can't get everything to level out. As soon as we start to gain some ground it seems like something causes another set back. It's so hard being 30 and having to use a cane to get around the house and a wheelchair if I have to go out for more than a few minutes as I can no longer stand up that long to walk across a parking lot without causing major issues. Last month I had about 3 or 4 good days where I actually felt human and had a couple good hours each of those days to the point I was actually able to clean the house. We were so thrilled as we thought the infusions were really starting to work and hoped I would continue to get better. Well then or weather drastically changed to warm and sunny and I've been horrible Ill ever since. All my symptoms have skyrocketed and I can barely make it around the house as I'm so swollen, the fatigue is so bad, and now I'm having terrible chest pain and shortness of breath. I'm extremely careful about sun exposure and stay inside as I know this has been a major trigger for me. But why do I still struggle so badly every summer? Do any of you have this problem? Sorry that my quick question turned into such a long post. Just really struggling with everything right now.

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  • I'm sorry to hear you've had such a decline - must be very frustrating. I'm only embarking on my third summer in my current state [and don't think as unwell as you]! I thought I'd got it sorted after the first disasterous one but hadn't. Heat is a problem - but this year so far has not been hot; I do have a fan. But I notice my sensitivity to pollens and things now [not had that before except for may blossom and some other trees when young]. I take fexofenodine every day. Yesterday in a somewhat covered up state and umbrella 10/15 minutes outside mid afternoon had me going red in the face and legs really aching... can feel skin irritating on hands and arms. I feel my best course of action is to be as calm as possible, to vary my body position regularly; try not to do stuff about the house straight away in the morning - ease into things. I'm coming out of a big flare and hoping things keep improving even as I feel "the summer" affecting me.

    The UV has been particularly high this June. Regularly, the forecast has been for 8 when the UK range is generally 1 - 7.

    I hope you find a way of getting through the summer without getting worse. Take care x

  • Thanks for your reply. I too have wondered if the pollens and allergies of summer make our lupus worse since allergic reactions are a immune response. I also noticed the really high uv level. I live on the Oregon Coast so I think our exposure and moderate climate are similar. Some days it's been saying uv level is 8 and 9 and that seem very high to me. I don't go outside but am thinking with the allergies and high level maybe it's still effecting me. Also been wondering if different pressure systems are playing a role pain wise with joints. The heat really gets to me too, I think it has a lot to do with the anemia for me, making me a lot more tired and week. I too try to ease into things and take each day slowly. Seems to help, takes me half the day just to get out of bed and get a shower in, but those days are better than ones that I have to be somewhere. When I have appointments and things and have to try to move too fast, the days always seem to be really hard ones. Well I hope the rest of the summer goes ok for all of us, thanks for the support!

  • I have problems if its that heavy warm weather when the airs not so good, have to stay indoors. The nurse suggested antihistamines as I have asthma, she said they'd help but so far I havent asked for any. I just stay indoors...

    I burn easily, the sun isnt good for Lupus even with high factor sun cream I can't sunbathe but I do enjoy sitting in warm shade....Being sick sounds like sun stroke to me... we have to be so careful I do sympathise xx

  • I used to be like that in the summer. Would take me hours trying to do the housework and felt absalutely exhausted. My daughter does it for me now. I have bought a lightweight battery vacumm cleaner just to try and keep the house clean inbetween my daughters visits. I can't dust as I drop things and find everything to heavy to pick up. Hate feeling like this.

  • Chrisj yes I stay out of the sun as it triggers full blown flares every time with out fail, skin rashes, inflammation, fever, fatigue, ect. But for some reason during the summer even staying indoors disease activity seems to be higher. My doctor has watched this for the past few years and doesn't have a explanation, other than some people are more sensitive than others, so we try to be prepared and stay on top of it. I just wish it didn't seem to make things a little worse permanently each year. I have had trouble with the heat since I was a little kid and I do think that has to do with heat stroke from my anemia. I also have a blood abnormality, thalassemia, it's kind of a form of sickle cell. So my rheumy says that he thinks my immune system is a little more complicated than just SLE as all the tests the do come back abnormal and have for so many years. So he tries to treat the lupus and be aware that other things could be contributing as well. Shortcake, I know what you mean, when its like this it's like my arms and legs feel like they are too heavy to move and when I wake up really swollen I can barely turn my body. I say I feel like the michelian man. Lol glad your daughter is helping you, always makes me feel better when the house is clean. I have trouble with dropping things when I'm really flared up too. Between the clumsiness and the brain fog it makes me feel so stupid sometimes. On a positive note I went to the doctor to have the chest pain, shortness of breath, and fast heart rate looked into. Waiting on results but doubled my NSAIDs and doing so has got my heart rate more under control and brought the pain level down a bit. So I'm thinking I've just been having crazy inflammation with this flare. Thanks for your replies and hope you are all having good days. :)

  • Since I wrote my first reply we've had some warmer weather and I've strted to feel my skin begin to coplain - just a general sense of "oh I'm not too happy about this". It can be hard to know if it is a bit of anticipation of a problem. A warm week ahead. The anti histimine does make a difference. A few years ago I think I'd have been very surprised to know that I would end up taking antihistimes everyday...

    I was at an all day Quaker meeting on saturday and during the lunch time everyone went out, as it was a warm sunny day - I found a shady spot indoors beside an open door that allowed the breeze in and found I could enjoy that and not mind not being outside. At that time of day I'd have needed face and head cover and my umbrella - not entirely practical for eating!!

    May we all find our way through the summer...

  • Thanks for sharing this. And yes I hope we manage ok through the summer. I live on the coast so it stays cooler than a lot of areas but I still have a hard time when its warm and sunny. Well today we had to go out of town to the valley for one of my doctor appointments. It ended up being a very long day and the lowest temp was 97• Fahrenheit. I felt like I was melting all day and am definitely feeling the effects tonight. Hoping it doesn't set me back too far and so wish fall would hurry up and come. I don't know about you guys but my skin almost feels raw after a day like today. I think maybe I should try the antihistamine and see if it helps. My eyes, nose, and throat are sore, watery, and itchy. I think the allergies make our lupus symptoms more intense. Something to try anyways and see if it helps. Hope you guys have a great weekend, stay cool and in the shade. :)

  • antihistimes - fexofenodine, have made a difference to me, particularly in the summer. I feel that the lupus has made the allergies in my case. It's the time of day that I can go out now! so better get off the computer and get some fresh air!

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