Did you experience more frequent and/or severe lu... - LUPUS UK
Did you experience more frequent and/or severe lupus flares during the hot summer 2018 compared to summer 2017? (Please explain in comments)
Paul_HowardPartnerLUPUS UK70 VotersPlease select all that apply:
Haven't felt good for months now and believe the hot and cold weather adds to flare ups
I had more frequent and severe flares this summer than last summer. Heat makes me feel very ill, I get heat exhaustion and get physically sick really easily with heat so don't know if thats why making everything else worse?
Just back from Turkey and didn't experience any sun sensitivity at all, however did experience problems with right hip joint and right hand. I have noticed that whilst at home, if I'm driving in the sunlight I do experience problems with the sun and get very blotchy??
The excessive heat made me struggle a bit but as long as I kept in the shade and cool it was not as severe. Exhaustion was the same .
The sun and heat made me feel extremely unwell. Lupus symptoms was more severe. I could not go out on the extremely hot days due to the affect of the sun. My fatigue was overwhelming.
My fatigue was so much worse. I could not go out in the middle of the day. Physically sick at times
My legs and feet very swollen and breathing difficult at night
I was retested over and over for dangerously low potassium levels in spite of drinking more due to dry mouth and taking electrolyte drinks but that may be new.
Rarely left the house. Vit D has taken a big drop again. Not sure whether that's a 2018 thing though.
I cant even feel heat I only feel the cold. My flares are usually in the spring and fall. Not in the summer or winter.
The summer of 2017 was horrible for me compared to the summer of 2018, but this summer we had installed central air in our house. I do believe this made a huge difference, I only had one severe flare this summer compared to 3 in 2017. Usually temperature change either way hot or cold affect me negatively and put me in a flare.
The best investment that I have made for my health was installing the central Air in my house. It has been a lifesaver for me.
Oh my gosh, I don't know how you did it before, I feel for you, bad! Heat makes me so sick, esp. now that I've been diagnosed w/ stage 4 Non-Hodgkin's Lymphoma, on top of Lupus or Diffuse Connective Tissue Disease? My Doc's can't seem to make up their minds, as to which one I have or both? I hope you at least had some window units for your bedrooms? Without AC in the Spring, Summer & sometimes up until Dec., yes, we get days in Dec., that are in the 70's sometimes and I can not deal with the heat anymore. I live in E. NC and the humidity is so bad 7-8 months out of the year, it's just miserable, you can barely breathe some days. I don't even want to leave the house, and I used to be so outgoing. If I didn't have AC in my house, or at least a couple window units, you would find me camped out in the sporting section of Walmart, in a lounge chair, praying no one saw me! Then when they did, they would probably have to call the police, and drag me out, kicking and screaming! I'd imagine after several times of this, either DSS or some nice Air Conditioning Co. would see me on the news, totally embarrassing myself, and might hook me up with some window units or central AC? Nobody who is sick should have to live like that, I go without food a lot, just to pay my electric bill in the summer months. Glad you have central AC now! Enjoy the heck out of it!
My skin reacted more severely this year than previous years, far more sensitive.
Rain effects me more than hot or cold weather, although, my fatigue was worse in the heat
Fatigue worse, joint pains, rash on face & other parts of body, facial & body swelling and body temperature up & down, generally feeling ill.
Hi Paul,
I experienced less severe flares this summer because I had noticed in 2017 that I had developed some photosensitivity, but did not develop much of a routine to protect myself. The heat of 2018 pushed me into being rigorous in my use of sun cream and sun hats, so ironically the severe heat made me take action that reduced the number of flares.
Regards
Jennifer
Skin was ok, it was my joints and fatigue that worsened. Still struggling - arthritis is affected by weather
estoy cada dia peor mi fatiga y mis dolores se siguen complicando con muchas mas afecciones
The sunlight really makes me feel ill especially when in a car. I get really bad headaches and I feel physically sick. My joint pains and fatigue are much worse in the heat.
I have had a terrible year..since Feb I have been flaring..3 lots of Prednisolone that I'm still on and now immunosuppressants which I started a month ago. Haven't been out spent most of the time indoors with curtains closed..very depressing!! Skin has been awful and joint pain and fatigue. 2018 terrible year so far.
I had almost monthly flares, though my doctor and hospital were unable to confirm that my 'flares' were actually linked to Lupus. However, I know how ill I was and how long it took me each time to get over them. The doctors have not come up with any other prognosis for my 'flares'.
