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Hello @thestruggleisreal,
Welcome to Connect; we're glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it's like having an invisible illness!
I encourage you to read through past posts in this discussion – they are incredibly informative, and I'm certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888
@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?
Replies to "Hello @thestruggleisreal, Welcome to Connect; we're glad to have you join us, and thank you for..."
I also take Plaquenil and at night I sleep on "Chillow Pillows" which I love and keeps me cool at night. I do have a curiosity questions.., you spoke of getting just a touch of sun and it making you bedridden. Is it just pain or a physical sickness. The reason I ask is I can be exposed to the sun and while it will make me hot in a different way than others and I will probably get red splotches on my skin, these will disappear when I get out of the sun but I do not get sick so I am trying to understand your symptoms.. Thanks
By the way I am also very sensitive to fluorescent lighting and have to work with my office light off and use a small lamp instead
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I am on medication - Plaquenil, and every 6 months I have to have a special eye exam. I take some other meds so that I can be comfortable when trying to sleep. As far as heat, that is a tough one. Just a couple of days ago, I was seated outside in the shade, but the sun did come through the trees a couple of times, and that is all it took for me to be bedridden and in pain the following day. I try to not get overheated because that makes me have a bad reaction.