I feel the same as you, I have not been diagnosed with LUPUS, I am waiting on Rheumatology, and I am living like you just over the border in Maine. I live in my pool in the summer, and It is such an incredible struggle. I have been complaining to my doctors for decades. I finally did full real genetic testing on myself, and I have MTHFR double T677T mutation with high homocysteine levels, and a bunch of mutations for lupus, psoriatic arthritis, and RA. I ran a Rheumatoid Factor IGA, IGM, IGG on myself and my numbers are off the charts. Waiting for rheumatology, but I flush in the heat, I get a rash on my face, and I will pass out.

I feel the same as you, I have not been diagnosed with LUPUS, I am waiting on Rheumatology, and I am living like you just over the border in Maine. I live in my pool in the summer, and It is such an incredible struggle. I have been complaining to my doctors for decades. I finally did full real genetic testing on myself, and I have MTHFR double T677T mutation with high homocysteine levels, and a bunch of mutations for lupus, psoriatic arthritis, and RA. I ran a Rheumatoid Factor IGA, IGM, IGG on myself and my numbers are off the charts. Waiting for rheumatology, but I flush in the heat, I get a rash on my face, and I will pass out.

Hi Leigh, I just came across your message here. I’m sure that you have already been seen, treated and had your questions answered. But just in case someone has the same question, YES! At least for me. That was my first onset, the intolerable pain on the back of my neck that radiated half way up my head. A few times I felt like I would never make it through honestly. And I have a high tolerance for pain. I have had Lupus for going on 11 years and it’s still a learning process every day. But I know when a flare up is coming by the beginning of the back neck pain. Sometimes I can intervene in time with medication, rest and other things. But there are those times when no matter what I do it’s coming with a vengeance. My latest symptom is the excessive heat and sweating. It’s not like a hot flash from menopause just popping up out of the blue sometimes. No, this is caused by the slightest change in room temperature, stepping out under the sun even for 5 seconds, the minute the heat from my flat iron comes close to my scalp, when I’m cooking, moving rapidly, a bit stressed, and my favorite, drinking warm tea, in the dead is winter. It’s embarrassing. I can’t go anywhere without having a fan or something to produce cool air along with me. They say you get use to it but it’s difficult to when your make up is caked up around your nose when walking into a meeting and it looks like Niagara Falls on your forehead. The way I look at it is this; I deal with flare ups, pain, fatigue, sweating and many other things, but it can still get so much worse. It took me years but I’ve learned to appreciate what I don’t have. I still get to watch my babies grow, I have the freedom to come and go, I have air in my lungs, I’m alive. Don’t get me wrong. I don’t see Lupus as a blessing in any way. I have never been grateful for getting it, among all the other sister diseases that accompany it. I’m not the kind of person who embraces and welcomes lupus every morning with a smile. I hate lupus! It took me along time to see the flip side. I manage it with medication, lifestyle changes, various means of exercise and I cut out all unnecessary negativity in my life, as much as I could possibly at least. Having Lupus has taught me humility, patience, self awareness and appreciation, not of it but of the things that matter to me. I still get angry at times. I still struggle with life like anyone else would. And once in awhile I still have pity parties. But I always come back to myself and remember that it could be worse. Take care

Hi Dr.Tracy, i would like to ask who is the reimaolilogist i coul contact for this acthar medication.i have the same problem with heat like you had thank you if you reply

I have lupus and porphyria( this is a fun combo, not!!), hypothyroidism after ablation, white matter disease, dysphagia, ALPs, etc. I can not tolerate any sun or increase in temperature. I live in the dark in isolation. My dr’s have no problem diagnosing me with everything under the sun (pun intended) but have no real advice or treatment except to hide inside and spend a fortune on sunscreen. It’s a miserable way to live. Sorry for the negativity but it’s the middle of August in NH.

I have the exact same sweating issues. I am 63 now but have had these issues for 15 years. I was officially diagnosed with lupus about 12 years ago. I finally at that time had several elevated Ana tests along with joint pain, fatigue, swelling, sweating profusely after any outdoor heat or sun exposure, and like you after EVERY shower. I have to lay under a ceiling fan for 15 minutes just to stop sweating so I can get dressed. It is about impossible for me to work out of the home due to the seating and red face etc. I’m really trying to work from home, but haven’t found a great job yet. So for me sweating with a lot on the face and scalp and neck is killing me. I especially hate summer. Also my ankles and feet are super swollen which hurts and is embarrassing. Oh lastly, my latest Ana tests are normal despite the fact that my lupus is worse just by the swelling, malar rash and heat intolerance. So now the doctor acts like he will remove the diagnosis. Ughhh. I even have heart rate issues, high BP, and off and on kidney issues. This is all so crazy to me!

Hi Irene, you need to see an endocrinologist. I am experiencing the same situation right now. My rheumatologist sent me to the dermatologist and she said an endocrinologist will help me. The hair sweating is hypohidrosis. Hope it goes well