The summer months bring the heat — and plenty of sweating and hot flashes. Many Lupus Warriors experience heat-intolerance and are at an increased risk of overheating. šµāļø
Feeling hot? People with autoimmune diseases frequently experience heat intolerance when the mercury rises. This means the body struggles to regulate temperature, resulting in a person feeling unbearably hot. It can result in symptoms like hot flashes, night sweats, and excessive sweating.
Nitric Oxide, Lupus, and Overheating
First of all, individuals who have heat intolerance in addition to an autoimmune condition have been found to have elevated levels of nitric oxide in the body. Naturally occurring nitric oxide in the body, such as endogenous nitric oxide, works as an agent to widen blood vessels.
This widening of the blood vessels (known as vasodilation) also occurs when the body’s core temperature increases. Vasodilation causes more heat to be carried by the blood to the skin, where it can be lost to the air.
For Lupus Warriors, too much heat is rapidly transferred from blood to skin during vasodilation. This causes overheating. Itās very common for Lupus Warriors to be in a warmer setting and unexpectedly experience an intense overheating episode.
LupusCorner Insights Survey Results
LupusCorner conducted a poll of over 530 members of the LupusCorner community about the impact of environmental and weather factors on lupus and lupus symptoms.
77.8% of people with lupus agreed that environmental factors impacted their lupus symptoms. Environmental factors considered were pollution, allergens, and the weather.
The environmental factors that most influenced lupus symptoms in the survey were increases in temperature (68.9%) and humidity (57.8%).
The most common lupus symptoms impacted by environmental factors were fatigue (81.4%) and joint/muscle pain (81.4%).Ā Headaches, lupus flares, rashes/lesions, and brain fog were also commonly reported.
What steps have you taken to combat these environmental factors?
This response was free text. Responses generated the word cloud below. The size of the word correlates with the frequency of its use in the responses.
While “sun” shows up, most responses had to do with “sun safety” or “staying out of the sun”
Hyperthyroidism, Overheating, & Lupus
Thyroid Disease
Located in the neck area, the thyroid is a butterfly-shaped organ responsible for regulating the metabolism and releasing hormones. It plays an essential role during pubertyā(think of all the significant hormonal changes during that time).
Metabolism and core body temperature are undoubtedly linked. A 2009 study at the Transactions of the American Clinical and Climatological Association reports that an increase in body temperature is associated with a higher metabolic rate, and higher body temperatures do speed up metabolism. Because of this, an overactive thyroid might cause intense overheating episodes.
Thyroid disease is a blanket term that describes a number of conditions. The most common subsets of thyroid disease are:
- Thyroid nodules
- Hypothyroidism
- A condition in which the thyroid gland doesn’t produce enough thyroid hormone
- Hyperthyroidism
- The overproduction of a hormone
- Goiter
- Abnormal enlargement of the gland below the Adam’s apple
- Thyroiditis
- Inflammation of the thyroid
- Thyroid cancer
Any of these thyroid conditions can have a significant impact on the metabolism, hormones, and body temperature.
Comorbidity of Hyperthyroidism and Lupus
Typically an under-active thyroid produces symptoms that are very similar to lupus, for example:
However, an overactive thyroidāor hyperthyroidismācauses symptoms such as skin rash and dizziness which Lupus Warriors experience, too.
More Lupus Warriors experience under-active thyroid disease. Therefore, there needs to be more attention on the overlap between thyroid disease and lupus. Per the study “Prevalence of thyroid dysfunction in systemic lupus erythematosus,” there is much more to be discovered regarding the comorbidity of thyroid issues and lupus. According to these researchers, SLE patients should be routinely checked for autoimmune thyroid disease.
Menopause and Lupus
Another culprit for heat intolerance is menopause. Women experience this natural part of life usually in their 40ās and 50ās. Hormone levels drastically deplete causing significant symptoms and changes within the body.
Menopausal Symptoms and Lupus
Low levels of progesterone are linked to hot flashes. Also, other natural hormonal changes might cause night sweats or hot flashes. Sometimes hot flashes and night sweats just interrupt sleep. Other times, they can negatively and severely affect the quality of life.
Lupus does not intensify hot flashes or night sweats. The overall heat intolerant nature ofĀ Lupus Warriors can compound with hot flashes causing much distress. Lupus also does not cause too many irregularities with menopause, but there have been cases of early perimenopause and/or menopause in Lupus Warriors.
The Takeaway
Talk with your lupus treatment team to determine the exact cause of overheating. Regarding menopause, there are abundant resources out there for women who experience hot flashes and night sweats from these hormonal changes.
Finally, remember that hot flashes, overheating, and intense sweating episodes are challenging and exhausting. Staying calm and talking to a medical provider about symptoms will help streamline treatment and bring comfort…hang in there.
Article updated: August 25, 2020
Iām turning 65 in November and I have Lupus SLE plus a whole lot of other Lupus related diseases etc. I have been having the most terrible hot flushes for the pas 3 years and I am not really coping with this at present. I have just been weaned off prednisone and have been without it now for about 2 weeks. I still get the hot flushes and sweat like really bad. I canāt stand it and itās embarassing. Iām also swollen and very very very exhausted all the time and have pain which hurts when I walk. I donāt know what to do anymore??
I can identify with you and what you are going through. I joined the YMCA and have been going to the pool 3 or 4 times a week. I donāt swim laps, they have a lazy river and an exercise pool besides the lap lanes. I do exercises in the pool and walk the lazy river, it has done wonders for my pain and inflammation and doesnāt feel like exercise. An added bonus is that I have lost weight also. Also try a by low FODMAP diet, that also helps with the bloating and inflammation. I immediately dropped 5 lbs and very rarely bloat. Itās more of just removing certain foods from your diet and not really a diet
I am 60 had hysterectomy in 93 diagnosed with lupus in 94 been told by a few dr I donāt have it more have told me I do. I be had all the problems that can come along with lupus had the bad heat with all the sweating doesnāt help Iām obese so water running off me is not new the new things are severe dizziness and severe diaphoresis and feeling great to unable to move without hitting the floor urgent care said it was a migraine donāt think so just lupus Iām not sure what the solutions are just know must of use are here together with most simular prob love to you all
Has a doctor run an MRI to check your Pituitary/Hypothalamus and the hormones get ACTH, GH, TSH, T4, T3, TRH? Have you had recent heart studies? SEE AN ENDOCRINOLOGIST WHO CHECKS THESE HORMONES!!! I am not a physician but an astute student of medicine
I’m feeling powerful overwhelming… Like If just one person comes out with a positive way, I’m glad I did. Your message maps or perfectly what helped my diagnosis…. I just wanted to stay asap… But I wanted to add your process list is to check”cortisol” it’s done and measured mornings between 8am and 9am. If high you will do it a few times… I was a young Lupus sick girl but ended up having “Cushing’s Disease”
Good luck! Done let the world treat you like an invisible beautiful life, since no one understands!
I have lupus , I was out in heat cleaning yards for three days. Iāve been dizzy as throwing up. Itās been 3 days now Iāve been sick. How long will it last ?
Avoid the sun
Hi, I was diagnosed in 1994 at age 24 and happen to live in Central Texas where it’s extremely hot and humid. I pretty much grew up living outdoors, enjoying the lakes and water sports, the close by gulf coast, camping, gardening as a child and as an adult, BBQ’s – you name it, I was outside with a beautiful tan year round! Back when I was diagnosed, my Rheumatologist and other doctors warned me about the sun. They recommended light weight long sleeves, sun screen and big hats plus doing all my outdoor activities in the early morning and evenings as the sun went down. I really had a hard time adjusting and it was almost impossible to avoid the sun in Texas. I learned my lesson though with increasing butterfly rashes, extreme fatigue and flares involving organs after days avoiding doctor’s advice. After a few years of following the “avoid the sun” instructions religiously, I began experiencing extreme exhaustion and flares after very minimal exposure to high outdoors temperatures – just walking from my car to work or running errands. I was exhausted to the point of being stuck in my bed, unable to care for my family for long periods. I was working from home so I could control my own temperatures. I couldn’t use the heater during the mild winter times and blasted the air conditioning during spring, summer. Everyone else was frozen – I was only 26-27. I kept telling my doctor’s that I felt like it was because of the Lupus and I felt strongly that heat intolerance was a symptom specific to Lupus. (I also have 2 other diagnosed autoimmune diseases, fibromyalgia, migraines, gastroparesis (and heart and adrenal involvement diagnosed years later)). Back then, I was told that it wasn’t. I’m glad that patients today at least know the cause so they can take precautions, schedule around it as much as they can and try to live in a State other than Texas if possible…LOL
As for when will it end? I don’t want to be discouraging, but it varies per person. With each passing year I have less and less tolerance for heat and humidity. The sun seems like the least of my worries in comparison since even shade doesn’t help. The symptom itself will never go away. Good news is that it may only affect you when you are having a flare. Bad news? Pushing it may cause flares. Rest, take cool baths, use your air conditioner and take advantage of cool mornings and evenings. Good luck and I wish you good days ahead!
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 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.
I’m not sure I understand the article. Does or does not lupus cause night sweats?
Hi there!
Lupus does not intensify night sweats, however they can be symptoms of menopause and other hormonal changes.
Thanks!
I am post-menopausal. 62. I have all day sweats with a new lupus diagnosis.
5l never tryed to check out. Or be tested for but mabey now is good as time as eny . well i am takeing care if someone whom has shes aewsomre so an still has alot of life left most days this news lettet gets us thruw thank youbecuade of you we wont give up. Debbie nt
I’m well past menopause, having had a full hysterectomy at age 30. The Rheumatologist today (I was diagnosed in 1994 when heat intolerance and sweating weren’t included as symptoms) says that my 24/7/365 heat intolerance and the sweating episodes I have during the day and night are caused by Lupus. I had menopausal hot sweats after my hysterectomy- these are very different. Usually I’m just heat intolerant rather than sweating or “hot sweat” type periods. I don’t have hormones to become imbalanced. The estrogen caused breast cancer so hormones are off the table. It definitely could be possible that not every person diagnosed with Lupus has heat intolerance. If I hadn’t had it from the beginning and hadn’t already had menopause, I’d look at menopause being the culprit before I would jump to Lupus – mainly because that would mean it’s only temporary!
Hi Angela, I’m like you in respects to the start of heat in tolerance. I was diagnosed with Lupus before menopause & noticed sweating profusely around the time of the beginning of menopause. Hyperthyroidism also include in the mix makes for a miserable summer. This is ongoing some 20 yrs now so I can relate!
I also just read that lupus can cause early menopause. Thank 43 and having this issue as well.
I was diagnosed in 2017 and I agree with all of the above comments. THe sweating is unreal, fatigue, brain fog etc and today I was told due to the prednisone my natural insulin is no longer producing naturally so i have to have injections for the next 4 weeks which now i have to put off spine surgery from a bad fall in April. Cant win for losing with this disease
Hello my name is leighann and i was just diagnosed with this disease butcurrently on no medication for it. Waiting to see myrheumatologist. My biggest problem is, in the back of my head feels tight like someone is squeezing it. Is that common for lupus? I cant even lay down at night feeling it. Please help me with the symptoms.. Somedays i just feel horrible.
I had this along with migraines and was told that inflammation, part of autoimmune disease, was squeezing the blood vessels in my brain and causing the sensation you describe, migraines, and pins and needles sensations on my head and face. Benlysta has helped me with these symptoms.
I’ve received help with different injections to relieve and reduce tension, knots and nerve endings for what you are talking about from my
Pain Management Team. Honestly, none of the pain medication they tried over the past 28 years have come close to relieving those symptoms as the injections. They have trigger point injections that are helpful if you return every few weeks for a couple of months; Nerve blocks for different areas; Steroid injections and the one that has worked the best for me over the last few years is the RF (Radio-frequency Nerve) ablasions which can help for 6 months to over a year. Physical Therapy and specifically Aqua Therapy can help a lot either by themselves or in combination with the injections or with massage. Wishing you good days!
Hi Leigh, I just came across your message here. Iām 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 itās 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 itās coming with a vengeance. My latest symptom is the excessive heat and sweating. Itās 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 Iām cooking, moving rapidly, a bit stressed, and my favorite, drinking warm tea, in the dead is winter. Itās embarrassing. I canāt go anywhere without having a fan or something to produce cool air along with me. They say you get use to it but itās 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 Iāve learned to appreciate what I donāt have. I still get to watch my babies grow, I have the freedom to come and go, I have air in my lungs, Iām alive. Donāt get me wrong. I donāt 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. Iām 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
Can lupus cause you to pass out after get to hot. I’ve been passing out when I get to warm after just 30 minutes outside. I do have hypothyroidism, and diabetes. Roacea too not sure if it’s lupus just curious if it does .
It would be really hard to say since you don’t have a diagnosis because hypothyroidism and diabetes can both cause those symptoms by themselves. I would consult with a Rheumatologist and bring along a detailed list of your other suspected Lupus symptoms as it can be a complicated diagnosis.
Iām wondering if anyone with lupus has found it common that their facial butterfly rash and heat in the face can be set off by angry or stressed and come on immediately?
I know this is a few months late but ABSOLUTELY! If I get overly angry or very stressed by something, it’s almost like an open invitation for a malar rash and a bad few days at least.
I tend to agree! Happened a lot to me when stressed out! Now I try to keep my routine of meditation and exercise!
Whoās the best doctor to see? Iāve had horrible sweating episodes for at least 3 or 4 years in the daytime. Is lupus sweating in the day mostly? I get warm at night in bed but not sweating. Also after showers is really bad regardless of water temp and major heat intolerance. No Mylar rash though! Do I not have it then? And who is best doctor to see? My labs are all normal.
Monica, I am curious if you had a reply to your question? I have had sweating issues for over 15 years. My whole body sweats, I feel lightheaded, sick to my stomach and get headaches. This happens almost daily,
no matter the temperature outside. I have seen several doctors and they all say I’m fine. I’m very frustrated because something is wrong. I’m embarrassed, don’t want to do anything and then I cry. I need someone to try me what to do, what doctor to see.
I hope you’ve gotten some answers and you’re getting help dealing with your issues. If you have any information, can you please share?
Hi, I would start by taking a list of all your symptoms to your primary care provider. If you have 11 of the 13 major Lupus symptoms they will likely send you to a Rheumatologist to check and verify those symptoms and run very specific blood work to be analyzed by the Rheumatologist. See Lupus.org for the symptoms, but if you don’t feel well to the point of crying, please see your doctor. It could be a hormone imbalance or something they can resolve for you. Best wishes!
Hey, forget about the Malar rash it’s not a deciding factor in whether or not you have an autoimmune disorder. Don’t get frustrated that you might not have Lupus, I get it that leaves you feeling stuck with no answers… Do not do that to yourself. Get your ANA count checked. If you have anti nuclear antibodies you’re definitely autoimmune… But just like with the Malar rash, not having an ANA count doesn’t mean you don’t have a problem. Don’t worry about “do I have this” just worry about keeping your symptoms in check and keep in touch with your doctor.
By itself, sweating and heat intolerance are not indicators of Lupus or a Lupus diagnosis. If your labs are normal, I wouldn’t be too concerned about sweating during the daytime. You would want to visit a Rheumatologist for evaluation and very specific blood work and analysis of that blood work. Usually if your primary doctor sees 11 of the 13 major symptoms they’ll refer you for the blood work and also refer you to the Rheumatologist for analysis and potential diagnosis etc…. You can read the symptoms at Lupus.Org
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. Iām really trying to work from home, but havenāt 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!
I have lupus with adrenal insufficiency due to years of prednisone. I am now steroid dependent. Have an endocrinologist check your adrenal levels. I also suffer from hyperhydrosis of the head, which means only my head sweats! Itās awful. Iāve cut my hair as short as I can and I DO NOT go outside during the heat of the day for any reason. Itās not worth it.
I was stuck on prednisone for 7 years at a very high dose (minimum of 15mg) along with plaquenil, and methotrexate, and one biologic or another. I have no end organ damage except borderline CKD 2. I have SLE, Sjogrenās and Hashimotoās thyroiditis, chronic migraines, and fibromyalgia. My disease presents as malar rash, fatigue, headaches, joint pain and swelling, rashes, heat and light intolerance, and cognitive impairment. I was told that I would never be able to get off prednisone because my adrenal glands were ādead.ā I accepted this until I found another rheumatologist who started me on a medication called ACTHAR (which is an artificial form of ACTH, adrenocorticotropic stimulating hormone) which turned my NOT DEAD adrenals back on and allowed me to titrate my prednisone down to 7mg within 3 months! I am now working on titrating the ACTH down as I slowly bring the prednisone down as low as possible; between 2.5mg and 5mg, while I start Benlysta.
The prednisone was the main culprit in my heat intolerance. The higher my prednisone dose, the worse my heat intolerance and sweating.
Plus prednisone is terrible for you: osteoporosis, diabetes, adrenal suppression, obesity, mood changes, and on and onā¦..
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 extreme sweating on my head. Itās to the point that it looks like I took a shower when I sweat. My pcp told me to talk to my lupus dr. My lupus dr. told me it was menopause. My gynecologist said that it was not menopause and to go back to my lupus dr. Has anyone ever experienced sweating on their head only?itās so embayespecially in the summer.š„ŗ
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
I WAS ADVISED BY DOCTOR IN THE ARMY WHEN I was 22 ..that I could go to Austria .but not Singapore .. because of the heat .
I was given an examination . as I lay on the bed he placed his hand on my
forehead and told .e to raise .y head and press against his hand ..then told me that I could not go to Singapore .
For the last twenty years or more I have had .Lupus ..although my doctor failed to diagnosed it
first sign
not being able to take the heat . .right from my
Army examination ..
I Could not sit near fluorescent lighting .and getting sores on my f
Nose and upper face ..my throat became very dry .and still is .
My doctor treated me for acne .
Eventually a locom told me a doctor at the surgery thought I had lupus
I only have an appointment once a year .at the Rheamatogy clinic once a year .
I am 95yrs so I put it down to the reason is that I do not take the medication .that may seem stupid .but all the written side effects .warn ings about dry mouth..and symptoms ..which I am already having quite badly
Never having a night’s sleep I have Sjogrens .Rheumatoid athetitus Raynards and .more .
I would like to hear of better ways to cope as I cannot go out in the sun .but stay in cool room
With curtains drawn
Thank you for your .comments
No wonder I break out in a severe sweat with just about any activity–washing dishes, sweeping, gardening, tending to my students. Always wondered WHY???????
No wonder I break out in a severe sweat with just about any activity–washing dishes, sweeping, gardening, tending to my students. Always wondered WHY???????
I was diagnosed in March 2017 but was running around from doctor to doctor before I finally get a result that I was free from Lupus SLE. Mine started on top and progressed to the bottom I could walk very little but needed assistance as I have no balance. It is a sadĀ time that we thought this disease has no cure with all the technology we have while there are some formulasĀ there that can reverse all symptoms and get rid of Lupus SLEĀ permanently. Iām passing this info to anyone at there because multivitamincare .org has the right cure and caregiver for this disease ā¦.I took various supplements, medicine prescribed by a neurologist, rheumatologist, and physiotherapy still the disease was progressing very fast until the Lupus SLEĀ formula from that company.