Feeling Hot from Inflammatory Arthritis

As someone with a chronic illness, you know your body better than anyone else, so when you experience a symptom it can be difficult when the doctors don’t have any explanations, treatments, or can’t even validate the symptom’s existence at all.

That’s what we found when we looked into something many patients with all different types of inflammatory arthritis experience: a “hot-all-over” feeling, but without a fever, infection, or other obvious cause.

What the ‘Hot Feeling’ Feels Like

We were first tuned into this symptom by CreakyJoints member Frances D., who has psoriatic arthritis. When she posted about it on Twitter, she got a ton of responses from fellow patients. “I feel hotter than most people constantly,” she told us when we asked her more about it. “Sometimes at night I wake up sweaty with damp sheets. Often at night and sometimes during the day, my feet feel like they are on fire and are burning. My hands are usually warm when everyone else has cold hands. I’ve mentioned it to three rheumatologists, and they didn’t offer any explanation or remedy.”

When we asked about this symptom on Facebook, we got an overwhelming response from the CreakyJoints community. “I will go from fine to feeling like I’m on fire in a matter of seconds. This has been happening for several years, since being diagnosed,” Rene Marie B. told us. “My face and scalp sweat the most and I can be around people who say it’s not hot while I’m dripping sweat. At night I have blankets on and off a million times. I hate it.”

Nearly all the responses echoed similar situations. “Yes, this happens to me every day. My face feels like it’s going to catch fire it’s so hot,” Diana M. shared. “It’s embarrassing when you are out around people and they ask if you are all right. I just feel like I want to sit on a block of ice and everyone else has their coats on. Very frustrating!”

Although some people said the overheated feeling can be worse during a flare, most people reported it happens frequently and not just during a flare. “It seems like feeling hot with psoriatic arthritis is always present,” Frances says.

How Doctors Respond to Patient Reports of Feeling Hot

Despite much agreement among patients about how common and frustrating this symptom is, we had a difficult time finding studies about it or doctors to comment on it. Many patients we heard from expressed that their doctors ignored them as well.

“Isn’t it about time rheumatologists acknowledge that heat intolerance, ‘thermostat’ issues, and excessive sweating are part of the disease?” Heather W. asked on Facebook.

We consulted CreakyJoints medical advisor Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida, to see if he’s heard this complaint from patients. “We do hear this a lot but we don’t have a really good scientific explanation for it — that’s really the problem,” he says. “Regardless of doctors not being able to explain, don’t feel like that this is something that we’re minimizing; it is just that we don’t have a good explanation yet.”

So, What Causes the Overheated Feeling?

The short answer: no one knows for sure. To our knowledge, there are no studies that have researched this specifically. One study that looked into patient perceptions of flares noted one participant who reported, “when I have a flare and there’s a lot of pain I have a feeling that I’m burning up … my whole body is hot … I feel as though I’ve got a very high temperature.”

“We don’t know yet if there’s any kind of connection between my body temperature dysregulation and autoimmune disease,” Dr. Domingues says. Because it is a subjective feeling, he explains, it can be hard for doctors to observe and for researchers to quantify in studies.

What could be done, though, is study fluctuations in actual body temperature. “One of the things we think about is if the inflammatory cytokines such as TNF alpha are upregulated [increased], then that may drive a little bit more of the heat on the body,” he says. (Cytokines are immune system proteins that are elevated when you have inflammation from arthritis.) “This seems to be much more prominent in the joints [which is why your joints may feel hot during a flare] but because inflammatory arthritis is a systemic illness, you can also see it in other soft tissues.”

But, he adds, “I don’t think any study has been done to measure temperature in patients to see if there’s a difference but still in the normality of range — say, from 97 to 98.5 — in rheumatoid arthritis patients. Maybe it’s that their temperature may be a little more elevated than normal but they’re still not febrile [having a fever],” Dr. Domingues says. “We don’t really have good studies on that.”

Other Possible Explanations for Feeling Hot with Arthritis

A couple people we heard from on Facebook noted that in addition to inflammatory arthritis, they also have something called “autonomic dysfunction.” This occurs when the body isn’t properly managing the autonomic nervous system (ANS), which controls subconscious functions like breathing and — surprise — body temperature. The Cleveland Clinic lists autoimmune conditions like rheumatoid arthritis as a secondary cause of autonomic dysfunction; one journal paper even suggests that the autonomic dysfunction may precede RA.

But this still doesn’t answer the question of why.

Another study suggested that inflammation from rheumatoid arthritis may affect the brain, although that research looked more specifically at the development of cognitive dysfunction and fatigue. But, “through the field of psycho-neuroimmunology, we now understand that immune cells do reside in the brain as well as the rest of the body, so all of these systems are connected,” says Hillary Norton, MD, a rheumatologist in Santa Fe, New Mexico.

Since the brain plays a key role in regulating body temperature, perhaps if inflammatory conditions like arthritis affect brain function, it could help explain the link between inflammatory arthritis and body temperature fluctuation. But this is all still theoretical and more research is needed.

The Fever Connection

Frequent fevers can be a problem in people with inflammatory arthritis. “Low grade fever in rheumatic diseases is well documented. The cytokines IL-1, IL-6, and TNF are pyrogenic [heat causing], which means they interact with the hypothalamic centers [areas of the brain] for control of body temperature,” says Dr. Norton. “It makes sense that in a disease where there are excess levels of these cytokines, fevers can occur, particularly during flares. I hear this from my patients, but less is known about the phenomenon of feeling hot all the time. I have not been able to find anything in the literature about this.”

As Dr. Norton notes, a fever is not necessarily what patients are talking about with this “overheated” feeling. “Sometimes I feel like I have a fever and check my temperature but I never have a temp,” Frances told us.

However, if you’re feeling hot you should always take your temperature to make sure you don’t have a fever, which could indicate an infection, Dr. Domingues says.

The Menopause Connection

This overheated feeling can be made worse for women going through menopause, which is common around the time many are diagnosed with inflammatory arthritis like rheumatoid arthritis and psoriatic arthritis. “There is a connection with the neuroendrocrine system and the immune system, so it makes sense that peri-menopause and menopause can aggravate the elevated body temperature,” says Dr. Norton.

But this “hot” symptom might be too easily dismissed as a hormonal hot flash. And men in the CreakyJoints community reported feeling hot too. Larry K. shared that “I mainly get [the hot feeling] in my feet but occasionally all over” and Larry B. wrote that he gets “occasional night sweats also. Could be a flare of PsA or lupus, as I have both.”

Other patients with the symptom told us on Facebook told us they had already been through menopause or hadn’t gone through it yet. “I’m past menopause and often have periods of extreme heat and sweating, even when it’s freezing,” Deborah M. said. Many reported that hormone tests (as well as thyroid and other likely culprits) were normal.

“A host of my patients who have that [symptom] are also menopausal, so a lot of times we think, ‘Maybe this is hot flashes,’” Dr. Domingues says. “But it’s just much more common in inflammatory arthritis patients, so it’s really hard to say, to be very honest.”

How to Cope with Feeling Overheated

Despite a lack of explanation about what causes this overheated symptom, what can you do about it? Here are some tips.

Layer your clothing

“I wear sleeveless or short-sleeved tops in the winter, and wear cropped pants,” Frances says. “In the winter, I often wear shoes without socks to keep my feet cool.”

Keep your spaces cool

“I’ll drive in my car without the heat or wearing a coat in 40-degree weather, and I’ll keep my house temp at 67 degrees,” Frances says. You can also keep your windows cracked.

Use cold water or ice

“This is that grandmotherly advice of putting a wet towel on your head,” Dr. Domingues says. You can also take cool showers. “I have to shower before bed to lower my core temp, and I always have the fan on in the room,” Katharine S. said on Facebook. Frances also says she puts a large malleable ice pack on parts of her body to cool down.

Eat and drink cold stuff

Think ice water or popsicles.

Soak your feet

“I ice or soak my feet in ice water to reduce the hot and burning feeling,” Frances says. “I also ice my feet at work sometimes — thank goodness I’m in an office area with only four others!”

Wear a hat

Although you think it might make you hotter, a couple of CreakyJoints members recommended it for readjusting your body. “I use a hat indoors to help regulate my temp,” Veronica G. says.

Try to stay calm

Some patients mentioned that the hot feeling got worse if they were stressed. “Use deep breathing exercises help to cool down when you feel overheated,” Dr. Norton suggests.

Take a break

“I advise patients to step outside for fresh air if it is cool outside,” Dr. Norton says.

Remember: You’re Not Alone

Most importantly, remember that you’re not the only one going through this. “You’re not alone, so don’t feel like you’re the only one with that feeling — it’s just the doctors who haven’t figured it out yet,” Dr. Domingues says, noting that it’s important for you to share any strange symptoms with your doctor.

Even if there’s not a good biological explanation for it — yet — your doctors, nurses, and other members of the health care team need to know how you feel and can help provide advice and support for coping, especially based on what they hear from their patients as a whole.

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Keep Reading

Autonomic Neuropathy or Autonomic Dysfunction (Syncope): Information and Instructions. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/15631-autonomic-neuropathy-or-autonomic-dysfunction-syncope-information-and-instructions.

Bonaz B. Autonomic Dysfunction: A Predictive Factor of Risk to Develop Rheumatoid Arthritis? EBioMedicine. March 2016. doi: https://doi.org/10.1016/j.ebiom.2016.03.005

Hewlett S. ‘I’m hurting, I want to kill myself’: rheumatoid arthritis flare is more than a high joint count—an international patient perspective on flare where medical help is sought. Rheumatology. January 2012. doi: https://doi.org/10.1093/rheumatology/keq455.

Interview with Hillary Norton, MD, a rheumatologist in Santa Fe, New Mexico

Interview with Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida and assistant professor of medicine at Florida State University College of Medicine

Schrepf A, et al. A multi-modal MRI study of the central response to inflammation in rheumatoid arthritis. Nature Communications. June 2018. doi: https://doi.org/10.1038/s41467-018-04648-0.