Temperature Sensitivity in Fibromyalgia and ME/CFS

When you're exposed to heat, does it feel like you're burning up? Does it seem impossible for you to cool off? Or maybe it's cold that bothers you, chilling you to the bone, leaving you unable to warm up.

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Are you one of those people with fibromyalgia (FMS) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) who is cold all the time, or hot all the time, or alternately hot or cold while out of sync with the environment?

If any of those scenarios sound familiar to you, you may have a symptom called temperature sensitivity. Experts don't yet know exactly what causes this symptom, but they've done some compelling research.

Much of it suggests abnormalities in the autonomic nervous system, which deals with homeostasis (your body's ability to keep the temperature and other factors within normal ranges) and our bodies' reactions to different situations, including the "fight or flight" reaction.

With that established, researchers are now able to look deeper into that system to figure out what exactly is going wrong, and they're finding some interesting things.

Temperature Sensitivity in Fibromyalgia

In addition to a decreased body temperature, research shows that people with FMS have trouble adapting to temperature changes and have a reduced pain threshold to both heat and cold stimuli—meaning it takes less extreme temperatures to make you feel pain.

For example, sunlight shining through a car window onto your arm may cause burning pain in you but only mild discomfort in someone else.

A groundbreaking study published in Pain Medicine suggests a reason for our temperature sensitivity, and it's one based on a series of discoveries.

The first step involved people who may be the exact opposite of people with FMS—those who can't feel pain at all. It's a rare condition that they're born with.

Healthcare providers observed that these people can feel temperature, which was confusing. Why would the same nerves that could feel one type of stimuli (temperature) not be able to feel another (pain)?

That question led to a discovery: They're not the same nerves at all. In fact, we have an entirely separate system of nerves that senses temperature. These nerves are on our blood vessels, and scientists used to think they just dealt with blood flow.

So, it turns out that these special nerves don't just adjust blood flow, they detect temperature. They then became a logical target for FMS research, since we're known to have both blood flow abnormalities and temperature sensitivity.

Sure enough, researchers found that FMS participants in their study had extra temperature-sensing nerves along special skin blood vessels called AV shunts. They're in your hands, feet, and face.

The job of AV shunts is to adjust blood flow in response to temperature changes. You know how when it's really cold , you get rosy cheeks and red, puffy fingers? That's because the AV shunts are letting in more blood, trying to keep your extremities warm.

This is the first study looking at how this system is involved in our illness, so we can't say for sure whether it's accurate. However, it is an interesting direction for more research and an explanation that appears to make a lot of sense.

AV shuts may even play a causal role in this condition.

If your abnormally cold hand or feet change color, you may be experiencing a more serious issue called Raynaud's syndrome. In some cases, Raynaud's can cause tissue damage or other complications. If you experience this symptom, take extra steps to stay warm and talk to your healthcare provider

about it.

Temperature Sensitivity in ME/CFS

We don't have a lot of research on this symptom in ME/CFS so far, but we have learned a little about it. One interesting study involved identical twins. In each set of twins, one sibling had ME/CFS and the other did not.

Researchers found that the ones with ME/CFS did have different responses to cold than their healthy siblings when it came to both pain tolerance (how much pain they could handle) and pain threshold (the point at which the cold became painful).

A study published in Pain revealed something about a process called pain inhibition. In a healthy person, the brain takes steps to lessen the pain that's anticipated (like when a nurse gives you a shot) or pain that's repeated (like walking on a pebble in your shoe).

In ME/CFS, though, researchers found that the inhibition process was slower to respond to cold stimulation. They believe this could play a role in the chronic, widespread pain in this disease but point out that more research is needed to confirm this.

A study looking at adolescents with ME/CFS may have uncovered some important information about homeostasis. Researchers found that when a hand was exposed to cold, the kids with ME/CFS had significantly more shivering and sudden changes in skin color than their healthy counterparts.

Blood flow to the hand also reacted differently in the control group and illness group. Body temperatures dropped more among the ME/CFS participants, as well.

So, this symptom is established in the medical literature and we have some early findings that more research can be based upon.

A Word From Verywell

So far, we don't have treatments aimed specifically at this symptom. However, there's a lot we can do in our daily lives to help alleviate it. There are ways to deal with cold and heat sensitivity.

Also, talk to your healthcare provider about this symptom. It may help them draw conclusions about what's going on in your body and what might help you feel better.

8 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Larson AA, Pardo JV, Pasley JD. Review of overlap between thermoregulation and pain modulation in fibromyalgia. Clin J Pain. 2014;30(6):544-555. doi:10.1097/AJP.0b013e3182a0e383

  2. Chu L, Valencia IJ, Garvert DW, Montoya JG. Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front Pediatr. 2019;7:12. doi:10.3389/fped.2019.00012

  3. Cheshire WP Jr. Thermoregulatory disorders and illness related to heat and cold stress. Auton Neurosci. 2016;196:91-104. doi:10.1016/j.autneu.2016.01.001

  4. Clauw DJ, Arnold LM, McCarberg BH, FibroCollaborative. The science of fibromyalgia. Mayo Clin Proc. 2011;86(9):907-911. doi:10.4065/mcp.2011.0206

  5. Albrecht PJ, Hou Q, Argoff CE, Storey JR, Wymer JP, Rice FL. Excessive peptidergic sensory innervation of cutaneous arteriole-venule shunts (AVS) in the palmar glabrous skin of fibromyalgia patients: implications for widespread deep tissue pain and fatigue. Pain Med. 2013;14(6):895-915. doi:10.1111/pme.12139

  6. Ullrich PM, Afari N, Jacobsen C, Goldberg J, Buchwald D. Cold pressor pain sensitivity in monozygotic twins discordant for chronic fatigue syndrome. Pain Med. 2007;8(3):216-22. doi:10.1111/j.1526-4637.2006.00277.x

  7. Meeus M, Nijs J, Van de Wauwer N, Toeback L, Truijen S. Diffuse noxious inhibitory control is delayed in chronic fatigue syndrome: an experimental study. Pain. 2008;139(2):439-48. doi:10.1016/j.pain.2008.05.018

  8. Wyller VB, Godang K, Mørkrid L, Saul JP, Thaulow E, Walløe L. Abnormal thermoregulatory responses in adolescents with chronic fatigue syndrome: relation to clinical symptoms. Pediatrics. 2007;120(1):e129-37. doi:10.1542/peds.2006-2759

Additional Reading

By Adrienne Dellwo
Adrienne Dellwo is an experienced journalist who was diagnosed with fibromyalgia and has written extensively on the topic.