Patient details have been modified to protect privacy.

A Patient Story

Cold extremities in Lyme disease are a common but often misunderstood symptom. A man with Lyme disease described episodes where his hands would become cold and turn pale or bluish, even while sitting indoors. Some days his fingers looked mottled and felt numb; other days they appeared completely normal. Vascular studies and circulation tests were reassuring, yet the symptoms persisted. He noticed the color changes were worse with standing, stress, and fatigue.

Despite normal vascular testing, his symptoms reflected dysregulation of blood flow rather than structural vascular disease.

After treatment for Lyme disease, these symptoms gradually improved. This pattern is frequently seen in patients with Lyme disease and other post-infectious syndromes.

Cold Extremities in Lyme Disease: Autonomic Nervous System and Circulation Changes

Cold, mottled, or discolored hands and feet in Lyme disease are most often related to autonomic nervous system dysfunction, not blocked arteries or primary vascular disease. The autonomic nervous system controls blood vessel tone, skin temperature, and blood flow distribution. When it is disrupted, circulation may constrict or dilate inappropriately.

In Lyme disease, infection and immune activation can interfere with autonomic signaling. Blood vessels may constrict excessively in the hands and feet, leading to coldness, pallor, or bluish discoloration. At other times, uneven dilation can produce a mottled or marbled appearance of the skin.

These changes are functional rather than structural, which helps explain why routine vascular imaging and blood tests are often normal.

How Patients Experience These Changes

Patients often describe hands or feet that feel cold to the touch, appear pale or purple, or change color with temperature, posture, or stress. Symptoms may worsen when standing still, during illness, or after physical or mental exertion. Some notice associated numbness, tingling, lightheadedness, or palpitations, suggesting broader autonomic involvement.

Because these symptoms fluctuate, they can be confusing and distressing, particularly when medical tests fail to provide an explanation. Many patients notice these changes vary throughout the day and may temporarily worsen during illness, dehydration, or periods of poor sleep.

The Lyme-Specific Connection

These color changes are sometimes referred to as acrocyanosis, a term used to describe bluish discoloration of the hands or feet caused by altered blood vessel regulation rather than blocked circulation.

Ongoing immune activation, neuroinflammation, or residual infection can disrupt vascular regulation. In clinical practice, treatment directed at Lyme disease and associated co-infections is sometimes followed by improvement in temperature regulation and skin color changes. Not all patients improve at the same pace, and in some, these symptoms persist as part of a longer post-infectious recovery.

Importantly, the presence of cold or mottled extremities does not necessarily indicate permanent damage. In many cases, it reflects a nervous system that is dysregulated rather than irreversibly injured.

Why Reassurance Alone Isn’t Enough

Being told that circulation tests are normal can feel invalidating when symptoms persist. Cold, discolored extremities are not imagined. They reflect real physiologic changes in how blood flow is regulated.

Understanding the autonomic and post-infectious mechanisms involved helps restore trust, prevents unnecessary testing, and supports more appropriate care.

Frequently Asked Questions

Is this a circulation or heart problem?
Usually not. In most patients with Lyme disease, cold or mottled extremities result from autonomic dysregulation rather than blocked arteries or heart disease.

Is this Raynaud’s phenomenon?
Some symptoms overlap, but Lyme-related changes often fluctuate more broadly and occur alongside other neurologic or autonomic symptoms and may not follow the classic cold-triggered pattern seen in primary Raynaud’s phenomenon

When should I seek further evaluation?
Persistent, worsening, or function-limiting symptoms should be discussed with a clinician, particularly when accompanied by dizziness, fainting, or other neurologic signs.

Can this come and go?
Yes. Autonomic symptoms often fluctuate and may worsen with stress, illness, dehydration, or poor sleep.

Clinical Takeaway

Cold, mottled, or discolored extremities are a common but underrecognized manifestation of Lyme disease. These changes usually reflect autonomic nervous system involvement rather than primary vascular disease. Recognizing this pattern allows for more accurate diagnosis, appropriate treatment, and reassurance grounded in physiology rather than dismissal.

For many patients, recognizing this pattern is the first step toward recovery.

Learn more about how Lyme disease affects autonomic regulation in Autonomic Dysfunction in Lyme Disease.

References

Autonomic Neuroscience Vernino S, Bourne KM, Stiles LE, Grubb BP, Fedorowski A, Stewart JM, et al. Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 NIH expert consensus meeting. 2021;235:102828.

Frontiers in Neurology Adler BL, Vernino S. Dysautonomia following Lyme disease: A key component of post-treatment Lyme disease syndrome? 2024;15:1344862.

Journal of Neuropsychiatry and Clinical Neurosciences Fallon BA, Levin ES, Schweitzer PJ, Hardesty D. Inflammation and central nervous system Lyme disease. 2008;20(2):123–135.

Neurology Oaklander AL, Klein MM. Objective evidence that small-fiber polyneuropathy underlies some chronic pain syndromes. 2013;81(21):1968–1976.

Clinical Autonomic Research Freeman R. Autonomic peripheral neuropathy. 2005;15(1):1–7.