Scleroderma, lupus and cold: living well in cold weather
Cold sensitivity is one of the most common experiences in scleroderma and lupus, mostly through secondary Raynaud's. Nearly 90% of people with scleroderma have Raynaud's symptoms, and it affects up to one-third of people with lupus. Living well in the cold means warming the whole body, protecting fragile skin, avoiding sudden temperature changes and reporting sores early to your care team.
Why do scleroderma and lupus cause cold hands?
Both are autoimmune conditions that can affect small blood vessels. The result is often secondary Raynaud's: episodes in which fingers and toes narrow their blood supply in the cold or under stress, turning pale or white, then blue and red as they rewarm.
The Scleroderma Research Foundation reports that nearly 90% of people with scleroderma have Raynaud's symptoms. The Lupus Foundation of America says Raynaud's occurs in up to one-third of people with lupus. For many people, Raynaud's is the first sign that leads to a diagnosis.
What is scleroderma?
NIAMS describes two main types. Localized scleroderma affects only the skin and the structures directly under it. Systemic scleroderma affects many systems in the body and is the more serious type; it is further divided into limited and diffuse forms.
Scleroderma is more common in women and usually appears between the ages of 30 and 50, according to NIAMS. There is no cure, so care focuses on managing symptoms and slowing progression, and staying warm is part of daily management.
Why is secondary Raynaud's more serious?
In autoimmune disease, the blood vessels themselves may be affected, not just overreacting. The Hospital for Special Surgery notes that secondary Raynaud's is more likely to be associated with complications such as ulcers on the fingers, and advises seeing a doctor for ulcerations of the fingertips or toes.
Skin in scleroderma can also be tight and dry, which makes small cracks more likely. That is why skin care and warmth go together.
How can you stay warm with scleroderma or lupus?
Practical advice from NIAMS, the Scleroderma Research Foundation and the Lupus Foundation of America overlaps closely.
Keep your entire body warm, not just your hands and feet, and always bring extra layers.
Wear mittens rather than gloves, plus warm socks, once the temperature drops below about 65 degrees Fahrenheit, as the Scleroderma Research Foundation suggests.
Avoid sudden temperature changes, especially moving from warm air into air conditioning.
Use gloves to handle frozen food and avoid holding cold drinks.
Use chemical or battery-operated hand and foot warmers, keeping them off bare skin.
Warm your bed with an electric blanket, hot water bottle or flannel sheets, and consider a space heater in the bathroom or at your desk.
At the first sign of an episode, warm your hands or feet gently, for example in warm water.
How should you care for your skin in the cold?
NIAMS recommends moisturizers to help lessen skin stiffness, keeping indoor air humid, and wearing rubber gloves when using household cleaning products. Sunscreen outdoors protects skin from further sun damage.
Check your fingers and toes regularly, especially after cold exposure. Small cuts heal more slowly when blood supply is reduced, so keep them clean and covered and mention any that linger.
What else helps in cold weather?
NIAMS notes that regular exercise, especially swimming, stimulates blood circulation to affected areas; choose a heated pool in cold months. Stress is a Raynaud's trigger, so relaxation techniques are practical tools, not extras.
The Lupus Foundation of America advises avoiding decongestant medicines, smoking and vibrating tools. NIAMS also encourages connecting with support groups and talking to a mental health professional about coping with a chronic illness.
How can you plan for cold days away from home?
Many episodes happen in transit or in other people's buildings, where you cannot control the thermostat. A small cold-weather kit reduces the guesswork.
The Scleroderma Research Foundation suggests a space heater at the office; if you work outside the home, it is reasonable to ask your employer about a warmer desk location or a personal heater.
A spare pair of mittens and thin liner gloves in your bag or car.
Air-activated or rechargeable warmers, plus a pouch so they do not sit against skin.
An extra warm layer for the torso, such as a vest, for stores and offices with strong air conditioning.
An insulated cup sleeve so cold drinks never touch your fingers directly.
Moisturizer for hands, since cold, dry air can crack fragile skin.
When should you contact your care team?
Talk to your rheumatologist or clinician about any change in your Raynaud's pattern. Seek prompt care for these red flags.
A sore, ulcer, crack or dark spot on a fingertip or toe.
Color that stays white, blue or black after warming.
Redness, warmth, swelling or pus around a sore, which can signal infection.
Episodes that are longer, more painful or more frequent than usual.
Key takeaways
Nearly 90% of people with scleroderma and up to one-third of people with lupus have Raynaud's.
Secondary Raynaud's is more likely to cause finger ulcers, so early reporting matters.
Warm the whole body, avoid sudden temperature changes and keep gloves where cold exposure happens.
Moisturizing, protective gloves and regular skin checks protect fragile skin.
Contact your care team promptly about sores, persistent color change or signs of infection.
Frequently asked questions
Does lupus cause cold hands and feet?
It can. Raynaud's occurs in up to one-third of people with lupus, according to the Lupus Foundation of America, causing cold, pale or blue fingers and toes during cold or stress.
Why am I always cold with scleroderma?
Most people with scleroderma have Raynaud's, which limits blood flow to the fingers and toes in the cold. Keeping the whole body warm, including the core, is the most consistent practical advice.
What is the difference between Raynaud's and scleroderma?
Raynaud's is a pattern of blood vessel narrowing in the cold that can occur alone or with other conditions. Scleroderma is an autoimmune disease that often includes Raynaud's, along with skin thickening and effects on other organs.
Can I use heated gloves with scleroderma?
Many people do. The Scleroderma Research Foundation lists battery-operated warmers among its tips. Use low settings, keep a layer between heat and skin, and ask your care team if you have sores or reduced sensation.
Is swimming good for scleroderma in winter?
NIAMS notes that exercise, especially swimming, stimulates circulation to affected areas. A heated pool avoids cold exposure.
Related reading
Sources
Raynaud's Phenomenon: Complications and Treatments, Scleroderma Research Foundation
About Raynaud's Disease, Lupus Foundation of America, Lone Star Chapter
Scleroderma, NIAMS, NIH
Scleroderma: Diagnosis, Treatment, and Steps to Take, NIAMS, NIH
Raynaud's Phenomenon and Raynaud's Syndrome, Hospital for Special Surgery
About HEATJAC. HEATJAC is a thermal architecture company founded by an anesthesiologist. We design patented garment systems that capture, conduct and broaden warmth across the body, and we publish this knowledge hub because the science of staying warm should be public. HEATJAC products are not medical devices and are not intended to diagnose, treat, cure or prevent any disease.