Myositis is sometimes accompanied by other conditions, one of those being Raynaud’s Phenomenon (alternately called a disease or syndrome). When Raynaud’s is present in patients with another underlying condition, it is considered “Secondary Raynaud’s,” while others without any other underlying condition can experience “Primary Raynaud’s.”
People with Raynaud’s may have extreme reactions in their hands, fingertips, nose, toes, and ears when a spasm of the blood vessels in these areas occur. Sometimes the cause is exposure to cold temperatures or even stress.
People with Raynaud’s experience numbness, tingling, prickling, and/or painful sensations along with color changes of the skin. This is due to constricting blood vessels (thought to be overactive nerves) that keep the blood from reaching those parts of the body.
Left unaddressed, Raynaud’s can lead to problems with circulation and skin ulcers, some of which can lead to gangrene. Many people with Raynaud’s are able to use self-care strategies to help alleviate the symptoms.
Protection from the cold
- Dress warm, with layers, in the cold weather and wear a hat, gloves, insulated boots, thick warm socks, ear muffs and/or a face mask that covers the nose and ears.
- Consider using hand warmers and toe heaters that can be inserted into socks and gloves.
- When inside in air conditioning with temperature setting not in your control, consider having warm clothes and other accessories with you.
- Wear gloves before handling cold/frozen items.
- When handling cold drinks, consider using an insulated mug.
- No smoking.
- Practice better stress management.
- Exercise and other physical activity can help keep blood flowing and keep you warm.
- Avoid tight/constricting jewelry.
- Avoid caffeine and other vasoconstrictor’s.
Secondary Raynaud’s, which is often the case with myositis, can also be treated with lifestyle changes, but it often requires a little more advanced medical treatment, including the use of medication.
“If lifestyle modifications do not work, medications that improve blood flow to the toes and fingers (e.g., calcium channel blockers, prescription skin creams) can often do the trick,” says Dr. Barry (Penn Medicine).
For more severe cases, which lead to tissue damage, there are medical interventions in the form of medications, surgery to sever nerves, and botox injections. These are serious decisions and should be discussed at length with your doctor, weighing out the risks of complications versus the possible benefits.
As with all complications of myositis, if you suspect you may have Raynaud’s please consult your doctor immediately. Accurate testing and early diagnosis is key to proper management of this and all components of autoimmune diseases.
“Simply Put” is a service of Myositis Support and Understanding, to provide overviews of Myositis-related medical and scientific information in understandable language.
MSU volunteers, who have no medical background, read and analyze often-complicated medical information and present it in more simplified terms so that readers have a starting point for further investigation and consultation with healthcare providers. The information provided is not meant to be medical advice of any type.
Information for this page was gathered from the following sources: