What to Do When Medication Doesn’t Work for Your Severe Raynaud’s

Cold weather is annoying for many people, but if you have Raynaud’s phenomenon, it can be downright painful.

Raynaud’s causes tiny blood vessels in the fingers, toes, ears or nose to constrict during exposure to cold weather, emotional stress or other triggers. This reduces blood supply to those areas, which makes them turn white or blue. Once blood flow resumes, they may turn red and become extremely painful.

For most people, Raynaud’s requires a little extra attention to keeping your hands and feet warm and dry. But for a small fraction of people, it becomes severe enough to cause ulcers or tissue injury.

“If there is such low blood flow to the tissue that it doesn’t get the necessary metabolites it needs to survive, some people can get gangrene, or some of the tissue on the fingertips and toes can even die,” says Robert Bolash, MD, a pain management specialist who treats people with severe Raynaud’s.

Why some people get Raynaud’s

For most people who experience Raynaud’s, attacks can be painful, but they generally pass quickly and don’t cause long-term problems. This is called primary Raynaud’s. It’s often seen in younger women — though it isn’t exactly clear why, says vascular medicine specialist Meghann McCarthy, DO.

But sometimes the blood vessel problems that cause Raynaud’s are the result of an underlying autoimmune condition – like scleroderma, connective tissue disease or lupus — or use of certain medications. This is called secondary Raynaud’s.

“More severe symptoms such as ulcers and skin sores are very rare with primary Raynaud’s but may be seen with secondary Raynaud’s,” Dr. McCarthy says.

Different options for Raynaud’s treatment

The first line of defense against Raynaud’s is keeping your hands and feet warm and dry, and avoiding common triggers such as cold temperatures, smoke exposure, excessive caffeine and stress, Dr. McCarthy says.

But if your attacks become more frequent or severe, your doctor may want investigate whether there is an underlying condition causing Raynaud’s. This may involve some blood work or a referral to a rheumatologist.

If you need treatment for your Raynaud’s symptoms, your physician may refer you to someone who specializes in vascular medicine.

“The goal of treatment is to eliminate pain and prevent complications,” Dr. McCarthy explains.

There are several different medications that can be taken orally or applied to the skin to help open your narrowed blood vessels. You may hear your doctor call them calcium channel blockers, phosphodiesterase inhibitors or topical nitrates.

Still in pain?

While most people with Raynaud’s are able to tolerate their symptoms with the help of some lifestyle adjustments or medication, each person’s case is unique. If your severe symptoms don’t respond, or if you don’t tolerate traditional treatment with medication, a pain medicine specialist may be able to offer some additional options.

“We sometimes become involved with these patients when they’ve exhausted or failed to respond to some of the other types of treatments available,” Dr. Bolash says. “Our techniques sometimes can help people avoid something that’s irreversible, like amputation of a digit or foot.”

Potential options include:

• Sympathetic nerve blocks. During this procedure, a doctor injects an anesthetic drug onto a portion of the sympathetic nervous system, which controls the way blood vessels open or close. “This tricks the body into opening up the blood vessels and facilitates blood flow into certain tissues,” Dr. Bolash says. The relief from nerve block injections is likely temporary, but for some people it can offer benefit with lower risk than having a surgical treatment.
• Botox®. Some studies have found that Botox may work for a longer period of time than a nerve block, Dr. Bolash says. But this treatment is experimental and has not yet been extensively studied yet in people with Raynaud’s.
• Surgical sympathectomy. During this procedure, a surgeon cuts through a group of sympathetic nerves to prevent nerve signals from passing through. This procedure is not always effective in the long term, but it could be an option to spare amputation.
• Spinal cord stimulation.  This treatment, which is used for a number of other pain conditions, delivers electricity onto specific nerve areas using a device that’s implanted near the spine, Dr. Bolash explains. This probably acts by altering the activity of the sympathetic nervous system to keep blood vessels open and allow more blood flow to the affected areas. An external controller allows you to turn the device on, off, up or down.

“The exact efficacy of these treatments is still an area which deserves greater study — they’re not 100% effective for all patients,” Dr. Bolash concludes. “But when we think about the end-stage patient who has few other options and is considering something more drastic like an amputation, these would be things we might recommending trying first.”