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Lupus and Raynaud’s Syndrome

One of the more common overlapping conditions with some of us living with lupus, is Raynauld’s Phenomenon.  This blog describes the condition, what to look for, and how it can be managed.

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Introduction

Imagine that you are desperately trying to keep warm. You rub your hands together hoping the friction will generate some heat, but nothing. You’re getting so cold you swear icicles could form on your hands. It’s as though you are experiencing frostbite – your fingers are literally turning a weird shade of bluish-white and feel numb. Are you in Minneapolis in February in the middle of a blizzard? Nope. It’s June in Dallas and you’re just sitting in your air-conditioned office, trying to send off a few emails. It’s a balmy 90 degrees outside, but it’s as though the blood has stopped flowing in your body.

You may ask yourself, “What is going on with me? What is this strange phenomenon?”

This experience goes by many names – Raynaud’s (pronounced is Ray-NOHZ, like the word ‘ray’ plus the word ‘nose’) Phenomenon or Raynaud’s Syndrome or Raynaud’s disease. Take your pick, but no matter what you call it, everyone who suffers from Raynaud’s would probably agree that it’s uncomfortable, makes no sense whatsoever, and can be downright scary.

Going forward, we’ll simply refer to this condition as Raynaud’s Phenomenon.

Raynaud’s Phenomenon and its Symptoms

Raynaud’s Phenomenon is the abnormal and extreme narrowing of the small arteries (vasospasm) that supply blood to skin. This limits blood flow to areas of your extremities like fingers and toes. Raynaud’s can occur in response to cold temperatures or even emotional stress. When Raynaud’s Phenomenon occurs separate from any other cause, it’s called Primary Raynaud’s Phenomenon. When it occurs in an individual with lupus or other condition, it is referred to as Secondary Raynaud’s Phenomenon.

Raynaud’s Phenomenon typically occurs in women and those who live in colder climates. However, as mentioned earlier, it can occur at the oddest of times and in the oddest of places that seemingly make no sense (but makes sense to your body). You don’t have to be in the icebox of the North – you can be just walking in an air-conditioned shopping
mall!

Symptoms of Raynaud’s Phenomenon include:

  • Cold fingers, toes, ears, and/or nose … and sometimes might be only ONE finger and/or ONE toe.
  • Changes in the color of fingers, toes, ears, and/or nose – usually blue then white.
  • Numbing or tingling in the affected fingers, toes, ears, and/or nose.
  • Stinging or throbbing pain upon warming or stress relief. Keep handy those little hand warmers that you shake to activate; buy them by the case!
  • Ulcers on the tips of fingers and/or toes.

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What causes Raynaud’s Phenomenon?

Unfortunately, Raynaud’s Phenomenon is not completely understood. Healthcare practitioners, however, agree that it is caused by an overreaction of the blood vessels in the hands and feet when exposed to chilly temperatures.

When Raynaud’s Phenomenon is Primary, there is no direct medical cause. Often a sufferer just puts up with the discomfort and doesn’t even seek medical attention. Sometimes, as mysteriously as it appeared, Raynaud’s Phenomenon can go away within minutes to a few hours – without treatment.

If Raynaud’s is secondary, it can be more acute; harder to ignore, and can be caused or worsened by the following underlying medical conditions:

  • Diseases of the arteries (atherosclerosis).
  • Drugs that can cause narrowing of the arteries (amphetamines, beta-blockers, cancer drugs like chemotherapy compounds, migraine medicine, and even over-the-counter cold medicine.
  • Certain autoimmune conditions (SLE-lupus, scleroderma, Sjögrens, rheumatoid arthritis).
  • Repeated injury.
  • Repetitive action or vibration (often resulting in Carpal Tunnel Syndrome).
  • Smoking.

How is Raynaud’s Phenomenon diagnosed?

Your healthcare practitioner will want to talk with you about your family history, your symptoms, and any other underlying diagnosed illness. They will most likely want to rule out these other medical conditions.

Your healthcare practitioner may still need to determine whether your Raynaud’s is Primary or Secondary. They may conduct a nailfold capillaroscopy. During this test, they will examine the skin at the base of your fingernail to look for deformities or the enlargement of capillaries.

If further testing is needed and your healthcare practitioner suspects your Raynaud’s is Secondary, they will most likely order the following tests:

  • Antinuclear Antibodies (ANA) Test: If antibodies are present, this may be indicative of a stimulated immune system, common in individuals with connective tissue diseases or autoimmune disorders.
  • Erythrocyte Sedimentation Rate (Sed Rate):  If your red blood cells fall to the bottom of a test tube faster than normal, this may be an indicator of inflammatory or autoimmune disease. 

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Treating Raynaud’s Phenomenon

In the case of Primary Raynaud’s Phenomenon, especially in its mild form, an individual experiencing symptoms may find them manageable and not seek treatment. If symptoms are more severe, however, or if Raynaud’s is Secondary, an individual may seek the following treatment options:

  • Calcium Channel Blockers: These are prescription medications that help to dilate or enlarge the blood vessels, thereby increasing circulation to the extremities.
  • Vasodilators: Topical prescription medications like nitroglycerin which relax the walls of the blood vessels can provide relief and heal painful skin ulcers. Other vasodilators that may be prescribed include losartan, sildenafil (Viagra), fluoxetine (Prozac), and prostaglandins.
  • Alpha-1 Blockers: Prescriptions such as doxazosin and prazosin that can counter the effect of the body’s natural norepinephrine and constrict blood vessels.
  • Sympathectomy: This involves nerve surgery where the surgeon makes a small incision and strips away the sympathetic nerve from the blood vessel itself. However, this is not always successful.
  • Chemical Injections:  This involves the injection of chemicals such as local anesthetics, onabotulinumtoxin type A, and Botox that block sympathetic nerve fibers from carrying out vasoconstriction. The effect will wear off, however, and the procedure will need to be repeated.

As with any invasive treatment, it is always good practice to speak in-depth with your healthcare practitioner about your options and even consider talking with others who experience Raynaud’s to discuss what has or hasn’t worked for them.

There are less invasive, complementary treatment options available that may help with symptom relief.  These include:

  • Fish Oil:  Fish oil may improve hot/cold tolerance and slow down the narrowing of blood vessels.
  • Exercise:  Exercise increases circulation, but use caution when taking your workout outdoors in cold weather.
  • Stress Control:  Controlling your stress levels with practices such as biofeedback, cognitive behavioral therapy, meditation, and mindfullness may help you develop more robust coping skills for stressful times and lead to experiencing less stress and less symptomatic Raynaud’s Phenomenon.
  • Acupuncture: This treatment appears to improve blood flow.
  • Magnesium:  This mineral can help blood vessels dilate, allowing blood to flow to fingers and toes.

Before starting any complementary treatments, it’s once again important to speak with your healthcare practitioner to avoid any potentially harmful drug interactions or physical injury.

Preventing or Minimizing Symptoms

There are several things you can do to prevent –  or in the least minimize – symptoms:

  • Stop Smoking: Smoking or inhaling second-hand smoke causes your blood vessels to constrict which in turn causes your body temperature to drop, potentially leading to a Raynaud’s attack.
  • Exercise: Again, exercise not only increases blood circulation and body temperature, but provides great stress relief as well.
  • Stress Control: As mentioned earlier, you’ll not only gain wonderful coping skills for dealing with the emotional and physical stress of Raynaud’s, but whatever else life throws your way as well.
  • Avoid Rapidly Changing Temperatures: It may be tempting to reach into the freezer for that pint of ice cream, but it may be best to ask others to do so for you or wear gloves. Try to avoid moving from the hot outdoors into air conditioning too often.
  • Just Keep Moving: Shake your hands, stick your fingers in your armpits, wiggle your toes, or walk fast. Do whatever it takes to feel a little better. Try not to be embarrassed by your symptoms; instead take control and take action!

In order to take some control over a potential Raynaud’s attack, it’s important to carry things with you that will help ease symptoms. Pack those little hand and toe warmers with you. Carry extra gloves and mittens. It is important to keep your core temperature up, so layer on the sweaters and sweatshirts as necessary in colder weather. Hold a hot beverage or hot water bottle in your hands. Know where there is access to warm water close by so if all else fails (or you forgot your supplies), you can run your hands under a warm faucet – anything to take the edge off of the discomfort. An ounce of prevention may be worth a pound of cure!

Other measures you can take to try to stave off symptoms before you venture out into the cold (or even just chilly) include:

  • Taking a warm shower (never hot – hot water can severely dehydrate skin and cause irritation) before you go out to warm yourself up.
  • Applying your favorite body wash or soap while bathing with exfoliating shower gloves using gentle, circular motions in order to increase blood flow and circulation – it can also be relaxing and feel pampering!
  • Purchasing a steering wheel cover made out of sherpa or some kind of soft, plushy material to use during the cooler months in order to have something warmer to grasp when you have to drive to an appointment, drop the kids off at school or run to the grocery store.

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In Conclusion

Though rarely life-threatening, Raynaud’s phenomenon can be scary. If you suspect you may have it, see your doctor right away and discuss treatment options and symptom management. It’s amazing how a little knowledge and understanding can go a long way. You may actually be able to prevent an attack from occurring as soon as you know what your triggers are and understand your options to stop discomfort in its tracks.

For more updated information on Raynaud’s Syndrome visit these helpful websites:

 

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References

Baumhäkel, M., & Böhm, M. (2010). Recent achievements in the management of Raynaud’s phenomenon. Vascular health and risk management, 6, 207–214. doi:10.2147/vhrm.s5255
Newman, T. (2017). What you need to know about Raynaud’s disease. Retrieved from: https://www.medicalnewstoday.com/articles/176713.php
Raynaud’s Disease – Overview. (2018). Retrieved from: https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571
Questions & Answers about Reynaud’s Phenomenon. [Brochure]. (2012). Bethesda, MD. National Institute of Arthritis and Musculoskeletal and Skin Diseases

 

Author: Karrie Sundbom

Revised in October 2019 by Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.

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