Raynaud’s (ray-NODES) is a disorder of the small blood vessels of the
extremities, reducing blood flow. When exposed to cold, the blood vessels go
into spasms, which may cause pain, numbness, throbbing and tingling. Emotional
distress may also trigger such a response.
The fingers are usually the primary affected areas, although toes, nose, ears
and other extremities may be involved. In a typical case, fingers turn from
white or blue (or both) within minutes of cold exposure then become red when
they warm up. These color changes, which may vary from person to person, are
an exaggeration of a normal response to cold exposure. A normal cold response
in the hands is a blotchy red and white pattern. Raynaud’s-type color
changes are distinctively different.
The disorder has been called Raynaud’s “phenomenon,” “syndrome”
or “disease.” Although physicians have used these terms to identify
different types, today the words are used interchangeably. There are, however,
two major kinds of Raynaud’s that are important to recognize:
Primary Raynaud’s, the most common type, is not linked
to another underlying medical condition or disease. There is no apparent cause
for the phenomenon to occur. Primary Raynaud’s is not usually “disabling”
in the typical sense, but sufferers can experience great discomfort and pain
– requiring lifestyle adjustments to minimize exposure to cold and stress.
Secondary Raynaud’s is the term used when Raynaud’s
is associated with another medical condition or disease, often of a rheumatic
nature such as scleroderma (also known as systemic sclerosis) or systemic lupus
erythematosus. Often, Raynaud’s symptoms are the first sign that such
an underlying connective tissue disease exists. Patients with the secondary
form are more likely to suffer more serious problems from Raynaud’s, such
as skin ulcers (which can cause serious long-term damage to the blood vessels),
or even gangrene.
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The form is determined by a careful examination from your physician, who looks
for signs of an underlying disease (for example, thickened skin in scleroderma,
or sun-sensitive skin rashes in lupus). A blood test known as the ANA (antinuclear
antibody test) is usually done. If the workup is negative for symptoms of other
diseases, and the ANA is negative, it is likely that the Raynaud’s is
primary. However, it may take years for other disease signs to develop, so your
physician may want to follow you for a few years before assuring you that nothing
else is likely to happen.
A positive ANA is only a marker for the presence of an underlying connective
tissue disease. However, some people have a positive ANA for many years, but
never develop any symptoms of scleroderma, lupus or another rheumatic disease.
These individuals probably would be assumed to have primary Raynaud’s.
In most of these cases, the patient is said to have an “undifferentiated
connective tissue disease.” Other than watching the patient closely for
signs of another disorder, the treatment is virtually the same as for primary
Raynaud’s.
As common as Raynaud’s is in the general population, fortunately only
a small percentage of people with Raynaud’s are classified as having the
secondary Raynaud’s form.
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Dr. Maurice Raynaud was a French physician who published a report in 1862 of a young woman whose fingertips changed colors when she was cold or under stress. He is credited with the discovery of the condition.
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Raynaud’s is very prevalent, affecting as much as 5-10 percent of the
population. Fortunately, some 90 percent of these are classified as Primary
Raynaud’s patients. The overwhelming majority of Raynaud’s patients
are women, for reasons not yet clearly understood.
For such a widespread condition, awareness is very limited. Only 1 in 5 sufferers
will become aware their discomfort is medically related and actively seek treatment.
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Researchers haven’t determined a specific genetic link for Raynaud’s,
although in many families, more than one member has the condition. Usually,
however, it is the more benign “Primary Raynaud’s.”
As a true genetic factor has not been clinically proven, it is uncertain as
to whether or not family connections are based on increased awareness of the
condition among relatives or true heredity.
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For many people, symptoms are mild and not particularly troublesome. They may
think they are merely “cold-sensitive” or have “poor circulation.” These individuals
often don’t seek medical attention, or may not consider it noteworthy to mention
to their physicians.
Often, people with Raynaud’s symptoms don’t seek medical attention until they
experience painful attacks and/or develop fingertip sores or ulcerations that
don’t heal after weeks or months.
The Raynaud’s Association was created primarily to raise awareness of this
disorder: to help people identify their condition and to seek medical intervention
to determine whether or not an underlying -- potentially serious -- medical
condition exists. In addition, the mission of the Raynaud’s Association is to
provide support, resources and credible information to Raynaud’s sufferers.
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Doctors often make the diagnosis based on the patient’s description of
the color changes that occur suddenly after being exposed to cold temperatures.
Sometimes doctors immerse the patient’s hand in ice water to provoke an
episode. However, this test doesn’t always work because usually the whole
body needs to be exposed to cold before an attack occurs.
There is no single blood test that identifies Raynaud’s. However, doctors
might order bloodwork to rule out the presence of auto-antibodies associated
with scleroderma, lupus, mixed connective tissue disease, undifferentiated connective
tissue disease, Sjogren’s syndrome, and other diseases that have Raynaud’s
as a possible component.
Some specialists (usually rheumatologists) perform a nailfold capillaroscopy,
a simple microscopic examination of the small blood vessels at the base of the
fingernail. This test is used also to look for the presence of an underlying
connective tissue disorder.
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It’s possible. Sometimes the onset of Raynaud’s occurs months or years before a secondary, connective tissue disease presents itself. That’s why it’s important to have regular medical checkups. Again, the chance that Raynaud’s symptoms indicate a serious disease is low.
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Rheumatologists are the most knowledgeable specialists about Raynaud’s
because they regularly treat people with the connective tissue diseases most
closely associated with the condition (such as lupus, scleroderma and rheumatoid
arthritis). Keep in mind that only a fraction of Raynaud’s sufferers have
one of these diseases, but – as an overwhelming number of these autoimmune
patients also have Raynaud’s – rheumatologists see Raynaud’s
more often than most doctors. They therefore have a better understanding of
the problems patients face and how best to treat them.
Patients usually are referred to rheumatologists once their general physicians
(internists, family doctors, general practitioners, etc.) determine there is
probable cause to suspect Raynaud’s. Another excellent referral source
is the American College of Rheumatology,
whose website provides names of qualified specialists within specific geographic
areas.
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Although we know many of the common triggers that create Raynaud’s episodes
in individuals, the basic cause of Raynaud’s in most cases is still a
mystery. However, there has been a link established between Raynaud’s
and some autoimmune diseases (although it must be emphasized that the vast majority
of Raynaud’s patients do not have those diseases). Raynaud’s may
precede such diseases by years.
Raynaud’s also may signal damage to the blood vessels caused by occupational
injuries (from using jackhammers, for example), trauma, excessive smoking, circulatory
problems, drug use or exposure to certain chemicals and toxic substances.
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Raynaud’s is seen in all population groups. We do know that women are affected nine times more than men. Men and children – even babies – also get Raynaud’s. When it occurs in teenagers (mostly female), they tend to develop Raynaud’s around the time of puberty. Often, the symptoms disappear when the individuals are in their twenties.
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Until the cause is found, a cure will remain elusive. Various treatments, however, work to control the severity and frequency of Raynaud’s episodes.
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If you have Raynaud’s symptoms, a doctor can confirm the diagnosis and
rule out any underlying medical causes that require treatment. Raynaud’s
lesions (or ulcers, as they are often called) can do permanent damage to blood
vessels. Proper treatment is required to help them heal.
Doctors also can provide information to help minimize the frequency and severity
of Raynaud’s episodes.
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Most experts agree the best way to handle Raynaud’s is to avoid cold
temperatures and stress. Such avoidance measures, obviously, are not always
practical.
To date, there is no medication that eliminates Raynaud’s attacks, but
there are some medications that decrease their severity or frequency. The standard
medication offered severe Raynaud’s sufferers is in the family of calcium
channel blockers. These drugs work to open up or dilate the blood vessels so
the blood circulates more freely. They are the same medications given to people
with high blood pressure. Topical antibiotics or nitroglycerin paste or patches
may be prescribed to protect against infected skin ulcers. If your blood pressure
is already low, you may not be a candidate for some of these treatments. Some
of these medications can cause side effects such as ankle swelling, light-headedness
and headaches. As different brands and generic forms of these drugs are available,
work closely with your doctor to determine what is feasible and effective works
best for your body. Should you choose to go on medication, be aware it does
take time to see results.
Self-help, relaxation techniques, such as biofeedback and tai chi, work for
some people to minimize the severity of Raynaud’s attacks. These methods
require a great deal of practice and commitment to achieve real results. They
won’t be effective for everyone, particularly for more severe Secondary
Raynaud’s sufferers.
Tai Chi is a Chinese martial art that generates a strong flow of internal energy
(chi) throughout the body. Being aware of this internal energy allows one to
direct more heat to the body extremities. The practice of Tai Chi can help to
calm the mind, relax the body and improve your health.
A regular exercise regimen helps to increase blood supply to body tissues.
Some people claim to have success with natural and holistic remedies, but these
have not been verified as effective for everyone. Be sure to make your doctor
aware if you are taking, or plan to use, any such supplements, as they may interact
with other medications or have negative side effects.
The importance of receiving medical help when ulcers are present cannot be
over-emphasized. Untreated ulcers could become infected or cause permanent blood
vessel damage. In the most severe instances, surgery or amputation of fingertips
or toes may be necessary.
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A condition known as chilblains results from defective blood circulation when
the person is exposed to cold. The symptoms are swelling, inflammation, severe
itching and a burning sensation. After the skin becomes itchy, it might turn
red and swollen, then become tender to the touch.
Cold Urticaria or Physical Urticaria is a condition in which red allergic skin
lesions and itching are produced by exposure to cold temperatures, water or
mild trauma. As with Raynaud’s, seek a diagnosis and treatment from your
physician.
One condition with symptoms and triggers (cold and stress) very similar to
Raynaud’s is called Acrocyanosis - a chronic circulatory disorder resulting
from spasms of the small arteries of the skin. The skin goes through color changes
from the lack of oxygen to the fingers or toes similar to the discoloration
seen in Raynaud’s sufferers. Other symptoms are severe sweating and swelling
of the digits.
As with Raynaud’s, seek a diagnosis and treatment from your physician
if you suspect any of the above conditions apply to you.
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Biofeedback is a technique whereby individuals train themselves to increase the blood supply to their extremities. Often, a wire is taped to the fingers. The wire is attached to a gauge or computer that indicates whether the finger temperature is going up or down. The person is then asked to imagine he or she is in a warm room, at the beach, etc. Relaxation tapes may be used. With practice, the person can learn to raise his or her finger (and overall body) temperature. After awhile, the response becomes automatic. This technique appears to work better for people with primary, as opposed to secondary, Raynaud’s.
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Here are some simple techniques that may help:
- Dress warmly, and in layers.
- Wear a hat when outdoors in cold weather. Try to stay indoors during cold
weather.
- In cold weather or when exposed to air conditioning or cold temperatures
(in the refrigerated section of a supermarket, for example), wear gloves.
Mittens are even better protection. Use these even when handling frozen or
refrigerated foods.
- Carry hand and foot warmers (found in many sporting goods and ski shops).
One form of warmers, Charcoal packs, heat up when they’re exposed to
air. Others have a metal disk that must be bent to activate the heat, caused
by a resulting chemical reaction. The Raynaud’s Association has discovered
a variety of useful devices for keeping hands and feet warm.
- Use insulated drinking glasses or mugs. Place a napkin or insulating material
around them to protect your fingers from becoming cold. (see the Newsletter
section of this website to search for information about products designed
for this purpose).
Place hands under warm (not hot) water to warm them up quickly.
- Don’t smoke. Smoking narrows blood vessels even more, and makes Raynaud’s
worse.
- Swing arms around in a windmill fashion to get the circulation going quickly.
- The Raynaud’s Association is a wonderful clearinghouse of information
about such methods, products and services (and where they may be obtained).
Many of our members share valuable tips, resources and insights. To visit
our online forums, click here.
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When Raynaud’s is very severe, resulting in intolerable pain and ulcers that don’t respond to medications, your physician may suggest a surgical procedure called a digital sympathectomy. In this procedure, a surgeon cuts the tiny nerves to the arteries of the fingers. The procedure isn’t always effective, and the benefits may not last. However, this “last ditch” approach may preserve the finger or toe from amputation. Some patients report that the procedure reduced their pain, healed their ulcers and/or prevented new ulcers from forming.
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Bitter-cold winters make life miserable for many Raynaud’s sufferers,
but warmer climates also present challenges. Attacks can occur in air-conditioned
spaces or when it’s a breezy day. Take into consideration the degree of
control you’ll have over your environment during the day (i.e., in an
office or retail store for work).
In the end, look at the full relocation opportunity from a lifestyle/family
perspective and think through the environmental elements that you’ll be
dealing with at home, at work, and other venues.
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Blood vessels are normally constricted when someone experiences strong emotions. Patients with Raynaud’s have overactive vessels that become too narrow. The adrenaline that is released during strong emotions triggers the spasm.
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There is some evidence that Raynaud’s may be part of a generalized disorder of the body’s overall vascular system. Headaches occur when blood vessels open too much (ironically, just the opposite of what occurs during a Raynaud’s episode). Headaches also may occur as a side effect to some of the medications taken for Raynaud’s.
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Not necessarily. Sometimes Raynaud’s improves or symptoms simply disappear. There is no clear pattern for either future prognosis.
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Unfortunately, most research to date has focused on treatment, as opposed to cause and cure. One of the most promising research studies to date is written up in our Spring 2002 newsletter about Dr. Nicholas Flavahan's work at Ohio State involving Alpha 2 receptors.
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At present, we do not directly fund research. Our initial goals are to develop greater awareness of the disorder and to provide support and education to Raynaud’s sufferers. These measures will create a broader base with which to launch an effective fundraising program to promote qualified research.
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That’s why the Raynaud’s Association was created. We offer support, advice and resources via this website and our quarterly newsletter, “Cold Cuts.” We’re also here to help you provide a support group in your own area. If you’d like more information about Raynaud’s and membership in the Raynaud’s Association (we rely on membership dues), contact us http://www.raynauds.org/pages/contact.htm or call our toll-free number, (800) 280-8055.
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