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Primary vs. Secondary Raynaud's & Self-Management Techniques

I was in my late 20s when I first experienced Raynaud's. At first it was only a minor inconvenience, but over time my symptoms worsened.

Symptoms of Raynaud's phenomenon (aka Raynaud's syndrome or secondary Raynaud's)

Symptoms of Raynaud's phenomenon (aka Raynaud's syndrome or secondary Raynaud's)

What Is Raynaud's?

Raynaud's is a condition that was first described by French physician Maurice Raynaud in 1862.

It is a vasospastic disorder that affects blood circulation and causes pain in the affected areas. It is a condition that leaves you feeling very cold—as if chilled to the bone.

The blood vessels in the extremities—typically in the fingers and toes, though sometimes also in the nose, ears and nipples—become narrow and very sensitive to the slightest change in air temperature.

Raynaud's flares are characterised by vasospasms, which are a sudden constriction and narrowing of the blood vessels triggered by cold or stress. During a flare, it becomes harder to warm up the affected area and keep warm.

Quite often, but not always, the skin will change colour to white or blue – and then red as the body warms up again.

Raynaud's is thought to affect up to 10 million people in the UK. Those living in colder climates, especially women, tend to be more affected.

Many people with this condition might only experience mild symptoms, which they can manage without medical intervention. Being meticulous about keeping warm can often keep symptoms at bay. But for some, keeping warm is not so easy. Once the skin has detected a drop in temperature, some people can experience an inability to get warm and pain in the dorsal side, which is the back of the hand.

Primary vs. Secondary Raynaud's

You may have heard a number of different terms associated with Raynaud's: primary vs. secondary; disease vs. syndrome vs. phenomenon. Let's discuss these terms and set the record straight.

Primary Raynaud's

  • Aka: Raynaud's disease
  • Associated with other conditions? People who experience primary Raynaud's do not have other complications or underlying conditions. Few with primary Raynaud's will develop a related condition.
  • Symptoms: Usually mild and manageable.
  • Causes: Symptoms are triggered by cold temperatures and stress. Disruptions occur in the part of the nervous system that controls the blood vessels, but it is not clear what causes these disruptions.
  • Treatment: Typically, no medical intervention is required. Self-management techniques are usually effective.

Secondary Raynaud's

  • Aka: Raynaud's phenomenon or Raynaud's syndrome
  • Associated with other conditions? Secondary Raynaud's results from another illness—often an autoimmune condition such as lupus, multiple sclerosis, rheumatoid arthritis or scleroderma. Other illnesses can include atherosclerosis, which is a disease of the arteries, or Buerger's syndrome, a condition of inflamed blood vessels in the hands and feet. This disease is aggravated by cigarette smoking.
  • Symptoms: Often more severe. In my case of secondary Raynaud's, I experience severe pain in the dorsal (back) side of my hands, pain, and a freezing, tingling sensation that is difficult to manage.
  • Causes: Symptoms are triggered by cold temperatures and stress, but the underlying cause is related to the underlying illness or condition.
  • Treatment: It depends on the severity of the symptoms, but treatments may range from self-management techniques to medication to surgery. I discuss some of these treatments in more detail below.
During a Raynaud's attack, the skin may appear white or blue, and then red as the body warms up again.

During a Raynaud's attack, the skin may appear white or blue, and then red as the body warms up again.

Symptoms

  • Feeling very cold in the extremities (usually fingers and toes, but sometimes also the nose, lips, ears and even nipples).
  • Skin turning white or blue, and then red upon warming up.
  • Numbness or difficulty moving the affected area.
  • Upon warming up: throbbing, tingling, burning or stinging pain.
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Diagnosis

The doctor might perform a nailfold capillaroscopy, where the skin can be checked under a microscope to see if there are deformities of the tiny blood vessels that could be affected.

Blood tests ordered by your doctor will rule out any conditions linked to secondary Raynaud's.

Treatments

For primary Raynaud's, treatments typically come in the form of self-management techniques that can be practised at home.

For secondary Raynaud's, treatment can vary depending on the severity of the case. Self-management techniques play an important role, but your doctor may also suggest additional treatments. Here are a few possibilities:

  • Calcium channel blockers: These medications work by relaxing and opening up small blood vessels.
  • Vasodilators: These are medications that dilate veins to allow blood to flow freely.
  • Chemical injections: Doctors can inject a local anaesthetic or a type of Botox that is used to block sympathetic nerves in the affected areas. This form of procedure often needs repeating if symptoms return.
  • Sympathectomy: In severe cases, doctors may recommend this surgery to remove nerves from the blood vessels. This can reduce the severity of Raynaud's attacks.

Self-Management Techniques for Raynaud's

  • Keep your home warm and free from draughts.
  • Wear layers of warm clothes indoors during cold weather – especially gloves on your hands and socks on your feet.
  • Exercise regularly – this helps improve circulation. A walk is perfect for circulation and for warming up the body. If it is too cold to exercise outside try a free exercise video on YouTube. Walking indoors is excellent exercise and helps to lift the mood (I like this indoor-walking video).
  • Try breathing exercises or yoga to help you relax and relieve stress.
  • Eat a healthy, balanced diet and eat regular warm meals.
  • Stop smoking. The chemicals in cigarettes can cause blood vessel damage and constrict veins.
  • When you do get cold, warm up as quickly as you can by running warm water over yourself or taking a warm bath or shower.
  • Avoid over-the-counter drugs, especially cold treatment drugs that can aggravate Raynaud's. (Discuss with your doctor if you have questions about specific drugs.)
  • Use an electric blanket throw to keep you warm during the day (see my recommendation below).
  • If you live in a cold climate, consider moving to a warmer climate if it is possible.
My electric throw starts up quickly and warms me up when I need it.

My electric throw starts up quickly and warms me up when I need it.

Electric Blanket and Throw

I keep an electric blanket on day and night during winter because once I get cold I cannot use my hands. My hands become frozen and stiff, even indoors. I used to spend a lot of time in my bed trying to stay warm under an electric blanket until I found an electric throw that I could keep in my living room.

I use this electric throw during the day. It starts up quickly and warms me up when I need it. It is soft and machine washable and I would definitely recommend one for anyone who feels the cold. I keep mine folded up and tucked behind a cushion on the sofa – ready for when I need it. It also has an easy-to-use controller, which comes in handy when your hands are frozen.

I finally found gloves that actually warm up my hands.

I finally found gloves that actually warm up my hands.

Gloves That Actually Work

I spent the last 10 years feeling like my hands were blocks of ice. I struggled to warm them up. I felt like I spent my life in bed trying to stay warm because my cold hands were year-round. Even in bed my hands felt frozen unless I sat on them and they were touching my electric blanket. Nothing helped with the intense freezing sensations I felt on a daily basis. I could not write or use a computer because my hands would get too cold. I had to take regular hot baths throughout the day because that was the only way to warm up.

I tried several types of special gloves that promised to help sufferers of Raynaud's, but none of them worked for me.

Then, miraculously, I found gloves that actually warm up my hands. They have USB socket and can be plugged into the computer. Now I can type without my fingers freezing. I can have my hands out of bed and they actually feel warm. Whoever thought up these simple gloves, please accept a massive thank you from me!

A perfect gift anytime of year for anyone suffering from Raynaud's, these gloves definitely brought a smile to my face.

'Dress Up Warm'

People often tell me, 'just dress up warm', but they do not understand that dressing up warm does not work. I can be wearing the warmest clothes I own along with two pairs of gloves, and I can still be freezing and in pain. Worse than the sensation of cold is the sensation I feel at the backs of my hands with the slightest of a chill in the air.

I used to use a vibration plate to help with muscle waste and circulation. My circulation and muscle strength improved and I felt warmer whilst using the plate. Unfortunately, I developed rectal cancer and you are advised not to use a vibration plate if you have or have had cancer so I can no longer use the vibration machine.

If you are considering a vibration plate, please consult with your doctor first.

My Experience of Raynaud's Phenomenon

I was in my late 20s when I first experienced Raynaud's. I was finding it more difficult to get warmed up if ever I got cold. At first, it was only a minor inconvenience, but over the years it became quite severe and life got difficult.

It Feels Like an Icy Whip

I struggle to cope when the temperature drops below 19°C (66°F), as I start getting symptoms of extremely cold and painful hands and feet and terrible sensations.

When I get cold, only a hot bath or shower helps, and I have to take frequent showers just to warm up. Getting wrapped up in a warm blanket does not help until I warm up in a bath or shower first.

When my hands get cold, I felt severe pain in the back of my hands, and I feel like I am being whipped with an icy whip, or like thousands of tiny icicles are hitting the skin. The tips of my fingers feel numb whilst the rest of my hands and fingers are in pain. My feet and toes feel like they are freezing whilst the bottom of my legs and my knees feel like they are burning. My hands and fingers become stiff and painful to use. I have to hold my hands under a warm tap until they warm up or my hands are useless to me.

Dark Winter Days

I am cold all year round, and I live in fear of winter when there was no escaping the pain. My experience of dark winter days are of struggling, hour by hour, to get through the day with intense pain and icy whipping sensations that leave me feeling distressed, anxious and depressed.

I tried medication but I experienced side effects that were difficult to manage. I live in the north of England where it is cold and wet for a lot of the year. I find that this climate is not good for sufferers of Raynaud's.

No One Understood How I Felt

I have found that no one understands what it is like to have this condition, and sometimes they would say things like, 'It's not that cold', or 'Dress up warm' – and I cannot not get them to understand that I am freezing and in pain. I have stopped visiting others because I fear that I would be cold in their homes and then I will be unable to enjoy the visit.

How I Found Relief

The freezing, painful symptoms of Raynaud's are relieved for me only when I am in a warm, sunny climate. I discovered this during one particularly bad winter when I felt that I could no longer take another day of pain and inability to get and stay warm.

My daughter suggested I go away to a warmer climate for a break from the harsh coldness of winter. She chose Lanzarote (in the Canary Islands) as the destination for my week's break because it was the nearest place to England that would be significantly warmer. When I landed at Lanzarote airport and got off the plane I felt instant relief and felt warm all week. I was so grateful.

My Hopes for the Future

When I reached my 60s I made it my goal to move to Lanzarote where the climate is better for my physical and mental health. Although I cannot afford to move yet, I am working toward this goal in the hopes that my quality of life can one day be improved. I am unable to work in England as the Raynaud's make it difficult for me to be employed, but I hope one day I will be able to make this move. In the meantime, I practise all of the self-management techniques I listed above.

How About You?

Are you experiencing Raynaud's? Do you have any questions? Please share your comments below and tell us about your experience.

Further Reading

Comments

Louise Elcross (author) from Preston on May 18, 2020:

Hi Marcy and thanks for reading. My Raynauds only got bad in the last ten years and sometimes is unbearable. My doctor says I have escalated to severe Raynauds and medications, for me, do not seem to help. I truly hope you do not get any more issues with Raynauds. All the best to you.

Marcy Bialeschki from Cerro Gordo, IL on May 17, 2020:

I had Raynaud's as a precursor to Psoriatic Arthritis. It's funny that it just stopped happening. I haven't had an issue with Raynaud's for nearly 10 years. Thanks for all the good information.

Louise Elcross (author) from Preston on March 07, 2020:

Thanks Pamela. I also have Lupus, Fibromyalgia and other problems too. Raynauds used to be manageable for me but as I have got older it has got to a point where my doctor says it is severe Raynauds because the sensations I get are unbearable and I never used to be like this. Thanks for reading and for your comments they are appreciated.

Pamela Oglesby from Sunny Florida on March 06, 2020:

There was a period of time that I had seconday Raynaud's. I have systemic lupus and as I've aged many things in my body have changed. I never suffered with Raynaud's disease in the way you described. My fingers would turn ren, then blue but I wasn't cold all over like you were.

This is an excellent article about Raynaud's disease, which answer a lot of questions.

Louise Elcross (author) from Preston on September 11, 2019:

I feel for your friend because it can be a distressing condition especially if you get cold. Thanks for reading.

Lorna Lamon on September 11, 2019:

Excellent article and of particular interest to me as my friend suffers with Raynaud's syndrome which is quite mild, although her fingers are very red and swollen in Winter, which is very painful. Your self-management tips are really useful and your own experience of the condition invaluable. Thank you for sharing.

RTalloni on September 11, 2019:

Thanks for this explanation of Raynauds syndrome and information on managing it. Sharing your experience is helpful to others in many ways.

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