Autoimmune Disease, awareness, Health, raynaud's phenomenon

5 Things You NEED to Know About Raynaud’s Disease

The failures you beat yourself up over are the ones where you experienced warning signs and connect the dots back after the fact.”

Caroline ghosn
5 Things You Need to Know About Raynauds, hand holding an autumn leaf
5 Things You Need to Know About Raynaud’s Disease

October Is Raynaud’s Awareness Month

Oh, beautiful October! The Autumn has long been my favourite time of year in Canada, however, since being diagnosed with Raynaud’s the cooler temperatures this month brings do cause more frequent flares and greater discomfort. It is for this reason, I am quite certain that October was chosen as Raynaud’s Awareness Month.

According to the U.S.-based Raynaud’s Association, Raynaud’s is “a painful condition triggered by cold or stress, causing the small blood vessels in the fingers, toes and other extremities to go into spasms and reduce blood flow. When spasms occur extremities can turn colors in response to the lack of oxygen to the digits” (October is Raynaud’s Awareness Month media release, Raynauds Association, 2019 https://www.multivu.com/players/English/8604451-raynauds-awareness-month-october-2019/ ).

People who suffer from Raynaud’s sometimes refer to themselves as Frosties.

The following terms are used interchangeably by various sources to refer to Raynaud’s

  • Raynauds
  • Raynaud’s
  • Raynaud’s Disease
  • Raynaud’s Phenomenon
  • Raynaud’s Syndrome
Raynaud's Syndrome Disease Phenomenon Picture of Raynauds fingers turned white
The Many Names of Raynaud’s

5 Things You Need to Know About Raynaud’s

1 Raynaud’s is Common

You may not have heard of Raynaud’s, but it is quite a common disorder affecting anywhere from 3 to 5% if the global population (Raynaud Phenomenon, Genetics Home Reference, U.S. National Library of Medecine, www.ghr.hlm.nih.gov, March 2018). In fact, I had tests done years ago to find out why my fingers and toes went numb with the cold and was diagnosed, but remained unfamiliar with the name of this disorder.

Like many people with Raynaud’s, sometimes called Frosties, I first thought it was just a nuisance and waited until is started to become more bothersome to mention it to my doctor. At that time I was sent to a vascular surgeon for testing, which included plunging my feet in a bucket of ice water! A more comfortable approach used today is called a capillaroscopy , which looks at the capillaries in your nailfolds under a microscope. I was diagnosed as being “sensitive to the cold” as my doctor put it.

2 There are Two Classes of Raynaud’s: Primary and Secondary

There are two classes of Raynaud’s, primary and secondary. When diagnosed many doctors will go on the assumption that the disease is primary.

Primary Raynaud’s

Primary Raynaud’s is more common and less severe. Primary is when the symptoms of Raynaud’s present on their own, not caused by another disorder or injury. For this reason, Primary Raynaud’s may often be referred to as Raynaud’s Disease.

Secondary Raynaud’s

Secondary Raynaud’s is a symptom of another disease or injury. Secondary Raynaud’s may often be referred to as Raynaud’s Phenomenon. This phenomenon is less common, but more severe, than Primary; flares or spasms may be more frequent, more extreme and/or more painful. This may lead to sores and lesions on the finger tips which can be excruciating. These sores must be carefully monitored and cared for to prevent gangrene. Very rarely digits may need to be amputated.

Diseases or Injuries that may cause Secondary Raynaud’s Include:

  • Prolonged Use of Vibrating Tools, such as a jackhammer
  • Smoking
  • Hypothyroid
  • Autoimmune Diseases, such as Sjogren’s, Lupus, or Scleroderma
  • Injury or Trauma

3 There are Treatments But No Cure

Many people, particularly those with primary Raynaud’s may find the disorder nothing more than a nuisance and, like me, wait to speak to a doctor about it. In fact, according to Penn Medicine only 1 in 10 Americans seeks treatment for Raynaud’s (The Cold Truth About Raynaud’s, PennMedecine.org, December 2017). It is important to reduce the severity and frequency of attacks to prevent tissue damage over time.

To avoid painful flares, taking conservative measures to keep extremities warm are the primary strategy. Gloves, mittens, hand warmers, warm socks, hats or earmuffs to cover ears, a scarf to cover the nose, etc. Many ‘Frosties’ keep gloves on hand even in the summer as entering a grocery store or air conditioned restaurant can lead to uncomfortable episodes. In fact holding a cold drink on a warm day can cause a flare-up (See my previous post 5 Cold Drink Hacks). That being said, conservative measures won’t do much good if the flare is due to anxiety or emotion.

Autumn sunset over a pond with pale hand in the foreground with heading October is Raynaud's Awareness Month
It is important to raise awareness about Raynaud’s Phenomenon

There are also medications available to help improve blood flow. The two main classes of drugs are Calcium Channel Blockers which open small blood vessels (such as Nifedipine or Amlodapine) and Vasodialators which relax blood vessels (such as nitroglycerin cream and drugs like losartan and viagara). (Raynaud’s Disease, Mayo Clinic Website, copyright 1998-2019). I take a drug called bosentan (which is a dual endothelan receptor antagonist) as part of my scleroderma treatment, happily, one of the benefits is that it also helps to control the severity of my Raynaud’s.

Finally, there are some medical procedures that may be performed, though there is no guarantee of their success. One is nerve surgery, called a sympathectomy, where doctors cut the sympathetic nerves around tiny blood vessels in affected fingers and toes. The other procedure is chemical injection to block these nerves; doctors use chemicals such as botox or local anesthetics (Raynaud’s Disease, Mayo Clinic Website, copyright 1998-2019).

4 Age of Onset Can Be a Predictor

It is extremely important to note that anyone, of any age or gender may experience Raynaud’s, primary or secondary. That being said, there is evidence to suggest that Primary Raynaud’s is typically diagnosed at a younger age, between 15 and 25 ( Raynaud Phenomenon, Genetics Home Reference, U.S. National Library of Medecine, www.ghr.hlm.nih.gov, March 2018). Secondary Raynaud’s on the other hand is more common after age 30, 35 to 40 according to PennMedecine.org.

Raynaud’s is also far more common among women and girls than it is in males, by a large margin; 9 out of 10 according to the Raynaud’s Association.

5 Your Raynaud’s Might be a Red Flag

Years ago when my doctor told me I had Cold Sensitivity/Raynaud’s, she also said that we should keep an eye on it because it could be a sign of Lupus or other disease. Due to experiences with the health of other family members, I tend to not worry unless I know for sure there is something to worry about, especially when it comes to my own health. While we know that worry is never a productive emotion, I would have been wise to have looked into this a little further at the time.

According to the Raynaud’s Association, Raynaud’s is often the first sign of a serious autoimmune disease. The Association “encourages doctors, as well as patients, to take Raynaud’s seriously.” This includes performing tests to rule out or confirm the presence of another disease, “particularly among sufferers with more severe symptoms.” (October is Raynaud’s Awareness Month media release, Raynauds Association, 2019 https://www.multivu.com/players/English/8604451-raynauds-awareness-month-october-2019/ ).

Importance of Raising Raynaud’s Awareness

Early diagnosis of a serious disease can lead to early interventions and better outcomes. In my case, 90% of people with scleroderma have Raynaud’s. When my scleroderma began acting up there was a five month period of investigation to reach a diagnosis; I did not equate the Raynaud’s with it because I had never heard of scleroderma. This is why Raynaud’s Awareness Month, and all awareness campaigns, are so very important!

Do you or someone you know suffer from circulation issues due to cold or stress? Have you been diagnosed with Raynaud’s? Do you know if it is Primary or Secondary? Do you have any helpful advice for fellow Frosties? I’d love to hear from you, please reply in the comments area below.

Five Things You Need to Know About Raynaud's banner, photo Erico Marcelino
5 Things You Need to Know About Raynaud’s – Photo by Erico Marcelino
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4 thoughts on “5 Things You NEED to Know About Raynaud’s Disease”

  1. Thank you for writing this! This is a condition that, although I don’t suffer from it, it’s close to my heart. INot a lot of people are aware of this condition so thank you so much for educating us all 😀

    Liked by 1 person

    1. Thank you for reading! I am frustrated that there is not more information circulating during Raynaud’s Awareness Month – I do not want to be alarming, but wish I had realized what was really happening to me, and connected it sooner to my scleroderma. I appreciate your feedback.

      Like

  2. Just started following you as I came across the blog via Twitter. I have Raynaud’s but take no treatments to help manage it, so this made for interesting reading. I also have erythromelalgia. Fantastic post, very thorough and fantastic for raising awareness of what it’s all about!
    Caz xx

    Liked by 1 person

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