Navigating Cold Weather with CRPS/RSD: A Call for Advice

Learning the Lingo

“If we had no winter, the spring would not be so pleasant; if we did not sometimes taste adversity, prosperity would not be so welcome.” – Anne Bradstreet

Although this picture dates back to my modeling days, it screams springtime in Texas.

Although this picture dates back to my modeling days, it screams springtime in Texas.

I will be the first to admit that I don’t have all the answers.  Heck, I don’t even have that many answers.  But investigation and communication have always been strengths of mine.  So today I turn my blog to my readers and ask:  what can someone suffering from CRPS or other types of chronic pain do to help overcome the long winter months?

I have always been a warm weather girl, and in a perfect world I would live just a few blocks from a nice beach – a private beach where my three high-energy Shelties can run circles around me sans leash. When we moved from Central Texas to the Washington, D.C. Metro Area just eight months ago for my husband’s job, I was skeptical about living so far from family. At first homesickness consumed me, but as the summer days shortened and the leaves descended from their branches a new challenge would emerge. The most difficult of all changes resulting from the big move was not realized until the cold air began its slithering descent towards the coast of Maryland.

The change in climate has had several implications, expected and unexpected. The size of my closet is embarrassingly spacious and overflowing with sundresses, sunhats, and sunglasses. Let me be the first to say that there is no amount of sundress layering that can prepare you for “winter,” which turns out to mean prolonged temperatures below 40 degrees. And snow. Being from an area known for its heat and humidity, snow was defined as a hard, slippery substance that occasionally sparsely covers the ground when temperatures are at their lowest of the season (around 30 degrees) and immediately closes all schools and most businesses. I am told northerners refers to this as “ice”. Imagine my surprise when a recent polar vortex dropped a whopping 19-22 inches of snow.

Our first, what I would call, "major snow event" in the DC area (approximately three inches)

Our first, what I would call, “major snow event” in the DC area (approximately three inches)

IMG_6438

“Major snow event” number unknown.

"Major snow event" snowpocalypse of February (19-22 inches). February 13, 2014

“Major snow event” snowpocalypse of February (19-22 inches). February 13, 2014

Trying to figure out how to let the dogs out, February 13, 2014

Trying to figure out how to let the dogs out, February 13, 2014

Dogs trying to figure out how to navigate this snow stuff, February 13, 2014

Dogs trying to figure out how to navigate this snow stuff, February 13, 2014

Living with Chronic Pain in the Winter

What I had failed to prepare for – what you simply cannot prepare for – is the significant spike in the level of daily pain caused by the CRPS. Before winter set in, I had very little personal experience with the combination of cooler temperatures and CRPS.  As many of you know, not too long ago my time was spent between my wheelchair and physical therapy.  I had weaned myself completely off of my narcotic pain medication in October 2013.  It was not easy by any stretch of the imagination, but I was determined to rid myself of the fuzziness that accompanies its use.

Once temperatures dropped below 40 degrees, it was nearly impossible to warm my affected foot to room temperature, the typical swelling worsened, and my ability to concentrate became impaired.  The moment the weather dropped to freezing and below, the pain predictably became nearly unbearable.  Due to this, my local neurologist placed me back on pain medication in the hopes for a temporary solution until it begins to warm again.

Without close friends nearby, my support system can feel non-existent.  I had been accustomed to colleagues and friends knowing the details of my condition – since the surgical complications occurred just recently.  These days I find myself frustrated when I feel pressured to explain that my complaint of the cold weather is not merely a matter of preference, that the reason I appear so sensitive is because my coping mechanism has been to devote my concentration on my work – and when the wall I’ve built must temporarily be lifted, the emotions and pain hidden behind it are released in tandem.

A Call for Advice

So today I turn to the pain management community to ask how others have coped with increased pain over winter.  What tricks have you learned that help you live a more “normal” life when it’s cold out?  Are there things that you should avoid?  Rules of thumb?  Products that are absolute must-haves?

“Advice is the smallest current coin.” – Ambrose Bierce

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About Journey to Optimism

I have a perfect dental record and a heart of gold. I volunteer my free time at every opportunity because I believe we can all make a small difference, and through the accumulation of numerous small differences, together, we can make a large difference in this world. I enjoy politics and public policy but not divisiveness, and I absolutely love writing.
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6 Responses to Navigating Cold Weather with CRPS/RSD: A Call for Advice

  1. Jim Broatch says:

    We sked a similar question earlier this winter on our FB page, here is the link

    Here is a timely question and I hope you will share some positive suggestions. Thank you. Look for a post dated DEC 13, 2013.

    Would like to know how people r dealing with RSD pain during this weird winter we r having ?? My is out of control and the doc has his hands tied ….

  2. Ed Robinson says:

    We moved to south Florida. I know it may not seem like such a move is possible, but we changed our lives and made it happen. We took a huge risk but it paid off for us. Zero winter here and great improvements in quality of life as a result.

  3. Tommi Wills says:

    I too suffer from CRPS and Winter is very hard to handle, though I have found a few things that do help, but not all the time. One thing very important, is a heating blanket on your bed. This helps me sleep. I also weened myself off meds due to the fuzziness and so many other reasons. They actually made my condition worse, as I was running into things and hurting myself, while intoxicated with the meds they gave me. Another thing I use and this works really well, is Lidocaine patches. I use from 2 to 3 a day and placing them in the right areas seems to help. One on my sympathetic nerve area on my buttocks, one on my upper thigh area and one on my lower calf area. This helps tremendously. The other thing is called Ketamine-plo creme, not many have heard of this, but its amazing stuff. You place 3 to 4cc on your affected area, or me total leg and this warms it right up. The down side is you can only use so much and for so often, but its my life saver. I no longer get the insurance to pay for it, so I use it very sparingly.

    I was so sad to read your story, because I totally understand how and what your feeling and going through. I wish I had people around me that understood. I have become very alone and misunderstood. I used to be so active , happy and friendly. Now I am very sad, angry and lonely. I handle it well , but people simply do not understand. It’s a very hard thing to live with and year after year it continues. I hope you can find relief in your cold area. I can not even imagine that.

    Another thing I just thought of , is this little thing. I am not sure of its name, but its like a pillow filled with beads or something and you put it in the microwave and heat it up and you can do this all day and if need be some how wrap it to yourself. You may need to have a few ready to go, as they do not stay warm for hours, but in some cases it can last for up to like 20 to 30mins. I can not live without these items. I hope this helps you, if even just a little. I hope and pray that you can find relief, as I completely understand the pain you go through! Best wishes and much love and happiness to come to us all!

    Tommi

  4. I, too, have CRPS but have a resource I think would be very helpful to you. It is a web site called Pain Maps, and it is dedicated to non-drug, neuroplastic approaches to pain and neurological dysfunction, especially CRPS / RSD. It features the latest research in addition to videos, audio interviews, articles, a blog and more….if you are looking for hope I think you will find it here:

    http://www.painmaps.com/

    All the best —

  5. jennifer ferguson says:

    I have really bad crps in my hand/wrist/arm and the pain is unbearable especially with the cold weather…I am allergic to many pain med and in blood thinners which prevents me from taking others …what has worked for some of you? How do I make it thru the extreme pain and keep it warm when it hurts to even have something touch it? My family dr doesn’t know what else to do for me and neurology mentioned a spinal stimulator

    • Hi Jennifer,

      My doctors also have been at a loss for treating my pain, particularly in the cold weather. Mine also recommended the spinal stimulator, but my CRPS was caused by an infection from less than sterile hardware – so I’ve absolutely refused it…but I know that there are some who swear by it.

      Honestly, what I’ve been focusing on lately is the more mindfulness route (because I don’t have a lot of other options either). I’ve found some success by creating a “safe space” to run to when my pain is revved up. Basically, I try to take focus away from the pain aspect and imagine in great detail in my mind a beach, as this is my ideal calming environment.

      In other words, distraction has been about the best that I’ve found. For example, if I get a flare-up in the middle of a conversation, I will force others to continue with that conversation so that I can attempt to focus on their words, rather than the pain. It takes a lot of practice, but it does produce some success.

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