How Weather Influences My CRPS Symptoms

Dear Audy,

It has been a very flarey week. Just when I start to recover and function after the weather changes, it decides to change again. I know, I know, I live in Melbourne, which is famous for its four seasons in one day tricks.

The evil sky.

The evil sky.



Whenever I explain to somebody how much the weather influences my pain and symptoms, I am told that I should move to somewhere with a more stable climate. These are not ill intentioned suggestions, it’s simply that people like to solve problems and when the problem is weather, the first solution is moving. I have heard this from more people than I can even remember, both loved ones and strangers. Relocation destination ideas have ranged from Queensland, to Tasmania, to Perth and all the way over to Canada.

Unfortunately, relocation is not currently an option for me. I require a lot of help and that means that I need to be close to family. I have finally found a wonderful pain specialist who is helping me to improve my quality of life using ketamine infusions. People literally search the world for the right specialist to help their complicated medical conditions, so when one is found it’s a good idea to hold on to them. I also have very little money and from the looks of the new Australian budget plans, I’m going to have even less. Relocating is expensive and just not a feasible option at this time.

If a rich person happens to want to fund my move to a place where the sea air is rich and the clouds are few and also fund my flights back for medical treatment then sure, I’ll move. Come at me, mysterious rich people.

Until then, I’m stuck here in Melbourne, where the weather comes in beautiful and sudden waves that bash me around like dislodged seaweed.

How does weather affect me? Let me count the ways…all of them. All the weather changes, all the CRPS symptoms. It’s all of them.

Heat sets me alight with burning from my bones right through to the place that my skin stops being my skin and the air around me begins. Sometimes, the burning is explosive, like fireworks or nuclear missiles. Sometimes, it’s more tingly, like an itch that I just can’t scratch. Usually, it feels like I’m covered with the sort of sensitive skin that you might find under the fluid of a blister that you happened to pop and pick at. Sometimes the burning is concentrated in specific areas, usually it’s everywhere or on its way to everywhere.

The cold sinks into my joints like it’s been directly injected. It’s an aching like no other. A chill that I can’t warm up, can’t escape. When I do start to get warm, my body overreacts and suddenly I am sweating, burning and freezing at the same time. I feel as though I’m aware of every joint in my body and that they are all made of razor wire instead of cartilage.

Humidity causes my body to puff up as though it’s preparing to float away. Anywhere that can inflame, will inflame and that’s basically most of the wheres in the body. The inflammation burns and aches and cannot stand the lightest touch and gets upset about clothing and movement and is basically just a whiny jerk.

These probably sound like rather severe reactions, however there doesn’t need to be a severe weather change to set them off. The slightest difference can do it, the slightest changes in air pressure and those other atmospheric things that happen when the weather changes that I don’t fully understand.

Along with the different types of pain that I have to navigate my life around, there are some fun extra challenges that come with a malfunctioning nervous system.

Any of the weather related flares described above also bring increased, sometimes crippling fatigue. You know, can’t physically pull myself up from the floor fatigue. It’s not even relaxing, like fatigue should be, because many of my muscles tense in reaction to pain, or twitch, or spasm, or have me rolling around because I can’t get up and I can’t stay still.

Then there’s the symptom that child-me would have simply referred to as being “unco”. Signals in my nervous system aren’t all getting to where they need to go. Some of them need to go to Hell and instead they just keep bouncing around my neurons, but some of them need to go to parts of my body that I’m trying to move and they just…don’t…quite…get…through…and then I bump into the doorway instead of walking through it. Or, I drop the glass instead of placing it on the bench. Or, I whack my arm on the wall instead of just grabbing some toilet paper like a regular person. You see, there’s really no better way to describe this than unco, except maybe unco to the max.

Always, CRPS flares bring the painbrain. Spellcheck tells me that painbrain isn’t a word, but I assure you, it’s a very real thing. Brains are ridiculously special and powerful and a little bit magical, but they still can’t do everything at once. CRPS means that my nervous system gets flooded with signals and my dear, sweet brain simply can’t interpret them all at the same time. However, that doesn’t stop it from trying and the result is a disconnectedness between thoughts, gaps that don’t belong and strange black holes that swallow the word that I was going to say and spit out something irrelevant like “capybara” instead.

Not that capybaras are irrelevant, they’re basically as magical as unicorns and llamas, it’s just not helpful to say “capybara” when you actually mean “carrot”, or “vacuum”, or “please can you make me a cup of tea”.

There are plenty of frustrating things about living with CRPS, however, not being able to control the weather is very high on the list. I am the sky’s puppet, whether I like it or not. I can’t fight the sun, or the moon, or the air. I can’t scare the clouds off by barking madly like my fluffy dog has tried to teach me to do. All I can do is manage my symptoms and try to minimise the flares by being the strongest version of me that I can be.

That’s the whole point of me writing today at all, because the strongest version of me can do something, even just a little thing, to keep herself sane while the warm winds cause havoc in her body. She can explain some symptoms to you and maybe you relate, or now understand her a little bit better. She can type for a while, even though it burns and she can find a sense of accomplishment in having written something today, even though she’s not sure it’s made sense until the tenth re-read beams some sort of clarity through the fog of painbrain.

The strongest version of me can’t push through anything, she’s not Supergirl, but she can push through this particular obstacle on this particular day.

And I’m proud of me for that.

Do you live with chronic pain or illness? How do weather changes affect you?


Love & Gritted teeth,
Caf

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  • 9 thoughts on “How Weather Influences My CRPS Symptoms

    1. Lisa Moon

      Canada?!As a happy Canadian, I can say there are many wonderful things about our beautiful country from the incredibly varied land, climate, and people… Much of Canada is a land of extremes.

      Ninety percent of Canadians live in the southern 10% of the country due to it getting very cold! Tons of snow, long winters.

      The prairies go from -50°C in winter with snow over your head to 40°C++ in summer… We have mountains, too, and the Atlantic provinces have a very different look than the Pacific/e
      Western province of British Columbia, which is where I live.

      I live at the tip of Vancouver Island, which is actually more south than our more well known city, Vancouver, as she has the mountains which catch the rainclouds all over the city. It’s also one of the most expensive cities in North America to live, behind only San Francisco, New York… Even Greater Toronto has more affordable options. But the quality of life is unparalleled, I think.

      Victoria is a little bit British in heritage, a helping of several Asian countries’ immigrants have contributed marvelous influences… But housing is super expensive, and that island? There’s no bridge or tunnel possible to connect us so we are at the mercy of a beautifully scenic ferry ride or super short plane jaunt to get to the mainland.

      However, due to our geographical protection, we enjoy the mildest climate I’m the country year-round – temperate rainforest/northern Mediterranean, I believe. Not too hot in summer and very mild winters with snow being and excitingly infrequent visitor.

      I mention all this because even with the gentlest weather ranges, I STILL spend weeks and months aching and in pain when spring or fall is vacillating between warm.and sunny and rainy and cooler… Ohh, that deep, awful ache that never seems to quite be fully treatable by exercise or medication.

      And like you, moving has crossed my mind. Living in another country sounds wonderful but as someone currently unable to work really at all, I have very little income, healthcare needs… No government is going to see me as a desirable potential citizen!

      Barring finding a warm, dry but not too warm island where we can move and bring our family and/of friends who make up our support networks… As you said, any mega-wealthy philanthropist want to buy and create a crps-friendly community operated on a pay-what-you-can basis… Well, PLEASE keep me in mind!!

      What we really need is support in our current communities, properly educated medical care, and the financial means to survive and thrive.

      I appreciate your descriptions of what the pains feel like, as I very much relate to those types of pain… Been keeping me up for weeks unending. Ugh

      May the weather give you a much-needed break, my dear. xo

      1. Hayley Cafarella Post author

        Thank you! Canada sounds like a beautiful place, I’d love to visit there someday. I am sure that, like you, I would still have flares from the slightest changes in weather, but I’d still love to come and see all the amazing scenery! There are so many places that I’d travel to if ever given the opportunity. I still hold out hope that I’ll get well enough to do so one day. I’ve made lots of friends that I need to go and meet.

        Here’s hoping that the seasons settle down for both of us soon! Nobody needs these extra aches, it’s hard just to breathe today. xoxo

        1. Lisa Moon

          Kept meaning to reply… Heh.

          Yes, exactly. Even if we could magically emigrate to the countries of our choice, it’s likely we would still suffer from weather-related pain and stiffness. However, I’m glad it sounds like somewhere you’d want to visit IG you could. I’d love to visit your city, too. Seems like the one I’d most enjoy from what I’ve heard.

          I’ve always wanted to travel the world. I hold onto the hope that I’ll be able to do so one day… Soon!!

    2. Matthew Smith

      Suggesting that someone relocate when they are disabled is a really foolish thing to do. You can only relocate if you have anyone to support you in the place you are moving to, and you have the right to live there. As a disabled person you would not be able to move to any Commonwealth country except the UK unless you have a right to citizenship (i.e. if one of your parents come from there). Australia has the same policy. The only exception is when all of your family have moved there. If you have a British parent you could probably claim British citizenship (but if you were born before 1982, that parent has to be your father). You might also be able to exploit your Italian connections to get an Italian passport, then come to the UK as an EU national. Needless to say, your partner would have to fulfil the same criteria you would.

      The British climate (at least that of London) is fairly mild, as in we don’t get really hot weather and not too much snow (though the place grinds to a halt when we do), but you might not find it mild if you’re used to a warmer climate. There’s no place of eternal Spring on earth; no place that is free of blazing heat, bitter cold, floods or snow all year.

      1. Hayley Cafarella Post author

        It is a fairly silly suggestion! Most people haven’t really thought it through when they say this stuff, relocating is hard for healthy people, let alone unhealthy people who are also poor. Like you mention, I’d still have weather fluctuation issues anywhere, that’s just how the planet works and I do like that the planet works, so I try not to complain too much. ;P

    3. Lori Joksch

      Thanks again for writing on subjects so close to my heart. I suffer from Fully Body RSD/CRPS.
      Yes I live in shiny California but I live in the middle of the state and right now I though we had mad it out of the winter but I was wrong . We went up to the upper 90’s-100’s then on our way back to 70’s. That kind of quick fluctuation. Has increased my pain and exhausted me. I slept all night and all day today. I simply can’t get out of bed. And the wind is nonstop .It sucks! I am glad I am not the only one who feels like this. Thanks, Lori

      1. Hayley Cafarella Post author

        It’s amazing how even the “lovely” weather can be so hard on us! It’s beautiful and sunny in Melbourne right now, however I feel like I’ve been through the tumble dryer. Just trying to function a tiny bit so that I don’t feel like pain has beaten me completely today, but not sure how far I’ll get. Wishing you more stable weather and less pain. x

    4. Lara

      Hayley, I always read your posts and I usually enjoy them very much. This one was no exception, however it unfortunately put the song ‘Can’t Fight The Moonlight’ in my head and it will be a difficult thing to forgive.

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