Category: Complex regional pain syndrome (CRPS)

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Why Does Our Culture React So Negatively to Disability Activism?

Why does our culture react so negatively to disability activism?

Disclaimer: This article is written from my perspective as a young, disabled adult that lives in New Zealand. Whenever I mention “culture” in this article I am referring to western culture, specifically western culture as adapted to by New Zealand. I haven’t done much traveling so I can’t say if other countries with similar cultures react the same way, however, I have seen accounts of similar experiences from activists worldwide. 

This is also my experience as someone with an invisible disability. I’m sure that everyone’s experience is different, and some of the readers of this article may not relate to what I have written no matter where they live. This is awesome because we all have our own unique story. I make a lot of generalisations in this article, and those generalisations certainly don’t apply to everyone. I am just expressing my experience in the best way I can.

I have experienced widespread chronic pain since the age of seven. I went from being a relatively “normal” (if accident-prone) girl to experiencing severe pain every day of my life. Slowly my condition deteriorated until I required the use of walking aids for a large chunk of my life (and I still do). I went through years of bullying and what I can only consider being “medical abuse” (mistreatment from medical professionals; such as being called a faker and being forced to take medication that caused severe side effects), which almost broke me.

As I grew into my voice I decided that I would be an advocate; not only for myself but for everyone with similar experiences to mine. I started with the basics: social media. Whenever I noticed an injustice towards people with disabilities, whether it be against me directly or against someone else, I would speak out. I then started writing articles about my experiences, which I love. And now, I’m a part of a panel run by the local Ministry of Education aimed at making education more inclusive to disabled students. This is just the beginning of my advocacy journey, and I can’t wait to see where it leads me in the future.

My advocacy journey on social media

Throughout my advocacy efforts, I have noticed that many people on social media bristle when advocates like me bring up serious issues addressing the disabled community. I have been dismissed, insulted, and verbally abused online by people who will do anything to defend injustices against vulnerable people. I decided recently that I wanted to analyse their viewpoint and understand why, so I thought the perfect way to do this would be to write out my analysis and my thoughts in article format so I can share it with you all. This article addresses the question featured in the title: Why does our culture react so negatively to disability activism?

Ableist preconceptions that exist culturally regarding disability:

When we take a deep look at how the topic of disabilities is covered in the media, it is actually quite shocking. For example, I have an issue with the tv show called “The Undateables”, which is a dating show about people with disabilities finding love. While I believe that disabled people (including myself) should have the opportunity to find love just like everyone else and appreciate the representation this show provides, I don’t support that show because of the title’s connotation and denotation. Using the term “undateable” to describe an entire group of people is downright insulting. You’d never see a media organisation calling someone who’s from any other minority group (but who is not disabled) “undateable”. 

I am not “undateable”. My brothers are not “undateable”. My friends are not “undateable”. No person should be labelled “undateable” for something they can not control. This is just one example of society’s ingrained ableism that many people are blind to.

We’re to be pitied, but not listened to. This is another ableist preconception I’ve witnessed. Often disabled people are portrayed to be these pitied, helpless beings who need charity, not a voice. We must be passive to maintain this image otherwise we are labelled as “trolls” or “entitled”. I’ve been told that if I can walk and/or articulate then I’m not disabled enough to complain about facing injustices. That is so incredibly wrong, especially since if people like us who can speak up don’t, then who will? 

Ableist preconceptions that exist culturally regarding disability

I’ve also been told that I should stop using my disability “as my personality” when I responded to a post on social media. Actually, I’ve been told this multiple times. That is one of the most ableist things I have heard to date. I’m sorry that I can’t “turn off” my disability. I experience pain every single second of my life. It impacts my ability to sleep, my ability to sit, my ability to stand, my ability to walk, my ability to work, my ability to study, and my ability to socialise. Am I supposed to forget that? Not only that, but why shouldn’t I fight for injustices against people with disabilities to end?

Invisible disabilities make people uncomfortable:

Many people feel like they have to see something to believe it, which is fine until you start talking about invisible illnesses and disabilities. If I’m not using my cane, you couldn’t tell I’m disabled just by looking at me. And yet, my disability impacts all aspects of my life, whether I’m using my cane or not. Many times I have had people accuse me of faking my disability on my activism posts, telling me that I don’t “look” disabled and that I’m just “lazy”. I’ve had to grow up listening to this from my peers throughout my childhood so it doesn’t bother me as much as it used to. I’ve become desensitised. However, this behaviour needs to be addressed, because next time it could be said to someone who is not experienced dealing with this kind of harassment.

The disability rights movement isn’t as “trendy” as other human rights movements:

This point may be a bit controversial, however, I think it’s important to talk about. As a disclaimer, I’m not trying to tear other movements down to lift up disability awareness, I am simply comparing current cultural awareness and coverage of different movements in the mainstream media. I am not trying to say that either of the movements I compare disability activism to below deserve less attention, because I believe they deserve all the coverage they are getting, if not more. I also believe that the disability awareness movement should have just as much coverage as these movements so that they’re all at an equal platform.

LGBTQIA+ pride, for example. We have pride parades and Pride Month, events dedicated to raising awareness about discrimination against people within the LGBTQIA+ community, and LGBTQIA+ merchandise specifically aimed at raising awareness and money for charities that support this goal, which is a great cause. Companies change their logos or advertising media to reflect these events to show their solidarity, which is amazing. There are even multiple public spaces in my country that have been painted rainbow to celebrate Pride, such as town squares and selected zebra crossings. Feminism is another example. We have the women’s march, international women’s day, feminist merchandise, and a tonne of events targeted at raising awareness about discrimination against women. Both of these movements are prominent in pop culture and get a large amount of media coverage, as they should. 

The disability rights movement isn't as "trendy" as other human rights movements

I just wish we could see the same effort go into raising awareness about discrimination against people within the disability community, as well as a similar amount of media coverage of these efforts. Where are the disability awareness parades? In my country, there are none. There are disability awareness days, however, I have yet to see the mainstream media address them. The inequities of identity awareness in our culture is definitely an interesting topic to think about.

Disability activism is not “convenient”

Part of disability activism is confronting people who are taking advantage of disabled people just to make their own lives more convenient. For example, calling out people who park in disabled parks without a permit, or sharing public service announcements about misuse of disabled toilets. When I mention the misuse of disabled toilets, I don’t mean them being used by someone with an invisible disability. People with invisible disabilities have as much right to use the disabled toilet as every other disabled person. When I mention the misuse of disabled toilets I’m talking about the people who have no impairment what-so-ever (or aren’t assisting someone with an impairment) who just use the disabled toilet just because it’s there. 

I have witnessed people without disability parking permits parking in disability parking many times. When called out on it, their response is often “I’ll just be a few minutes.” That is one of the most common responses, along with resorting to verbal abuse when someone mentions their lack of a permit. I have made posts about these occurrences on my town bulletin Facebook pages, and every single time I have received abuse from people who see no issue with parking in one of these parks without a permit. I get told that I’m entitled, even though I paid for my permit to use those parks, while the abusers that park there don’t. How am I entitled for asking to use a service that I pay for?

Privileged people who lack empathy don’t like having their privileges, even the privileges that aren’t rightfully theirs to begin with, taken away.

There’s also the issue of inaccessible public spaces or stores. Renovating an area to ensure it is accessible by everyone may not be cheap, but it is necessary. Calling out local businesses that exclude disabled people from their stores and spaces is extremely important.

Disability activism is not “convenient” especially when it addresses the misuse of disability parking and disability toilets

During my advocacy journey (despite it being a short one at this point, I only started about 4 years ago) I have faced a lot of feedback. Some of it good, some of it bad, most of it respectful. However, I have also faced a lot of abuse, mostly online, for standing up for what I believe in. Sometimes, for a brief moment, I consider giving up, but then I remember the people that have thanked me for speaking out. This article is dedicated to them. I long for a day when disability activism is no longer controversial, and people no longer have to fight for their voices to be heard.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Why The “You Can Do Anything If You Try” Narrative Is Harmful to Chronically Ill and Disabled Youth

We hear the phrase “you can do anything if you try,” or something similar, throughout our entire lives; starting at preschool and kindergarten and continuing throughout school. And sure, for many children this may be true; if they put their efforts into something, they may eventually master their craft and achieve all their goals.

However, this phrase completely ignores the fact that we each have our own unique strengths and weaknesses. Someone who is naturally good at maths is going to do far better in that subject than someone who is not. And that’s ok.

Why The "You Can Do Anything If You Try" Narrative Is Harmful to Chronically Ill and Disabled Youth

This phrase becomes even more illogical once you consider that it is also often applied to disabled and chronically ill youth. When experiencing a disability or chronic illness, you often can’t do certain things, no matter how hard you try. So why is it being drilled into disabled and chronically ill youth that they can? Isn’t this harmful? Wouldn’t this lead to false expectations and damaged self-esteem? 

You may be reading this and be thinking that I’m just cynical. This article may even be seen as a little negative and controversial. However, for me, finally realising that I couldn’t do ‘everything if I put enough effort into it’ was freeing. I’ll explain why;

Coming to the realisation that I can’t do everything I try

After a lifetime of feeling like I haven’t been achieving enough (through my grades, sport, etc.), last year I had to give up studying the course that would have led me to my dream career due to my health. I felt so dejected because all my life I had been taught that I can do anything if I try hard enough.

Why The "You Can Do Anything If You Try" Narrative Is Harmful to Chronically Ill and Disabled Youth

The thing is, I WAS trying. I was working myself into exhaustion, but it still wasn’t enough. I felt like I wasn’t enough. I felt horrible about myself, to the point of feeling depressed. However, I got back up and found another course that I would be able to study without having as big of an impact on my health. I still felt horrible, but I did my best and found that this course was a lot better for me.

Six months in, I came to a realisation. I didn’t fail at continuing with the previous course because I wasn’t trying hard enough, I failed at continuing because my health didn’t allow it. It wasn’t apathy on my part, it was an actual, physical limitation.

Once I accepted my limitations, this led me to become a lot more accepting of myself. I wish I had come to this conclusion sooner; it would have saved me a lot of heartache. 

Being told that I could do anything I wanted as a child set me up for a lot of disappointment. And despite how harmful this narrative is, I see evidence that it is still being told to children every single day. Here are some other phrases that are often directed at chronically ill and disabled youth that also fit within this narrative:

“The only disability in life is a bad attitude.” 

This one especially upsets me. It wasn’t a bad attitude that caused me to experience immense chronic pain on a daily basis starting in childhood. It isn’t a bad attitude that has left me using a walking cane most of the day to get around.

This phrase takes the word “disability”, a word that has a lot of meaning to a lot of people, and tries to change the definition completely. This phrase frames disability as apathy towards carrying out tasks, rather than an actual inability to carry out these tasks. 

The “What’s your excuse?” comparisons

You may have seen memes depicting disabled athletes, with phrases written across them saying things such as “what’s your excuse?” or even worse, “Your excuse is invalid.” These memes basically use disabled people to shame others (including other disabled people) into thinking they need to adopt certain habits or push themselves past their limits. 

Why The "You Can Do Anything If You Try" Narrative Is Harmful to Chronically Ill and Disabled Youth

I understand wanting to come up with a viral, inspirational meme, but chronically ill and disabled people should not be exploited in the process. I know able-bodied and disabled people alike who agree that these memes are very harmful, especially in an age where social media is such a huge part of our lives, even more so for the youth.

My “excuse”, as they put it in the second quote, is certainly not “invalid”. I will never be an award-winning athlete, as the constant pain and exhaustion make exercise difficult. I will never be an award-winning mathematician because the brain fog makes remembering formulas difficult. I’m ok with that.

As I said above, everyone has their own strengths and weaknesses. Just because one disabled or chronically ill person achieves something, does not mean every other disabled or chronically ill person can.

You can’t judge a group of people by the actions of a few, and they certainly shouldn’t be shamed just because a member of the community has achieved something that they haven’t. 

“There’s no such word as ‘can’t’”

This phrase confused me a lot as a child. Mostly because my young brain would take it literally, and I knew the word “can’t” did exist. When I was presented with this phrase, for the longest time I would go fetch the dictionary to prove them wrong.

It also confused me because I knew there were things that I, and other humans, couldn’t do. I can’t fly independent of a form of aircraft. I can’t breathe underwater without using a snorkel or oxygen tank. The word “can’t” doesn’t have to be a negative word attributed to pessimists, and knowing when to accept your limits shouldn’t be considered negative either.

Why The "You Can Do Anything If You Try" Narrative Is Harmful to Chronically Ill and Disabled Youth

“Don’t let your disability define you.”

Another phrase that is often said to chronically ill or disabled youth is that we “shouldn’t let our disabilities/chronic illnesses hold us back” or “shouldn’t let our disabilities/chronic illnesses define us”. I find this to be a very naive take.

Sure, we aren’t wholly defined by our disability/ies, but what we are able to do often is. There are ways to overcome these challenges, but only to a certain extent. There are some things that, no matter how hard you push yourself, you’ll never be able to achieve.

Accepting that isn’t letting your disability define you, it’s understanding your limits and knowing there are better areas to concentrate your energy. 

I’ve even had people tell me that I shouldn’t talk about my chronic illness or disability – at all. That talking about my chronic illness or disability is letting my health control me and consume my thoughts.

My disability is a part of me. I can acknowledge my disability’s effect on my life and be proud of what I achieve despite it without letting it define me. Not to mention, it’s hard not to think about your chronic pain when you experience it every minute of the day… But that’s easy to ignore, right?

While on the surface these phrases may seem inspirational, they may do more harm than good when it comes to disabled and chronically ill youth. They can lead to false hope, which can chip away at the young person’s self-esteem when they don’t achieve everything they aim to like it did to me.

Not everyone can do everything, no matter how hard they try. Instead, we should be encouraging disabled and chronically ill youth to try their hardest to achieve goals that are realistic, yet also push and challenge them at the same time.

If there’s one thing I want disabled and chronically ill youth to take away from this article, it is that you should feel comfortable doing what you CAN. With the help of those who care about you, set your own pace in life.

Push yourself, but not so hard that your goals become unachievable. Don’t let society tell you that trying your hardest isn’t good enough, because it is. Know that you are enough.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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To The People Who Think I’m Not “Independent” Enough (I’m Trying My Hardest).

Amy-Clements-To-the-People-Who-Think-Im-Not-Independent-Enough

As a young adult with chronic illness, I have received a lot of snide comments from people about their perception of my lack of independence. I also find that I receive snide looks when I let it slip that I require help with things that other people may not.

Amy-Clements-To-the-People-Who-Think-Im-Not-Independent-Enough

These snide comments or looks can come from anyone; whether it be family, people close to me, medical professionals, or even complete strangers. Independence can be difficult to retain and maintain when you have a chronic illness, and it doesn’t help when people point out that they think it’s lacking, especially if your independence is one of your insecurities 

Unsolicited Outside Opinions.

I recently saw a post online saying that the only way to help someone with chronic pain is to NOT help them at all. Apparently, if you do things for someone with chronic pain, they aren’t going to want to learn to do those things for themselves.

As someone with Fibromyalgia, I find this assessment extremely flawed. Sure, it may be accurate for those recovering from an injury or surgery, however, it is certainly not accurate for those with chronic illness. For many people with chronic illness, there is no recovery.

Sure, symptoms may become better managed, however, they may never go away. So, refusing to offer someone help when they do need it just because they may not need it in the future seems pretty illogical to me.

This isn’t the first time I have encountered people with this kind of thinking in my chronic illness journey. When I was about 13, my mother was told by an intern psychologist that the reason I didn’t do things around the house that ‘normal’ kids would do, such as packing their own lunch every single night or fetching dinner from the kitchen, was because I simply didn’t want to.

My mother was told that I didn’t struggle to move, I just had behavioural issues and lack of motivation. This obviously wasn’t true. My parents didn’t listen to this person, however, because they saw the slow progression of my condition. They saw the nights I laid curled up in a ball, whimpering or crying in pain, unable to move.

They saw how I became more and more dependent on my crutches (I’ve now switched to a walking cane) because I was in too much pain to bear my own body weight. I’m so glad my parents did what they knew to be right for me, as it was only with their help that I was able to make it through high school without becoming more overcome with fatigue than I already was.

Moving Out of Home.

Moving out of my parent’s home was a massive step for me when it came to gaining more independence. It felt good because I was doing something completely for myself. I searched for flats, I wrote up budgets and did everything else that came with planning to move.

It all seemed to be coming together perfectly. It was during the first few weeks of moving that I received my first reality check. Moving my stuff from my parent’s place was both time consuming and extremely exhausting. I needed a lot of help and my pain levels skyrocketed, both from the physical task of moving as well as the stress.

Once I was finally settled, I realised I was drowning in all the housework. I was pushing myself to my limit and not really getting anywhere. It wasn’t long before I realised that no matter how hard I tried or wished it was so, moving out of home didn’t make me require help any less.

It really struck me one night when I was lying in bed, having a pain flare, wishing I had the energy to get up and get my medication. I was far too sore to move, and I didn’t have anyone to ask to for help like I would have at home. I felt extremely lonely, and I cried myself to sleep that night.

Relying on My Mother for Care.

Despite the fact that my mobility is hindered due to my chronic pain, I do not fit the criteria for a caregiver. I was refused carer hours when I applied for it after my 18th birthday, and again after I moved out, despite the fact I had received carer hours prior to my 18th birthday.

They apparently don’t provide help to people over 18 who don’t have a diagnosis that is on their checklist, no matter what the person’s physical ability is. At one stage I was even told: “well if you were diagnosed with [insert diagnosis with similar symptoms to mine] we’d be able to help you.” 

As a result of this, despite me not living at home, my mother drives me around, does my washing, and helps me tidy my room. I feel bad for needing her help because she has two boys to look after, both of which have autism as well as one of them having a Chromosome Deletion.

However, I have no choice. I am in a place where I simply can’t do these things for myself. Believe me, I’ve tried. Just this morning I started tidying my room before my mother arrived to help hang up clothes, and by the time I was finished, I was shaking with exhaustion.

I could barely hold myself up in a sitting position, despite the fact that all I had been doing very little activity. My mother is honestly my hero. I wouldn’t be able to function without her.

Not long after my application for carer hours was denied after moving out, I was talking to someone about how I had been refused help and how I was frustrated. When I tried to explain my situation, they replied: “well, maybe it’s because they want you to be independent.” I was shocked.

This implied that I was choosing to be dependent and that I could just switch my dependence off. I was torn between wanting to laugh and wanting to cry. 

I would be fully independent if I could.

People with chronic illness don’t ask for help ‘just because’. They ask because they need it. This idea that the chronically ill should be left to do everything for themselves is extremely harmful.

Sure, there are the people who have chronic illnesses who are fully independent, and I respect them for it. However, not everyone can manage that. One thing that I don’t think people that haven’t experienced chronic illness (first or even second hand) understand is that if I could do these things for myself, I would.

I’d have my driver’s license, I’d be living in a student apartment on my own all the way across the city, and I’d be studying full-time, doing the course I dreamed about throughout high school that I had to give up due to my health. 

The one message I want to convey in this article is that my dependence is not a choice. It’s me doing the most that I can.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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The Side Effects Of Having Fun When You Have A Chronic Illness

I guess you could say that I have the interests of an average 19-year-old girl. I like to read, watch makeup tutorials, and binge watch series on Netflix. I also enjoy hanging out with friends and socialising, when I have the energy to. Having struggled with the chronic pain of Fibromyalgia since childhood has shaped my adolescence in many ways.

The Side Effects Of Having Fun When You Have A Chronic Illness

An Average Girl

There are so many things that I wanted to do but couldn’t. I wanted to play sports throughout high school, I wanted to go overseas for a gap year after graduating, and I wanted to study Speech-Language Therapy at university once I got back. As a result of my chronic pain, none of these things was meant to be.

While this upsets me, I do everything that I can to ensure that my chronic pain limits my day-to-day life as little as possible, especially my social life. Besides just hanging out, something I love doing with my friends is going out dancing. As you can imagine, dancing (or more like swaying side to side, in my case), is exhausting.

Going out for a single night of dancing can leave me flaring for up to a week afterwards. Another thing I like to do, that I don’t do nearly as often as dancing, is going to the theme park. This can easily become a full day affair. The constant walking along with the jarring of the rides can leave my entire body aching for days.

Some people may scoff at my enjoyment of these activities. After all, why would I do something that causes me pain? The answer is this: everything I do causes me pain. I’m in pain every second of the day. I’m in pain while I walk, I’m in pain while I sit, and I’m in pain while I rest.

When pain and/or fatigue rules your life so thoroughly, it can become a goal to not let it stop you from having fun. It’s almost as if I have something to prove to myself; that I won’t let the pain take my ability to have fun away. And luckily, it hasn’t. However, having fun with chronic illness can often cause side effects.

The Pain In The Moment

For me, the pain that I experience in the moment of doing an activity can definitely put a damper on any fun I may be having. As the day develops, my pain slowly gets worse. Having pain in one area is bad enough, however having pain that is spread throughout your entire body can be so incredibly overwhelming. The pain can sometimes result in me unconsciously becoming very grumpy, which can ruin the rest of the day.

Not only does pain impact any activities I take part in, but it also prevents me from doing specific activities that I would otherwise want to do. Despite me enjoying being active (it’s the resulting pain that I don’t enjoy), I can’t take part in activities such as hiking and kayaking because they raise my pain to unbearable levels.

Of course I often I push myself to do activities that I know will result in heaps of pain, however, it becomes a fine balance between being able to barely cope with the pain, and curling up in a ball, moaning as pain consumes me. I like to avoid the latter option.

The Side Effects Of Having Fun When You Have A Chronic Illness

Brain Fog

Another symptom that can ruin my fun is brain fog. For me, brain fog is very distracting, especially if I’m out trying to have fun. I feel like no matter how hard I try to concentrate; I can’t think or talk straight. Most of the time I have brain fog I feel like I can barely string a sentence together, that I’m talking nonsense.

When the brain fog is at its worst, I feel like my mind and mouth are numb. I can’t bring myself to speak, no matter how much I want to. I also can’t process what people are saying to me easily. Since this level of brain fog only occurs when I’m in very extreme levels of pain, I normally have warning signs leading up to this and can get myself home before I lose the ability to communicate.

The Recovery Time

Depending on how much energy I expend on an activity, my recovery can take anywhere from 3 days to an entire week. If I continually exhaust myself day after day without resting for a few or more days, I can be left feeling ill for weeks. I have learned this the hard way.

Every person with chronic illness has different symptoms that they experience during their ‘recovery period’. These symptoms can include muscle cramps, fever, flu-like symptoms, migraines, and of course likely the most common one, fatigue.

Recovery for me usually consists of lying in bed, too tired and too sore to get up for anything that isn’t imperative. I get an ache that is somehow both dull and sharp throughout my entire body and having such widespread pain only adds to my exhaustion.

So far, besides medication and rest, I haven’t found anything that helps with this kind of pain once it’s occurring. As a result of this, whenever I am planning something that I know will leave me flaring, I try to make sure that I don’t have any responsibilities (such as exams) or events for at least three days after the activity. That way, I can recover without missing out on something important or having to push myself.

The Guilt

I worry that whenever I’m seen out having fun, or whenever I post a picture of myself having fun on Instagram or Facebook, that people may see this as evidence that I’m not sick or that I’m making my symptoms up. In some countries, the social media accounts of chronically ill people are being used to determine whether or not they are “sick enough” to receive disability cheques from the government.

I find this ridiculous as I’m more likely to post a photo of myself on the rare occasions that I’m dressed up to go out, then I am to post one when I’m at home, barely able to move because of pain. Going out and having fun when you have a chronic illness a bit of a catch-22.

If chronically ill people don’t do enough, then they’re called lazy. If they do too much, then they aren’t sick anymore. Having a chronic illness and going about life is hard enough without having to face the judgement of others.

The Side Effects Of Having Fun When You Have A Chronic Illness

How To Have Fun With Fewer Side Effects

When I want to spend time with my friends but I’m flaring badly, I invite a friend or two over for a sleepover or a movie and some drinks (the legal drinking age is 18 here). It may seem kind of juvenile, but I will never get too old for sleepovers. This way, I can sit on the couch or lie in bed while catching up with besties. This is also a great time to catch up on Netflix movies.

If there’s no way to avoid a lot of physical activity that day, I make sure to keep my medication on me in case my pain levels become high.  Keeping your medication on you guarantees that if you need it for whatever reason, you have some on you.

Another tip for high activity days is if you are easily exhausted, don’t be too self-conscious to use a walking or mobility aid. My walking aid of choice is a walking cane, since it’s less harsh on my shoulders and back then crutches. Since the common stigma for walking canes is that they are exclusively for use of the elderly, I used to push myself too far because I was worried I would be judged for using a walking cane.

If the place we’re attending has a wheelchair that can be loaned out, such as a mall or a zoo, I will borrow the wheelchair if I know that I’m going to have a rough pain day. I don’t have a wheelchair (for ambulatory use) of my own yet, however, it is definitely a goal of mine.

If you’re heat/sun sensitive, try to choose activities where you can spend a lot of time in the shade. If sun hats and sunglasses help, make sure to keep some on you. Also, no matter what your symptoms are, keeping hydrated is important for your general daily well being. Make sure that you keep a bottle of water on you if you’re going to be out of the house for more than an hour at a time.

Having fun when you have a chronic illness can be very difficult, however, it is so important. It is easy to think that chronic illness takes the fun out of life, however, that isn’t the case. While I’m in pain every second of every day, I still aim to make the best of the life I’ve been given.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Tips and Tricks for Studying With a Chronic Illness

Since I first started complaining of experiencing Fibromyalgia symptoms such as chronic pain at the age of 7, attending school has progressively become more and more difficult. Now, 12 years later, I experience constant widespread pain and fatigue. Despite the constant pain that is undoubtedly made worse by me attending university, I still love studying.

I’m the kind of person that enjoyed attending school as a child, and since I’ve been signed off work by my doctor, I feel like I’d be incomplete without study. Distance study could be an option for me since I become exhausted easily, however, I find that I don’t have the same motivation to complete work that I have when I attend classes at a campus.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

I find that I have the mindset of if I travel into university, I may as well make the trip worth it by getting as much work done as possible. Plus, despite how boring they can be, I love the vibes of lectures and tutorials.

Please keep in mind that since I live and attend a university in New Zealand, some of these tips and tricks may not be applicable internationally. However, I hope that some of these tips and tricks are helpful to any students with chronic illness who may be reading this article.

Don’t Discount The Option Of Part-time Study

When I was first applying for university, I didn’t want to think about part-time study. I thought that because I (barely) managed full-time study through high school, I should be able to manage full time at university too. Basically, I was in denial. I thought that studying part-time would mean that I wasn’t coping as well as I should be and that I would be less of a student.

Luckily, I was turned down for the full-time program I had applied for, so instead, I had to do a part-time, four days a week program for a year to see if I would cope with the difficulty of the classes. While I did pass my classes during that year, the four-days-a-week schedule was very stressful and caused my health to go downhill. 

Due to this, I had to dismiss the full-time program as an option for the next year, despite it being the only program that would give me the qualifications I need for my dream career. When I first had to come to terms with this it was a little heartbreaking. It felt like my dreams and aspirations were crumbling down around me. I now am studying part-time, three days a week in a completely different field. And while this is still difficult for me, I am far more comfortable attending university than I was before.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Contact Disability Services At Your Institution Of Study

When I first started applying to universities during my final year of high school, one of the first things I did was check out their Disability Services and the application process. I had been under the high school equivalent, which, I was told, considerably increased my chances of being accepted by the service. Being under similar services at high school gave me insight as to what to expect and what assistance I may be able to ask for.

The application process was pretty simple. I was given a form to fill out, which required not only a doctor’s input as to what assistance I required but also allowed me to write a paragraph myself about my chronic pain and how it affects my studies. I also attached some notes from my Chronic Pain Clinic Physiotherapist, who I had been seeing for the past two years at that stage, to add further context to my application.

Disability Services has helped me with many things. They have made sure I have a supportive chair in the classes that allow it, and exam considerations such as rest breaks (due to my back pain) and extra time (due to me having Complex Regional Pain Syndrome in the wrist I write with, and brain fog causing concentration issues). I definitely recommend checking to see if this is an option available to you at the institution you attend.

Don’t Be Too Self-conscious To Use A Walking Aid If You Need One

I have been using a walking cane since I was 16. Before that, I had been using crutches constantly to help cope with my hip, knee, ankle, and back pain. I switched to a walking cane because crutches became too harsh on my back and shoulders, causing too much pain to make using crutches worth it. 

Being a young person who uses a walking cane, there are times when I can become very self-conscious, especially around other people my age. As you can imagine, this left me very anxious about the prospect of using my walking cane at university. However, I realised that I do need the walking cane to get through the day without collapsing from pain and exhaustion, so I decided that what other people thought of me didn’t matter.

Since my pain levels fluctuate, I love using a walking cane that folds up. This means that I can pack it away in my bag when my pain levels are lower, and then bring it back out when my pain levels are high.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Set Daily Or Weekly Study Goals Instead Of Schedules

Many students like to create an hour-by-hour schedule for completing their assessments and studying content from their lectures. However, when you’re in constant, fluctuating pain, this may not be manageable for you. For me personally, setting a schedule would be like setting myself up to fail, because my pain levels are never at a constant level (unless I’m having a really bad day and the pain is constantly high).

So, say I schedule an hour of study for 4:00pm. I may be feeling ok that morning, but by 4:00 I may be so tired and sore that I can’t concentrate. Instead, I like to set goals such as reading a chapter of a textbook a day leading up to an exam or aiming to complete a certain amount of an assignment within a certain amount of time.

During a particularly bad flare, I may not be able to achieve these goals, but when I’m not in extreme amounts of pain, these goals make studying while in pain achievable.

Keep Your Medication On You

I’m often guilty of forgetting to do this. While I take two large sets of pills first thing in the morning as well as at night, I also take pain medication during the day if required. I find it is far better to have my medication with me and not need it than it is to need my medication and not have any on me. 

Since I travel two and a half hours each way to get to my university, the chances are high that I’ll need medication at some stage during the day. Being in too much pain can seriously affect my ability to pay attention in class and take notes, which in turn can put my grades at risk.

For this reason, it is imperative that I don’t forget to pack a sleeve of pain pills in my bag. I also love taking a small tube of Voltaren Emulgel with me to university. It is great for massaging acute aches and pains and works especially well on the swelling I get in my wrist.

Explore Your Campus And Find A Place You Can Rest In Between Classes

If you don’t live on campus and suffer from fatigue, this tip can be incredibly useful. My favourite space to rest at university is a room in the library that has couches and large bean bags. If a bean bag is available, I can put all my stuff down, lay back, and relax. This space also allows eating and drinking, so I can eat lunch and chill in this space.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Stay Hydrated

This tip may seem extremely obvious to people, however, I am often guilty of not drinking enough. I personally like to pack a water bottle that is at least one litre in my bag. While staying hydrated isn’t going to cure your symptoms, it does help with your overall feeling of wellness.

Use An Online Editor For Your Essays 

This is honestly a life-saver when it comes to handing in essays. Often when a deadline is looming and I’m finishing off my assignment, my stress levels rise, and as a result, my pain and fatigue levels also do too. This can lead to me experiencing brain-fog as I write, which can result in anything from grammar mistakes to me writing utter nonsense without realising it.

Using a free online editor program such as Grammarly, I can detect any grammar, spelling, or punctuation errors and correct them.

Pace Yourself

It’s very easy to think you can push through your pain, but then you may end up pushing yourself too hard. It can be so incredibly tempting to “boom and bust”, this, however, can cause more harm than good, especially to your health. For the good of your health and grades, try not to take on too much work at once.

While attending University is definitely a struggle, I absolutely think it’s worth it. It gives me a sense of purpose that I may not have otherwise, and a chance to socialise and expand my knowledge. I hope these tips are useful to any students with chronic illness, and I wish you all the best with your studies.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Finding My Confidence To Speak Up As A Child With Chronic Illness

Finding My Confidence To Speak Up As A Child With Chronic Illness

I like to think of myself as a little bit out-spoken yet still sensitive. If something is bothering me, I will let people know. However, looking back on myself growing up, I remember being too scared to speak for myself in doctors appointments, especially as a preteen/teenager. I always let mum do the talking on my behalf. 

It was recently after a doctors appointment that I was thinking about this. I looked back on these memories of my fear with confusion, as this didn’t match my personality at all. I then asked mum if I had always been that scared to speak for myself. My mum replied that no, I had not always been that way. She told me that at the beginning of my chronic pain journey in 2007 I was perfectly happy to speak for myself and explain what my problems were, even to doctors I had never met before. I was 7 years old. I had innocently believed that as long as I told the truth, they’d believe me. That soon changed.

Finding My Confidence To Speak Up As A Child With Chronic Illness

My Journey Towards A Diagnosis

I had been complaining of constantly being in pain, so my parents got me seen by a pediatrician at the (then) local hospital in 2007. I was 7 years old and my youngest brother had just been born. At this pediatrician appointment I was told that I was making the pain up because I was jealous of the attention that my baby brother was getting. This, of course, was not the case.

The loss of my confidence was gradual, and my parents noticed that I started talking less and less in appointments every time I was accused of lying.

I then went to see another pediatrician at the same hospital in 2008 because the pain was getting worse. Again, I was told that I was conning my parents because I was jealous of my youngest brother.

We then had to move cities due to my father changing jobs. After we moved, my pain got so bad that my parents took me to the emergency room in search of help in 2009. After I was hospitalised for about a week and an investigation into my pain was done. I was then referred to the Palliative care team at my local children’s hospital. There was no apparent cause of my pain, so the doctor referred me on in the hope that the team would help manage my pain. This, however, didn’t happen. I was told during these appointments that I was not in pain at all, and that my mother had put the idea that I was in pain in my head. This was the tipping point for me, and from then on I completely stopped speaking in doctors appointments. At this stage I was 9 years old.

Being called a liar to my face over and over broke my confidence down until I just let mum do the talking at every appointment. I would tell her what I wanted to be said before we got there because I thought they wouldn’t believe what I had to say if I said it. Even as a teen, when a doctor asked me a question, I would look to mum for help. Doctors would then tell me off for not being able to talk for myself.

This just caused me to shut down further. Experiences of medical professionals doubting my pain continued throughout my preteen and teen years, and I continued to be accused of lying and faking. Of course, not every doctor or medical professional was like this, and many did believe me. However, the times that certain ones didn’t stuck with me.

After years of perseverance in finding an answer (approximately 6 years), we found out I had Fibromyalgia, and that that was the source of my pain. I also developed CRPS (Complex Regional Pain Syndrome) in my wrist during my teens. My wrist pain was also dismissed by certain doctors until an MRI was done that found bone swelling in that area.

Finding My Confidence Again

It wasn’t until I was about 15 that I decided I was determined to speak for myself again. I realised that I was suffering unnecessarily because I didn’t have the courage to say what needed to be said. I decided that I wouldn’t let ignorant people from my past affect my future. My mother and I discussed it, and while she had been encouraging me to talk for myself for years, we decided that she would now remain silent during my appointments unless there was a question I genuinely couldn’t answer. This, in a way, forced me to talk. I was uncomfortable, but I knew that it was for the best. By the time I turned 18 I had found my voice again and had regained the confidence that I hadn’t had since I was a young child. During this process I did encounter more ignorant people, however, I stayed true to myself and didn’t let that stop me from saying what needed to be said.

Finding My Confidence To Speak Up As A Child With Chronic Illness

How To Make The Most Of Your Voice

There are techniques that I have learnt that help me make the most out of my appointments. I find that doing these things increases my confidence during appointments even now.

  • If I have multiple things I want to discuss in an appointment, I’ll make a list in the Notes app on my phone so that I can go over the list during the appointment. My memory is terrible, so this is the only way I know that I won’t forget anything.
  • If I’m going to a doctor that I’ve never been to, who doesn’t have access to my GP office’s file, I make sure to have a list of all my medication and my doses with me. This makes it easier for me if I’m experiencing brain-fog during the appointment.
  • Don’t try to downplay your symptoms to appease your doctor. I have done this many times because I was worried I would be told I was overreacting after being told that in the past.
  • If appointments make you nervous, take a friend or family member with you. Even now at 19 years old, though I’m confident in speaking for myself again I still ask my mother to come along to certain appointments with me as my advocate. 

A part of me still fears that I will be called a liar again like I was as a child. Those experiences hurt me deeply, and they damaged a part of me that I’m still trying to heal. I’m lucky enough to now have a GP I like and a chronic pain physiotherapist who listens, so I don’t have to worry about not being believed as much anymore. I sometimes wonder if my pain would be as severe as it is if I had actually been listened to earlier on. Would my pain pathways have developed differently with earlier treatment? That I’ll never know.

Please, don’t let your voice be taken away from you like mine was from me. 

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Growing Up With ‘Painsomnia’ And The Coping Techniques I Have Found Along The Way

Growing Up with ‘Painsomnia’ and the Coping Techniques I Have Found Along the Way

Painsomnia, a combination of the words ‘pain’ and ‘insomnia’, is often used in the Chronic Illness community to describe the inability to fall or remain asleep due to suffering physical pain. People with Chronic Pain can often experience painsomnia, which can result in chronic fatigue.

Experiencing Painsomnia as a Child

I was about 7 years old when my parents first became worried that I was complaining of being in pain far too often. I complained that my back and hips hurt, and nothing seemed to ease the pain. My parents would struggle to get me to sleep every night. My mum tells me that I would constantly get in an out of bed, and they would often give me paracetamol and send me back to my room. All the tests that I underwent came back clear.

I remember nights when I would lie awake in bed before I even hit the age of 10, crying my eyes out, praying to God to take my pain away. I often wouldn’t settle and fall to sleep until about 11:00 pm. This, as you can imagine, left me very tired in the mornings, and it became a mission for my parents to get me out of bed and to school. I was a kid, and I didn’t understand what was causing my pain and why.

Growing Up with ‘Painsomnia’ and the Coping Techniques I Have Found Along the Way

Middle School Years

Skip forward to when I was about 11 years old. My pain had spread throughout my body, and I was no closer to getting answers as to why. After having coped with chronic pain for 3 years at that stage, I became burned out. Painsomnia was definitely a factor in this. I even started falling to sleep in class, despite the fact that I saw myself as a dedicated student.

As a result of my health, my parents enlisted me in a partial home-school program that was run by the public health service for children with health issues. This resulted in me only going to school 2 or 3 days a week. Before I reached high school, they slowly increased my hours at school again until I was back to attending school full time.

Around that age was when I finally received the closest thing to an answer I may ever get. One word; Fibromyalgia. This, along with CRPS (Complex Regional Pain Syndrome, which I was diagnosed with after an injury to my wrist that occurred when I was 13) is the source of my painsomnia.

Experiencing Painsomnia During Highschool and University

As I got older, my pain got worse and became more constant, until there wasn’t (and still isn’t) a moment of the day that I wasn’t in pain. Due to my increasing levels of pain, my painsomnia got worse. As a result of my painsomnia worsening, my level of chronic fatigue increased. And as a result of the increased fatigue, my pain got worse. It’s a vicious cycle.

It was during high school that I was introduced to some more of the symptoms that come along with painsomnia; I often found it difficult to concentrate during class and my memory suffered. This made studying for subjects such as the sciences and Calculus very difficult. Though I enjoyed these subjects, my grades weren’t all that high because absorbing the information was extremely difficult for me. I found that I did better in my more creative classes such as Photography, English, Graphic design, and Fabric technologies.

I fought my way through high school, and while at the beginning I constantly had sick days, by year 13 (my final year of high school) my attendance was above 90%. It wasn’t easy. Every day once I got home from school I was exhausted beyond belief. I could barely get out of bed for dinner. Luckily, my parents understood and weren’t too hard on me about my lack of extra-curricular activities. While at school I spent a lot of time in the nurse’s office, taking painkiller as prescribed every lunchtime and resting with a heat pack when the pain became too much.

Present Day

Skip forward to now. I’m 19 years old, and my sleeping patterns are tragic. I head to bed between 10-10: 30 pm. I then lie in bed, either reading or watching YouTube videos (with my phone on Night Mode) until I’m tired. Often, I may not become tired until 1:30-2: 00 am. To someone who does not experience painsomnia, this may seem like a very bad habit.

Growing Up With ‘Painsomnia’ And The Coping Techniques I Have Found Along The Way - woman awake in bed at night

However, if you suffer from painsomnia. no matter how early you go to bed or how strict you are about avoiding stimuli before bed, you aren’t going to fall asleep until you’re so incredibly exhausted that the internal war between sleep and pain finally comes to an end for the night… At least, until your pain wakes you up again during the night and the cycle begins anew. For me, distracting myself from my pain until I become tired helps me to fall to sleep much faster than when I lie in complete darkness, having nothing but my pain to focus on.

If left uninterrupted, after a late night of experiencing painsomnia I can easily sleep in until 10.30-11.30am. However, life doesn’t always allow that. Not only do I attend University on average 3 days a week, I also have to do everyday tasks such as shopping and errands that mean I don’t get to sleep in as long as I may like to.

My worst nightmare is 8:00 am classes at Uni. I live 2 hours and 30mins away from my uni by public transport. Once you factor in a 30 min leeway in travel plans (in case of transport failure) and time to get ready in the morning, this can result in a 4:00 am wakeup. This can leave me absolutely exhausted for the rest of the day, which of course impacts my ability to absorb the information that is presented in class.

Regardless of whether I wake up early or sleep in, I still struggle with my concentration and memory. This makes studying at University a challenge, but I plan to fight my way through it, just like I did in high school.

Techniques I Use to Cope with Painsomnia:

While painsomnia can often be inescapable, I have formed some techniques over the last decade that help me cope with it. The first is microwaveable heat packs. These are little fabric cases that are often filled with wheat that you can stick in the microwave and put on your sore spots. The warmth from these heat packs can help reduce the pain, muscle stiffness, and muscle spasms that may be the cause of your painsomnia. Alternatively, if you find cold more therapeutic than heat, you could use ice packs.

The second thing that helps me cope with painsomnia is me taking a magnesium supplement at night, which was suggested by my doctor. Magnesium supplements support deep and refreshing sleep, can reduce stress, and can also help with restless leg syndrome. If you think magnesium supplements may be beneficial for you, check with your doctor or pharmacist to ensure they will not react with any other medications or treatments you may have. 

Another technique I recently discovered that assists me falling to sleep faster is listening to ‘sleep music’ as I try to fall asleep. Listening to slow, soothing music before falling asleep can help you fall to sleep faster and wake up less during the night. When I first decided to give this a go, I searched “sleep music” on YouTube, and listened to a few different tracks until I found my favourite one. It runs for 3 hours, so it even runs after I’m asleep (unless I’m experiencing severe painsomnia).

The last, and probably the most obvious, coping technique is napping during the day. Napping isn’t just for young children. Napping, especially when you’re experiencing chronic fatigue, can increase your concentration, can improve your mood, and can reduce stress. If you’re having a busy day, and know you have to be at your best in the afternoon or the evening, a nap can leave you refreshed.

Dealing with painsomnia on top of your other chronic illness symptoms is exhausting. Especially so for a child. I’ve dealt with painsomnia for around a decade now, and though I haven’t yet gotten rid of it, I have discovered techniques that can help me, and that will hopefully help you, cope with it.

About The Author:

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Complex Regional Pain Syndrome

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What is Complex Regional Pain Syndrome?

By Lisa Hurley

 

Complex Regional Pain Syndrome (CRPS) is a rare, progressive,  neuropathic condition related to peripheral nerve injuries. It is considered to be the most painful chronic pain condition known to modern medicine.  CRPS has historically been known as Algodystrophy, Causalgia, Neurodystrophy, Post-traumatic Dystrophy, Reflex Neurovascular Dystrophy (RND), Reflex Sympathetic Dystrophy (RSD), and Sudek’s Atrophy, however the International Association for the Study of Pain has standardized the name to Complex Regional Pain Syndrome in order to simplify and standardize diagnoses but you will sometimes still hear the disorder called by these alternate terms today.

 

The precise number of CRPS sufferers is unknown, however Physiopedia.com estimates that the syndrome affects 26 of every 100,000 people. Although CRPS can occur anywhere in the body, it is most frequently diagnosed in the extremities such as arms, hands, legs, and feet.

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What causes CRPS?

In most cases, the condition is caused by some form of physical trauma to the body that adversely affects the peripheral nervous system. For example crush injuries, blunt or sharp-force trauma, prolonged immobilization, surgery, amputations, fractures, falls, strokes, heart attacks, or even bad sprains can result in a patient developing Complex Regional Pain Syndrome.

There are still some cases of CRPS that are not the result of either trauma or an identifiable nerve injury. These are most often attributed to an exaggerated immune system or inflammatory response.

Are there risk factors?

According to the National Library of Medicine at the U.S. National Institue of Health (NLM/NIH), risk factors for the condition can include ACE-inhibitor therapy, asthma, elevated intracast pressure, migraine, menopause, and osteoporosis. In addition, smokers are likely to have a higher risk factor vs. non-smokers.

Who gets CRPS?

There are no known age, gender, or genetic restrictions on who can develop CRPS, but the condition occurs most frequently in people ranging in age from the mid-30s to early 40s, and is three times more likely to occur in women than men. CRPS is rare among very young children (under 5 years old), and in the elderly (over 70 years old).

Types of CRPS

There are two major forms of CRPS: Type 1 and Type 2. Both types occur most frequently in the extremities of the body, although there have been cases of the condition spreading to other areas. The main difference between the two forms lies in how they develop:

     Type 1 CRPS occurs after an injury or illness that did not directly damage the nerves in the affected limb; that is, trauma occurs remotely from the affected area. This form of the condition used to be known as Reflex Sympathetic Dystrophy Syndrome. This is the most frequently occurring form of the condition.

     Type 2 CRPS results from a direct injury to a major nerve of the affected limb. This form of the condition used to be known as Causalgia, and is more rare than Type 1.

What are the symptoms of CRPS?

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As its name implies, Complex Regional Pain Syndrome is characterized by a variety of symptoms, including but not limited to pain (clearly), sensory disturbances, autonomic disorders, inflammatory responses, trophic changes, and motor dysfunction:

  • Pain
  • Burning, neuropathic, dull, spontaneous and/or constant. Sometimes triggered by movement, pressure, or loud noises.
  • Sensory Disturbances
  • Allodynia, or pain from stimuli that ordinarily would not cause pain. Allodynia can be tactile, thermal, or mechanical.
  • Hyperalgesia (Patient becomes more sensitive to painful stimuli due to the use of opiod pain medication.)
  • Hypersensitivity of the skin, even to very light touch/sensation from stimuli such as air or feathers.
  • Autonomic Disorders
  • Color changes is skin (very red, or very pale).
  • Hyperhidrosis (excessive sweating) and other changes in perspiration.
  • Cold, clammy skin on the affected limb.
  • Abnormal blood flow to the skin of the affected area
  • Inflammatory Responses
  • Increased temperature.
  • Edema.
  • Swelling.
  • Erythema (reddening of the skin).
  • Trophic Changes
  • Hair growth markedly increases or decreases.
  • Nails become thick and brittle nails.
  • Skin becomes smooth, clammy, thin, mottled.
  • Fibrosis.
  • Osteoporosis.
  • Acute arthritis.
  • Motor Dysfunction
  • Muscle weakness and stiffness.
  • Reduced range of motion.
  • Tremor.
  • Stiffness.
  • Atrophy.
  • Dystonia (involuntary muscle spasm).
  • Loss of the ability to move the affected limb.

What are the Stages of CRPS

The syndrome typically develops in three phases:

 

Stage 1 usually begins a few days after the trauma, injury or surgery, and lasts up to six months. It is characterized by:

  • extreme pain
  • a burning or aching sensation
  • edema
  • accelerated growth of the nails and hair
  • changes in skin color & temperature

 

Stage 2 usually begins three to six months after the initial onset of pain, and lasts for about six months. Symptoms             during this phase include:

  • increased, constant pain
  • reduced muscle tone
  • joint stiffness
  • rigid, thinning nails
  • osteoporosis

 

Stage 3 typically starts six to twelve months after the initial experience of pain. This stage can last for years, and there is     also the possibility that the condition might resolve and reappear later. This phase is characterized by:

  • Stiffer joints
  • Pain over a wider area of the body
  • A plateau in pain intensity
  • Stiffness/immobility of the affected limb
  • Additional loss of muscle tone
  • Contractures
  • Cool, thin, dry skin

What does CRPS pain feel like?

In terms of intensity, CRPS pain is ranked 42 out of 50 on the McGill Pain Scale—more painful than having a finger amputated without anesthesia.

In terms of sensation, many CRPS sufferers describe the pain as being significantly out of proportion to the original injury. The pain is also described as intense, burning, and constant.

 

What Treatments are available for CRPS?

 

Treatment protocols for Complex Regional Pain Syndrome typically involve a synergistic combination of physical and occupational therapy, pain management/medical therapy, and psychological therapy, designed to reduce pain, increase mobility/function, and improve quality of life. This partial list of some therapies that have been used can serve as a reference that patients can use when consulting with their medical team:

  • Physical/Occupational Therapy
  • Contrast baths
  • TENS (Transcutaneous Electrical Nerve Stimulation)
  • Massage
  • Stretching
  • Ultrasound therapy
  • Isometric strengthening exercises
  • Gradual weight bearing/stress loading
  • Aquatic Therapy
  • Mirror-Box Therapy
  • Lymphatic drainage
  • Desensitization therapy
  • Endurance training
  • Functional training
  • Acupuncture
  • Medical Therapy
  • Opioids
  • Cortico-steroids
  • NSAIDs
  • OTC pain medications
  • Intravenous ketamine
  • Anti-convulsants
  • Nerve-blockers
  • Anti-depressants such as SSRIs and TCAs
  • Sodium-channel blockers
  • Calcium-channel blockers
  • Sleeping aids
  • Topical analgesics
  • Spinal cord stimulation
  • Psychological Therapyfriends
    Chronic, intense pain can have an adverse impact on a patient’s mood, and quality of life, as it can be emotionally burdensome to deal with the effects of the pain. Psychological therapy should therefore be included as a part of a patient’s treatment regimen as early as possible after diagnosis.
  • Talk therapy
  • Cognitive Behavioral Therapy (CBT)
  • Alternative Therapies
  • Meditation
  • Relaxation techniques

Is there a Cure?

There is no known cure for Complex Regional Pain Syndrome, but early diagnosis and a well-planned, multi-disciplinary treatment protocol can make a positive difference. In addition, having a strong support network can help. Staying connected to loved ones, joining a support group, and participating in talk therapy can help patients cope.

 

 

Lisa Hurley is a writer, Reiki practitioner, and certified sun-seeker. She is originally from Barbados, and now lives in Jersey City, New Jersey with her Jack Russell terrier King. She also happens to have an invisible illness (uveitis), and a chronic pain condition. She is passionate about helping other chronic pain warriors find the information they need to navigate their struggles, and feel stronger, more supported, and less alone.
Lisa’s educational background includes a Bachelor’s in French, Spanish & Linguistics from the University of the West Indies, a Master’s in Music Business from New York University, and a Mini-MBA™ in Social Media from Rutgers University.
If you’d like to connect with Lisa, you can find her on Instagram, Facebook, and LinkedIn.

 

Sources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5244710/
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-

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Complex Regional Pain Syndrome

CRPS Header

The disease Complex Regional Pain Syndrome (CRPS) is a rare nerve disorder. Its symptoms usually cause intense pain, and affected areas are typically the hands, arms, legs and feet. It usually appears after a serious injury to the tissues or nerves in the affected areas. The disorder is also called Causalgia. Some changes observed in the affected areas are changes in the color and temperature of the skin of the affected limb. Other symptoms can be skin sensitivity, intense burning pain, swelling and sweating. The reasons the disorder occurs are currently unknown. Although there are some theories behind the cause of this disorder, the authenticity of them is questionable. One theory is that the pain is caused within the sympathetic nervous system. Another speculation is that CRPS is caused by triggering the immune response, leading to inflammation in the affected area.

 

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Occurrence and Treatment

CRPS is rare, estimates range from one in 4000 in some countries and one in 18,000 in others (approximately 1 in 11,000.) It is most common among women between the ages of 50 and 70.
Although it is a rare disorder, most doctors are familiar with it. The doctor will diagnose CRPS based on a physical exam and the pain symptoms, and look at the skin temperature and blood circulation. Although the disease is diagnosable, there is not a single test that can determine CRPS. An MRI can help to make the diagnosis.

Treatment is often a sympathetic nerve block, involving an injection of anesthesia, which blocks pain signals. Often, physical therapy and counselling may also help.

 

Types of CRPS

There are two types of Complex Regional Pain Syndrome, with different triggers.
Type One CRPS is triggered by injuries such as sprained or fractured ankles. There is usually minimal nerve damage. Type Two CRPS is caused by more serious injuries where there has been nerve damage, such as from an operation, serious infection or broken bone.

 

Clinical Features of CRPS

CRPS patients usually have a history of an inciting event, such as a nerve or tissue injury (sprain, fracture, surgery) or a period of immobilization. In most cases, the severity of the clinical presentation is disproportionate to the inciting event. The syndrome may also be triggered by stroke, spinal cord injury, visceral disorders such as myocardial infarction and cholecystitis, or more trivial events, such as bruising, and venipuncture (blood draw or injection.) Prolonged use of a surgical tourniquet and psychological stress have also been implicated. Interestingly, some patients with neck pain after whiplash injury exhibit features of CRPS including dystonia.
Patients with CRPS typically present with neuropathic-type pain (tearing, burning, shooting or aching), allodynia (mechanical and cold stimuli), hyperalgesia, oedema, vasomotor changes (constriction or dilation of the blood vessels), sudomotor changes and in severe cases, dystrophy and atrophy of the nails, skin, hair, muscle or bone. Symptoms and signs occur in a regional distribution and not in the area of a peripheral nerve or nerve ending in the skin.

 

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A syndrome with all of the features of CRPS, without the pain, has also been noted. Some authorities have proposed distinct clinical stages; however, the validity of this approach is questionable given the variable clinical course of the disorder. The symptoms of CRPS may spread within the region, or in mirror image fashion- appearing in the opposite side of the body in the same region, or independently- appearing in a foot after appearing in the hand. In some cases, spread is associated with a new inciting event.
Abnormalities in sensory testing, such as the decreased sensation to light touch, pin prick and vibration, may be found in the affected region and adjacent areas. There is a higher incidence of motor impairment and mechanical allodynia in patients with widespread sensory impairment. Many patients with CRPS develop neglect-like symptoms similar to those seen after a stroke in the affected limb. Patients have reported that the feeling in their arm or leg does not seem to belong to them any longer (cognitive neglect) or having to think harder to make the limb move (motor neglect). Phantom sensations such as strange limb postures or the feeling of having extra body parts have also been described.

 

Nerve Fire
These abnormalities in limb movement and posture may reflect the development of fear-avoidant pain behaviors, or motor dysfunction. Causalgia-dystonia syndrome is characterized by clenched fist or foot, early onset of contractures, and the spread to other limbs. Many patients with CRPS develop areas of myofascial dysfunction and may have trigger points within the muscles of the affected limb, especially in the arm and shoulder. The incidence of myofascial dysfunction is higher in patients with motor neglect or long-standing symptoms. Physiological factors such as depression, anxiety, and post-traumatic stress disorder are common, with 80% of patients reporting a stressful life event immediately before the onset of their CRPS. Social and occupational problems, such as loss of employment, or disruption of family life, are frequently present.

 

Prevention and Post-Operation Minimization of CRPS

Prevention is avoidance of trauma and unnecessary surgery, early mobilization and rehabilitation of an injured body part and management of psychological factors such as depression, anxiety and fear-avoidance. Programs to increase awareness of Complex Regional Pain Syndrome among medical practitioners may facilitate earlier diagnosis and treatment.
Strategies to minimize recurrent CRPS after surgery should include a pre-operative assessment of the patient by a pain management specialist, and the development of a treatment plan. Indications for surgery should be reviewed, as there are reports of surgery being performed to treat a painful mechanical condition, when the pain was actually due to CRPS. Surgeries should be limited in extent and duration, particularly avoiding nerve injury and prolonged tourniquet use. In some cases, intravenous regional blockades with clonidine and lignocaine, or administration of vitamin C may reduce recurrence. Sympathetic analgesia, including ketamine and calcitonin may also prove beneficial. Post-operative immobilization, such as splinting, should be minimized and physiotherapy should occur as soon as possible.

 

 

CRPS is indeed a complex disorder in terms of pathology, diagnosis and treatment. It is a multi-system disease typified by widespread nervous system dysfunctions and regional tissue inflammation. Patients need to take care to attend their physical therapy after injury, in order to avoid the occurrence or recurrence of Complex Regional Pain Syndrome.