woman holding her foot in pain

What to Do When You've Been Diagnosed With CRPS

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I had been injured and was not healing as I should be. I was experiencing strange feelings in my foot and having burning pain instead of less pain. I should have been getting off the crutches and walking, but instead my pain level was increasing and I was still unable to walk without the crutches and the walking boot I’d been put in months earlier. So I was referred to a physiatrist who happened to have a very poor bedside manner. He examined me which was very painful because for some reason it was getting harder and harder to stand anyone touching my foot.

And then he said, “You have reflex sympathetic dystrophy. Also known as CRPS [complex regional pain syndrome] type 1. Google it,” and wrote me a prescription.

I don’t recommend learning about your condition solely from Google, as you can end up seeing so many worst case scenarios you will scare yourself silly. If you have CRPS, don’t look at the Google images. Just don’t. Stick to websites that are actually dedicated to teaching about the condition, like RSDSA, Burning Nights or American RSDHope. On those three websites I was actually able to learn about my condition and become more knowledgeable than many doctors I come across. Of course you can do a lot more research if you are so inclined (I do!). If so, Stanford performs a lot of research and studies on CRPS and has many video conferences you can watch on YouTube.

Remember that your doctors work for you – not the other way around. This means you have the right to “fire” your doctor. Needless to say, the doctor who gave me the diagnosis was quickly “fired” and I found another pain management doctor with a much better bedside manner who was more concerned with working with me, talking with me and helping me better understand my condition and manage my pain.

But even then, CRPS was such a huge thing to take in. I was overwhelmed. I thought I’d never improve from where I was, barely able to touch my foot to the floor. I was terrified of all the horrible things I read about – CRPS spreading and getting worse. I was already off work on disability, but would I ever return to work again? How would I manage everything at home on crutches forever? CRPS can also carry with it depression and anxiety, and learning to manage and deal with those are another huge undertaking. They are a big part of the disease that gets “swept under the rug” frequently. My advice? Don’t let this happen. Advocate for yourself and speak up. Get treatment and help for all of the aspects you are dealing with. Therapy can be a big help, and so can medication. And a big bonus is that some anti-depressants also help with pain management.

It has been more than a year since that fateful day. And contrary to all of my fears, the world hasn’t caved in and I’m surviving just fine. My pain management doctors are still working to fine tune the right medications for me. Physical therapy has done amazing things for my mobility, and though I still use crutches, I can get around much better now than before. I’m coming to terms with my limitations and filing for SSDI (Social Security Disability Insurance). And I’ve found The Mighty, which is an amazing place to read others’ stories and share my own.

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Image via Thinkstock.

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What Chronic Pain Has Taught Me About Pacing

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I want to share something I have been learning with all the other chronic pain warriors out there.  Pacing.

My chronic pain comes from complex regional pain syndrome (CRPS), one of the most painful conditions. CRPS has no one successful treatment plan. What works for one may not work for the next patient. In addition, like most chronic pain conditions, even if you are on a fairly successful pain control regimen, you may still may have “flares” which can easily send you to bed for hours to days depending on the severity. Flares may be caused by many things: the weather, stress, bumping the affected limb, etc. But one thing that causes flares that you can try to control is overdoing it.

One “tool” you can use is pacing.

This means really looking at the things you need to do in a given day and even the week, writing them down, and figuring out how much you can do of each one before it will begin to push your pain level up. At that point, before it would begin to have an impact on your pain level, you need to stop that activity and rest. That way you don’t begin to increase your pain level.

So many of us say, “Oh I’m having a good day! I’d better do everything on my list!” But then doing all of that means you work and work until your pain increases and you can’t function anymore. That can cause a flare and land you in bed for a day to recover.  These peaks and valleys are less functional than trying to maintain a more even state.

Say you wake up and your pain is at a 4 (using that obnoxious 1-10 scale the doctors love!). You decide to work in your garden. You are feeling pretty good, the sun is shining, it’s nice outside… and you enjoy gardening so this is a happy activity for you.  Great! But. You need to monitor your pain level. When you get those signals that your pain is going to start to creep up, you need to stop. Go inside, rest, do something quiet like reading a book, watching TV, or even taking a nap if that is what your body needs. Then, after a little while (and it will be different for all of us) you may be ready to return to the gardening, still at a 4.

Another method of pacing is to use your list to plan your day. Say you have several tasks you want to get done. You might look at them and realize three of them are ones that may raise your pain level. Well, then those are tasks to spread out during the day so you can rest in between them. Or, depending on the task, maybe even reschedule one or two for another day. If you have something planned in your week that will be physically challenging for you, likely to push your pain level, then it’s best to schedule the days around it to be days of resting.

It isn’t easy, it takes practice and it may be the opposite of your natural instinct. But pacing can help you prevent those nasty flares that keep you in bed. I hope this helps – it has been helping me to manage my pain better.

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Thinkstock photo by Michael Blann

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Sabrina Canella - Complex Regional Pain Syndrome

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Sabrina Canella is an author and dancer with CPRS/RSD.

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The Moment of 'Normalcy' I Craved as a Student With a Disability

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Normalcy is defined by Webster as “the state or fact of being normal.” After being diagnosed with complex regional pain syndrome, also known as reflex sympathetic dystrophy, my life was far from what seemed normal. At 16, while my classmates were getting learner permits and driver licenses, I was being diagnosed with a rare chronic disease and getting lumbar nerve blocks and epidurals. While my classmates were anticipating their senior trip, I was preparing to have surgery. When everyone else was worrying about not making it to class on time because of the long walk across campus, I was attempting it on crutches.

Then I got a Pride mobility scooter. Although many classmates thought it was cool and wanted to play on it, life still wasn’t “normal.” While others were parking on ramps because it was the closest place to the dorm door to park while unloading their belongings, I sat in the cold snow and rain because the only ramp to the dorm had a car parked on it. On one occasion a campus police officer was a gentleman and waited to hold the door open as I exited the building. When I rolled down the front deck, I came around the corner and there on the ramp sat… yes he had just held the door for me and now I would to have to sit 10 minutes waiting for him to come back and move his police cruiser off the ramp.

When I would call campus security to complain about a car on a ramp, they would come out, run the tags, call the owner of the car to tell them it needed to be moved, and wait with me until the person came to move the car. Sometimes the officer would have to call more than once. When the person would finally come to move their car, the officers usually laughed and joked with the person and warned them not to park there in the future, but since tickets were never written, no one seemed to take the warning seriously.

A few times, more than one officer reported and I heard them talking between themselves about not being able to write a ticket because they didn’t have a ticket book or that the spot wasn’t painted to indicate it was a disability ramp. I wondered why an officer would report to the scene of an illegally parked car without a ticket book, and why wait for the driver to come move the car if you are going to make jokes and make the ordeal seem insignificant? It all seemed a little strange to me.

You would think going to class would be the same for all students, but my professors couldn’t even allow me to be a “normal” student. I’ll never forget the first day of math class when the professor said with excitement, “I’ve never had a ‘handicapped’ student before!”

How was I supposed to respond to that? “Oh, I became disabled just so you could feel rewarded for teaching someone like me?” No, I didn’t really say that. Instead I just smiled.

After I decided to major in education, I had to take a class on including students with differences in the classroom without drawing attention to them. I learned a lot in that class. The very first day, the professor pointed out that we all have lots of differences and that everyone has a disability of some sort — some are just more visible than others. However, for every disability, regardless of what it was, the professor used my name for the student in her example.

I can assure you, I didn’t just imagine this.  When the professor wasn’t in the classroom, classmates commented that they had noticed it too. I must admit, while I found my math professor’s comment slightly offensive, I was highly offended by the professor who was supposed to be teaching me how to include all students in class without drawing attention to their differences, but did just the opposite. She certainly did not make me feel equal to the other students in class.

Then came the day I felt “normal” for a brief moment.  After ten years, I don’t remember her name, but I’ll never forget what she did.  I lived on the bottom floor of my dorm in an accessible room. This classmate lived someone in the same building on a higher floor. We often “walked” together to our science class. Our class was on the fourth floor of the science building, and as we approached the door one day, she looked over and asked if I was going to take the stairs or the elevator. I looked over at her thinking she was just being funny, and realized she was asking that question seriously.

I couldn’t believe what was happening. I felt as though my eyes and ears were deceiving me. There I sat on my three-wheeled Pride mobility scooter, and I was being asked if I was going to take the stairs.  She was able to look past my disability, overlook the fact I was using a mobility scooter, and ask me the same question she probably asked other classmates all the time. Thankfully, she had a sense of humor because  I replied, “I think I’ll take the steps today.” Then I patted the front of my scooter and asked, as seriously as I could, “How do you think this will do?”

She said, “I’m so sorry. I forgot!” I explained no apology was necessary, and told her how good it felt to be treated with kindness and seen as a person, not just a person with a disability. We both laughed as we entered the building and climbed on the elevator. I may not remember her name, but I’ll never forget the day she saw and treated me as an equal… the same way she would treat any other classmate. She was able to overlook my physical differences. I will always be grateful!

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8 Awesome Gifts Under $15 for People With Complex Regional Pain Syndrome

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Have you ever been given a gift that a friend or family was excited about because they just knew it would be perfect for your condition? I have, and let me tell you, it was difficult figuring out how to respond. Sometimes they hit it perfectly, while other times the gift is completely unusable. Usually I try to smile, say thank you and tell them how much I appreciate them thinking about my chronic pain condition. I have complex regional pain syndrome (CRPS), a severe neurological condition that makes my brain interpret all stimuli as painful ones. Friends and family don’t experience CRPS pain on a daily basis, so it’s understandable that loved ones won’t always know what is actually a good gift. Additionally, them genuinely wanting to help out is very sweet, and that should always be noted! Trying is better than not caring at all.

Complex regional pain syndrome can be a very difficult condition to shop for, even when you are the one grappling with it, like myself. Sometimes I feel silly for meticulously touching and feeling various fabric types to test for level of softness, but it’s a valid search. As someone with CRPS, my aim is to direct the focus of this article to the friends and family of people with CRPS, in the effort to make shopping a little stressful and uncertain and more likely to be successful. I’ll start with a few tips on what to look for in potential CRPS-friendly presents, and follow with eight things that have been great for my full-body pain flares. This would be good place to start for anyone shopping with a similar objective, and are all less than $15.

What to Look For in a Gift

  • Ask your friend/family member what they need, what they can or can’t tolerate and what known triggers might be. For instance, a trigger of mine is repetitive motion, so any activity like knitting is impossible. Friends and family therefore know not to get me anything similar to knitting that requires lots of hand movement. If your friend/family member gets very specific about a certain shirt or appliance, ask them why they are so specific — often that particular object is something they know they can handle.
  • Think baby-level soft when picking out anything with fabric, whether that’s clothing or house linens. Keep in mind that what feels soft to you might not feel so soft for someone with CRPS. Soft things are very important; even though we have days when any fabric is almost intolerable, soft fabric is always better than rough fabric.
  • Anything that vibrates and is something we’d have to sit on, hold or touch in any way might not be the best option. Many with CRPS can’t tolerate even the slightest vibration.

Gift Ideas

green fuzzy socks and pink fuzzy gloves
Fluffy socks and gloves are perfect for bad hand or feet flares!

1. Fluffy gloves. Extremely soft gloves are an accessory I’ve found to be perfect for times in the house when my hands get very cold or feel like they’ve been stripped raw, which makes it painful to touch anything. The gloves protect me from touching other things, and they are soft enough not to cause extra pain.

2. Go-to comfort item on bad pain days. When I have a bad pain day, I cope by drinking hot cocoa, wearing super-soft clothing and watching kids’ movies all day. Kids’ movies are typically my go-to pain day movies because they won’t trigger anxiety or migraines, and they help relax me with laughter. What does your CRPS friend do on their bad days? Find out and you may get a tip on something that will always be a reliable go-to gift.

3. Epsom salts with lavender scent. Check to see if your friend has a bathtub or a foot tub, and if they do, this may be a great gift for them!
Many people with CRPS enjoy long soaks in Epsom salts and see a marked difference in flares and symptoms following a soak.

4. Face caddy. This wrap is specially designed for people with TMJ, migraines, facial pain or those recovering from dental procedures. It holds two cold/hot packs, one on either side of your face, and velcros at the top of your head. I love it! It lets me keep cold packs on my jaw without having to hold them the entire time. The wrap fabric is probably medium level soft, maybe rougher to someone with more severe facial pain, but it might be possible to attach a softer fabric to the wrap if needed.

5. Aloe-infused socksI love these! Aloe-infused socks are easy to find in pharmacies and clothing stores alike, and they’re extremely soft! Being infused with aloe helps moisturize the skin, and unusually dry skin can be a side effect of CRPS. Plus, the socks come in fun colors so the wearer can feel awesome while trying to calm that hot coal feeling on their flaring feet.

6. Gift cards to favorite stores. Gift cards may seem tacky to some, but they are a great way to ensure that the recipient gets something that will work for them based on their pain levels. Additionally, a gift card to a place they frequent such as the grocery store, a hair salon or pet store can help them get things they need. Financial stress can be a problem for many disabled people, even if they do have government assistance, so a simple thing like a gift card that could cover all or most of a grocery trip one week would be a fantastic gift.

7. Happy wrap. This is a flax seed and lavender-filled pouch that is great, cold or hot, for migraines or general face pain. The wrap’s fabric is very smooth and the flax seed filling helps it conform to your face.

person washing dishes in the sink
Helping with housework would be an excellent gift!

8. Homemade gift card redeemable for chores and other helpful tasks. I know that for me, it’s really hard to ask for help sometimes, and the best gift would be if someone offered to help me do something that would cause me a major flare-up, such as cleaning the house. People with CRPS are often ashamed to ask for help doing simple things like washing dishes, because we want to not be sick and know we look “normal.” I often struggle to get things done around the house so I can feel like an equal partner in my relationship, and that can easily result in more flares. So it may seem simple or strange to you, but I guarantee that if, instead of a traditional present this year, you offer to go over one day and vacuum the whole house or do some other task, it would be one of the best gifts your friend could receive.

Shopping within CRPS limitations can be a difficult task if you go in blind. Ask your loved one what they need, what “luxury” items they want but may feel guilty for buying and how best you might help them this holiday season. Hopefully the tips provided give you a better idea of where to start, and the specific gifts listed may lead you to the perfect present. Keep in mind though that the things which work well for my pain might not work for someone else, as CRPS affects everyone differently, so you might want to check with your friend before settling on something.

Happy shopping and happy holidays!

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How I'm Choosing to 'Own' My Crutches

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crutches decorated with leopard print fabric Due to a series of unfortunate events, I have complex regional pain syndrome (CRPS). The CRPS is in my foot and leg and means I must use crutches to get around. CPRS causes extreme levels of pain. Being a chronic condition, it isn’t going away any time soon, though of course my doctors are working with different medications and forms of physical therapy to help the pain.

All of this means I’ve been using crutches for 18 months now. A while ago I decide to “own it.” If I’m going to be on crutches for who knows how long, I’m not going to be on boring old gray crutches. And I’m going to make them more functional for me. After all, it’s hard to carry a purse with crutches, and a backpack means swinging it on and off every time I want to get my wallet out.

fuzzy socks with pink zebra stripes and cats

So I searched online and found some cute leopard print covers for the handles and the tops of my crutches. I got pockets (leopard!) that attach to the sides below the handles to carry my wallet, cell phone and anything else I need along with me. (For those of you on crutches, they make tons of other colors and patterns for you to dress up your crutches).

Doing this made life easier for me in a practical way right away. Everything I need is right at hand. I don’t have to ask people to carry my purse, my wallet or whatever for me anymore. woman's foot with a fuzzy black and white polka dot sock

Less dependence, more independence, more confidence. Making the crutches look “cool” and fun also gave me more confidence, as I felt more like, “Yeah, these are my tools, so what?”

Somehow, through doing this – through dressing up my tools for mobility – I moved another little step towards acceptance of my disability, too. Oh yeah, and since my foot is very sensitive, I can’t wear a regular shoe on that foot. I wear a “fracture shoe” which is like a giant sandal. Sensitive feet like super soft chenille socks. Naturally I have many fun patterns for those socks, too! “Own it!”

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