When I was nine years old I developed a rare neurological condition known as Complex Regional Pain Syndrome (CRPS). CRPS is an incurable disease that causes me to experience debilitating full-body pain. I am now 18, and have been living with this condition for half of my life. I want to use this platform to reach out to other people with the disease and educate those who don't know about it. Only through education will we ever see change.

UPDATE: Thank you so much for all the questions as well as the words of encouragement and support. I fully intend to answering every comment/question, it may take me a while as typing causes me a lot of pain but I promise it will get done! It would really help if you could read the FAQ and the other comments before asking a question, just so I don't get doubles :)

FAQ -

Q: Have you used marijuana to help with the pain?

A: Yes! I've tried synthetic THC pills, but they didn't help at all. Now that I'm 18 I hope to pursue things like organic THC, edibles and CBD oil.

~

Q: Can you have sex?

A: Yep! It hurts, as does any other activity, but with the right supports and a gentle partner it can still be pleasurable.

~

Q: Have you tried ___?

A: Probably! Please skim through the comments before asking.

~

Q: What are your favourite games?

A: My favourite games are Fallout 4 and Animal Crossing.

Proof -

News article

Photo proof

YouTube videos

Facebook

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Comments: 503 • Responses: 79  • Date: 

itssallgoodman129 karma

Where are you located? Would you be interested in speaking with someone that might be able to help you u/bandaidknees? I know of a clinic that treats CRPS and gets fairly good results. The clinic is called The Rehabilitation Institute of Chicago(RIC) and their staff is specially trained to handle those with all kinds of pain from acute to chronic including CRPS. 2 clinicians out of RIC have written a book about pain, and classification/management of it. The book is called "A World of Hurt: A Guide to Classifying Pain". It is 100% evidence based and they have really done remarkable things. If you'd like more information let me know! Keep on keeping on!

bandaidknees77 karma

I've never heard of RIC before, thank you for telling me about it. I'll bring it up with my parents and doctors at our next meeting!

chickenman032185 karma

Can you still browse dank memes?

bandaidknees174 karma

All day every day, my dude.

Quorum_Sensing77 karma

I'm an ICU RN at one of the few hospitals in the US that treats CRPS with high dose Ketamine, so I've spent many weeks with the patients. The stories of how it started are always interesting, some are so small and some immediately make sense. You are far and away the youngest I have heard of at 9 yrs. old. What triggered yours? Where is your pain located? Have you looked into the Ketamine treatment? I've seen amazing results.

bandaidknees77 karma

CRPS is a really strange disease for that reason, it can start with little to no cause. Most of the cases are caused by accidents or botched surgeries but some of them, like mine are mysteries. Mine started for absolutely no reason. We didn't know when it first started, we didn't know 5 years later when I was diagnosed, and 8 years later we still have no clue.

My pain started in my knees but over the course of 8 years has spread to my entire body. There isn't a single spot where I do not feel pain.

I have tried Ketamine treatment a couple times now but unfortunately with no results. Thank you for the suggestion though!

nyctibius68 karma

My question is kinda dumb and shallow.. But wouldn't your body get used to the pain trough the years, and sooner or later you feel less pain?

bandaidknees184 karma

Not dumb at all! I totally understand it, I wonder this sometimes too.

This is a complicated question to answer so I'll try to keep it short. The easy answer is yes and no.

Yes, because I do have a much higher pain threshold than most people. I am able to function (albeit poorly) while dealing with pain that would leave most people screaming. The pain that I deal with on a regular basis is documented to be worse than amputation and childbirth. I'm sure you've seen a childbirth scene in a movie at some point, or maybe even experienced it yourself, but either way you're probably familiar with the woman screaming and crying. The level of pain that's causing her to scream and cry is what I experience every day.

I also answer no to this question because the pain is constantly getting worse, and even when it isn't it doesn't get better either. So I never feel "less pain", I just develop better coping mechanisms and a stronger pain tolerance.

nyctibius110 karma

Oh my god, as you grow stronger so does the pain..

bandaidknees111 karma

That's very poetic, I like it. Makes me feel like an X-Men character or something.

scottcmu29 karma

bandaidknees23 karma

THE MOST ACCURATE THING I'VE SEEN ALL DAY THANK YOU

sirgraemecracker7 karma

Does this mean if you shave your head again I can call you Professor X?

bandaidknees12 karma

Um.... yes.

anti_crastinator12 karma

The pain that I deal with on a regular basis is documented to be worse than amputation and childbirth.

How is that determined? Is there some measurement of nerve excitation or something? or fMRI?

bandaidknees12 karma

There's something called the McGill pain scale that determines a person's pain in relation to other pain. It's hard to explain, even I don't fully understand it but basically, on that scale, CRPS is more painful that amputation and childbirth.

I'm sorry I can't explain it better, I'd suggest looking it up!

Thatguyfromhouse36 karma

How do you fall asleep with constant pain?

bandaidknees71 karma

Drugs, drugs drugs. I have a cocktail of medication that I take throughout the day and I would honestly get no sleep without the medication I'm on. Apart from that, if I'm really hurting a lot I'll try to play music loud enough to drown out the pain, but if that doesn't work I just don't get any sleep.

cards_dot_dll8 karma

Do you have extra nighttime drugs for sleeping?

bandaidknees14 karma

Yep! I have my normal (useless) pain meds and then another one (can't remember the name of it, sorry) that knocks me out.

modembutterfly5 karma

Maybe trazadone?

bandaidknees3 karma

That sounds familiar but I'm not entirely certain. I've been on sooo many meds over the years they all blur together.

princeofspinach34 karma

What triggers the pain? Do you have moments of peace?

bandaidknees89 karma

Anything can trigger the pain. Physical things like temperature and movement are obvious, but even little things like the weather or emotions can trigger huge flare ups. Sometimes my pain will increase with no noticeable trigger at all.

I have moments of mental peace, but never physical peace. The pain never goes away. It can lessen slightly if I'm very lucky, but even then it's still incredibly debilitating. I strive for mental wellness instead of physical wellness because it's more attainable.

Rinkytinker41 karma

I strive for mental wellness instead of physical wellness because it's more attainable.

I've had chronic pain going on 8 years now, and this is painfully true. (Pun absolutely intended.) When my mind is clear and happy, my pain can be dealt with so much better.

Thank you for doing this AMA, I hope you find relief and all the happiness your world has to offer.

bandaidknees23 karma

10/10 excellent pun. Jokes are always good for lifting the spirits. Thank you for your kind words, they really mean a lot. It's people like you who make dealing with this disease easier.

Metta-Man5 karma

Have you tried meditation to handle the pain better?

bandaidknees7 karma

Yes, I have tried meditation. I talked about this in a previous answer but I was born Buddhist and have been practicing for my entire life. That said, traditional meditation Shamatha meditation (Meditation that involves focusing on the breath) is difficult for me, as it involves focusing on nothing but the breath. My pain is so severe that I have to distract myself with things like movies, music and video game in order to prevent any extreme mental or physical anguish. So traditional meditation has me focusing on my breath, that isn't enough to distract me from my pain, which can lead to panic attacks and suicidality.

However, I am working with a meditation instructor and a therapist to try and find a form of meditation that is more accessible to me. Thank you for your suggestion, I hope I have the same success with meditation as others have had.

Senoralaura28 karma

My husband was recently diagnosed with this condition after a failed surgery in his foot. I think he is just starting to wrap his head around the permanence of this condition. Do you have a specific area that haunts you? How has it changed over the years- has it progressively gotten worse or different?

bandaidknees25 karma

I'm sorry to hear that, I wish you both the best of luck in dealing with this.

My knees will always be the worst spot. The pain started there. They always hurt the worst, and for the majority of the time I've had the condition they've been the only place affected. Only in the past year has the pain spread to the rest of my body. It's gotten progressively worse since it developed, not just in it spreading but the pain has also increased.

Pigeon_Poop27 karma

What are some things you do to cope with the pain?

bandaidknees47 karma

My main coping mechanisms are my family, my friends and my boyfriend. Having a support network is one of, if not THE most important thing to have when dealing with a chronic illness. Next to people I have video games, TV and movies, and music to keep me occupied and relatively happy.

SkumbagBenjo12 karma

How does your condition influence your relationship with your boyfriend?

bandaidknees31 karma

This is a loaded question, and I'm not entirely sure what aspects of our relationship you're asking about so I'll try my best to cover it all.

Obviously it does affect my relationship with my boyfriend, it affects all my relationships. Wether with my family, friends or a partner they all are influenced by my condition in some way or another.

The most obvious would be in what I am able to do with him -

Going on dates is difficult because finding a place that is accessible enough to accommodate my wheelchair is fairly rare, and even when we do find a place that's accessible I don't always have the energy to make it out of bed, let alone my house.

Physically intimate things like cuddling or sex are also difficult. Any touch causes me pain, no matter how gentle or what the person's intentions are. Although hugging, kissing, cuddling and sex are supposed to be activities that release positive endorphins, I often end up being miserable because of the amount of pain and discomfort they cause me.

Emotionally it also has a toll on both of us. It's hard having any form of relationship with someone as sick as I am, I'm fully aware of that. I made sure he knew that when we first started dating and somehow, almost 6 months later, he still finds it worth it.

I have a lot of internalized ableism that makes me believe that he would be better off with someone healthier, but he always puts those thoughts to rest. We love each other, we are a team and we will get through this, and anything else, together.

bebelac26 karma

What is that one thing you really wanted to do but couldn't due to your condition?

bandaidknees67 karma

Oh man, this is a hard one. I think it would be pursuing my love of filmmaking. I've had a huge passion for film ever since I was young. My earliest memories revolve around movies. I've directed, filmed and edited since I could first get my hands on a camera.

In the past few years I've lost the ability to do what I love, to create films. Some combination of the pain and the cocktail of meds I'm on has rendered my brain a dull mess and all the talent I once had is hard to access. My body is incredibly shaky and weak, making it hard to hold a camera steadily, even for a short period of time. I'm so focused on my pain most of the time that I can't bring myself to come up with a story, let alone translate it to the screen.

I've had my career planned out since middle school, long before anyone else was bothering to look at universities or even think about post secondary education. I was always focused on doing my best in school and building up a portfolio so I could apply to the best filmmaking schools. Unfortunately my entire education has been put on hold for the past few years and so has my hobby and passion.

Being unable to make movies is perhaps my greatest disappointment, but I know that if it is truly my calling I'll be able to find a way to continue to create.

amber_eris12 karma

Have you ever looked into modified filming equipment? ie frames for your camera that would reduce how much weight and movement you actually have to handle?

bandaidknees17 karma

Yes I have, they're just sooo expensive.

missplacebo21 karma

What can a random Reddit stranger do to make your day a teensy bit better?

bandaidknees17 karma

Just leaving a comment on my post makes my day honestly, seeing the support you all are giving me on this is such a boost. :)

X_chaotic_neutral_X20 karma

My name is Brittani, and I was diagnosed with CRPS when I was 11 following a fall down the stairs that caused me to break my left heel. Four years later, I got it in my right hand, and two years after that I was diagnosed with fibromyalgia to explain the full-body pain (though I still think full-body CRPS makes more sense.) I've never encountered anyone else who developed CRPS as a child! I'm so sorry that happened to you, I wouldn't wish it on my worst enemy, but it's nice to know I'm not alone!

I'm new to Reddit (I literally signed up just so I could comment back to you after my friend sent me the thread), is there a way to private message or anything? I'd love to exchange contact info so we can swap war stories and discuss treatment options! Like I said, I've never found anyone else who was diagnosed as a child, and I rarely encounter anyone near my age who is dealing with it. (I'm 27.) Want to be friends? Lol

bandaidknees15 karma

Aah it's so great to meet someone who's had it for so long! It's hard to find people who've had it for more than one or two years. I'm so sorry you're having to deal with this, it's truly awful.

I'm in the same boat with being diagnosed with fibromyalgia, my doctor straight up said she diagnosed me with it because she'd "never seen full body CRPS in the flesh before". Like... what?

I'm fairly new to Reddit too actually! My preferred platforms for messaging are either Facebook or Twitter, but I'll send you a message on here to get us started! I most definitely want to be friends :)

djsk8eruc218 karma

Hey there! I am a physical therapist and see CRPS often. It's tough to treat and my interventions vary significantly person to person. I'm assuming you have had PT as one of the many things you've tried and I'm curious if anything helped (even if temporary) and more importantly what really didn't help?

bandaidknees31 karma

I've tried physical therapy 5~ times, maybe closer to ten. I've tried it at many different places ranging from community centres, to hospitals, to facilities in other countries. None of them have worked permanently.

In 2013 I was flown out to the Children's Hospital of Philadelphia and underwent a month long physical therapy intensive programme that managed to control the pain enough that I could walk and function again. Unfortunately in late 2014 the pain came back worse than ever and my doctors agree that it's not worth trying the programme again.

Other than that, I've never seen any real relief from my pain. Certain meds drug me to the point where I can't focus on the pain, or anything else.

The last few times I've tried physical therapy it really didn't help. It made things worse. From a few studies I've read apparently CRPS gets harder and harder to treat the longer a person has had it, and since I've had it for 8 years now it's damn well near impossible to treat.

zpeacock8 karma

I saw earlier in the thread you have tried ketamine therapy as well. Have you ever coupled the ketamine therapy with PT? My brother unfortunately suffered from this and several repeated rounds of ketamine therapy, then PT during it eventually cured him. There is also a treatment that was at least discussed at the time he was diagnosed of being induced into a coma and having that help. I can't remember the exact details though. I believe it, like many CRPS treatments, was experimental.

bandaidknees9 karma

Yes I have tried the two together. Again, no effect unfortunately. Yeah a lot of my treatment has been experimental, and mostly done by folks who hadn't even heard of the condition before they met me. It's a difficult treatment.

sirgraemecracker17 karma

Hi Ophelia. I guess I'll start off the questions with one I've always sort of wondered about but never actually asked. How do you deal with the pain without just being constantly bitter and cynical 24/7?

(Don't judge my username I made this account when I was like 16)

bandaidknees51 karma

The pain does cause severe depressions (and anxiety), as do most chronic illnesses. I deal with thoughts of suicide every day. Living in constant agony is really difficult and death often seems like the easy way out.

I do get angry sometimes, thinking things like "why me?" and "it's not fair". It's true that it's not fair but focusing on those thoughts doesn't do me or anyone else any good.

To be honest, the pain has given me more appreciation for life than it has discontent. I appreciate every single thing I am able to do, and everything I was able to do before I got sick. Especially since learning that CRPS can be fatal, I enjoy every day to the best of my abilities. It's hard sometimes to remember the positive things in live, especially when I'm in constant pain but it's given me an admiration and respect for all things.

Lington4 karma

How does CRPS become fatal?

bandaidknees7 karma

While it will never be listed as the cause of death, it can lead to complications that can be fatal. The most common complication is immune system failure. I think the biggest cause of death related to CRPS is suicide, it is commonly known as the "suicide disease".

I_am_math_girl17 karma

How does your disease impact your education? Do/did you still attend public schooling?

Thanks for doing this AMA! I've never heard of CRPS so I think it is amazing of you to put yourself out there to educate others :)

EDIT: grammar is hard

bandaidknees36 karma

It's had an incredible impact on my education. I've missed so so so many days of school since it first started. It was fine in elementary school, but once I got to high school the missed assignments and tests really started to add up. I've missed school because of appointments, because of the pain, because of the depression the pain has caused.

I'm in grade 12 now but I'm about a dozen credits behind. My brain is so foggy because of the medications I'm on as well as the pain that it makes it really difficult to read or write, or do anything productive really. I don't know how long it's going to take me to finish high school but my guidance counsellors and parents have estimated 1-3 years.

spaceyandtired14 karma

is there anything one can do to help you? what outside help would you want from friends?

bandaidknees29 karma

Honestly just support and understanding. It's hard to have a friend who's as sick as I am, I'm really aware of that. So just being there to talk, even if you have no idea what I'm talking about, and understanding when I'm not well enough to do something or have to cancel plans last minute. And always knowing that what you do for me, I will try my very best to do for you.

feezyduck13 karma

Have you tried CBD verse THC for the pain?

JorahExplorer10 karma

I have help get this comment get noticed since I've heard you have only tried synthetic THC once. Take this from someone who is not a traditional medicine skeptic, quite the opposite. Nor am I some pothead, I don't smoke. But to hear you have tried everything for your pain and then hear you have only tried synthetic THC makes this comment so important for you to hear. YOU SHOULD TRY ALL TYPES OF MARIJUANA. Hospitals do not dish out medical cannabis, and I am surprised they have not given you this option already. I am sure you have tried every possible medication, but you have not tried marijuana. Synthetic THC is very different, somehow, and is still one of many cannabinoids found in pot, and the least medicinal. PLEASE TRY IT

bandaidknees10 karma

I really really really want to try it. I know that synthetic is not the same as organic, but this was the only option given to me by my doctors. I only just turned 18 and as cannabis is not an option for minors, my treatments options have been severely limited until now. I hope to pursue more treatments like it on the future.

bandaidknees10 karma

No I haven't, we want to but it's difficult to find a doctor to support you in trying cannabis as an alternative to traditional medicines. A lot of people are still so closed minded about it.

Now that I'm 18 I really hope to expand my treatment options and maybe I'll get to try it!

blindmikey9 karma

My wife had CRPS, she simply knelt down in the garden one random day and her calf muscle snapped; typically you'd go through normal recovery and PT, but her pain not only stuck around but got worse and spread into her entire leg; pain would be worsened by things that didn't make any sense, like even light touch, temperature, going over a bumpy road in the car or wheelchair; all from kneeling down in the garden one day.

Come to find out, she tested 100% positive for Ehlers–Danlos syndrome, a condition that has silently effected her entire life. Learning this was both a curse and a blessing; it suddenly and very accurately explained many of the seemingly separate issues she's had growing up.

There is (albeit small amount of) documentation showing a connection between Ehlers–Danlos syndrome and CRPS.

Her treatment was a good constant dosage of Tramadol, which did not help until she was on it regularly for a month or two. We also supplemented a strain of cannabis that was extremely high in CBDs and very low in THC, after reading about another small group of studies on CBDs and CRPS. Not only could she actually stay mentally agile while on these two medicines, but she began to feel relief - something those other pain killers and narcotics couldn't provide her with.

I'm not sure if it was one or both of the two medicines, or something else, but 4 months ago she was in a wheel chair or bed 24/7; Now she is up and about and only has occasional small flareups.

I know everyone is different, but I also know that the more people talk about their experiences, the more information we have to help find solutions.

I wish you every bit the best of luck.

bandaidknees8 karma

I'm glad to hear your wife is doing better. Thank you for sharing your story and kind words.

perfectlyskewed3 karma

Ugh, that's awful! I have friends who have personally been helped massively by CBD heavy strains and purified CBD oils. To be fair, they don't have nearly as severe of conditions as you, but they really did find their conditions were helped. Best of luck finding treatments. So sorry the marinol wasn't helpful.

bandaidknees3 karma

Thank you! Yeah it sucks that there's such a twisted perception of cannabis as a medication. I hope I'll be able to try CBD and have the same affects your friends did!

raspberrygin12 karma

What is the difference between CRPS and fibromyalgia?

From my knowledge of the ACR management of fibromyalgia, the current recommended treatment is the triad of neuropathic pain meds/low dose antidepressants, physical therapy and psychological therapies - have you tried all three at once in the way they recommend for fibromyalgia?

bandaidknees16 karma

I actually have been diagnosed with both CRPS and fibromyalgia, but I don't know enough about fibro to answer your question adequately. The main differences that I know of are that fibromyalgia doesn't affect internal organs, CRPS does, also fibromyalgia isn't fatal, CRPS can be.

I'm sorry I can't answer your question better, I suggest googling the two diseases, there are loads of great resources on both!

SugarandSass10 karma

Do you find that anything helps you at all? Drugs, distraction, etc? Or is it just consistently the worst thing ever?

bandaidknees29 karma

No medication or treatment has ever really helped, during the first few years of having the condition it was a bit easier to manage but now most treatment options tend to make things worse rather than better.

The best thing I can do is distract myself. If I'm not constantly engrossed in a video game or movie, the pain becomes overwhelming and can even trigger a panic attack.

So yeah, it's pretty much the worst thing ever, but I'm getting pretty good at occupying myself from it.

JebbyCars11 karma

What video games do you find help distract you enough?

bandaidknees32 karma

My absolute favourite games are Fallout 4 and Animal Crossing (very different I know).

Fallout 4 has everything I love, the 50s aesthetic, the post apocalyptic setting, the role playing elements, the diversity in NPCs and plot. I love the freedom that it gives me to explore a whole city while I'm bedridden in real life. It lets me change people's lives, make the world a better place. I've never been so in love with something (apart from my boyfriend) than I have with Fallout. It's just a beautiful, beautiful series and game.

I also love Animal Crossing because I'm a huge fan of Nintendo and the Japanese cartoony aesthetic that all their games have. Animal Crossing is just so positive and happy, whenever I'm overstimulated or sad I can pop the game into my DS and instantly feel relaxed and safe.

The_Samwich9 karma

What causes the pain? Is it actually originating in your muscles? Or is it happening in your brain?

bandaidknees8 karma

The cause of my pain is a disease called Complex Regional Pain Syndrome, what started it we have no idea. It's a neurological pain condition meaning that it has to do with the nerves, so yes it is happening in my brain.

lerouke7 karma

Is meditation possible with your pain?

bandaidknees9 karma

Traditional breathing focused meditation is really difficult and often makes the pain worse. However there are dozens, maybe even hundreds of types of meditation. I've been working with a therapist and a meditation instructor to find a way that I can meditate without causing extreme physical and mental anguish.

Walnutzoo5 karma

Have you tried opiates for painkillers? Vicodin, morphine, methadone. I don't know if CRPS can be affected by painkillers.

bandaidknees3 karma

I've tried some of them, the harder ones haven't been an option until recently as I've just turned 18

NutmegHarpoon4 karma

Hi, thanks for doing this AMA.

What routine activity (brushing hair, mowing the lawn etc.), that the rest of us do without thought, do you dread the most because of the pain it causes you?

bandaidknees9 karma

I think bathing is one of the hardest things. Water hurts my skin, it feels like knives. On top of that, moving my arms to clean my skin or wash my hair hurts too. It's altogether an unpleasant process.

deadendburst4 karma

Have you chinese medicine? Or at least acupuncture?

bandaidknees6 karma

Yes and yes! I've tried accupuncture close to ten times now but with no results. Accupuncture is difficult to treat CRPS with because it targets the part of the body that is in pain, not the part of the body that is causing the pain. In order to treat CRPS accurately with accupuncture you'd need to put the needles into the patient's brain and that's just not happening.

Xanatos8314 karma

Have you tried CBD pills the other active ingredient in medical marijuana?

bandaidknees7 karma

I really want to try it. I only just turned 18 and as cannabis is not an option for minors, my treatments options have been severely limited until now. I hope to pursue more treatments like it on the future.

NovemberWhiskey154 karma

Hi there! I was also recently diagnosed with CRPS but its limited to my hand and forearm (much easier to deal with than your issues). My doctor put me on Low-Dose Naltrexone (an anti-opioid they believe can actually help with pain in very low doses). It's a very experimental therapy but I wonder if its something you have considered? If so what was your experience with it. I will note that there is VERY little scientific research on this, but it could be yet another thing to try (I'm with you on trying everything!).

bandaidknees3 karma

Hi! I've never actually heard of Naltrexone, but I'll bring it up with my parents and doctors at our next meeting! Thank you for the input and I really hope it gives you some relief!

princess--flowers2 karma

If you have localized pain in a limb is amputation an option?

bandaidknees2 karma

It is an option and has a fairly high success rate, but there are also cases where the pain comes back and then spreads. So the risks associated with it are often enough to put people off the process.

sauronlord1003 karma

Is it fatal?

bandaidknees5 karma

It can be. It will never be listed as the cause of death, but it can lead to complications that can be fatal. The most common complication is immune system failure. I think the biggest cause of death related to CRPS is suicide. CRPS is commonly known as the "suicide disease".

abovemars3 karma

A: Yes! I've tried synthetic THC pills, but they didn't help at all.

What state do you live in? Have you considered edibles or smoking, rather than synthetics?

Did you dress up for Halloween?

bandaidknees5 karma

I live in Ontario, Canada.

Yes I have, it hasn't been an option until recently.

Yes, I wore a unicorn onesie!!! :)

joeypeanut653 karma

Was there every a time you didn't have pain? If so what caused the pause of pain and what brought it back.

bandaidknees3 karma

Yes, 2013 I was flown out to the Children's Hospital of Philadelphia and underwent a month long physical therapy intensive programme that managed to control the pain enough that I could walk and function again. Unfortunately in late 2014, for an unknown reason, the pain came back worse than ever and my doctors agree that it's not worth trying the programme again.

missplacebo3 karma

Hello! Thank you for doing this AMA.

I deal with chronic pain, too. Although, what you're dealing with requires way more strength. How do you make sure your condition doesn't mentally affect you or your dreams?

bandaidknees10 karma

I'm sorry to hear that you're dealing with chronic pain too, it's a really difficult thing and any level of pain requires extreme strength.

I find it's most important to have a support network of your closest friends and family. On top of that knowing what coping mechanisms help you deal with physical or mental anguish is always good. For instance I have a playlist of my favourite songs, I always have a plushie close by in case I need to hug something. I also bring my DS everywhere with me so I can play Animal Crossing if I get too overstimulated.

It's really just a balancing act, knowing what you find comfort in and using it to counteract the discomfort.

In terms of dreams, most of are no longer physically attainable, but that doesn't stop me from believing in them. Even if I'm never able to achieve them, they're still nice to think about.

bandaidknees3 karma

Oh, it just occurred to me that you might have meant actual sleepy time dreams. Yes the CRPS also affects my dreams, I have nightmares about my time spent in hospitals, the friends I've lost, the treatments I've undergone. It's a bit too dark for me to get into but I've developed some severe reoccurring dreams and flashbacks related to the pain that are only under control due to medication.

aptpupil793 karma

Are you able to work? Does your pain manifest itself physically in the way childbirth does? So, do you wince and cry and moan like someone in that pain would? What's the worst pain you've had outside of your disease and how did that compare?

bandaidknees9 karma

I'm actually still a student, but I'm not able to attend school or even participate in home tutoring.

I do often shake, sweat, cry and scream/groan because of the pain. The screaming and crying only comes when it is at it's worst as I usually don't have the energy to do either.

The worst pain I've felt outside of the disease would probably be when I had a kidney infection when I was 7 but I don't remember it that well. I've had the pain for such a long time that I don't remember life without it.

SmiteGarlic3 karma

How often does the pain triggers? How much it lasts?

bandaidknees5 karma

The pain is always there, it can get better or worse depending on environmental factors like temperature and weather or things like activity or emotions. Flare ups can last anywhere from a day to a month.

RockStarState3 karma

Got a real serious question here...

What is your favorite video game?

bandaidknees2 karma

My favourite games are Fallout 4 and Animal Crossing!

Mrpaquito_953 karma

Have you ever tried meditation of any sort? It requires no movement and it would definitely help with reaching mind wellbeing as you've mentioned before. With enough practice I know of people who manage to suppress certain physical feelings.

bandaidknees3 karma

Yes, I have tried meditation. I talked about this in a previous answer but I was born Buddhist and have been practicing for my entire life. That said, traditional meditation Shamatha meditation (Meditation that involves focusing on the breath) is difficult for me, as it involves focusing on nothing but the breath. My pain is so severe that I have to distract myself with things like movies, music and video game in order to prevent any extreme mental or physical anguish. So traditional meditation has me focusing on my breath, that isn't enough to distract me from my pain, which can lead to panic attacks and suicidality.

However, I am working with a meditation instructor and a therapist to try and find a form of meditation that is more accessible to me. Thank you for your suggestion, I hope I have the same success with meditation as others have had.

BigBearMedic3 karma

How do you feel about the general stigma associated with CRPS and all forms of RSD/Regional Pain Syndromes as far as opiod method treatments? I too suffer from CRPS following a crush injury to my leg that involved a fasciotomy. I still work, but the amount of TCA/Neurotin I am on is brutal, I only take pain medicine at night, I have tried to get into the study for the ketamine treatment program, but I am currently on blood thinners for an unrelated issues, which means I cannot be treated with it =(

I wish you the best of luck,from one suffered to another. Fuck this disease. Everyday is agony, burning fucking agony. I hate it for you, and I hate it for me.

bandaidknees4 karma

Any chronic and/or invisible illness comes with heaps of stigma. I've been accused of faking the pain by my friends, by my family, even by my doctors. On top of that there's the misconception that medication is bad for you or a sign of "weakness". Same applies to all mobility devices.

There's really too much to talk about in one answer but it's so real and so awful. Having to deal with people calling us liars on top of having constant pain is just ridiculous.

I wish you luck as well, my friend.

ParaLegalize2 karma

How do you feel about the general stigma associated with CRPS and all forms of RSD/Regional Pain Syndromes . . .

In reference to the above I have found that that many times people have accused me of faking it including doctors thinking I wanted drugs however even when I made it clear that is not what I wanted they still thought I was drug seeking. It's also hard to explain to people what sort of stuff you go through, similar to the above, nobody believes you.

bandaidknees3 karma

I agree with this response wholeheartedly. I find the only people who truly understand are not the medical professionals, but my fellow patients.

footlonglayingdown3 karma

Do you think valuable time and resources should be used to cure rare diseases or should those resources be used to cure more common diseases to help more of mankind?

ParaLegalize3 karma

Honestly speaking I think suicide should be legalized, and research should be directed to the best benefit. There are many different unknown illnesses like CRPS, fibromyalgia and so forth though. I don't have specific numbers though.

I have completely accepted that my condition (CRPS) will only get worse and may make me wheelchair bound. If I have to have someone wipe my ass by the time I'm in my mid 20's I certainly would not want to be around to live it!

bandaidknees7 karma

Dignity in dying is something I really support. People should have the right to decide if they want to live with little to no quality of life. I'm no longer to bathe myself and it's honestly awful. There's nothing worse than having to depend on your parents or a nurse to clean you, especially now that I'm 18.

bandaidknees2 karma

I really don't know how to answer this. I think resources should be spread evenly to research all diseases, no one illness is more important than any other.

Survival_Mode3 karma

What do you do for fun?

bandaidknees7 karma

I love playing video games! My two favourite are Fallout 4 and Animal Crossing, I play them as often as I can. I also love movies and TV shows.

I also really enjoy hanging out with my friends and boyfriend, going on dates and adventures together. Just spending time with the people I love is my idea of fun!

Angelinazeena3 karma

Does the pain get worse during your periods due to cramps?

bandaidknees5 karma

It most definitely does. Not only does the pain get worse, but due to the sensitivity my nerves have developed from the CRPS the cramps are also much worse too. My periods end up being a hot mess of terrible cramps causing terrible pain which then causes terrible cramps.

I'm lucky though, because I have a wonderful boyfriend who brings me chocolate and gives me tummy rubs when I'm really poorly.

immusing3 karma

Hi Ophi, Emma here <3

I've always wondered how wearing articles of clothing/having blankets on you effects your CRPS. Have you ever experienced tactile sensory problems?

Love you!

bandaidknees9 karma

Hey love!

I have to be really careful when shopping for clothing or bedding because if it's not super duper soft it hurts like hell. It hurts either way, but so does air on my skin so I figure having soft clothing is better. Also the pressure of clothing or a blanket often feels like a crushing weight on my legs despite being light as a feather.

I experience tactile sensory problems all the time. The root of CRPS is sensory problems, basically everything I feel is amplified. So the slightest touch causes my nerves to perceive it as an injury instead of a gentle touch. I also experience that "pins and needles" feeling you get when you're foot falls "asleep", but I get it really frequently and not just when my limbs are "asleep".

Basically anything that touches me, be it the wind or a person's hand is blown way out of proportion by my brain.

Love you too bb <3

MrsMarshmellow2 karma

From my (very limited) understanding of CRPS, it usually affects a limb or region of your body. Do your doctors have any ideas about why it may present differently in your case?

If there was one thing that you wish people would understand about CRPS, what would that be?

bandaidknees4 karma

Knowledge of CRPS is so little that even the best doctors don't fully understand it. My doctors don't know why it's presented the way it is with my entire body. I've been diagnosed with Fibromyalgia on top of the CRPS to try and explain the full body pain, although the diagnosis of Fibro doesn't fit as well as CRPS does. There's really just not enough research on the disease to know for sure.

That's a difficult question to answer... I'd say that it's a real disease and that the people who suffer it aren't faking. Being accused of lying is way too common for people who have CRPS.

wesleycui2 karma

What kind of music do you listen to?

bandaidknees3 karma

My music taste is eclectic. My favourite artists are Taylor Swift, Frank Turner, Melanie Martinez, FUN, Girls' Generation

throwwawayy_lmao2 karma

What causes this disease, and how/can it be prevented/cured?

bandaidknees4 karma

Common causes of this disease are accidents or faulty surgeries, but in my case, and many others, we have no idea what caused it.

There's no real way to prevent it because anyone can get it for any number of reasons.

There is no known cure to CRPS, some people find relief from the pain in different ways but not a cure.

thelegendofskyler2 karma

You said you have tried THC pills as medication? Well, that is the chemical in marijuana known for making you high. What you should REALLY try are CBD pills, which is the more therapeutic chemical found in marijuana used for pain. It doesn't get you high! So now worries on that one. My mom recently made some cbd oil and it works like a charm. Very pain relieving

bandaidknees2 karma

I really really really want to try it. I know that synthetic is not the same as organic, but this was the only option given to me by my doctors. I only just turned 18 and as cannabis is not an option for minors, my treatments options have been severely limited until now. I hope to pursue more treatments like it on the future.

verticalmisfit2 karma

Well done and thank you for being so brave and carrying through it all!

1) How did school work and how often were you in classes?

2) What caused your case of CRPS? In the article it said something about emotional trauma?

3) Also, do you know anyone else with CRPS? Is there like a support group or something?

Thank you for doing this AMA! Before today I didn't know about this terrible thing.

bandaidknees3 karma

Thank you for the kind words!

School has been super difficult, I'm technically still in high school but I've been out of classes for over a year due to the pain. I'm hoping to return if and when my doctors can find something that helps.

The cause of my CRPS is unknown but we do know that things like emotions, weather, temperature and activity cause flare ups.

I do know of a few people with CRPS but they're scattered around the world and therefore I never get to actually meet anyone with the disease. We do talk a lot online but being so sick we are unable to organize a proper support group or anything. My mother really wants to find or create a support network for families dealing with CRPS but we have so much going on right now that we just haven't gotten around to it yet.

eramais2 karma

If this were determined to be hereditary and likely to pass on to offspring, would you consider having a child?

bandaidknees3 karma

Well we know that CRPS isn't hereditary, but even so it has impacted my view of having children. It's hard to explain but basically the knowledge that I could bring someone into the world who has even a 1% chance of suffering as much as I do is just devastating to me. It's hard to want to create life knowing that they could end up living like I do.

That being said I do want children, but before I even consider having a child I need to work with a therapist to deal with my fears of suffering.

Bewgalew2 karma

Have you tried a spinal cord stimulator?

bandaidknees2 karma

No, I haven't. I've been interested in trying one for some time now but we've been focused on other treatment options for the past few months. When things settle down I fully intend to ask my doctors about it!

throwawaythiscomment2 karma

Are you religious?

bandaidknees10 karma

Yep! I'm a practising Buddhist and have been since I was born.

I strayed from the path a bit during my tween years but I've been really passionate about it for the last few months. I'm working on getting back on the path and helping out in the community. It's hard, especially because a lot of the teachings are in book format and I struggle to read because of the pain, but I'm trying my very best and enjoying it all the way.

It's brought a lot of happiness and purpose to my life, even though I don't fully believe in the stories that any religion has, I fully appreciate the teachings and find them super helpful for living a positive and fulfilling life.

throwawaythiscomment3 karma

Very wise response! You seem like you've not let your disease debilitate you mentally. Reddit loves you!

bandaidknees2 karma

Aw, thank you so much! I love Reddit (and you) back!

Noireayy2 karma

Could you try to describe the pain, does it feel like a cramp, or getting hit really hard?

bandaidknees5 karma

CRPS pain is most often associated with a burning sensation, but as it is neurological it's possible for the patient to experience any range of sensations. I've experienced stabbing, cramping, burning, freezing, numb, throbbing etc. there's really no limit.

In terms of the level of pain it's usually categorized as being in the top 5 most painful conditions in the world, most often coming in at #2. Doctors also say that it is worse than amputation, child birth and cancer pain. (However all pain is relative and I don't like to compare suffering because it all sucks).

bnasty1998-15 karma

bandaidknees4 karma

Many times, yes. The only known way to turn the pain off is to turn the brain off, and that means death. That knowledge has caused me to attempt to take my life more times than I'd like to disclose. I try to focus on the people and things in my life, instead of that knowledge. That's why I'm still alive today.

Flarpflipple1 karma

You're so incredibly strong

bandaidknees1 karma

Thank you, you're so sweet omg.