Comments: 175 • Responses: 64  • Date: 

ChristianBMartone9 karma

I need a question, so I'll ask one: how did the pain affect school?

I was recently diagnosed with CRPS, my doctors currently are arguing whether it is type I or type II, to the point they're considering both are correct. It only affects my leg, but because of it my life has changed very much in the past months. I simply cannot imagine having this all over my body and since 9 years old.

I just sincerely wish I could take away your pain. One thing I've learned since developing CRPS is that pain is qualitative, not quantitative. No one hurts more than another, just differently. But it's hard not imagine you hurting so much more than me.

Another is that chronic pain is so terribly hard to understand and others so easily become skeptical. Chronic pain is so often connected with emotional pains, because of that.

I wish you the best.

bandaidknees9 karma

Oh man, school is one of the most severely affected things TBH.

I've missed God knows how much school since the pain started. Whether for doctor's appointments, ER trips or just being unable to get out of bed because of the pain, I've missed hundreds of classes.

I've actually been out of school for almost a year because of my pain, I'm trying super hard to get it under control so I can finish high school and get to university.

I've had friends and classmates turn on me because of the pain, I've had teachers and other members of the faculty say terrible things to me for missing class. I was always a straight A student before the pain started so seeing my school life suffer so harshly has been really difficult for me to deal with.

Thank you for your comment, it's always nice to hear from someone who understands. I hope my reply wasn't too rambley, school is a difficult topic to sum up into an explanation.

I wish you the best as well, have a great day <3

amethodicalmadness8 karma

What are you favourite things to do?

bandaidknees18 karma

I love love love gaming! I've been playing Fallout 4 pretty much non-stop recently, it's absolutely my favourite game ever. I play Portal 2 often with my boyfriend and me and my friends love playing Minecraft together! My other favourite games are the Last of Us, Hunie Pop and Pokémon!

I also dearly love making films, I started learning about camera work and stop-motion animation at a really young age and have had a passion for it ever since. I've been too ill to make any films recently and holding a camera is impossible for me but I still love watching films and reading reviews or critiques.

I hope you have a nice day! :D

amethodicalmadness3 karma

I hope you have a nice day too!

I love films too. Have you watched Submarine? It's a great film, and since you're into direction, it might interest you. Because the direction is to die for. It'll ruin you. :)

bandaidknees4 karma

No I haven't actually! Is it on Netflix? I'll try to find somewhere to watch it! Thank you for the recommendation BTW I'm always looking for new movies to watch! It's so nice to meet someone who has the same appreciation for film that I do!

samz0rp12 karma

could you possibly use a tripod for the camera.

bandaidknees3 karma

The lovely ReadDwarf summed it up pretty well, but yes I do use a tripod. The thing is, a film made of completely static shots would look rubbish so on top of setting up the tripod and everything I'd still be moving the camera around. Being sat upright and out of bed is exhausting as well.

Thank you for your suggestion though, it was really sweet of you to offer your advice!

Baby_venomm7 karma

Do you currently take medicine to mitigate the pain?

bandaidknees22 karma

Unfortunately, no. :( I've tried around 30+ medications over the years and none of them have been able to help. I've tried everything from Advil to medical marijuana and nothing has even made a dent. As a last resort my doctors are putting me on an opioid patch that I'm supposed to begin soon.

In the near decade that I've had it there's been no developments in the treatment of CRPS - to be honest I don't think there's much research going into it at all. I'm hoping that by talking about it I'll be able to spread the word and further the progress!

Thanks for your question! Hope you have a great day :3

TopherReeves14 karma

I'm a physician who has treated crps with iv ketamine, IVIG, plasma a chance and lidocaine. You should look into an evaluation at a facility that offers these modalities as the results have been quite favorable

bandaidknees5 karma

I've actually tried almost all those things! Sadly none have helped. I'm not familiar with IVIG, what is it?

tigerhawkvok4 karma

Not a doctor, but my sister and good friend are. Almost certainly intravenous immunoglobulin.

bandaidknees2 karma

Oh I haven't tried that! Is it an opioid? If it is that would explain why.

CodeBrownPT5 karma

Have you tried mirror therapy or graded motor imagery? Desensitizing therapy?

bandaidknees5 karma

Yes, yes and yes. Mirror therapy was pretty cool but the movements associated with it were painful and overall it wasn't helpful. Desensitizing therapy made the pain worse.

Baby_venomm2 karma

Wow. I'm sorry you gotta deal with that and that really sucks no one is looking into it. Can you swim? I've heard that's good for recovering from injuries and not sure if it has some therapeutic effect.

And what are your favorite things to do in bed?

bandaidknees7 karma

Aw thank you, you're so kind. Unfortunately swimming isn't an option for me. I've tried it multiple times (I was a total water-baby so I swam as much as I could when I was younger, had to stop due to the pain). Water hurts my skin, it feels like knives or a thousand tiny ants biting me. The exertion of staying afloat or propelling myself IS easier than walking, but it's still very painful.

As far as my favourite things to do in bed... ;) ;) ;)

I joke, I joke. I have a laptop that I'm super grateful for as it allows me to watch movies, play games and brows the web without having to move. I spend a lot of time watching movies and TV shows, I play Minecraft and whatever other games my a Mac can run, lol. Movies and games are pretty much my life asides from various social medias. If I'm feeling well enough I'll make my way downstairs to my living room where I have a PS4 and I'll play Fallout 4!

Baby_venomm2 karma

Going off that joke, do you masturbate? I'm not sure what age you are, but are relationships something on your mind? Is maintaining friendships hard?

Also those are some solid hobbies!!

bandaidknees8 karma

I do actually! Masturbating is honestly really hard because even moving my arm is super tiring and painful. I'm still trying to find sex toys that improve the experience.

I actually have a lovely boyfriend and we do have sex. Both romantic and sexual relationships are difficult. Getting out of the house for dates is hard and affording them sucks because I can't get a job due to how sick I am. Sex can be painful, but is usually worth it and we are both trying really hard to make it work. It's just another thing that we have to learn about my body and work to get around.

Maintaining any relationship, even with my parents is hard. Talking to people is exhausting, let alone doing activities with them. I've lost a lot of people because of my illness, fair-weather friends are awful, but CRPS has helped me weed out the weak ones haha.

Baby_venomm3 karma

I believe you're doing a great job! At everything. awesome replies. Do you use a wheelchair? Not sure if that would help because you wouldn't be moving as much. And what grade are you in?

My gf suggested a "womanizer" as a sex toy. Might want to look into it! She says it has zero movement and you won't need to move to use it

bandaidknees5 karma

Aw thanks! You're so sweet!

I do use a wheelchair! It's honestly one of the best things in my life, it gives me so much freedom.

I'm in grade 12 (for the second time - I had to take a break from school due to my health). I'm trying to finish up my courses this year but I haven't been well enough to get back to school.

I'll totally look into that! Thank you so much for the recommendation! Everyone keeps suggesting dildos and I'm like ??? That's like the most involved sex toy there is lmao

Mathgeek0075 karma

How do generally more generally-considered-enjoyable experiences feel to you; ie: Back scratches, massages, sex, etc?

bandaidknees6 karma

The other reply summed it up pretty well TBH. Basically everything is painful, no matter if it's a typically enjoyable or harmful experience.

I do find that if I am prepared for the contact and if I can prepare myself for it I can control the pain a little bit. Having a stranger come up and shake my hand is much more painful than having my boyfriend tell me he's going to rub my head before he does it because I can mentally and physically prepare myself.

Things like back rubs and massages have to be VERY gentle, and I mean like you're holding a new born butterfly gentle. I can still enjoy them if they're given by someone I trust and if I am in the mood for it. It also depends on the level of pain I'm experiencing at the time.

Sex... that's a tricky one. On one hand CRPS gives me a bit of a bonus because all my nerves are SUPER sensitive, even the ones that give pleasure. So pleasure during sex is heightened, but the motions of sex do hurt. Even if it's super gentle just rocking my body a bit will hurt. I do find that, if I'm having a relatively manageable pain day, I can enjoy sex. I'm a hyper sexual person so I make it happen because it's really something that I enjoy. As I only recently started doing sexual activities it's still something that I'm exploring and I assume it will get easier with time as me and my partner figure out my body and how to interact with it in a way that doesn't cause pain.

pleasespeakwellofme4 karma

I cannot speak for OP but do have CRPS. It can be so painful that a fan blowing on the area is intolerable. For instance: I have to take morphine to just be able to tolerate shaving my leg and wearing shoes is very very painful. People with CRPS often cannot tolerate wearing clothes or shoes or have very specific fabrics/sensations they can handle and ones they cannot. Imagine parts of your body having like super sonic sensory abilities but also being fire and stabbed and sat on by an elephant. Thats basically CRPS in a nutshell.

I have it in my entire left leg up to my hip and my left foot along with parts of my right foot and it's left me in a wheelchair because walking is too painful. So generally any touching anywhere the CRPS feels like shit. Unfortunately many normal activities like massages or sex can just irritate your nervous system since CRPS is a disorder of the brain/nervous system.

Its amazing how bizarre it is. My husband can be sitting on the couch next to me and if he is nervously tapping his leg, the reverberations can make my feet and legs hurt. Super weird awful disease.

crackhappy7 karma

I had something very similar caused by surgery, where they damaged a nerve cluster. I was very lucky that it was eventually fixed by an implanted spinal cord stimulator. I actually got the device removed from my back last month. Since I am now 5 years pain free.

bandaidknees3 karma

That's so wonderful to hear! I've been researching about spinal stimulation, I keep meaning to ask my doctors about it... It seems to be a really helpful device.

ChristianBMartone2 karma

Recently diagnosed, myself. I can vouch for sensitivity issues. When I wear shorts and the wind blows against my leg it can get so uncomfortable that I have to go inside and rest before walking again.

bandaidknees3 karma

It's so freaking difficult to find clothes that are comfortable TBH and it's awful because the air hurts my skin but I can't find pants to cover my legs with that don't cause just as much pain. I'm constantly looking out for super soft clothing that might give me some relief.

ChristianBMartone3 karma

I'm nearing the end of a long drawn out process of leaving the army due to CRPS. I don't get any exception to uniform so I just live with the pain.

bandaidknees4 karma

Oh boy that's awful, I'm so sorry :( I hear that CRPS is quite common in army members.

ChristianBMartone3 karma

The on PA at the troop clinic told me it's a diagnosis given when soldiers lie to get out of work.

bandaidknees4 karma

What??? Are you for real? That's so awful oh my god.

ChristianBMartone3 karma

Yes, I am for real. I waited nearly 5 months for a diagnosis because she wouldn't let me see the proper doctors. I got lucky when a medic overheard and slipped off to tell the officer in charge.

bandaidknees3 karma

I feel that :( misdiagnosed for 5ish years I think. People can be real dicks about invisible illnesses.

DronedAgain5 karma

Jeez. Does it hurt to type?

bandaidknees14 karma

Yes, actually it does. Hurts to do pretty much anything.

There are lots of things to help though, I use predictive text on my phone and I get my friends or family to help me write stuff out if I need to. I occasionally use speech-to-text programmes but I find they tend to turn your words Dr. Suess-like poems, haha.

Thank you for asking! :)

chtulhuf8 karma

I just imagine you writing that last haha while contorting in agonizing pain 😟

bandaidknees6 karma

That's actually pretty accurate lmao

Zef_Apollo5 karma

I'm a PhD student in Clinical/Medical Psychology and my research and clinical focus is on pain. I've seen a number of CRPS patients over the past couple of years and they have really benefitted from Cognitive Behavioral Therapy for pain. Have you ever tried or considered psychological therapy to help with your pain?

bandaidknees2 karma

I've done CBT before, not necessarily as treatment for CRPS but I have done it. I'll bring it up at my next appointment with my doctors. Thank you for the suggestion!

squidtrap4 karma

Have you done physical therapy for your condition? I've had a patient with CRPS and had some good progress made.

bandaidknees9 karma

Yes, I have. I've done it I'd say about 7 times? Maybe closer to 10... I've tried all kinds from weekly appointments to full hospitalization and 8 hours a day of physio for over a month. It never gave me a lasting relief from my pain. :(

As far as I know physical therapy is only really effective if the patient has had the condition for a limited amount of time but by the time I was diagnosed I'd had CRPS for 5 years already, so I missed the window. I was able to find short-term relief from it for a little bit but in the last few times I've tried it it's just caused my pain to get worse.

It is a super effective treatment with most patients though so it's a really good suggestion and I super appreciate you offering it!

squidtrap2 karma

Thanks for responding! It's true that CRPS becomes more difficult to treat once it enters the chronic stage. I actually did a class project on CRPS for physical therapy school, so i was extra intrigued about your experience. Thanks again!

bandaidknees2 karma

That's super neat that you did a project on it! I'm really grateful that you were able to educate your teachers and classmates on it, even a little bit of education can make a huge difference.

Dog3Way3 karma


bandaidknees2 karma

I've already answered this question, so I suggest you read the other comments, but the short answer is no.

Dog3Way3 karma

Thanks for answering my question. If you read my comment history, it wasnt meant to bait you but instead discuss the effacies of different modalities in relation to your neurological condition. I read the rest of your thread and while its too late to retract my question, thanks for the rude answer.

bandaidknees2 karma

I don't believe my answer was in anyway rude. I provided an FAQ and have answered the question 5 times now. Sorry if it came off that way, it was not intended to. I didn't see your question at all as bait, merely a question that I had already answered.

I also want to mention that I've received 70+ questions in the past 24 hours, all about a subject that is difficult to talk about. To me, just offering to answer questions was a big deal, so apologies if I didn't answer quite the way that you wanted me to but that's just what happened. Like I said before, I suggest reading my previous answers to get a more in depth answer, if that's what you were hoping for.

litepresence3 karma

Have you tried Lion's Mane, acetyl l carnitine, and alpha lipoic acid supplements? If not please research and consider the stack for nerve regenerative support.

bandaidknees2 karma

I've never heard of those things, I'll ask my doctors about them. If they're for nerve regeneration I don't think they'll make a difference because CRPS isn't neurodegenerative, it's just neurological. My nerves are technically fine there's just a bit of faulty wiring.

Zef_Apollo3 karma

Followup question to another one I've posted in this thread - do you have Fibromyalgia also? I've heard of CRPS as being a specific region, not whole-body.

bandaidknees3 karma

I have been diagnosed with Fibromyalgia as well as CRPS but to me it doesn't add up. I have pain in my organs as well as in my limbs and Fibromyalgia doesn't affect a person's organs. I've done multiple tests trying to figure out what's wrong with my kidneys (ultrasounds, MRIs etc) and nothing has showed up. Fibromyalgia also doesn't usually present as severely as my pain is. CRPS also can spread, there are many documented cases of it. CRPS can affect every single nerve in your body, it's all fair game. Organs, skin, limbs etc. they can all get sick.

My doctors diagnosed me with Fibromyalgia simply because (and I quote) they "have never personally treated a case of CRPS that spread throughout the body". So they are calling it Fibromyalgia because of their lack of experience.

To be honest I don't think the diagnosis really matters, either way we don't have a cure or even anything to take the edge off.

TheGabby3 karma

Is it constant or does it ever fade or come and go? Does it interfere with your sleep?

bandaidknees6 karma

The pain is constant but the severity changes. I consider myself to have "bad days" and "worse days", as there is never really a day without pain.

Yes the pain does interfere with sleep, I often go whole nights without sleeping at all, although I have found some meds that knock me out and help me sleep a bit. Generally without assistance sleep is very hard. The anxiety the pain causes me also brings on very traumatic nightmares that make it difficult to get a good nights rest as well.

ThePsychoBear3 karma

How in the blue hell can you cope with pain like that?

bandaidknees3 karma

I truly do not know. I don't cope as well with it as people might think. It's destroying me inside but I manage to look okay from the outside.

darian2hunter3 karma

What is your daily routine? Does it go through periods where it can be better some days and worse on the other?

bandaidknees7 karma

My daily routine summarized would be: wake up, take my large assortment of medications, choke down some food and then spend all day trying to distract myself with movies until it's time to take my nighttime meds and go to sleep.

There are periods of change, I wouldn't say better though. I have what I would call "regular" days where the pain is slightly more manageable and I have worse days where the pain is flaring up.

darian2hunter5 karma

Jesus that must suck, I sincerely hope that somehow you can get better. I guess just try to stay positive!

bandaidknees3 karma

Thank you so much, it means a lot.

longleaf12 karma

Wow that one hits home, trying to keep your mind consumed between med doses. I'm sorry that you have to go through that, I hope you find some relief soon!

bandaidknees3 karma

I hope so too. I'm sad to hear that you can relate, I hope things get better for you.

Persian_Lion3 karma

What is a singularity?

bandaidknees3 karma

Depends what kind of singularity you're talking about. My personal favourite is technological singularity:

"The technological singularity (also, simply, the singularity) is the hypothesis that the invention of artificial superintelligence will abruptly trigger runaway technological growth, resulting in unfathomable changes to human civilization. According to this hypothesis, an upgradable intelligent agent (such as a computer running software-based artificial general intelligence) would enter a 'runaway reaction' of self-improvement cycles, with each new and more intelligent generation appearing more and more rapidly, causing an intelligence explosion and resulting in a powerful superintelligence that would, qualitatively, far surpass all human intelligence. Science fiction author Vernor Vinge said in his essay The Coming Technological Singularity that this would signal the end of the human era, as the new superintelligence would continue to upgrade itself and would advance technologically at an incomprehensible rate." - Wikipedia

Persian_Lion2 karma

The singularity of a black hole

bandaidknees3 karma

I'm pretty sure that it's what causes black holes, right?

sirgraemecracker2 karma

What if your wheelchair had AI...

bandaidknees3 karma

Um... that would be... interesting? I'd pray to God that all the conspiracy theories about AI overthrowing humanity aren't real lmao

ssrlcc2 karma

Have you read Wait But Why's post on AI? It's freaking unbelievable http://waitbutwhy.com/2015/01/artificial-intelligence-revolution-1.html

bandaidknees3 karma

BRB having an existential crisis

iSynthesize3 karma

I work with someone who also has CRPS (we are graduate students in the same lab), what would be things I could do to help her feel better? Or things I may not be aware that could potentially hurt? How do your friends and family help you?

Thank you!

ReadDwarf3 karma

I am the before mentioned bf. In general if you have to have physical contact, make sure she knows and you are as light touching as humanly possible. Something as simple as a poke could feel like a punch from Chuck Norris, at least with OP. Depending on your co-worker's pain level, a slight or strong breeze could cause extra pain.

iSynthesize1 karma

Another question, though it may be inappropriate and you don't have to answer. My lab mate is married and I've yet to work up the courage to ask her if her and her husband can have any sort of sexual interactions. Perhaps you can help me?

bandaidknees4 karma

Not inappropriate at all! It's a common concern, I have it myself frequently. Personally, sex is difficult for me, but so so worth it. Just like any other aspect in life with CRPS, it causes some barriers and obstacles to get over. Me and my partner have been together 3 months and we're still trying to sort out how exactly to make sex work. A lot of props and pillows are needed and he does a lot of the work, which sucks but it's what makes it possible.

It also really depends on how I'm feeling at the time, if my pain is more manageable sex is more enjoyable. We do go some periods of time without sex because some days I'm just not up to it. It's a bit of a test on the relationship but it's just a fact of life.

iSynthesize2 karma

Thank you! It's not something I talk about with her, but do talk about with my other friends. I was just wondering if the whole process hurt or could be enjoyable. Thank you for sharing about such a personal topic!

bandaidknees2 karma

I hope it was useful! You're super sweet, thank you for asking.

bandaidknees3 karma

The first thing I recommend is DO NOT TOUCH HER WITHOUT HER EXPLICIT CONSENT. This should be an obvious thing, even for dealing with able-bodied/healthy people, but it happens more often than you think. Even a slight nudge or bump can send a person with CRPS into an awful pain flare, so please be mindful when around her.

One of the kindest things you can do for a person with CRPS is read up on it, read everything they give you and find out more on your own and then tell her that you've done the research. It means more than you would think. Also respect her boundaries and how they might be different from yours. She may need to take more breaks, hang out less, sit down more etc. Be understanding of that and offer help when she might need it.

I really appreciate it when my family/friends take the time to learn about CRPS, when they ask before touching me or my mobility devices, when they ask before they ask me a personal question.

Most importantly, keep treating her like your friend, like the graduate student you learned with, like a mature adult human being. Treat her with compassion and understanding, just as you would anyone else.

Thank you for such a thoughtful comment, it's so wonderful to see someone asking questions like this. The world needs more people like you.

iSynthesize2 karma

Thank you so much for your response! I'm slowly getting better at reading her, and it doesn't help that she's stubborn about letting me know she's in pain! But I try to be very conscious of food allergies, her lifting things more than two pounds, accidentally bumping into her, and generally asking how she's feeling if I notice she's a little extra red. I even warned my boyfriend, who is a notorious bear hugger, that a wave would do just fine. Thank you for the suggestions because while I have done some research, I could definitely do more!

bandaidknees2 karma

You sound like a fantastic friend, she's super lucky to have you.

inmiu2 karma

Hi ophelia! First off, i love your instagram account! I'd like to ask how you deal with the pain? Any special distraction? I read that medication didn't work for you, so I was wondering if you just power through or if you found your own way of relieving some pain?

bandaidknees2 karma

Hello! Thank you so much! I mostly distract myself by watching movies and playing video games, as well as constantly being on Twitter, Facebook etc. I pretty much just have to power through as there's nothing at all that helps with the pain. I've learned to cope best I can and am hoping to find a therapist soon who has some experience with chronic pain and can help me develop some techniques :3

Thanks for asking I hope you have a great day!

uppol2 karma

How does swimming or bathing feel to you?


bandaidknees2 karma

Water hurts my skin really badly so unfortunately swimming and bathing are really painful experiences.

CaptHorney2 karma

How is the rivalry with the BLDS sufferers?

bandaidknees3 karma

I don't actually know what BLDS stands for, and I don't think I have a rivalry with anyone or any illnesses? I'm not sure what you're talking about.

jalif2 karma

Do you have a problem with people who suffer from BLDS?

bandaidknees2 karma

I've been asked this twice now, I have no idea what BLDS is.

cegbe2 karma

What type of pain do you experience, is it an arthritis type pain or burning pain? Is there also anyway we can help cure it?

bandaidknees7 karma

CRPS is generally most associated with a burning sensation, but my pain isn't just limited to that. It's a neurological pain so it doesn't have a specific category or type. It can be burning, stabbing, freezing, numb, tingly. You name it - I've felt it. In terms of pain scale CRPS is considered one of the most painful conditions in the world, usually rated the 1st or 2nd most painful disease of all time. Doctors say it's worse than the pain an amputee feels, worse than the pain a mother feels when giving birth, worse than cancer pain.

The best thing anyone can do at this point is spread the word about CRPS and pray that we can find a cure, or even anything to take the edge off. I've been to three different hospitals and tried everything they have to offer and had no results, so at this point I'm relying solely on research (or a miracle). So please share this post with people you know, share my YouTube channel or some articles about CRPS (I'll leave some at the bottom of my reply) and try to educate as many people as possible. If you have any friends that are medical professionals I always appreciate their suggestions and advice.

Thank you so much for your question and the offer of assistance, it really does mean a lot. I hope you have a wonderful day <3

Complex Regional Pain Syndrome links (careful there might be a few graphic photos depicting the affects of CRPS): http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm http://www.rsdcanada.org/parc/english/RSD-CRPS/whatis.html https://en.wikipedia.org/wiki/Complex_regional_pain_syndrome

doubbg3 karma

Doctors say it's worse than the pain an amputee feels, worse than the pain a mother feels when giving birth, worse than cancer pain.

What the fuck? OK, I have a couple of questions based on this.

1) I noticed in your YouTube video that you speak normally and seemed relaxed. How do you manage to present yourself like that when you're in constant excruciating pain? Is this something you practice?

2) Since you're in pain a lot of the time, do you have a higher pain tolerance? For instance, if you burned your hand on a stove, would it hurt as much as with another person, or does it just feel like nothing compared to your CRPS?

bandaidknees5 karma

It is most definitely practise. It's not socially acceptable to sound anything but "normal" and happy, so that's what I strive to do. I find that my message tends to get across better when I'm more positive and presentable. I also film all my videos on days when I'm at my lowest pain possible.

Pain tolerance is a difficult thing. I am able to tolerate an amount of pain that someone else would be crying at, it's become my normal. It's like hell but I can't always cry, that would be exhausting and I wouldn't have enough tears. If I burned my hand it would feel 10 times worse than a normal burn because of how hypersensitive my nerves are. Just stubbing my toe causes me excruciating pain.

doubbg3 karma

Wow, I have never heard of this disease before. That's terrible. Kudos to you for being able to manage as well as you do - I have a way lesser chronic illness and I struggle to present myself as competently. I hope you can find relief one day.

bandaidknees3 karma

Thank you <3 same for you.

Waschbarren2 karma

Do you read a lot as a result of your bed riddance?

bandaidknees6 karma

Unfortunately, no. For some reason, not sure if it's due to meds or pain or general brainfog, I really struggle with reading. I was the highest level reader all throughout elementary school but as my pain has worsened I've found it difficult to focus on words or follow a storyline.

When I'm feeling up to it, I have found I'm able to read graphic novels and mangas for short periods of time though, so I have been enjoying the new 52 Batman and Madoka Magica!

laurakopp192 karma

Do you feel like your pain tolerance has increased due to being in constant pain? Also, is it all day every day or is it more of and on and off pain?

bandaidknees2 karma

In some ways, yes. I'm less concerned by stubbing my toe and things like that, but at the same time the pain of stubbing my toe is 10 times worse than it would normally be because my condition causes all my nerves to overplay pain signals. So stubbing my toe would be similar to the pain I would feel if my toe was amputated.

The pain is all day, every day, 24/7. There are days when the pain is worse and there are days when the pain is less worse, but it never shuts off.

aeschenkarnos3 karma

Have you tried any form of psychedelic? LSD, ketamine, MDMA, psilocybin or ayahuasca? These can be extremely helpful with PTSD, depression, OCD and similar psychological illnesses, if approached respectfully as medicines. If your illness were psychosomatic, it may help?

bandaidknees2 karma

I've tried ketamine with no results. Unfortunately my doctors are hesitant to give me any more "extreme" medications because of the fact that my pain is long term. The pain is also neurological so I'm not certain if some of the ones you listed would help at all. I'll do some research though, thank you for your input!

Tsunami68662 karma

How has this disease affected your love life?

bandaidknees2 karma

I assume you mean sex but CRPS actually does affect all aspects of my love life, not just in the bedroom. Getting out of the house for dates is difficult, finding a place that I can afford (I'm too ill to find a job) and finding somewhere that can accommodate my wheelchair is super difficult.

In terms of sex, it is painful. Even super laid-back relaxed sex can cause immense pain but it's usually worth it. I see it as just another obstacle that me and my partner need to work with and we will find a way to make sex enjoyable for both of us! Lots of pillows and props are useful to make me more comfortable and my partner generally does more of the work so that I'm not in too much pain. On days that I'm not feeling too bad I'll exert a little more energy.

Tsunami68663 karma

Thx for your answer, I actually meant love life as a whole (1st paragraph of your reply). It's great that you found someone to help you with your life. Best of luck for you.

bandaidknees2 karma

Thank you! :)

georgelbsilva2 karma

Your disease doesnt have a cure? I also have similar problem: Intersticial Pulmonar Fibrosis. Its so rare theres no specific medicine for it.

bandaidknees3 karma

Unfortunately there's no known cure or medication (and not a whole lot of known research either). It's a really tough circumstance, I hope it gets better for both of us.

Jerbearbruh2 karma

May I ask if you didn't mid of course, where is the CEOs located in your body? An has it spread at all? My sister has crps developed after a blood infection that damaged her neuropathy... (Long story) but just wondering as hers started in her foot an is slowly traveling up her leg... Also I am being told that I might be developing crps in my foot as well... We both have a similar bone anomaly condition... But it's not genetic. Also we have both neuropathy damage is to different reasons (hers was slightly explained, mine was due to a nerve having to be cut out of my foot from so many surgeries damaging an incasing my nerve in ungodly amounts of scar tissue, which they know think might be causing it) thank you so much!

Edit ; also if you want any more info just send me a PM an I can really tell you the full stories... Also if it is allowed an you don't mind me asking where are you from?/located? Not address just city/state... My sister has had a lot of trouble finding docs but she now goes to one of the top researching facilities for CRPS/RSD. She is currently undergoing certain research procedures an experimental procedures, just because she hasn't been able to walk in almost 10 years now an she is more than willing to try WHATEVER she can possibly to get pain relief/any relief

bandaidknees4 karma

The CRPS started in my knees, both at the same time. I wasn't involved in any injury or trauma, it just started. For about 7 years it stayed just in my knees, it worsened but it remained in the same spot. About a year ago it suddenly spread to my arms and from there to the rest of my body.

I live in Ottawa, Canada but I've been unable to find sufficient treatment here. My best recommendation is a clinic located in Philadelphia at the Childrens Hospital of Philadelphia (CHOP), but I'm not sure how old you or your sister are so I don't know if that clinic would help at all.

I really hope you and your sister are able to find help somewhere, keep searching and never stop talking. The best thing to do is keep educating people in the hopes that one day we will find a cure. Stay strong. <3

ReadDwarf3 karma

She is asleep right now, but for a quick answer. It developed in her knees to start. It wasn't triggered by an injury. It was left untreated for a very long time (over 5 years) so I slowly spread. It is actually her full body. A few weeks ago there was a restrained laugh that it was even on her tongue on a particularly bad bad day, as she could feel a tongue burn. She will probably give you some more helpful information in the morning. I wish you and your sister some luck in finding relief.

Jerbearbruh2 karma

Wow... I want her to know that I definitely don't understand exactly what she's going through but I feel deeply for her... She is so strong an I hope she knows that! Thank you, I'll be looking forward to get the chance to chat! Edit: slight spelling

bandaidknees3 karma

Thank you for your support, I'm sending love and strength back at you.

TheMooseHunter2 karma

Favourite Kanye West song?

bandaidknees2 karma

TBH I'm not a Kanye person. He's kind of a dick... Not a fan of his music either. Or his way overpriced clothing line. Or the fact that he's married to a Kardashian. I could go on for a while.

Kevin691382 karma

Have you considered medical marijuana?

bandaidknees2 karma

Yes! I've tried synthetic THC with no results, I'm hoping to try real cannabis sometime soon.

Necrolifter2 karma

Is your hair length due to your condition or do you choose to rock short hair? You're so pretty by the way! Makeup on point, girly!

bandaidknees3 karma

Due to the pain in my arms, and the pain that showing causes me, it's really difficult for me to keep clean, so having long hair would be difficult as it would get really nasty. I shaved it about a year ago to make hygiene easier. So technically I didn't lose my hair to CRPS, it was my choice to shave it, but it was mainly motivated by my illness.

Thank you so much, you're so sweet! Makeup is really difficult because of my hand tremors so it really means a lot you saying that.

orangejulius2 karma

Hi bandaidknees, your post has been removed because:

You have not provided adequate proof within a reasonable amount of time. Please see the /r/IAmA sidebar for posting guidelines. Thank you!

Please contact the mods if you need further assistance

bandaidknees0 karma

Hi mods! I would appreciate if you'd put the post back up as I supplied you with a link to over 20 videos of me, Ophelia Brown (@bandaidknees) talking about the very illness that started this thread. Thank you!

orangejulius5 karma

Hi - looking through the proof I don't see evidence that you have that disease. Do you have anything that would tend to prove that you're diagnosed with CRPS?


bandaidknees1 karma

Do you need a note from my mum or something? It's an invisible illness so I can't show you a bone sticking out or anything. I can show you my 15 thousand dollar wheelchair? I feel like that would be sufficient proof?

orangejulius3 karma

Your doctor would be preferable. Only you know what you have access to.

bandaidknees1 karma

I'm struggling to understand why I need to provide personal medical information to post on a forum. I've never been put in this position before.

Would my accessible parking pass work? It's certified by a doctor and the government. Can I email it to you or something?

orangejulius3 karma

you can redact it.

bandaidknees0 karma

Sorry I'm not sure what "redact" means?

yummybreasts1 karma


bandaidknees2 karma

It is fairly rare, I've only met 5 people who have it in my entire life and 4 of them were because I went to a specialized clinic solely for people with CRPS. It also has little to no research being done about it and very few of my doctors know about it before meeting me. Medical articles and journals also classify it as being a rare disease.

69ingchimpmuncks1 karma

Do you smoke weed?

bandaidknees2 karma

Nope. I've taken synthetic THC oil in pill form (and it didn't help the pain) but I've never smoked weed.

pleasespeakwellofme2 karma

Marinol is really different than actual weed because theres no CBD in it. Im about to fly out to Colorado (oh god flying in a wheelchair sounds like hell) so I can try several kinds of weed but specifically ones HIGH in CBD to help my CRPS pain. I started on Marinol and now have started smoking weed and its been GREAT for my gastroparesis nausea and my daily headaches but not pain so I want to see how CBD may help. It may be worth looking into weed that has more CBD as thats the part that is best for neuropathic pain. Like you, I have tried A LOT of stuff and so far only find morphine and IP ketamine infusions helpful.

bandaidknees2 karma

I have looked into it, I think that might be our next try if the current opioid I'm on doesn't work out. It's a matter of getting my doctors to administer it and all that, I'm also currently a minor but I'll be an adult soon so it'll be more accessible to me.