I have a rare nerve disease that is the most painful disease known to science, all from being stepped on at prom, AMA.

Have you considered any legal action against Soulja Boy?

No. But if I could, I so would. That song is just atrocious in itself. Think about it? Superman that Ho? Wtf is that?

You asked, sorry. http://www.urbandictionary.com/define.php?term=superman

They made a song out of that shit? Children sing a song about that?

There are alternative interpretations.

Oh my god. He is really a brilliant rap lyricist.

Was this actually caused by being stepped on, or was it a latent disease that was just manifest for the first time after being stepped on?

I personally think because of my mitochondrial disease it would of happened at some point, whether I was stepped on or not. But the actual event that triggered the disease was being stepped on. I could have gone my whole life not getting it, but at the same time I think it probably would have happened anyway.

Have you ever stepped on a Lego?

I have, and it isn't fun. But I'm pretty sure that is the same for everyone. Maybe a little worse for me though.

I can sort of relate because I once stepped on and destroyed my friend's newly finished Star Destroyer on a wood floor. That was not a fun day.

They are little land mines on the floor. Fucking hurts.

Greetings from a fellow CPRS/RSD'er (right hand and wrist). Diagnosis after a month - that is pretty impressive! A good bunch of supportive doctors makes all the difference. Thanks for doing this AMA to raise awareness, and may all your flare-ups be short lived :)

I was so incredibly lucky (though I didn't feel so at the time.) Both my PT and my ortho were well versed with RSD so they spotted it immediately. I've heard horror stories of people not being diagnosed for years. I hope you didn't have too much trouble and that you are doing well.

How did you get correctly diagnosed? What type of doctor diagnosed you? What are you doing for the pain?

[](www.tumblr.com/letsbechronicallypositive) First, there is my proof all linkdified--I didn't know it actually had to be linked. I also have a picture, but I don't know how to do that--new to actually posting on reddit.

I was actually diagnosed by my orthopedist, who luckily had been educated about RSD--only about 25% of doctors have actually heard of it. It was suspected by both him and my physical therapist, and when PT didn't make the symptoms better, they did a bone scan. Bone scans don't always test positive when you do have it, but mine luckily confirmed it. As for pain, right now I take tramadol, as well as topomax, and anti seizure medication, and doxepin and anti-depressant. I refuse to take narcotics. Also I am huge on making sure I exercise a LOT. If you don't move a lot you can lose the ability to walk/move pretty fast, which I learned the hard way.

Refusing narcotics is a commendable thing in my opinion. It also saves you the monthly hassle at pharmacies of finding those drugs, which can turn frustrating quickly.

Were you prescribed the anti-seizure meds before the seizures started (for pain maybe?) or are they for the seizures themselves?

Narcotics also have been proven to actually make the disease worse in the long run. In the short term they make things feel better, but overall they worsen your pain. Just not worth it. Too many risks.

And I was prescribed the anti-seizure meds before.

http://www.nature.com/news/high-dose-opiates-could-crack-chronic-pain-1.9796

I know that at a low dose it can actually increase the pain in people with nerve diseases like myself (different with someone with an injury). But I am not sure about the one shot super high dose, as described here. I could ask my doctor about it. Though, that makes me nervous, too because there is always that potential for addiction.

What type of exercises do you do? Exercise can expose someone to a lot of injuries given your disease and how it reacts to injuries.

I do a LOT of walking (and pulling as I walk a sixty pound pit bull). I also do some biking, though I had a crash a few weeks ago and the flare of symptoms that resulted from that has made me less apt to jump back on the bike.

Well, what type of specialist would one normally see to get diagnosed, assuming most orthopedists are not particularly well educated about rare diseases?

I'm not usually sure WHO diagnoses it, honestly. I know the specialists you see once you are diagnosed are both neurologists and pain management specialists. Assuming you are not diagnosed, I imagine at some point you would head to a pain management doctor and eventually they would figure it out because those doctors are usually the ones who know of the disease.

How does all of this affect your college life, are you able to do activities that other college kids do? Is there any medication or anything to desensitize the nerves?

Well, I think as for being a student it has given me perspective. I take school a LOT more seriously than other people do. I have the advantage of not being stupid, but then I also have to teach myself a lot of things because I'll spend weeks of school at home. But I've managed a 4.0 all three years so far. As for doing what everyone else does, I don't really get to. Sometimes I get to go out, but I can't really drink. Half a shot over a period of a few hours and I'm drunk...no joke. And crowds make me really nervous because when people bump into me it is really painful. I'm also REALLY tired all the time. A lot of medications can desensitize them, I've been on a bunch. They tend to use anti seizure meds or anti depressants. But those sometimes don't work, or the side effects are horrible. One literally made me start seeing things and have a mental breakdown. I would also lose periods of time. It was horrible. They also tried putting a stimulator in my back, which worked for about a year, but eventually it also stopped being effective.

as a 21 yo/f in college this really breaks my heart to read. just want to say congrats on taking full advantage of the educational aspect of your college years. in regards to everything else, i'm so sorry!! you have both my respect and my sympathy. really drives home the idea that one's health should be valued above all else. hugs

If I could say one thing to you, and I hope this isn't too blunt, but one thing I have truly learned from this is that everything we do now makes our future. I know that a lot of students in college don't take it seriously.. What's a missed class? What's a C? As long as I passed. But it is your future. Take it seriously. Have fun of course and enjoy it, but also realize it sets you up for everything else.

Have you considered taking modafinil for your fatigue? It worked for me.

I've actually never heard of it.

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It's good to hear about this stuff. I should ask my doctors about it. I heard about topomax from people with my condition and asked them about it, and I absolutely love it.

Interstim? I may wind up getting that for my interstitial cystitis. I am sorry you are in so much pain. I can relate as far was the exhaustion and lack of social life and issues with alcohol. There are days where I can only wear loose clothing otherwise it is unbearable. I asked to be taken off narcotics as well after a year of percocets (they dulled the pain, but did no take it away) and now I am taking gabapentin (Neurontin). I am just so, so sorry to hear someone suffering as much as you :(

How is the gabapentin affecting you? I was on it about four months ago and had to be taken off of it. I would completely forget pieces of my day, started hallucinating, and had complete emotional breakdowns. Worst medication ever. It actually really helped with my pain, too, which was what made me so mad.

Holy guacamole. Those are some serious side effects. My dr. said it would help me with my sleep (is it supposed to you sleepy?) but it does not make me drowsy at all. After about week 2 I started to notice I had more pain-free days, but now I seem to be flaring up again. So far it has been the best medicine for pain, though.

I was also told to take Cymbalta, but after taking one of the lower dosage pill, an hour later I was throwing up, my heart was racing and my skin felt as if it were clammy and cold, but there was no sweat. I tried contacting the pain specialist who prescribed the gabapentin, but his assistant said I have to speak with my psychiatrist to get something other than Cymbalta prescribed. Thankfully I was given samples and didn't buy the prescription first.

I will say that I seem to have more explosive reactions such as suddenly filled with so much rage I have to punch something (not a person) in order to help it go away, but I am not sure if it is related...

It might be, because that DEFINITELY happened to me. And I'm a very peaceful person. I cry when they kill dogs on tv. Actually, I cry when they kill anything on tv. But I just wanted to hit everything, and hitting hurts.

As for Cymbalta, they tried it on me once and I had the same exact reaction. I felt like I was dying of heat, but I couldn't sweat. But my skin also was cold. It was the most miserable twelve hours of my life. I just refused to take it again.

Were you on Cymbalta and Gabapentin at the same time when you had the reaction with the cold skin, etc?

Nope, these were years apart.

I am scared to try something other than gabapentin and be in a ton of pain again. I have a pain rehab appointment for tomorrow (first time) at a hospital near by. We'll see what happens! I am sorry you are in pain :(

Have you tried topomax? I don't remember if we discussed this. But if you haven't I swear by it. I found out from it from other people with RSD. It has a lot of side effects when you start--makes you REALLY dopey. But once you are adjusted it works great. It also helps a lot with all the weight gain other meds cause because it restricts appetite. It's been the one thing I would actually not mind increasing because it's really helped my pain.

My sister has had this for a while now. It was hard for me when she got it because we had to quit skiing together. What's the hardest change for you since being diagnosed?

Also, what's the most positive experience you've gotten from being an RSD patient?

I'm sorry your sister is going through this. I would never want any of my siblings/family to go through this. I think the hardest part of this is adjusting from who I was to who I am now. By a lot of this I just mean daily life--there are a lot of things that have to change, what jobs you can do, what things you can touch, how many hours you can be awake, what you can do with your friends.

As for the most positive experience--I am planning on going to graduate school (hopefully starting next year, I am a senior in my undergraduate now) to get a masters in public policy and a PhD in government. I want to write laws pertaining to health care. If it wasn't for RSD I don't know if I would be nearly as driven as I am. I take every moment a lot more seriously. Growing up fast has been hard, but I also like that part as well.

This truly sounds like an awful disease. Whenever I heard myself (twist an ankle, cut myself, whatever) I always think "how awful would it be to have some sort of pain 24/7".. It's a frightening thought for me.. Anyways. No question.. just fight the good fight.

Thank you, I appreciate that.

How do you cope with the pain?

Well, most of the time now that I am used to it, it is just like how most people cope with regular life. It's usually at a 3 or 4, because it is well-managed. When it spikes however, that's hard because then it is at a 8-10. That's a lot of laying in bed, crying, sometimes screaming. I get frustrated pretty easily then. But for the most part I try to just accept it as "normal." I think that helps a lot.

Well I am heading to bed now, it is almost 3 am here. Thank you everyone who asked questions. I am glad some awareness was made for RSD! The disease does not have enough awareness, leaving too many people who need to be diagnosed going too long without a proper diagnosis.

Have you ever considered medical marijuana to ease your pain?

It's not legal here, but if it was I totally would. I once tried smoking it while on all my meds and that didn't go well.

Ahh well if you ever get your hands on some, I am very curious to see how well it would ease your pain.

I have, and it did, but it mixed with my meds weird, so I was in the shower freaking out saying, "I'm too high for this. I'm too high for this."

In my defense though, it was really potent, and I had too much.

There are definitely ways to do MMJ without getting high. I do it for my RA. I hate the MJ high.

I am not too fond of it either. I am sorry about your RA. But I like hearing that natural things help people. Some of the meds they put us on are ridiculous. This stone age idea about pot is really hurtful to those it could help.

One of the best things about the MJ I do is that it beautifully counteracts the side effects I get from the pharmaceuticals I have to take. Those side effects being insomnia and nausea, mainly. But it also helps with fatigue and "general malaise."

The way I do MJ without getting high is topically: I have this coconut oil that has had a bunch of cannabis trimmings simmered into it, and I rub that anywhere on my skin. No THC high. Just a great body high, munchies, and deep, restful sleep. And I get psychologically high, too, but it carries none of the anxiety or mental dulling I get from other routes of administration of pot.

EDIT: It may be less of a psychological high and more of a happiness indirectly caused by feeling better in my body.

I didn't even know that could work.

So it isn't something I want to try again, until it is an actually prescribed thing.

My friend has battled with CRPS since she was in the 8th grade, and I used to be a bit of a wizard in the kitchen when it came to edibles. First of all, you are one tough motherfucker.

Smoking is not super useful, IMO. If you ever get the chance to legally procure cannabis candies (esp. hard candies) then I would give it a go. You can suck on it as long as you need it, and then wrap it up and save it for later. My friend didn't have as much trouble with feeling stoney when she just nursed on a piece of candy throughout the day. Tiny doses of edibles are great because you can get longer-term pain relief without the epic dopamine flooding that comes along with narcotics. This is probably not news to you, but I wanted to mention it just in case. :)

Then, her doctor prescribed her some kind of little white round pills that she calls her "weed pills" - I think they were refined THC pills meant for pain and anxiety. They caused no "woooah dude" effect at all, and they were super effective for her pain.

I think it would be great if they could do something like that (the pills)--but then again I think it would also be stupid because then it gives the pharmaceutical companies control of something else.
I've never tried edibles. Honestly, the most I've done withe weed, is I used to smoke it a lot before I was injured. Since then I have only tried it twice. Both times didn't go so hot most likely because of the medications that mixed.
On another note--I hope your friend is doing all right. I don't know if she is on reddit but if she ever needs someone to talk to, send her my way. It is always good to have a support system of both people who don't have it, and those who do. Also, I think it is amazing that you've stuck by her side. I've lost so many friends who just didn't understand.

She's actually doing great - she has a sex life and can walk when she wants/needs to.

I'm 30 and she's 23. She doesn't really have any friends her own age because they're just too young to be willing to alter their plans for someone else's mobility issues. Ah, youth. Don't worry - people get kinder as they age. She isn't on reddit, but I might suggest it to her. She's kind of a technophobe, though!

I know exactly what you mean. It is definitely a lot harder for people who are younger to get.

For example--right now I want to kill my boyfriend. I was extremely excited to help him set up some stuff in his new house tonight. Then about ten minutes before we get ready to go he hits me with, "So would you be upset if I told you I wanted to go over there by myself?" (Of course I would be upset! I was excited to actually get out of MY house.) His reasoning is that he wants to stay there very late (3 am) and he knows I would need to come back earlier. It's small things like that where you can definitely see RSD playing a role.

Ahh I gotcha, it prolly was the other meds that you were on that made you freak out. Maybe an edible only could suffice.

I bet it was. I never thought of that.

Consider vaping it, much cleaner and more controllable method of administering it.

My friend with Fibromyalgia swears by it.

I think my friends do that. I'll have to ask them.

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My boyfriend is sitting next to me right now actually. And it definitely is effected. For one, sex can be really hard when just being touched makes you want to scream. Second, when I am having bad days I try not to but I can get cranky. I don't even realize I am cranky. It's also hard because I expect him to understand all the time, but he can't necessarily do that. He's not me.
As for medical marijuana, I think it would be great. I think it would help so many people as it is a lot less harmful than so many of the meds they've put me on. Definitely an advocate. It could help so many people.

boyfriend here. Sex is quite fun…… That is all.

Ha, thanks Shawn.

Does he sound anything like this?
http://youtu.be/bIaUfBjHjpI

If so: why are you adding to your pain?

Subconsciously, I'm probably a little self-loathing.

Does this mean you haven't yet tried weed as a form of relief from the pain? Hopefully you haven't, then you try it and it brings you great comfort. That would be nice.

I have, and it does help the pain, at least at first. But then it mixed with my meds weird, I got all anxious. And anxiety increases pain. Vicious cycle.

What about LSD?

I've never thought of LSD. They actually treat RSD with Ketamine, a tranquilizer that causes powerful hallucinations. They put you on a high dose drip for hours to days. Some people, not in the US, who are desperate, undergo a dangerous procedure where they are put into a ketamine coma for about a week in the hopes of waking up RSD free. So far this has been the only known cure.

"and often are told that they are "crazy" or depressed, and that the pain is not real."

I've been through this with a few doctors, (not the same condition though) and it was hell. That man should not be a doctor the way he treated me, total lack of respect in his mannerisms.

Too many people go through that.

As a kid I had a lot of stomach problems. They were horrible. For periods of time I every night I would wake up and get very sick. Then for a month or two I'd be fine, then the same thing for about another month or two. I was often called a hypochondriac by my parents/grandparents.

Now that I have been diagnosed with the mito disease, we know that I actually have digestion problems due to it. My sister also experiences the same thing (and was also told the same things I was prior to actually seeing a doctor).

People are really quite rude when it is something they don't understand. I hope whatever is going on with you has been worked out and that you have GOOD doctors now.

Do you know how common this is? Like what's the average person's chance of developing it?

They say it can happen in 5% of all injuries. Keep in mind though that includes just hitting your hand on the wall as you pass it so there are a LOT of injuries.

That sounds really high: if a given person gets injured 25 times, (s)he should now have a 75% chance of getting this disease, right (1-.95²⁵ )? But almost everyone has been injured 25 times, and the occurrence rate is nowhere near that. So I'm confused, sorry!

I think it might be five percent off all injuries of all people, not necessarily of each person. All I know is it says it happens in 5% of all injuries. I read that statistic I believe at the RSDSA website. When I get a chance I'll try to find it for you.

Thanks for the response!

I actually managed to find that stat on the website after posting this as well, but lost of track of it. It didn't give further explanation (edit: whoops!). However, a paper I downloaded estimated the incidence rate to be "26.2 per 100,000 person years." Not sure what person years are though, not my field.

This AMA actually made be fascinated (read: terrified) by this disease and I therefore downloaded a couple scholarly articles on it. I'm gonna check them out and hopefully get a better understanding.

One confusion I had is why I haven't heard of it before if it's the most painful thing in the world and isn't that crazy rare (though 26/100000 is pretty rare I guess). I'm also really fascinated by how it's measured as the "most" painful (the McGill scale), and why this level of pain doesn't drive people to more frequently seek desperate treatments (eg., LSD or ketamine).

Also (maybe you can answer this), is it still more painful than childbirth/finger-amputation when you're on your typical daily medication? Or does that dull it to a "manageable" level?

So many questions!

Actually, I've done two ketamine infusions all ready and a lot of people do them quite regularly.

Many people also get so desperate to the point that they will do the only known cure (which isn't even 100%), and leave the country to be induced into a ketamine coma. It isn't legal in the US because it is obviously dangerous, but last I heard many people will go to Germany.

As for your last question I can make a definitive answer saying that, with proper treatment, no. I mean, sure there are days where even with all of my treatment I am lying in bed screaming, wanting to die, but 98% of the time? It's pretty managed now. As for with proper treatment? I can never even completely say 100% that's true anyway...each pain is each person's. Now has there been times where I would choose un-sedated amputation over what I'm going through? I begged my Mom one time when I was first diagnosed to please let the doctors cut it off (they wouldn't of even if I would have asked, but I was young.) But pain is very...it's interpreted based on who is having it.

I'm really happy to hear that the medication makes it managable for you 98% of the time! Best of luck to you.

Thank you!

If you don't mind my asking, are you in the medical profession? You seem to have a big interest.

Okay! I got it wrong. Please forgive me. It is five percent of all injuries that involve any sort of nerve (that can be as simple as getting stepped on or as severe being crushed by a car).

I got that from the RSDSA website under fact and fiction.

Some people literally get it from bumping their elbow.

Cool, thanks for checking that out! Though I'd imagine most injuries involve nerves, so I still might be confused...

That's what I figured, too. But that's what it says.

Is it hurting to type back on all these comments? If so, i will shut up.

Haha, no, not excessively. For one, I got six hours of sleep between when I started this and now. And typing is a lot easier than writing. Everything hurts, but I generally have a normal level of pain. I'm so used to it that it is almost like not having any pain at all. I honestly don't even remember what it is like to not be in pain anymore.

Wow, i've just been reading lots of these comments and I am really, really impressed at how positive you are about this. You're an awesome person!

1. Are there any places that hurt more than other places?

2. What are some normal activities that are really difficult for you due to the pain? ex. Brushing your teeth, putting on socks, etc.

3. Did you go through a stage of depression because of this, or were you always quite positive about it all?

My feet hurt way more than everything else. My hands tend to also hurt more. And I get these horrible rolling spasms in my torso which can put me on the ground. Thank god for muscle relaxers.

Putting on socks is really hard. Part of the disease is called allydonia, where you have extreme sensitivity to light touch. The wind can cause me more pain than a hard touch. I have a hard time going to loud movies, and sometimes showering can be really difficult. Also, if I write for too long, my hand will stiffen and I can't really move it. I also shake a lot and my hands move a lot slower than they should so anything requiring a lot of dexterity is harder (cooking can be difficult). The worse thing in the whole world is when I go into the hospital and I never put those damn footie socks on and I always keep my feet out of the blanket. The nurse comes in and covers them up and I'm like, "Don't do that!!"

Oh, I've been through a few stages of depression. The first was when I was first diagnosed. I was really angry. They call it the seven stages of grieving (you may have heard this in reference to someone dying). You go through that when you get really sick like this because essentially you do die, at least the old you does. Then, about two years into it, I was hospitalized with my heart being dangerously high and was diagnosed with a new disease, Postural Orthostatic Tachycardia. I had to drop out of school for a semester, and from the hospital stay my RSD went into overdrive (10/10's every day). I was so depressed I barely got out of bed. I lost my ability to walk on my own. But then I made the decision to do something. I raised about $800 dollars for the foundation for my disease, and went back to physical therapy to learn to walk again on my own. I decided I had this for a reason, I was given the ability to be treated by doctors so well for a reason. I could help other people.

Wow, stay strong!

Thank you!

Best place for chicken and waffles?

If you are drunk, waffle house. Never tried it anywhere else.

I too feel extreme pain because of a Soulja Boy song.

Ironically, I stopped dancing right when that song hit. Thought, "This is stupid." Because I stopped dancing is why I got stepped on, the person behind me, ran into me.

Ran into you?

Maybe he was tryna Superman dat hoe?

Or are you a boy, I didn't read the intro :P.

I am a girl. He stepped on my ankle. I think he was probably doing the dance.

Maybe he really liked the song and you deeply offended him by walking out?

I'm just throwing in any trace amounts of humour that I can, 'cause y'know laughter heals all pain... or is that time?

I dunno, time seems to have betrayed the saying completely.

I think they say "time heals all wounds" but I think that's bs. Laughter is so much more true. If you can't laugh about things than you've got some issues.

So like does your foot really, really hurt all the time?

I'm closing my eyes and I'm going to describe to you how it feels on my right foot right now: It feels like a burning sensation, sort of as if you have sunburn, but a deeper feeling, almost as if it is below the skin. But, then it also feels as if there is this rubber glove dancing right above my skin that is just a heat....very, very hot, but at the same time feels ice cold. It is a REALLY weird sensation. If you were to physically touch my foot you would think I had stuck it in a bucket of ice water. Towards the inner part of my foot, that part that is usually very ticklish on most people, there is this sensation that it is being tugged to sort of curl. It isn't painful, it is just there. As if there is a string slightly pulling at it. That's what my foot feels like at this moment. It's a good day today.

That sounds uncomfortable.

I imagine you do not enjoy foot massages.

Not particularly. I try really hard to live as normal of a life as possible, so once every year or two I try to force myself to get a pedicure. It is good for making sure my feel don't become too awful (RSD messes with your toe-nails and the skin on your feet). The whole time I'm practically screaming in my chair, my feet turn bright blue and swell a bit, but afterwards my feet look so much better. Also it is really good for desensitization.

Honestly, it is sometimes kind of cool. When it isn't super horrible like this, it is. It is weird how your body can completely rewire itself to feel a different way. I long to remember what it is like to feel things normally again, but the different sensations are kind of interesting when you take them piece by piece. Overwhelming all at once, but in boxes, kind of interesting.

Do you know how the pain is supposed to compare to Irkandji Syndrome? This is often described as the most painful thing of all. Not that I am trying to minimize the agony you have experienced. It blows my mind that people like you are still alive at all. http://en.wikipedia.org/wiki/Irukandji_syndrome

Well this sounds fucking miserable. As someone who hates vomiting, even for thirty hours or so I think I would want to kill myself.
Let me make myself clear---RSD is the most painful disease known to medicine (however, you will always find other diseases that say this too I bet, but from what my doctors/research has told me I'm saying this). But that doesn't mean that there are not things in the short term that are more awful---I am sure that this for however long it lasts is fucking hell. Even with all of my training, I wouldn't want to go through it. Hell, I don't even think someone with a death wish and a BDSM fetish wants to do this. RSD is one of the most painful, if not the most painful long-term disease.

Well if it cheers you up slightly some people have actually contracted Irkandji Syndrome deliberately to prove the mechanism responsible (jellyfish) as it was unproven for many years. Now that's dedication.

Best of luck with avoiding this sort of thing for the future!

That is dedication. I can see die hard scientists doing that.

What was the most difficult part about your disease?

I think the most difficult part is reconciling who I was to who I am now. Before I got hurt I was a pretty popular seventeen year old who partied. I still kept my grades up, but I was a lot of fun. When your that age you lose a lot of friends because they don't understand that you can't drink anymore--or you feel like crap. Or that you can't go out in the snow and do things you used to be able to do. Now that I'm in college I see that a lot, I had to mature quickly. While everyone wants to go party all the time, I don't get to do that.

I can sympathize. Earlier this year I caught an intestinal virus which triggered Reactive Arthritis. Thankfully it causes no permanent damage, but it is crippling in terms of mobility not to mention that the early days are extraordinarily painful.

Hang tough, my friend.

I am so sorry you went through that, not to mention having the intestinal virus. I hate stomach illnesses. I swear, go ahead cut into my back, put weird drugs in me, cut off pieces of skin, electrocute me, but make me throw up? Nope. I'm out of there. Do you usually have abnormal immune reactions to illnesses? I always have, and didn't realize it was something more until recently.

Never had anything before. Haha, we're in the same boat there. The good news was that since it was past the stomach I never had to vomit. . .the bad news, on the other hand. . . :P

How are you feeling today?

Today is a pretty good day. Not in more pain than usual, which is always good. How about yourself?

Yay! I'm happy to hear that :)

My neck is being all stiff but it'll pass after I've had some coffee.

Where is the arthritis affecting you?

Both feet, shoulders+neck, and my non-dominant hand. It's gotten much better since it started, but there were days I couldn't tie my shoes let alone get out of bed.

That's miserable. All of these types of things are miserable. I'm really pleased to hear it has improved. Hopefully it keeps improving!

It had its moments but also was quite humbling. I wish the best for you too :)

Thank you! And I quite agree with what you say about the humbling moments.

what happens when you hear that extremely shitty song Soulja Boy post accident?

I often yell, "Turn this shit off."

correct answer sir. That fucking noise slop shit should be a criminal offense to play in public.

Agreed.

If you were to ever meet the person who stepped on your foot, what would you say to him or her?

First, let me say, that I don't know who it is. I was stepped on, and then started crying, and didn't think to look at who stepped on me. For awhile I always said I would yell at them, stomp on their foot, being really pissed, sue them, etc. But then someone seriously asked me this question and I thought, I wouldn't really say anything. They didn't know this would happen. It's not their fault.

if your foot hadn't been stepped on, how likely would it be that you simply would have gotten the disease from some other minor accident? It's impossible to go through life avoiding minor injuries entirely.

Because of my underlying mitochondrial disease, I personally believe I would have been very likely to have acquired the disease from somewhere else. Now some other person who have no other underlying disease, it may never happen.

Couple years ago I had a migraine for a month and a half straight and I would feel extreme pain in my head especially when I stand up after sitting down for a bit. It felt like some one was stabbing through my skull with a needle. Doctors didn't know what it was, but over time it just went away. I didn't know how I got through that while going to college at the time. I was frustrated and hopeless. I surely just can't imagine how hard it must be for you with this nightmare of a condition. You got my respects and good luck with your studies. Maybe some how your condition will just disappear one day.

Spontaneous remission actually can occur. It happens rarely, but it does happen. So there is always hope! Thank you!!

Hi, fellow RSD sufferer here! I'm also a college student as well and I just wanted to ask...have you dealt with ignorance and weird comments from people because they don't understand chronic pain? I've been dealing with RSD (and other chronic illnesses) since I was a child but it seems like the ignorant comments (like "you must be faking, you only use a wheelchair SOMETIMES") has increased in the years since I've been in college. Also, how to do you manage college life and dealing with your health problems? Hope you're doing well. :)

First, I want to say that it is awesome you are going to college. Too many people in our condition don't go to school, when in reality they can! We just need a little extra help here and there.
I have been really fortunate that most of the time when it comes to professors they believe me. I have no problem with attendance issues (no one says anything when I don't show up), or when I need to make anything up. However, I once had a teacher tell me when I told her about my disease that I should drop her class. She didn't really believe me, and she didn't believe I could handle it. She thought I was using it as an excuse. So, I did what I always do. I gave the class 100% and then during one of my worst days I had someone help me get to class, and she saw how bad it really was. She never gave me a problem afterwards and later became one of my biggest supporters.
However, fellow students are a different ball game. That's been hard. I'm in a sorority and at first everyone was REALLY supportive. But eventually it gets to the point where people don't want to really be bothered so much by your health problems. They don't want to come help you get food when you are stuck in bed all day. They don't want to come help you do your laundry. And god forbid, you ask them to come watch a movie with you instead of go out drinking on a Friday night. That's definitely hard. Sometimes I wonder if I really can make it through college, especially when I'm on a new med that's making me so brain fogged I barely know who I am. But I know that is where I really want to be. I want my master's and PhD, so I think it is worth it. Disability services is a god-send.

So true. Lots of chronic pain sufferers don't realize how much support university/colleges offer for people with health problems.

it sucks that it took your prof seeing you on a bad flare day for her to understand how an invisible chronic pain disease works but I'm glad she's one of your biggest supporters now!

You certainly will be able to do it. and with the medication thing, (you might have already thought of this but incase you haven't), try to plan medication changes around your school schedule. For example, I changed around my topamax dosage recently (which made me really foggy) and purposely waited to do it until my exams were over so I wouldn't have to study with all those side effects.

I don't know if this happened to you, but when I was first put on topomax I felt drunk 24/7. I remember looking at someone's shirt and thinking it was in Arabic, then realizing it was in English. Funny thing is, I took a test right when I started it (with my absolute FAVORITE professor) and I wrote the most hilarious essay. He thought it was brilliant. I made up this big analogy about a man named Bob. It was great.

omg yes! I was SO weird on topamax for the first little while. Even now, anytime my neurologist changes my dosage, it's like I'm drunk for a few weeks. For some reason I'm really sensitive to that stuff..it's weird but amusing to my friends. In my sophomore year of college, my neuro changed my dose again and according to my roommate I went on a 20 minute rant about deodorant residue.

I'm glad I'm not the only one!!

This might be an odd question, but how does alcohol affect your pain?

Two ways--on my medications, if I have a small amount of alcohol, I feel like crap and it makes it worse. If I am not on my meds (or not on enough to make me feel bad when I drink), and I drink enough alcohol to get me drunk, it is one of the only times I am ever pain free. I always get amazed in that moment because I can touch myself and it doesn't hurt. Then I usually slap my face a few times like an asshole and go "Guys! This doesn't hurt!" It's been a few years though since I've been on so few meds that it has been possible for that to happen.

I have RSD in my foot and am also a 21 year old girl whose symptoms started when I was 17. Are we the same person? I have a few questions for you and you can PM if you want to chat more!

Do you have pain spikes that correlate with stress? If so how do you handle going to class and making it through exams every semester?

How do you deal with everyone who has no clue what having RSD actually means even though you've explained it countless times?

What's the short little schpeal you use to explains why you're on crutches/in wheelchair/can't do what everyone else is?

Wow, we just might be!

Pain spikes definitely correlate with stress. It's a vicious cycle. Stress out about class. Flare. Stress out about flare and how it affects class. I think the best way I deal with that is being really prepared. I work well with my professors and I am really well known within the departments for my majors. I have never had a problem getting help. I know that can be hard, not knowing how people will react, but I've had mostly positive interactions.

As for how I describe RSD is I use a nifty metaphor/analogy/enter correct word here that my doctor used to describe it to me. My nerves essentially think I am really hurt, and are like a CD that is skipping in a cd-player, running the same signals over and over again. People usually get that.

However, when I need to use my cane and I am in a bar, I tell drunk people I was shot in New York. When they don't believe me I show them the scar from my SCS surgery. Their faces are hilarious.

Wow, we just might be!

Pain spikes definitely correlate with stress. It's a vicious cycle. Stress out about class. Flare. Stress out about flare and how it affects class. I think the best way I deal with that is being really prepared. I work well with my professors and I am really well known within the departments for my majors. I have never had a problem getting help. I know that can be hard, not knowing how people will react, but I've had mostly positive interactions.

As for how I describe RSD is I use a nifty metaphor/analogy/enter correct word here that my doctor used to describe it to me. My nerves essentially think I am really hurt, and are like a CD that is skipping in a cd-player, running the same signals over and over again. People usually get that.

However, when I need to use my cane and I am in a bar, I tell drunk people I was shot in New York. When they don't believe me I show them the scar from my SCS surgery. Their faces are hilarious.

Edit: missed one- I just explain it again. I know it is hard to understand. Eventually they'll get it. It can be frustrating though.

Has this affected you in your relationships? You mentioned it hurting when people touch you or bump into you?

Has this been an issue with any Significant Others you may have had in the last few years?

Also, feel free to not answer this question if it is too personal.

It definitely effects relationships. About two years ago I was in a very committed relationship but became so symptomatic I couldn't even hold his hand. Imagine not even being able to hold someone's hand. It really tore our relationship to pieces. One month we were discussing our future, the next is a constant battle for intimacy. I would cry if he tried to have sex with me because the touch hurt so bad. Eventually you can't maintain a relationship like that, especially being as young as we were. It's also hard even when things are good. I need a lot of help. And I tend to rely a lot on people--when it isn't a SO it's my family or my best friend. And sometimes that seems really hard for them. I need someone mature who is IN my life or not in my life, not constantly going in between. It's really hard to be able to count on someone one day, and not the other. And then just to be a little TMI, imagine your having great sex, but half way through you just get way too exhausted or your skin gets way too irritated. Or you pass out (actually faint.) My bf has way too many experiences of only getting half way through sex. It makes me feel horrible. And that's not even adding the possibility of future kids into the mix...

Wow. I'm so sorry to hear that. I can't even imagine, honestly. It must be extremely difficult. It definitely makes me appreciate my relationships more. I can't imagine not being able to touch your SO or have them touch you because it simply hurts too bad.

Still, please don't be too hard on yourself. You can't help the way you were born or the fact that these things hurt you so you shouldn't feel horrible, it's beyond your control. You seem like an amazing person and you deserve someone equally as amazing. I will be sending you good vibes in the hopes that you find the right person who will be there for you!

Good luck and I hope you get better!!!

I really appreciate that. I hope you have a great day!

Do you blame the person that stepped on you at all? I would feel insanely guilty if my bad dance moves indirectly caused the worst pain possible.

No, not at all. How many times have you accidentally ran into someone? Now with my luck you are the most graceful redditor in this whole world and this doesn't apply. But I've accidentally stepped on a lot of people. Now, do I realize now more than ever that people need to be more conscious of their body space and are actually pretty rude in crowds (less because I got stepped on and more because whenever someone runs into me now it really fucking hurts)? Absolutely. But is it their fault so much when accidents happen? Not really.

That however, doesn't apply to situations on Black Friday where you trample Grandma for a TV.

Acupuncture may help also I have had similar pain in both feet. I have a pump in my stomach that pumps a drug called prialt directly into my spinal fluid. I am bedridden wit out it. Those 2 have been the only thing that helped in 27 years. Chronic pain anonymous is a great online network with several phone meetings per week. Good luck

I keep meaning to do acupuncture but every time I find someone, something comes up and I never do it! As for your pump, does it have many side effects? I am really glad you have found something that has worked so well for you. And I am sorry you've had to deal with this for so long.

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I am sorry that you have pain like that.
And I in no way am saying your pain is any less than someone else's. Honestly, if someone breaks their finger and they say it is the worse pain in their life, then who am I to say my pain is worse than theirs? But I do have to say that it seems really rude to come on my AMA and say this. So I am going to say, is your pain constant? It says here "bouts of pain two to twenty times a week". Well, I am in pain 24/7. I even dream in pain. I have nightmares of myself burning, because that "explains" the pain. I have been under the knife multiple times, have had things inserted into my spinal cord, taken out of my spinal cord. I've been hospitalized and drugged out of my mind through ketamine infusion treatments. I have had well over twenty nerve blocks. So please do not come on here and belittle me when I would NEVER go onto your AMA and belittle you. It's very rude. And second, I'm not just making this shit up about RSD (Also known as Complex Regional Pain Syndrome) being rated as the most painful. Imgur

Now, I hope everyone learns about Cluster Headache Syndrome, it needs awareness, too. I hope you were more polite to those people.

edit: added the fact that RSD is also known as CRPS, so the picture is clear.

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I would be willing to say the same thing to you. I've heard people describe RSD as being on fire--actually I would describe it as being on fire. Have you ever burned yourself? It is a pain like you are constantly being burned, and that's just when there is the pain. That's not when you have the rolling muscle contractions that leave you unable to stand and throwing up. My foot is currently unable to straighten itself because the muscles are physically shortening themselves from twisting. RSD is described as being more painful than childbirth without pain meds, more painful than amputation, and more painful than cancer. I would argue you have your facts wrong. As I said, however, everyones pain is their own, so that doesn't mean it isn't significant to them. But when people willingly cut off their limbs to try to escape this disease, and put themselves into comas in an attempt for a cure, you are making a very big assumption by saying that all of the research put into the disease is wrong.

What mitochondrial disease have you? Do you think it causes all the other stuff?

Honestly, I don't know what type it is. My neurologist did extensive testing on me to find it: I had biopsies, autonomic testing, a weird ultrasound thing, extensive neurological testing, literally 30 pages of patient history taken down. Then they treated me with certain enzymes to see if I would respond, which would confirm that I had it even further because I had all of the markers after all of that testing. I asked him what it specifically was called and he always said, "It's just a mitochondrial disease." He explained to me how it works, and what it does, but never what type of mitochondrial disease. I think I have to go to a geneticist for that. But, ultimately yes. It is the root cause for everything. Because my cells don't work properly my brain can't control everything as it should. My nerves are destroying themselves which causes autonomic (what controls your heart, your digestion, your breathing) dysfunction.

I'll be that guy. Sex. Is it to painful? Can you do it?

19/20 not usually. Certain positions can be too painful just because of the way they move my body. Endorphins are also great for pain. However, if I'm flaring already the one on one contact can be way too much. But I probably won't try then anyway.

So you can now truthfully reply to the age old question of "On a scale of 1 to 10, how bad does it hurt?" with a definite ten. I've never gotten above 2.

I always feel like an asshole when I give a ten. My mom is a nurse and she told me that they use the "10" to weed out people who want drugs. But I don't want drugs, it is really a ten!

It's funny, as a kid I would think a pain was a six or something but in retrospect it was a one. Now whenever they ask me about pain, non-rsd related I always ask, "My pain scale or a normal person pain scale? On my pain scale this is a one. On someone else's it would probably be a bit higher."

Have you looked into aSpinal Cord Stimulation implant? It's fairly unknown but I have met people who it has done wonders for.

I had one put in 11/26/09. At first it was great, but eventually your nerves get used to them. Usually you reprogram it and then it is fine. However, eventually it started causing me more pain with it on than off because of the way the signals mixed. It had to be turned off and was taken out July of last year. I was really young when they put it in, the youngest patient my doc had ever done. I think that had some effect as to why it didn't work. I'm glad I did it though because it did help at first, and helped me gain a lot of strength back.

Working with SCS implants every day it's interesting to hear some real world feedback from people who have used them.

What do you do with them?

I work a company that designs them.

That is really amazing. Mine was a Boston Scientific brand. The company was really great to work with, but I've also heard really good things about other companies. I think it is really wonderful that these companies are helping people walk. I talk to many people who have my disease who have gone from being completely wheel chair bound, get a SCS and then get nearly all of their mobility back, if not all. So kudos to you.

Dude fuck that... Sorry u experience extreme pain.. Are u in pain constantly?

Yes. It doesn't go away. However, it's not always a 10/10. Sometimes it's a 2 or a 6. Even different parts of my body rate different at the same time.

I had scar tissue all around my sciatic nerve a couple years back and that was probably the most painful thing I've had to endure. I can kind of imagine the pain you must be feeling but at the same time can't imagine how it must feel!

Do you know if it is medically possible to numb some of the nerves such that they don't send signals to pain receptors but allow you to still use your limbs? I hope the meds help with the pain management!

I imagine that probably feels pretty close! I hope that they were able to fix it.

First, to answer your question about nerves. You have many kinds of nerves. Some nerves control movement, some control blood pressure, while others control pain, swelling, etc. The nerves that are effected for me would be the ones that control feeling. They can do what you suggested temporarily with nerve blocks. This is where they take a needle and anesthetize the bundle of nerves in your spine that control all the nerves below it. They hope is when they turn back on the pain will be considerably less. However, this can only be done so many times, because once you do it too much it starts irritating the nerve and will cause more pain.
I've been looking into a procedure where they actually cut the nerve. It's a risky procedure as it can cause a lot of nasty effects but it does seem to have a high success rate in taking away pain.

It was a hellish 2 months with crazy spasms and such but I don't if it was the physio or I got lucky but it subsided slowly over the year.

Hmm, my doctor told me about nerve blocks and that they can be used only 2-3 times a year before it starts aggravating the nerve as you said. Wow, cutting the nerve sounds pretty extreme. Are you seeing a neurologist or is there a specialist for your condition? Also, I looked up the condition on Wiki and it said that the affected areas usually swell up, so has your whole torso and legs swelled up?

I see both a neurologist and a pain management doctor.

And when I was first diagnosed I had horrible swelling. I'm sorry if this is really small, it's an old photo I took before I was even diagnosed, but right when the symptoms started. I keep it to remind myself how far I've come.Imgur

Now because I'm on medications, have done physical therapy, and have had procedures done to help it the swelling is considerably less. My hands and feet tend to swell the most, but even then it is considerably less than it was. My biggest problem tends to be the change in color. I turn blue a lot.

Oh I see. So, do the symptoms just flare up every now and then or is it constant pain with only the swelling coming and going. Also, do you know if any of the medication you take is similar to what people suffering from MS, ALS, etc take?

Sorry for the really specific question but I have been really interested in these things ever since I had my sciatica show up.

The pain is constant, but it isn't always horrible. For example, some days it is a 4/10, but the next it could be an 8/10. It just depends. My hands are almost always a little swollen, but when the pain gets really bad they tend to blow up, same with my feet. I never really notice much swelling on my legs/arms, but I think that's just because it's harder to pick up.

I'm currently on a muscle relaxer that is for people who have MS. A lot of the meds I've been on are usually anti seizure medications.

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In a perfect world.

Then again, in a perfect world there would be no need. And no Soulja Boy.

You have the antithesis to this disease, http://en.wikipedia.org/wiki/Congenital_insensitivity_to_pain

Also, i wonder if the movie Unbreakable could be true...

That's actually one of the ways I describe it to people who just can't seem to comprehend it. "You know people who can't feel any pain? Well all I feel IS pain.

Thats literally one of the most terrible things I've ever heard. You are probably the toughest person most people have met and they will never even know.

I think I've just dealt with what I got handled. Albeit, better than some people may deal with what they get dealt, but not much better (or any better) than any decent person.