Comments: 177 • Responses: 79 • Date: 2013-01-28 19:31:55 UTCsource
SumthingStupid34 karma2013-01-28 19:41:35 UTC
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der_juden19 karma2013-01-28 19:56:27 UTC
Quite literally ;)
Jennisattva17 karma2013-01-28 20:36:14 UTC
Thank you for doing this, you're doing everyone else who suffers from this disorder an amazing service.
If you had to choose 5 things that everyone should know about this disorder, what would they be?
Also, if someone suspects they may have CRPS, what should they know about dealing with their providers?
der_juden10 karma2013-01-28 20:49:40 UTC
Thank you! I'm hoping this will get the visibility it needs and it could really help someone out there who doesn't know where to turn. I know I was that person for a long time.
1) It can happen to anyone at any time- there is no rhyme or reason how it happens. You could bang your knee or have a major surgery. Essentially it is the nerves responding to pain, but it continues on LONG after the initial injury is gone.
2) Don't automatically assume someone is fine. This is a lesson I have learned first hand. Just because someone looks like they are doing good, doesn't necessarily mean that is the case. With me being young, some people look at me weird, they have no idea what I go through on a daily basis, just like I don't know what they go through. Understanding and support is such a huge help.
3) EDUCATION!! Educate yourself, go online, reach out to people who also have your diagnosis. Learning about what you have helps you not feel so alone. Learn about it even if you don't have it! There are MAJOR steps to helping avoid getting CRPS, like taking vitamin C before surgeries! Or even after an injury, it can greatly help.
4) If you know someone who has it, please be cognisant of where it effects them. Many people come up to me and slap me on the back of the shoulder or want to shake my hand. I keep quiet, but holy crap it hurts like a mother.
5) Talk about it. CRPS can really effect you beyond the pain. The main reason people die from CRPS is due to suicide.
Make sure, no matter if you are super duper healthy or you suspect something might be up, to check your coverage! I had no idea that Aetna denied Ketamine completely- though when I acquired Aetna, I wasn't planning on getting Ketamine either. It's so much better to be safe than sorry!
optimatus12 karma2013-01-28 19:54:11 UTC
This girl is on fire!
der_juden7 karma2013-01-28 20:08:13 UTC
I love it!! Thank you for sharing!! I'm adding that to my playlist :) A good song to listen to on my bad days :)
IrisKrell8 karma2013-01-28 20:05:02 UTC
Hi, I just wanted to say that I do sympathise with your situation, as my mother also suffers from CRPS due to a botched operation on her hand for a trapeziectomy.
She's had the spinal cord stim but unfortunately the wires came loose (and they didn't do much for her pain while they were in place), so now she's waiting for a second op to reattach the wires.
She takes ketamine every day (in fact I have to draw it into the syringe for her as she can't use her hands), and it has helped a great deal except she needs to pee ALL.THE.TIME.
I don't really have anything to ask, but just want to wish you all the luck for the future and your recovery :)
der_juden6 karma2013-01-28 20:13:47 UTC
Oh wow, sorry to hear about your mom. Something I just recently learned- the spinal cord stim actually is NOT good for CRPS. CRPS is the over stimulation of the nerves, and what does a SCS do? It overstimulates the nerves. Having that second operation could cause her CRPS to spread :( Not sure if she was aware of that.
Glad to hear she is taking Ketamine! I can't wait to start taking it, I hear nothing but great things about it in terms of helping with the pain!
Thank you for your support :) I hope your mom starts feeling better (though I know it never goes away), at least have some pain free days if possible! :)
Aveator5 karma2013-01-28 20:53:10 UTC
Does painkillers help?
Have you tried other drugs? (Marjuana, morphine)
I had an infection in my belly, but man, this sounds horrible.. Rooting for you!
der_juden6 karma2013-01-28 21:01:31 UTC
Painkillers actually are the only thing, other than something else you mentioned, that works. It helps with mobility and takes the edge off. My current doc refuses to prescribe them to me, saying I'll get addicted and die. I think he is insane, I have never been addicted to anything, but I'm not the doctor here. My new doc hopefully will be able to give me a better treatment plan.
Infections suck!! Are you feeling better?
Thank you for rooting for me :D I need it!!
Gravy-Leg__5 karma2013-01-28 21:11:21 UTC
Good move on finding a new doctor.
der_juden2 karma2013-01-28 21:12:28 UTC
Aveator2 karma2013-01-28 21:29:35 UTC
Aw.. Well, he isnt feeling your pain..
Well it was a while back, had a bad time in my life, just stayed up, drinking coke, got a wound because of the acid in the coke that got infected, now im just fine thank you:)
der_juden2 karma2013-01-28 21:33:34 UTC
You're exactly right. That's one thing I have to keep from saying all the time is "If they had this for just one day, one hour, they would be singing a different tune". It's not fair for me to say that, hell I would never actually wish this on anyone.
I'm glad you're feeling better and that you didn't get anything permanent from that. :)
riptaway0 karma2013-01-29 04:33:06 UTC
That's bullshit. Being addicted to painkillers sucks, but it takes a week or so to get over and it's not all that terrible. Your pain sounds 1000x worse than getting addicted to painkillers. Find a better doctor
der_juden1 karma2013-01-29 15:52:16 UTC
I totally 100% agree with you. Thankfully my new doctor doesn't have an issue with it.
Nambrik5 karma2013-01-28 20:38:19 UTC
Is the Pyro your favorite class in Team Fortress 2?
der_juden6 karma2013-01-28 20:58:36 UTC
I'll be honest- I had no idea what you were referring to. But my husband sent me this video and I laughed all the way through it. So its safe to say... yes! http://www.youtube.com/watch?v=WUhOnX8qt3I
Cardioman4 karma2013-01-28 21:30:46 UTC
That sucks, in europe you could get ketamine for free in public health
der_juden8 karma2013-01-28 21:36:42 UTC
Yes, America's "healthcare" system (if you want to call it that) is a nightmare. We can literally go bankrupt from just being sick. We are doing all we can to save/raise money so I can afford to get the treatments I need, it's so stinkin expensive.
Cardioman4 karma2013-01-28 21:41:16 UTC
Best of luck on that
der_juden4 karma2013-01-28 21:47:37 UTC
I appreciate it :)
Salacious-3 karma2013-01-28 19:40:54 UTC
der_juden7 karma2013-01-28 19:56:16 UTC
Working on that now for you :) It'll be up in just a few minutes.
der_juden10 karma2013-01-28 20:33:58 UTC
Proof is now added :) Thanks!
limbodog3 karma2013-01-28 19:38:56 UTC
I can't even begin to fathom what that must be like. I really hope your insurance is good. How do you get through your day? Or breakfast for that matter?
der_juden2 karma2013-01-28 20:21:06 UTC
My previous insurance, Aetna, will not cover Ketamine at all. Thankfully my husband just got hired permanently at his job and his insurance MIGHT cover it. Better than a no! Once I have my consult, they will give me the billing codes and thats when I'll know more.
Getting through the day can be a challenge for sure! I've learned to love my left side, especially my hand. It's getting stronger, but still a lot of work to do. My handwriting sucks on that side so I have to fight to use my right hand to do the writing.
Just have to learn how to deal with the pain, it's not easy- but you have to do what you have to do!
limbodog2 karma2013-01-28 20:23:00 UTC
I wish you the very best of luck. You have no trouble getting coverage where you live?
der_juden2 karma2013-01-28 20:28:03 UTC
Thank you, I greatly appreciate that. I do have health insurance, but as we all know- insurance only covers so much, if anything at all. Hoping I can save/raise enough funds to help me offset the costs.
iareziga1 karma2013-01-28 21:59:41 UTC
If this makes it to the front page, there's no chance in hell some rich guy won't donate for a good cause :D in that regard, have an upvote in order to make it to the front page.
der_juden1 karma2013-01-28 22:07:55 UTC
That would be SO amazing!!! If I had the money, I could get the infusions within a week or two. I could go out to California where I already have a place I was referred to and I could get them done.
imnotwillferrell3 karma2013-01-28 19:42:51 UTC
what did you dress up as for halloween?
der_juden7 karma2013-01-28 19:56:59 UTC
Great question.. I was a psycho sushi chef. I made sushi out of candy and gave it to people.
imnotwillferrell1 karma2013-01-29 00:01:33 UTC
that's pretty neat
der_juden1 karma2013-01-29 00:06:46 UTC
It was :)
viken19763 karma2013-01-28 19:43:07 UTC
I will never complain about a toothache again.
der_juden10 karma2013-01-28 19:57:50 UTC
Hey, toothaches suck! The way I see it, pain is pain. We all go through it and we can all agree it sucks!!
iamaredditer3 karma2013-01-28 20:19:43 UTC
Do you ever run around like Ricky Bobby? Like this http://www.youtube.com/watch?v=74Obm6bEH80
der_juden1 karma2013-01-28 20:27:11 UTC
If I could run, I probably would! Because that sounds pretty awesome. But, no, no I have not.
djmoody903 karma2013-01-28 21:10:11 UTC
Does alcohol on a cut increase the burning sensation?
I know (thanks to TIL I believe) that rubbing alcohol lowers "burning sensation" threshold to where your body's room temperature believes it is burning.
Similar situation in increase in pain?
der_juden3 karma2013-01-28 21:17:42 UTC
I've never put alcohol on any cuts I've had on my bad arm or leg, but I would assume it would for the simple fact, that if you touched my hand it would hurt. So the alcohol on a cotton ball or cloth would hurt all by itself.
Waterrat3 karma2013-01-28 20:32:29 UTC
Have you tried marijuana? Anti convulsents? Keto diet?
Have no idea if any of this would help.
der_juden2 karma2013-01-28 20:38:24 UTC
You could be on to something. ;)
Waterrat2 karma2013-01-28 21:12:15 UTC
Or all of the above at once!
Anywho,I wish you the bestist of the best and keep Reddit updated on your progress.
der_juden2 karma2013-01-28 21:14:43 UTC
Anti convulsents? Keto diet? Not a clue what these are... elaborate? Thank you :) I will most definitely keep Reddit updated :)
Waterrat2 karma2013-01-28 22:58:37 UTC
Another thought..Ok,this is even further"out there"..Would putting you in a coma cause your brain to forget it's doing all this crazy pain business?
der_juden1 karma2013-01-28 23:36:36 UTC
That is one way that Ketamine is administered. That's what the ketamine does, its like a computer reboot for your brain.
Waterrat2 karma2013-01-29 00:27:59 UTC
Now that is interesting...You get to reboot.
der_juden1 karma2013-01-29 00:34:15 UTC
isn't that cool? I sure hope it works!
Waterrat2 karma2013-01-29 00:37:38 UTC
It is indeed! As do I.
der_juden2 karma2013-01-29 00:45:38 UTC
tixmax2 karma2013-01-28 22:38:18 UTC
der_juden1 karma2013-01-29 14:07:26 UTC
I have not tired acupuncture or any TCM. I'm a little leery about things like this unless there are case studies showing it helps. I'm also a little worried that acupuncture might make it spread since any kind of stimulation can cause the condition to spread as it did to my leg in September.
Waterrat1 karma2013-01-28 22:39:29 UTC
Sure thing..A link is worth a thousand words,more or less.
Anti seizure meds for facial pain:
The keto diet and epilepsy:
Would this help? I have no clue..This is just my usual stab in the dark at dancing cockroaches.
Excellent...Updates are always appreciated.
der_juden1 karma2013-01-29 15:19:27 UTC
husband here - She has tried a few anticonvulsant medications and there are a few studies of CRPS treated with gabapentin and pregabalin both of which she has taken. Usually at best she saw about 10-20% reduction in pain for about a week and then the effects left. Although the side effects were always there and she did not like the foggy feeling she got while taking them. I would think that the Keto diet might help slightly, but from the success we have read about Ketamine and how it works, it sounds like the NMDA receptors are what cause this or are at least the main cause. So I don't think any of the medication or diet that target the GABA receptors really can do alot for CRPS patients.
hannahhey3 karma2013-01-28 23:15:43 UTC
Wow. One of my best friends has RSD. She has had it for many years and it is so hard to hear when she is in pain and i cannot do anything about it. She is one of my role models even though we have drifted apart(and she has no idea that i am writing this right now haha). She tells me nothing can help her, and it is so frustrating to see that i cannot do anything to help her.
So, i must ask. What is the best way to be a friend in these kinds of situation? The only think i know to do is find a way to distract her, get her mind off the pain, be silly. Is there anything else?
der_juden1 karma2013-01-28 23:41:32 UTC
Thank you for reaching out and asking. For me, the best thing my friends can do is just listen. I'm a talker- I talk about everything in my life and sometimes I give pain a louder voice than I should. Just being patient and as understanding as possible helps. We understand there is nothing that you can really do to help take the pain away, but just being there and not turning your back is the best thing you can do! You're friend has a great friend in you, she is lucky to have you! For me, my friends helping me take my mind off it is great, especially being silly. Laughter truly is the best medicine.
anc1en7z3 karma2013-01-28 19:51:44 UTC
isn't Ketamine an illegal drug?
der_juden14 karma2013-01-28 20:03:27 UTC
Actually no. It is not FDA approved, but we are working on that! There are petitions out there for the FDA to approve it. Really couldn't tell you why not, to be honest. Ketamine is used in hospitals all around the world. It has been used as a mix with other drugs for anesthesia for surgeries, even in children's hospitals to help calm children during traumatic situations. Ketamine has been used in many CRPS cases all over the world, starting in Germany using a coma.
KnowsTheLaw3 karma2013-01-28 21:25:50 UTC
It is schedule III in the states, and schedule I in Canada. It is only legal for use under medical supervision. You could buy it on the street for $80 a gram (estimating).
$2000 sounds like it would be quite the trip.
I was at a pharmacy one time, and a guy walked in to pickup ketamine. The pharmacist had a laugh after he left, because they didn't id him. He looked sketchy, but was apparently there as a vet's assistant.
der_juden2 karma2013-01-28 21:30:23 UTC
Correct, it is a Schedule III. The $2,000 is not just the cost of the Ketamine, it is also the cost for administering it in a ICU setting. Lots of the places that do these infusions don't take insurance. Scary about the pharmacy, I know it is used on the streets as Special K. I wont be getting ketamine like that, it is mixed with a cocktail of other drugs.
__arlyn0052 karma2013-01-29 04:53:45 UTC
Hope you start your treatment soon & all goes well.
der_juden1 karma2013-01-29 16:37:13 UTC
Thank you, I hope so too! :)
onytay752 karma2013-01-28 23:27:46 UTC
i have heard a lot of stories of california wildfire vitims recieving pain relief from medical marijuana. have you ever tried or considered trying that?
der_juden4 karma2013-01-28 23:53:28 UTC
You may be on to something ;)
Haitch9092 karma2013-01-28 19:47:41 UTC
How does it effect your every day life?
Do you have a job?
I'm interested to know with this pain how bearable it is and if you get used to it?
if you could answer those questions it would be great!
der_juden5 karma2013-01-28 20:01:04 UTC
It effects me in ways I never thought possible. These days I walk with a cane more often than not. It effects everything- you never think how much your arm and leg do for you until you feel each and every movement. Even the brush of a shirt or the slight touch can make it unbearable. I do have a job, I am current on short term disability- it sucks because I have been working since I was 16, and I actually like my job for the most part. I feel guilty because I know we have a lot of medical bills piling up and me not working makes it hard for us to pay for those things. You never really get used to the pain. Strangely, it can change from aching burning pain to pins and needles and freezing cold. Nerve pain is the worst pain I have ever felt, personally. Thank you for asking!
Skulldude34932 karma2013-01-28 19:53:33 UTC
You're being treated with Ketamine?
Really hope you share the results of your treatment, sounds interesting.
Have you tried treating yourself with Marijuana? It's okay, i'm not a narc ;)
der_juden4 karma2013-01-28 20:06:33 UTC
I am not being treated with Ketamine just yet. I have a consult with an area doctor on Feb 13 where we will discuss the best outcomes of the different Ketamine treatments and decide which one will work best for me. As soon as I have the treatments, I will gladly share the results! I have tried many treatment options, let's just leave it at that ;)
tayshwnjackson2 karma2013-01-28 20:29:42 UTC
Are you the only person like this or are there others out there? If so, have you talked with any of them and shared your experience?
der_juden1 karma2013-01-28 20:32:41 UTC
I am not the only person out there like this. There are about 1 million people in the USA that have it, millions across the world. Not sure if you heard about Paula Abdul having a disease, but this is the one she claims to have. I have talked to many of them, I have met with two others here in my state that have it. It's nice to be able to have someone who can relate, though I wouldnt wish this on anyone.
someGuyYouDontkown2 karma2013-01-29 02:12:00 UTC
I'm sure you're tired of the armchair doctors, but this sounds like it could be Lyme or a related co-infection. I contracted Lyme disease and developed a slew of neurological problems. Let me know if you would like more info, or head over to /r/lyme.
der_juden1 karma2013-01-29 14:17:32 UTC
I don't think its Lyme or an infection since it started right after a car accident and that is the MO of CRPS. You have a minor or major injury and then your nerves go haywire basically. But thanks for the input.
shotty2932 karma2013-01-28 21:18:12 UTC
I take a pre-workout supplement that gets my skin all tingly, itchy, and hot.........probably not as bad as your, huh?
der_juden1 karma2013-01-28 21:24:29 UTC
I wouldn't think it would be as bad, but I have no idea. Imagine feeling that way 24/7 :(
A lot like Parasthesia, however it goes deeper than the skin. I can feel it all the way down to the bone. One way I've explained it is; take my bone out and fill it with ice. Take out everything excluding the ice, and fill it with hot lava.
shotty2931 karma2013-01-29 15:58:04 UTC
Oouch........I'm sorry you have to go through that.
der_juden1 karma2013-01-29 16:42:41 UTC
Yeah, it sucks quite a lot :(
humanefly2 karma2013-01-28 21:23:11 UTC
This may possibly be a dumb question:
have you tried botox or is it considered an option?
I didn't research to see if it was used for your condition, but I think if you choose the right location for injection it can cause numbness. You could target an area and see if making it go numb for a few months helps it heal, and then move on to the next area.
I have no idea if this is an option, I only ask because I've heard it really helps migraine sufferers, and although botox is temporary, many times the migraines never come back.
good luck I hope you get some relief,
der_juden1 karma2013-01-28 21:26:03 UTC
Not a dumb question, I actually don't know. I tried a lidocaine infusion ( 300mg) a couple of weeks ago and it didn't numb anything nor did it take away the pain :(
Superpowers8102 karma2013-01-29 04:18:39 UTC
I think Alicia Keys would like to meet you.
der_juden2 karma2013-01-29 16:31:11 UTC
That would be amazing :)
CmdDomino2 karma2013-01-28 20:01:58 UTC
Get well soon!
der_juden2 karma2013-01-28 20:09:41 UTC
Thank you so much! That is what I am trying to do :) It'll happen, I know it!
abi132 karma2013-01-29 03:53:01 UTC
I'll be rooting for you.
edit: 2/13 is my birthday. This will be my bday wish. :)
der_juden2 karma2013-01-29 16:19:11 UTC
I appreciate that!
mollymcflyyy2 karma2013-01-29 04:12:57 UTC
der_juden2 karma2013-01-29 16:30:40 UTC
It is possible, at least at this point. Not a sore spot :) My husband and I decided not to have kids before I got CRPS. Thanks for asking!
Mialutz2 karma2013-01-29 04:29:02 UTC
I can actually feel your pain. I had a heart cath thru my wrist a year ago and although my heart was fine the procedure triggered CRPS. Mine is lower on the scale than yours but the pain is terrible and nothing helps. You mentioned dilauded did it help? I found that no real amount of medication helped. The only thing that lessened my pain was neurotin and a nerve block that made me feel like a stroke victim. The coma treatment is extreme are you scared? When my pain was at its worst I told a doctor that I would agree to an amputation if it would stop the pain.
der_juden1 karma2013-01-29 16:39:59 UTC
It's horrible, isn't it? I'm sorry to hear that you have it also. The dilauded didn't really help, nothing does, but it helps take the edge off (which is enough for me these days). I had two nerve blocks- those suck! Mine went through my neck. I'm not actually getting the coma treatment, but I will be in an outpatient setting for many days. I would like to do the inpatient especially since I dont know how the ketamine is going to effect me. Ive threatened to get my arm and leg cut off because honestly if that would mean no pain I would do it. But there is always phantom pain you have to worry about. I wish you the best of luck on your journey!
darthchurro2 karma2013-01-29 05:00:57 UTC
If you don't want to spend $60K or whatever, ketamine is apparently easier to get hold of in Canada and it's also prescribed by vets a lot here in murka. Ahem. Apparently.
der_juden1 karma2013-01-29 16:00:32 UTC
My big thing is that Ketamine can be administered many different ways. There are a few very successful protocols for the treatment using Ketamine for CRPS, and I want to actually follow those which would mean I would need to do it through a physician. I don't know enough about drugs to want to do it myself :(
iareziga2 karma2013-01-28 21:56:00 UTC
Woah, I can't imagine the hell you're going through (unintentional by the way).
Anyways, I am really sorry, but I couldn't read the whole text due to some real life stuff, but I don't want to miss the chance to ask you: is there a thing in the whole world that can make you feel "cool", except for surgery of some sort ofcourse (I mean if cold water or any other thing makes you not feel like burning)?
der_juden1 karma2013-01-28 22:16:12 UTC
Sometimes taking a bath helps, ice packs give the illusion of helping. I wish there was something else! Hopefully the Ketamine will help!
ericisinreddit2 karma2013-01-29 01:54:08 UTC
Are you disappointed that we are not so advanced in medical treatments, but we are so advanced in computers/cellphones?
der_juden1 karma2013-01-29 16:11:05 UTC
Absolutely. You would think that taking care of our own kind would be of utmost importance, I've learned the hard way on that one :(
Thatmaninthevan2 karma2013-01-28 21:03:22 UTC
I thought K made you feel like you were on fire
der_juden2 karma2013-01-28 21:09:23 UTC
Haven't heard that one.. maybe you mean the hallucinations? Ketamine does cause hallucinations, however the infusions I will be getting are a mix of Ketamine and some other drug to combat that :)
alexandrarosee2 karma2013-01-28 23:26:59 UTC
Wow I can't imagine that, and I hope they find a way to control it soon!
My question: Do you ever kind of get used to the pain, or have it go into the back of your mind, or are you constantly aware of it?
der_juden3 karma2013-01-28 23:51:48 UTC
Thank you! I sure hope so as well!
Yes, I do get use to it sometimes. I'm always aware of it, so it's become a normal part of my life, but it's still very irritating. I learn to live with days with extreme pain and days where it is just a little less intense. Those are the best days, that's when I try and get out and do things I enjoy. It sure isn't easy, and honestly for me my pride hurts a little having a handicap sticker to park in closer spots and walk with a cane. But I'm thankful for those days! I wouldn't know what to do with a pain free day, but man... it sounds amazing!
nionvox2 karma2013-01-28 23:27:21 UTC
I can't even imagine how horrid that is. Does it interfere with your ability to feel pain normally though? Like if you smack your toe in a door, does it feel like burning, or just AAAAAAH! like normal?
der_juden1 karma2013-01-28 23:53:03 UTC
It actually doesn't interfere with my ability to feel normal pain, I get to feel that too! It's on top of the normal pain, so I try not to smack my toe in a door haha.
nionvox3 karma2013-01-29 00:49:54 UTC
Oh, lovely. lol
der_juden2 karma2013-01-29 01:24:07 UTC
tekhnomancer2 karma2013-01-29 00:19:00 UTC
What, if anything, can you do to help mentally "block" the pain out for a while? Are there any home remedies you've come up with to give yourself a few minutes of peace each day?
der_juden2 karma2013-01-29 00:35:07 UTC
music and video helps a lot. sometimes just laying down with my eyes closed and the window open, sleeping helps when I can actually sleep.
tekhnomancer2 karma2013-01-29 01:02:48 UTC
Sleep is pretty much the best thing ever. Thank you for your response.
der_juden1 karma2013-01-29 01:24:20 UTC
Agreed!! No problem :)
Anterai2 karma2013-01-29 00:38:41 UTC
Can't you sue the hospital for the broken device? o_O
And why does your blood stop circulating?
der_juden1 karma2013-01-29 00:45:26 UTC
Not too sure on that!
My husband was helping me write replies earlier and he wrote that. My blood doesn't stop circulating, but it sure acts and looks like it. At times my whole hand will turn dark blue and go freezing cold, not fun.
Anterai1 karma2013-01-29 00:46:33 UTC
Why? Did they give you any guarantee on the device working?
Why does it go cold?
der_juden2 karma2013-01-29 01:23:08 UTC
No guarentee, but my doc said I was the first person he's had in 2 years where the machine went haywire... not sure if thats true. Your nerves control everything, so it feels like its being constricted around my wrist and causes my hand to turn blue and freezing cold, like if you were to wrap your fingers around your wrist.
Anterai1 karma2013-01-29 08:31:28 UTC
Weird, i have no idea how nerves can stop bloodflow o_O
der_juden2 karma2013-01-29 15:52:44 UTC
Me either! Nerves are crazy little things ;)
Anterai0 karma2013-01-29 16:04:02 UTC
But did you try asking the doctors about it? Because it looks like one weird sympthom o_O
der_juden2 karma2013-01-29 16:41:53 UTC
Oh yes, they are aware of it. It's just par for the course, unfortunately. There's really nothing they can do about it. It really is a weird symptom!!
SirRednaelLecnam2 karma2013-01-28 23:10:31 UTC
I sincerely hope you get better as soon as possible.
Does the pain dominate your thoughts constantly or can you forget about it a bit when you do fun stuff like watching a movie,..?
der_juden3 karma2013-01-28 23:38:57 UTC
I sincerely thank you for that, I surely hope so :)
The pain can dominate my thoughts, I do my best not to let that get to me, but sometimes I'll be honest, I cant help it. Whenever I have a good day, I try and get out of the house. Remember the world is still there and it still smells as wonderful as it did before. Thankfully, when it gets really bad, I have my husband to read me Reddit, and that helps a bunch!
The_Coon12 karma2013-01-28 23:25:50 UTC
This is a very personal question but I'm curious, how is the sex? Like does it hurt to have? Have you stopped having sex? And do you have any kids/ plan on having kids?
der_juden2 karma2013-01-28 23:44:18 UTC
I have no problem answering, and thank you for asking! Well, it's unfortunate. It's very difficult to have, the pain takes over and I have to stop. I feel bad for my husband because I want him to enjoy our time together, but he feels the same for me and he doesn't want me to be in pain. We haven't stopped having it, but it is not as often as either of us would like haha. We actually do not plan on having kids, we weren't before I got CRPS. I love kids, but I love to be the "Auntie" and give them back after some time :)
The_Coon11 karma2013-01-29 00:03:39 UTC
ahahaha well I'm sorry to hear that, hopefully you guys can enjoy your time together soon! And I wish you all the best! And thank you for answering!
der_juden1 karma2013-01-29 00:07:08 UTC
Thank you! I appreciate it and I hope so as well :)
Ipoopinurinals2 karma2013-01-29 01:16:37 UTC
I would like to know, does the pain come on severe bursts? Or is it 24/7?
der_juden1 karma2013-01-29 14:10:50 UTC
I varies quite a bit through out the day and never really goes away, but I can get severe bursts out of nowhere. The worst is when I get them right as I'm trying to sleep.
professeurchaos2 karma2013-01-29 01:23:01 UTC
I wanted to first say, thank you for sharing your story. I'm a physical therapy student and we happened to cover CRPS in our class. The whole story is actually not that uncommon, CRPS can results from even the smallest injury. It was interesting to hear how much you went through as well, all the different treatments and how long this has lasted. CRPS is a slow disease to cure and you are definitely a strong person to be dealing with this that long. My only question is: did any of the other treatments apart from Ketamine help out your pain or desensitize the area noticeably? Or did you do anything yourself to reduce the pain? I only ask because everything we learned in the class you already covered so it would be pretty helpful to have a first hand account of what helps. Thank you!
der_juden1 karma2013-01-29 16:09:51 UTC
Oh awesome, thank you for commenting/ asking. Unfortunately for me, nothing has significantly helped other than pain killers. PT for me has been extremely painful (Ive seen two different PT's and it was the same for the both of them). I will for sure let you know if something does help, but as of now not so much :(
PuhPuhPsh2 karma2013-01-29 01:43:58 UTC
My heart goes out to you, this sounds terrible I'm so sorry this happened to you, but you seem to be in decent spirits.
I would recommend a couple of teachers for your sanity.
1. Alan Watts
3. Mellon Thomas Benedict
On another note, have you heard of this girl who has a disease where she CANNOT feel pain, if only there was some way to give you this......http://www.nytimes.com/2012/11/18/magazine/ashlyn-blocker-feels-no-pain.html?pagewanted=all&_r=0
der_juden1 karma2013-01-29 16:10:30 UTC
Thank you!! I have heard of that girl... I so wish that could be me for just one day, but not being able to feel pain at all is scary!
onedavester2 karma2013-01-29 01:54:08 UTC
You should look into HBOT before Ketamine. HBOT will make your body heal itself and the treatment lasts. Ketamine works very temporarily. Even people that get Ketamine induced coma treatment often get it right back if they ever fall or get any kind of contusion. My ex wife went to the place in that link and is still in remission after 5 years. This is after spinal stims, ganglionic nerve blocks, and every other conventional treatment there is. It cost me $5000 for one month of treatment with Dr. Spiegel and it was worth every penny. they ar every nice people and it is a nice comfortable facility. HBOT is completly non invasive. My ex had to get wax cleaned out of her ears before they could get to the pressure needed for CRPS treatment. Other than that first day with the impacted ear wax, the treatment was a breeze. She went there in a wheelchair and came back walking 32 days later. She was walking and going to tourist attractions after the first two weeks of treatment.
der_juden1 karma2013-01-29 16:18:23 UTC
Interesting! Thank you for sharing. I have heard of this treatment before, something I will look into for sure.
legallynamedPhuck2 karma2013-01-29 02:04:02 UTC
This caught my attention, as my best friend had this disease too. He basically had it cured with acupuncture. I'm not sure if you've tried it or thought of it, but it really worked for him, and he is going to school for acupuncture soon. Hope I could help with an idea!
der_juden1 karma2013-01-29 16:15:28 UTC
Thank you for your response! I have not tried acupuncture, but it is something that has been recommended to me. Once I've tried the Ketamine (if it doesnt work... which it better!), then I will try that :) I'm just afraid it might spread with acupuncture.
poloman123452 karma2013-01-29 02:05:51 UTC
This might not be right for you, but have you tried marijauna?
der_juden1 karma2013-01-29 16:18:40 UTC
You might be onto something ;)
jaszune2 karma2013-01-29 02:29:57 UTC
Much love and good thoughts that you recover soon from this illness. <3
der_juden2 karma2013-01-29 16:19:03 UTC
Thank you so much for your support, I need as much as I can get :)
TheImpetuous2 karma2013-01-29 04:12:50 UTC
der_juden1 karma2013-01-29 16:19:47 UTC
I haven't, but it is something I have thought about trying.
AssortedInterests2 karma2013-01-29 04:14:17 UTC
My longtime girlfriend has RSD/CRPS. I have a huge appreciation for how difficult this is to go through and to be a caretaker for. It is sometimes agonizing just to have to watch and comfort her when she's having a bad pain day, knowing there's not really anything I can do to help in the short term, feeling helpless, so I can barely picture what it is like to experience first hand. She has gone through Ketamine treatment though, and it has helped considerably, so I wish you the best of luck.
der_juden1 karma2013-01-29 14:21:54 UTC
Husband here - its very difficult to see someone in pain for really no reason and all the things you know to take won't help. Also the fact that touch can cause pain to makes me cautious about touching her since its on her whole right side now. I have to be very mindful "okay just the left side" when cuddling, giving her a back rub, helping her scratch an itch, or simply holding her hand.
der_juden1 karma2013-01-29 16:36:35 UTC
Wife here- He is a wonderful husband :) He takes great care of me, even when I'm whiny (which is more often than not, I'll be honest). You're a great boyfriend, and the most important thing is just to stick with her and be her rock. I can't imagine what that is like, having to take care of someone who has CRPS, but I will tell you- I am so thankful for my husband and your girlfriend is so thankful for you!
no_usernames_here1 karma2013-01-29 00:46:03 UTC
Have you ever smoked medical marijuana?
der_juden2 karma2013-01-29 01:21:31 UTC
You might be on to something ;)
FreshGnar1 karma2013-01-28 19:57:14 UTC
Are you on fire?
der_juden1 karma2013-01-28 20:08:57 UTC
on the inside, yes! On the outside, well... no. But my skin can get REALLY hot.
lawlshane1 karma2013-01-29 00:48:19 UTC
I realize it's a big decision, but have you considered moving to, say, Canada? I can't fathom going bankrupt because of one's health.
der_juden1 karma2013-01-29 01:23:57 UTC
I would LOVE to live in Canada, however it is a lengthy process, and it takes 5 years to gain citizenship, therefore it wouldn't make sense right now to move for that reason. I sure wish I could live there though!
SirRednaelLecnam0 karma2013-01-29 15:02:16 UTC
Move to Belgium! Or England! Europe essentially. If you can get your husband to get a job somewhere here you could easilly migrate and get healthcare.
der_juden2 karma2013-01-29 16:05:59 UTC
If it were only that easy :) You can't just move and automatically get healthcare, you have to be a citizen- that takes time. If I am able to get more immediate relief now then I could potentially move to save me from staggering bills in the future, but I need relief much sooner than I could get it if we moved. Stress also makes my pain worse, and moving out of the country would be extremely stressful.
SirRednaelLecnam0 karma2013-01-29 16:14:26 UTC
I guess that's true... sorry for the stupid idea. There seems to be no easy solution to the problem.. good luck.
der_juden2 karma2013-01-29 16:41:10 UTC
Not a stupid idea at all. It's something that we've thought about. I sure wish there was an easy solution, but knowing me- I dont do anything easy LOL haha. Thank you!
DJ_Thundercock1 karma2013-01-28 20:06:43 UTC
So was "Girl on Fire" written about you?
der_juden1 karma2013-01-28 20:14:10 UTC
Apparently so! I've never heard that song until today, I love it!
SideWaysVote0 karma2013-01-28 21:31:27 UTC
der_juden1 karma2013-01-28 21:36:55 UTC
LOVE it! :D
illegal_deagle-6 karma2013-01-28 19:38:14 UTC
Not now, we're talkin football.
der_juden4 karma2013-01-28 21:10:12 UTC
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