I am so sorry that a young person like yourself has been striken with CRPS. Those around you need to be educated more about the condition. You certainly need some support. I want to welcome you here to Neuro Talk. You will find out information and a whole lot of compassion. Sometimes when a person is in severe pain, even family does not understand. You find out real quick who your friends really are. This site is here for you, and we will not abandon you. Do you have a specialist for your CRPS?. Do you have enough medications to help out? Depression can be an issue when pain is involved, so maybe your doctor should address that as well. There is help for this condition, and hope for it. You have to get the right kind of doctor in your corner to help you more. Keep posting your questions, and let us know how you are doing. I do care about you, and will keep you in my thoughts and prayers. since you are underage, you parents should be a big part of helping you toward a better solution to your pain. I am glad you found this site. I was in pretty bad shape when I found NT. I came here in a state of panick, crying, and definately not in control. I stayed, as my medical conditions stayed! I run back here as often as I can for the support I need. You will make some friends here too. Please feel free to post any comments or questions you have. Again welcome to NT, feel at home here. ginnie

Hi Apple,

I am so sorry to learn you have CRPS and have gone through so much
suffering before it was confirmed you had CRPS. My daugher while much
older than you also has CRPS resulting from surgery and despite the fact
the doc who did the surgery beleiving it was CRPS and sending her to a pain
doctor it was close to a year or over before other doctors confirmed and
she lost valuable time.

Sad to say this happens all to often. Things are improving, for example I
noted recently in our state nurses going through training and even those
trained are being required to add so many hours of instruction since nurses
are sometimes more exposed than doctors to help spot the problem of CRPS.

It is so important for support from family and friends. It is true family and
friends cannot really know how it feels, the challenges from day to day since
they do not feel the pain. I have tried to educate myself and continue to
do so daily since there is so much to learn and sometimes I get so frustrated and even angry at others who are part of my daughters circle,
because they have not taken the time to learn and to understand and without doing so people make judgements of those who suffer from
CRPS,

Please understand however there are those who do care, you have come
to a wonderful site with people who do care. Don't give up, you are on
a journey through pain but you are not alone.

Joydee

Hey everyone, I was diagnosed with crps about 3 months ago. I dislocated my knee playing baseball tore my mpfl and chipped part of my thigh bone and after 2 surgries I was left with constant pain in my right leg. Next week I'm getting the nerves "shutoff" in my knee I believe this is called cryoblation. Hopefully this helps, as of right now my whole life is upside down, my favorite thing to do is play sports, baseball inperticular and I can't even swing a bat. To make matters worse I am a construction worker and I am unable to work. Currently I'm on lyrica 100mg 4x a day it really helped in the beginning with getting me back walking. Was wondering if anyone is in a situation like me, this is by far the worst thing that's ever happened to me.

Thanks or reading looking forward to hearing from you guys!

Welcome to NT. Sorry to hear what you are going through. I've never heard of cryoablation for CRPS and I'll be very honest and say I don't know much about it. But with "cryo" being part of the word I assume that means that there is ice involved in this treatment in some way? I would just caution you that with CRPS/RSD the rule of thumb is NO ICE because this can cause spread. Many doctors are not very knowledgeable about CRPS so I hope that you have one who IS knowledgeable and who specializes in treating the condition. I know that when you are new to the condition it can be very hard to determine if you doctor knows what he is talking about because you don't have the experience with it yourself and you have not had a chance to talk to people who are going through the same things. But if a doctor tells you it can be "cured", that it cannot spread, that you should treat with ice, that you should immobilize the limb, or that it can only every be in an arm or a leg...those are typically red flags (all of these of course apply AFTER the Dx or suspicion of CRPS and not before).

I'm glad that the Lyrica helps...in the beginning it was (for me) one of the very few meds that made a noticeable difference in the pain and kept me walking (for a time). Are you doing any sort of physical therapy? Physical therapy is usually very key to the treatment of CRPS (though you do need to have your pain controlled enough so that you can DO the physical therapy).

Take care and keep us posted. This is an excellent forum to ask questions, to get support, or even just to vent when you need to. I don't know what I would have done without it these past couple years.

Hi Unlucky,

Catra is correct. This type of surgery has an extremely high rate of spread of CRPS. At the very least put this surgery on hold until you a) get a second opinion from a CRPS expert (steer clear of orthos and neurosurgeons) and b) do you OWN extensive research. By research I don't mean getting peoples opinions on blogs but by reviewing scientific evidence. This surgery will likely make you more "unlucky".

When it comes to CRPS the most important thing is to get smart real fast by learning how to be your own best advocate which will protect you from procedures that have a high risk for making you worse.

You may start this process by searching Pub Med. (Published Medical Research)

Remember, asking a doctor how many CRPS patients he or she has treated will likely give you no useful information, particularly if they butter their bread with revenue producing procedures and surgeries that benefit their bank accounts more than their patients.

My personal opinion about CRPS is that acquiring CRPS is indeed unlucky but surviving and recovering from it has nothing to do with luck and everything to do wi becoming a well educated and well researched advocate. Part of this process is learning when it is time to dump a doctor. These are all skills that are unpleasant but absolutely necessary to manage this disease.

Hope better days are ahead for you.

Thanks very much for your advice, I am doing physical therapy though I am limited to what I can do. The procedure involves a needle that gets really cold when they put it on the nerve. My doctor has explained that this is not permanent and may only last a few months. I have talked to another patient who gets this done and said it helped, after oing research I found a study where it helped 6 out of 10 patients but it is a rare procedure for a leg, I honestly just want to get back to work, and if some of my Pain went away maybe I'd be able to do more at physical therapy and gt strong enough to work.i guess all I can do is hope it will work.

Name is kristina im 24, here is my strange but true story.

I was a cake decorator at Vons. While i was making butter cream i was pushing the solid 50lb block of icing into the bucket of a commercial mixer " meaning its big" and it only fits in the bucket if the paddle that mixes it is positioned a certain way. Ive done this many times before i manually moved the paddle and i crushed my left hand between the paddle and the bowl keep in mind the space is less than an inch wide. it sounded like every bone in my hand was broken. I was in shock i had to collect my self and move the paddle back off of my hand. i took it out and it was bleeding from my palm and the top of my hand. i ran to the front of the store and quietly told the first co worker i seen that i had hurt my self bad. as she ran to the phone to page a manager i started crying i couldnt believe what had just happend. i had done it so many times before and did not get hurt. i got taken to some urgent care center they said i was FINE. i went back to work a few days later. i went back to the dr my self and told him somethings wrong my hand feels really weird. he gave me light duty. three months later my hand turns purple and i tell my manager that this isnt right im going to see the dr again. he sends me to a hand specialist. he gives me PT and accupuncture and then doesnt see me for months. i request a new dr. she tells me THERE IS NOTHING WRONG WITH YOU. she gives me a cortazone shot in my ring finger and gives me PT also. the PT is so intense i cant take it. the PT notices that i had been complaining about my shoulder hurting and it being hot all the time. like its on fire. she tells me that i need to make it clear to the Dr that it is my shoulder now that is hurting. so i go to the dr and tell her look im not *edit* crazy im young and i want to work but there is seriously something wrong. i told her my fore arm my upper arm and my shoulder up to my neck feel like they are burning. she tells me its because i hold my arm close to my body and that i need to use it more...and releases me back to work. i was so ****** off when she turned around and told me well if your going to get mad ill change it to light duty instead of full duty...why would she say that? anyway i go back to work after 8 months of being out. i start my cakes i do 80 of them " thats normal work for a Cake decorator" and i do my normal stuff. im off the next day... talk about pain i couldnt get out of bed i wanted to go to the ER i was in intense pain. i go to work the next day i life one tray of cakes and i start to cry. my manager noticed that i was struggling and asked me to leave that it wasnt safe. so i requested a QME appointment. the dr says that i have symptoms of CRPS so he sends me to a specialist. they do x-days of my arm neck and back. he said that im not crazy and that he agrees with the QME dr that they need to look into that. So last week after a year and a half of thinking im crazy i get diagnosed with CRPS type2 and its getting worse. i havent started pain management yet i have an appointment on the 24th and im nervous. i missed my last one due to anxiety. im depressed and just so lost. im taking tremadol and i cant sleep. my mother actually committed suicide when i was 15 she sufferd from fybromialgia for 6 years and couldnt take anymore. this reminds me of all that i witnessed when i was a teen. she was on so many meds shed sleep all the time. and i dont wana be like that. im freakin out my gf and its starting to freak me out.



kristina

Kristina,

Welcome to the group. First off, you are not crazy. Unfortunately, like so many we end up with dr.'s who don't know what rsd is or the fact that we are not faking.
going to the pm will be (hopefully) a good experience as long as he has experience in rsd. You will be able to get on the proper medications and start different procedures to help with the pain.
I am sorry to hear about your mom, that must be rough. Make sure you get on an antidepressent as well as pain meds and you will definetley see a difference. Just remember, there are many meds out there so if 1 or 2 don't work don't get frustrated. Be honest and truthful with your dr. and they can make adjustments to help you. Good luck and welcome.

Hey, I have been diagnosed with RSD for one and a half years and I am 17 years old. I use to soccer and run for my track team. But in 2007 I broke the growth plate in my ankle, that was just the beginning of many casts , doctors, and pills to dull the pain. In 2010 I had my 1st ankle reconstruction surgery to take out bone what grew back in the wrong area, and to clean out the sinus tarsal, they put an implement in my joint so it wouldn't collapse. I was able to throw discus for one year but it was very difficult and I, honestly, sucked. At practice one day I twisted and the implement twisted as well, so 364 days after the 1st surgery I had my 2nd surgery, they took out the screw and cleaned out inflammation and anything in the way. I was casted, yet again and my hope by then was long gone. I was finally diagnosed with RSD when I got out of the cast and still had the issues, the pain, burning, sensitivity to the littlest thing and more pain. Every day was the same for the 2 years, now I am a senior and throwing through the pain, I have came to the conclusion that I am going to hurt even if I sit at home so why not do something I love. I can only do things for so long but I am proud to be able to do what I can. I lettered in track last year, a major accomplishment for me, i fought through so much pain. I am now using acupuncture and medicine, which only take the edge away if they even work. I have had many spinal blocks but they haven't helped like my pm hoped. I am in need of support and ideas for where and what to do. Noone around me knows what I am going through and I can't handle not talking about it anymore, it is difficult for me to talk about the issues that come with the RSD because, to people that don't have it, I feel like I just am a bother and they get tired of me complaining. Well, sorry for the extremely long post but I wanted to let everyone know about me some.

Welcome to Neurotalk. Inparticular, the rsd forum. I am sorry that you are going through this at such a young age. I to fell and crushed my ankle. I have had 2 surgeries and many lsb's.

Here you will meet lots of people and make new friends. We learn from one another. So I hope you enjoy your experiences here.