Evening, My name is Kes, I'm 17 and I was recently diagnosed with CRPS throughout my entire body and still spreading to every little part, Allodynia, underlining arthritis throughout my entire body, and a few other things I didn't even bother to remember. So yea I'm kinda a unique subject, at least most doctors say so My dreams of becoming an artist are shot and I stay home all day and finish my last year of highschool with a tutor that comes to my home. I was wondering if anyone knows any type of cure. I'm currently taking Lyrica 100mg twice a day and it does nothing. I went to a guru in RSD in my area and he can't do anything but biofeedback. I did biofeedback on a very very low ampage and I still broke the scale with the amount of pain rushing through my body. It's amazing you can even hold a conversation the doctor said. So someone please PM me or post here if you think you can help Thank you, Regards.

-Kes-

Hi there,
Welcome to Neurotalk. I am so sorry that you are dealing with RSD.
Please let me introduce myself:
My name is Alison, I am 12 years old and I suffer from RSD in my left leg. I developed RSD in March after an ankle sprain. I was diagnosed with RSD/CRPS type 1 in July.
1 month after I was diagnosed with RSD I was prescribed Amitriptyline by my PM doctor to try and help me sleep. I developed a nasty side effect of 'blurred vision', this resulted in a knock to my right arm, and I was diagnosed with RSD 2 weeks later. My arm is now fully recovered thankfully!

I am sure you know that there is no cure for RSD. Treatment usually consists of Physiotherapy, Medication and Occupational therapy. Most people see a Psychologist too.
This is a list of medications I have tried:
Amitriptyline
Lyrica
Paracetamol
Ibuprofen
Morphine
Tramadol
Gabapentin
So far, I have not found a drug that works

It sounds like your pain could be independently maintained, this means that it takes longer for the medications to work.

Hope I have helped. If you want anymore information just PM me
Thanks
Alison

One thing you might do is tell the group what area you live in or state and we may have someone in that area that knows of treatments near you.

I would recommend blocks. I think they are one of the best ways to try and put the RSD into remission. Some say it has to be early in the diagnoses but I have found that not to be true. I have seen people around my area with RSD that has done good with blocks after years of RSD.

Another thing is PT. I had good PTers. They should be very aware of RSD and know how to work with you with it. Some thing agressive PT is the answer. When I first started with this around 98, I was so bad bodywise that I could not have done the agressive PT. My Drs. disagreed with it also. I just don't think you should be over exercised to get to the point of getting better.

I also had triggerpoint injections. I think a couple of others here have had them. They have worked good for me. It is a time consuming thing. I had shots for over 4 years every place I needed them but they worked. My Dr. used lidocaine, mericaine, and ketamine. He did one steroid shot and decided not to do anymore of them. Those I was told you could only have 3 of them a year.

As far as meds, I have tried most all of them. Most I could not take anyway. I am on Methadone for the pain and also use lidocaine patches. I do fine with those but it took me years to get to where I could.

I know what the road you have is like. I spent almost 4 years in PT to get me to where I am. I started out with my back, then TOS and Fibro then the RSD.
My RSD is worse right now is my arm, hand, right foot, and pelvic area.

I know there will be others come on here with some good advice that will help you. Hang around.

Ada

Hi Kes,

I'm Frogga, I'm 22. I developed RSD when I was 16 and it became full body by the time I was 17. I am unable to move at all and have all the traditional horrible symptoms including alloydinia, dystonia, osteoporosis, mega pain, circulation problems etc and am in the beginning stages of ANS failure. So I do know how much it sucks!!

I am currently at University in the UK studying Psychology and loving it. Is there no way you can be in school? I was out of school for about 2 years and didn't go back full time for a further 2 years. I'm still in a wheelchair and need carers to dress me/ feed me/ operate my wheelchair/ transfer me etc but it's so nice to be back in the "real" world - or at least that's how I feel! It sucks so much being on HT!!!

There are many options that you can consider ranging from the ketamine coma to HBOT to alternative medicines, to other medicines to pain management courses. For instance - pain management courses have helped loads of people to gain a better quality of life despite the pain and helps them get more active - in the UK we have a very famous one in Bath which is called the PMU (Pain management unit at RHNRD http://www.bath.ac.uk/pain-management/). There are places in the US which have done ketamine low dose infusions which some people find very helpful and others have had the ketamine coma therapy in either Germany or Mexico. Some people find that blocks help (others don't). There are many more types of medication such as anti depressants, analgesics, anticonvulsants, muscle relaxants etc that can help the pain abit etc. I'm on ketamine, dihydrocodeine, Allegron, Paracetemol, Ibuprofen, domperidone, diazipam, trihexyphenidryl and baclofen.

Not sure this is much help but just wanted to say that I have been through what you are going through and if you ever want to talk I'm here. Ness is around our age as well and will no doubt come in and say hi when she's doing ok.

Love

Frogga xxxxxxx

Dear Kes,
Hello there. I just want to say how amazed I am at your strength as well as some of the younger folks that post here. This is a terrible disease both physically and mentally and I am so proud of all of you! I have an 18 year old son who has taken care of me for almost three years now. I have full body RSD, fibro, Rheumo. Arth., and Osteoporosis so I feel your pain. The one major thing I want to tell you is your mind will be your worst enemy...if you let it. Try to stay positive and focused and only take life one day at a time. Don't worry what other people think about what you must do...just take care of yourself and stand up for your rights. Have humor and try to laugh even though you feel like crying all the time. I cried alot and felt hopeless the first year because the people around me didn't believe I had that much pain and were negative towards all aspects of my life. It was heck. However, I have a positive attitude about life and try to keep humor and prayers in my life each day. It really helps me. I know right now there is no cure but don't let that stop you. Who knows, they may call all of us tomorrow and say "We found a cure!!!!"

You need to find a few people whether family or friends that support you and vent to them when you need to let it out. I think you need more pain medicine that just biofeedback. Biofeedback may be helpful later on but you are in real pain now and need to find whatever medicines may help you. If one medicine does not work keep searching until you find another that works. Don't give up hope. I will continue to keep you as well as all the other people that suffer from RSD in my prayers each night. Keep hanging in there and try to stay positive. Crying is good because it helps you to move on. Everyone here is pulling for each other so you can always vent here. I wish I had found this site earlier in my diagnosis because there are some great people here and I have found out more here than from my doctors. You take care of yourself. You are a brave person!!!
kathy d

I live in Central NY and have been seeing the specialists in the Syracuse area. I'm sorry to hear this is all happening to all of you. It's scary knowing that it's spreading everywhere, you can feel the new pains covering your body.. I hate it..


-Kes-

I thank you I try to stay extremely positive and I really don't let things get to me. If it ever gets that bad I take Lorazapam to help with Anxiety, though I really dont like to rely on that. I'm not one for medication.. and I've only been taking Lyrica for about 2 months before that I dealt with it Raw and sometimes I was walking into a doctors office and leaving in a wheel chair because of how little strength my legs have. I'm realizing that my legs are getting worse. and walking is hurting and my arms feel like they weigh tons and are pulling my arms from my shoulders. I'm not a heavy set person at all, and I've always been really healthy before this. I try to laugh when doctors say my art career and my plans are gone. I try to continue whatever it is I'm doing even when my body starts spazing because the pain rushing through me is breaking the limits my body can handle. I understand about friends not believing you. Even my guidance coucerlor at school thought I was making it up and called my mother to make sure I was actually in pain.. I was rushed to the emergency room before when my body wouldn't stop spazing from the pain and by the 3rd doctor I saw they believe I was just depressed cause I wear my hair over on of my eyes and they stopped caring about my pain. All my friends have left and I am home most all the time. I try to go out with my parents every few times but my body can't really handle this cold weather of Central NY. Sleeping is not happening and showering is really hard.. I think I've been misdiagnosed cause I dont have the swelling or redness you all have. and mine really didn't start with an injury. I think it was conveinent for the doctors to say I have CRPS but idk.. But Indeed we shall all make this through, and I promise I will find a cure and I WILL help you all.. I will find something to take this pain away and I will post it all over these boards and help cure you all I promise.


-Kes-

Hey Kes, sorry you're dealing with all this and so young! Makes me hurt to see youngins getting it so badly.

You don't have to have swelling and red skin to have RSD. A lot do but I only had swelling in the original leg for the first 5 months then when I learned to walk again it disappeared! I only have some minor swelling in the ankle now but that's it. As for skin discoloration, mine is purply,bluish,pinkish, mottled looking and my skin is very cold to the touch. Red skin usually signals what is called "hot" RSD where the skin feels warm or hot to the touch. It happens to the minority of RSD'ers and "cold" RSD, what I have is the majority of RSD'ers. Usually the discoloration, skin temp change and pain/spreading are RSD things, along with a burning feeling inside as well. I've had RSD full body since 11 months after I got it almost 5 years ago. I didn't have any skin discoloration in my arms at all until in the last 6 months or so. This is one funky thing to deal with and the different ways it presents itself in all of us. A lot of doctors try t say if you don't have x,y and z of ALL the symptoms you don't have it but that's a bunch of bull. You're not alone in dealing with all of this so ask any questions and we'll try to give you answers or at least our own experiences.

Hugs,

Karen

I am always sorry to hear of anyone so young having to deal with this monster called RSD, my heart goes out to you. After reading yours and other posts I am wondering if you could tell me how long ago you were diagnosed. I too am very surprised that they have not tried blocks on you, and would surely recommend it. As for what your doctors say about your career being kaput....All I can say to that is don't take to heart what every doc says. Some of them can be very insensitive and they don't realize that they can create self-fulfilling prophecies. I was diagnosed with RSD when I was 24, and at that time I was told I would not walk again. I do walk most days and I also chase after two young children - I sometimes have to do things differently than other people, but my children are happy, healthy and well adjusted and tearing up the house as we speak. I had just started my career at the time RSD hit and had a great job as a counselor in a Toronto Hospital....yes, that career was over. Now I volunteer helping counsel troubled teens and run a support group - it is much different than what I planned on, but rewarding in its own way. To the next doctor that makes a remark like that to you - well, I have found over the years it is always very satisfying when I can throw something back at them - like 'thank you for your opinion, but right now I am focusing on what I can do.' Keep pushing for treatment my friend, there are many out there that are worth trying and have helped tremendously for some people...just always research them a bit first if you can. I am sure that there are a lot of caring people here that can help answer questions too. Hang in there my friend!
Gentle huggs
Kimberly

Hey Kes. Glad to meet you. Sorry it is meeting bc of rsd/cprs but yeah.

Im nikki. i am almost 16. im in south carolina. i was diagnosed when 14 after a minor break to the ball of my foot when i landed wrong in gymnastics. my rsd is almost full body.

have you tried lidocaine/lisoderm patches? i havent yet but i have heard that they help and i dont like taking lots of pills. too much 4 me to remember.

cool! syracuse is really close to my grandparents.