tyvm for all the encouragement that i am not alone in this and i may get better

Hi

I'm 16 and have been recently diagnosed with CRPS in my whole body. It took me 5 years to be diagnosed. In that time the pain has just got worse and the problem has spread. I have really tried to explain the problem to both friends and family and no-one understands. I was just wondering whether other people found that both the doctors thought that you were lying or that your family and friends just didn't "get it".

Thanks

Apple16

Very sorry that you are going through this Apple...and at such a young age. I have had my fair share of doctors and people at work (and a lawyer) who treat me like I am exaggerating or lying about how much pain I am in. Bottom line...those are not good doctors in my opinion and you just have to keep looking until you find the right one (which I hope you have now that you have a diagnosis). And the other people...well...they just don't matter to me is what it has come down to.

I've been pretty lucky that my family and friends have never made me feel the way those others have and they have been 100% supportive throughout. BUT...I would say that despite how compassionate and supportive they are...they really don't "get" how bad the pain is and exactly what I stuggle with each and every day. How hard it is to make myself get up in the morning and to do the things that I need to do...to keep fighting. But I don't think it's their fault because I don't know that anyone who hasn't been through this and HAS RSD can REALLY fully understand what it is like (and I wouldn't wish it on my worst enemy let alone family and friends). Since family and friends are supportive, what I try to do in frustrating situations where I feel they are just not "getting" it, is educate them. They are always willing to listen and to try to understand. Not only is it good to help them understand but I personally find it sort of therapudic too.

Now that you have the diagnosis are they working on an aggressive treatment plan? Do you have any questions? This is a really wonderful site and I am glad that you found us because I know how helpful everyone has been on here for me. Take care...I hope they are able to do something for you.

Hello apple
 

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:hug:

My crps story
 

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.

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.

:hug:Joydee

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.

Added them together
 

I do apologies I should have stated all this first before I posted the other post.
I'm Phil I'm 40 something ( see its not just women who are shy about there age) I've suffered with back and neck troubles for over 20 years and I've just been diagnosed with CRPS .
I used to love hill walking with my Huskies but I cant do that any more but they still get there fun pulling me on my Mums old Mobility scooter.
I've just swapped my car for an automatic which means I can drive again when the drugs let me .
I'm Married (sorry ladies ) have a 21 year old daughter who's still a student.
and Last year was the worst of my life. I was ill in march 2011 which turned out to be CRPS ? My Auntie Died of Cancer and My Mum who I cared for died on the 13/12 of skin cancer ,so Xmas was crap and My old dog had to be put down on 13/01/2012 and now the CRPS has spread through out my body.
hey ho everything comes to he that waits or so they say.
There's a lot more I could say but I'm sure you all have your own problems so I wont bother . Thanks for letting me rant.

I have suffered with sever back trauma for over 20 years . I had constant pain which now and then say 3 times a year would go berserk for no reason other than twisting and force me to use crutches and leave me in agony for weeks or months. In March 2011 I had an ingrowing toe nail on my right foot which went septic and after being given 6 lots of Antibiotics (one of which I was allergic to and made me seriously Ill ) I had a reaction and both feet Ballooned to the point where I could not ware shoes or socks . After 12 months of Blood Tests and X Rays and the Like . I finally got to see the right Doc ???? Who Diagnosed me with CRPS . He Informed me I had not got Osteoarthritis in my spine hips etc as I had been diagnosed with 20 + years ago but CRPS . My doc put me on Lyrica and it does help take the edge off I'm on 300g a day . Lately the past 3 weeks or so I have had pains in my elbows forearms and my hands are slightly swollen and the palms are red. I am finding hard to use my crutches and it all seems to be getting worse.
If anyone can give me some advice as to me having CRPS etc , Like can it spread through out your body that quick , and where will it stop , I would be grateful. Thanks in advance Phil.