Trying To Understand Crps Type 1

I am new here and i also have crps type 1.I have been on all different types of medications and treatments but nothing seems to work. Everyday i wonder what the future holds. The specialist and doctors keep saying that this isn't a permenant condition, it will eventually burn out, Well, whats eventually? 1, 2, 10 years?.. I don't think anyone has a clue. This has been going on for 12months now, medications, doctor after doctor, treatments...(What does the future hold).

 Thanks for letting me vent..

flaminggal flaminggal
41-45, F
12 Responses Jan 27, 2010

Have you tried Lyrica for the burning pain? It has helped me. It doesn't take the pain away completely but tones it down. At least it has for me. I do agree most doctors do not know how to treat this and I feel like a guinea pig.


that is the first iv herd about burning out i was told that it was for the rest of my life do you have any sugestions to help relive the pain medication does very little hope you fell better soon

I am wondering the same thing, I am newly diagnosed, along with carpal tunnel! all because of a small ligament tear while arresting someone! The pain has gotten worse over the past three weeks and at first it was just pain that I constantly was rubbing my wrist but now I cant do anything with it, like pick up my cell phone! I am on neurotin and xanax and that is it so far! What medications do they have you on and what kind of doctors do you see>

I have had it since i was ten... im 22

I was diagnosed with CRPS in 2010 but have been suffering with it 10 years in October! I have regular physiotherapy where I do exercises., desensitising techniques, mirror work because my tendons and muscles don't work very well! I do not take pills or nerve blocks because I have chosen to put up with the pain on a daily basis. However when I have extreme episodes which are completely spontaneous and the length they last is different every time then I take whole range of pills to try and stop it escalating! The worst part I find is people not understanding the condition and what you have to deal with on a daily basis! Talking to people that understand really helps and stress makes it worse! You have to accept it and work with it not against it because it won't get better!

im new here to i share ur feelings and i think unless u go through this friends and family dont quite understand even though they try. i suffer with pain in my head its like some ones taken a knife and stabbed me this ha spread over the coarse of a year and now my right shoulder arm and hand feels broken but my doc is useles and not very understanding says ive tried all the drugs and theres nothing else for me even thouogh i try to be strong its so hard im glad i found you all on here and i wish you all so kind of relief. my names mark feel free to any one who would like to talk some times we can feel so alone

Here's a funny story for you hand spasms out of control quite reguarly and those nearest and dearest to me(usually a bf or a best friend) tell me not to fly away : )<br />
I used to attend the hunter pain clinic but like most people nothing was working,they have deduced that I stress too much ,but there again i'm 23 and my family don't understand it so in their eyes it doesn't exist , but i'm lucky and unlucky at the same time because I used to get the searing pain and sensitivity but thanks to just doing everyday activities and of course physio I got past that stage(except hot days)and it was good for a while,but yes it has got worse again ,even getting the occasional pain and spasming in the other hand now...<br />
The best advice I can give you is don't let it dictate your life, it is very real but as long as you dont do too much with it you can learn to live with it, I was diagnosed with it three years ago now and i'm still waitressing ,I used to write everything now I type it (I'm also a french tutor and always type my own notes)somehow I'm learning to do things slightly different to other people because of it but hey i'm still living life and recently got a job in Canada as a French tutor and leave in 2 months.<br />
Hope this story inspired you,have to stop typing now. smile= a laugh that burst.

I forgot to tell you...I've had it 3 plus years and often I can hadle it pretty well....most important thing for me is to NOT overdo, then it's much more manageable. I have a person near me that has had it for 18 years and has found a way to live life with it. I know two others that are working through it as well....hang in there! Some people are lucky and have what I guess would be called "remission" for lack of knowing what it's called. I hope that you are that lucky.....

I too was told by my pain specialist that he never heard of a 60 year old with it, so it would eventually go away. I have since learned that there was absolutely no basis to his is usually permanent and although that was a scary realization and I cried through the next few weeks working through what I envisioned as the end of my life as I knew it, once I got my mind around it I felt better knowing that I had to make the most of every day because I had no guarantees of better days later. I am soooo sorry to hear you are dealing with such a hard thing so young, but lots of people DO get a a point of living life and maintenance, I call it. It's just a different life, but it's still good. Good luck to you and hope to hear of your improvements on site!! I truly wish you the best!! Good support is a MUST...make sure those around you get educated and understand what you are dealing will help you! : )

Staying positive as much as you can and having hope for the future will help lessen the pain - stressing just escalates it.. In rare cases, if diagnosed early in the first three months and aggressively as well as effectively treated it can be cured. Most do not get the diagnosis or treatment soon enough because by the time the symptoms clearly point to RSD it has advanced to the third stage when it becomes permanent. In the early stages of 1 & 2 there are not enough conclusive signs of RSD and the Dr.'s are baffled as to what it is or how to treat it. It is a difficult disease to diagnose and treat and it is different in everyone who is afflicted. although there are some common symptoms , there are still many variables in each individual. It is great to have support from others who are coping with this disease and share the journey.

I have been told by my neurosurgeon, orthopedic surgeon, pain management and general practitioner that CRPS is permaneant. I have never been told it was temporary. I have been told it will be like a rollercoaster from day to day because everyone is different and how they react to the sympathetic nerve problem will vary from person to person. I have had 5 nerve blocks and none of them helped me, however, several people I have spoke to said it worked for them. I am so sorry that you have developed this so early in life. You can still look forward to the rest of your life, you will have to make some adjustments, however, life is and will be what you make of it. I try to stay positive about mine and it does not always help me. Of course, we are different. My family always tells me it will be okay and itwill get better, I am not as optomistic as they are but realize the day is what you make of it and how bad the pain is that day. I am here if you would like to talk or share. For me, it is always helpful to talk to someone who has the same disease and see different points of views.

Hey, <br />
About 18 months ago I was Diagnosed with CRPS type 1. Before then I had two different breakouts of the condition but no one could tell me what was causing my chronic pain. Since I've been diagnosed I have had the condition flare up about 6 times. Some days are better then others, some days suck like hell. <br />
People tell me that I should live normally and take each day as it comes, I guess I really have no other choice. I'm 17, I should be looking forward to the rest of my life, should be happily planning and dreaming of College and Uni and having a job and career, but who is going to want to employ someone who can be perfectly fine one day and be in chronic pain a few days later?<br />
<br />
Anyway what I was getting to is that no one can tell you how long it will last, or when it could come back. Its different for every person, you just need to hope and keep your head up high.