[Uncertain]

Hi! I am a newly diagnosed CRPS patient and I am having trouble understanding how to "live with this". I continue to think there is a surgical cure or another injection for the area I felt I injured. The original pain is still there, but the pain has spread throughout my hand, wrist and upper arm. I don't want to accept that this is CRPS. I feel that if the original area was fixed, then the rest of the pain would magically go away. How do you get past this thought process? How do you live with the flare ups? Nothing helps during the prolonged intense pain. Then it goes away for a period of time, fooling me into thinking that I am cured and then hits again. Of course this continued discussion over and over has finally frustrated my pain DR. He is very patient and kind, so to frustrate him, is a big deal. What do I do?
This is a lonely place to be so I am glad to have a place to ask questions, begin the dealing process, and hope to help others when I reach the coping stage.

[daniella]

For me it has and continues to be a process on how to cope with this. I have had RSD for 4.5 years. I try to hold hope that with the right treatment one can get relief and have a full life. Some days that is harder then others
I have 24/7 pain just sometimes it is worse aka horrid flares then others. In my flare ups I just try to cope the best way I can and get through. Everyone is different in what works and does not. I encourage you to see a therapist and psychiatrist. Learning to cope with this and the mental toll it takes is so important. It may not cure the pain but it can help you deal with it better.
Does your pain doctor deal with RSD? You really need to see someone who does. Having an injection or surgery in the rsd area is a big no. There are meds,ketamine,other treatments and seeing a doctor who deals with RSD to get the right treatment can help. Welcome to the boards though I am sorry you are facing this

[birchlake]

Welcome to the forum. This is a good place for information, support, and sometimes to just "vent".

Understanding and living with "chronic pain" is a process. Nobody anticipates how difficult it is until it happens to them. It can be a lifechanger.

But there is a LOT that you can do. Knowledge is power so read as much as you can about CRPS and also on chronic pain. There are many techniques that are out there for you to try and you should. Everyone is unique with CRPS and chronic pain, so there can be a lot of trial and error in finding a management routine that works for you.

Be sure you have the right professionals on your team. This disorder is widely misunderstood, even by MANY doctors. Don't be afraid to ask any doctor or therapist who you are working with how many patients they have worked with that have had CRPS. If the answer is none or not many, keep looking!

Do NOT be afraid to try complementary therapies such as massage, chiropractic, acupuncture, meditation, prayer, yoga, etc. You may be surprised to find that a combination of these, along with some mind-body training and good doctors and therapies, and the right medications, can reduce your pain considerably, or at least your "perception" of the pain.

Below is a link to a very good site from the University of Minnesota. On the bottom of this page is a list of "healing practices A-Z" with much good information inside each of those sub-links. You have nothing to lose. I have successfully integrated a number of them into my daily routine with a high degree of success.

http://www.takingcharge.csh.umn.edu/

Good luck and hang in there; we're all in this together!!

[Uncertain]

Thank you for the information and the support. I will use some of these ideas in the link. I appreciate the information. There are no support groups in our state. I do have a great pain Dr. that not only treats CRPS, but is genuinely interested in helping his patients. I think I am the problem, because I tend to want to fix things right now rather than accept the fact that there is no cure and I have to deal with that.

[stressedout]

I know what you are going through. Like you, I have RSD in my hand all the way up past my elbow. I had a spinal cord stimulator implanted in March and it has really done wonders for me but the fact is, RSD is still there. I go through phases where I just keep thinking this is an injury and it will heal but then I realize this is not going to go away. I just can't seem to grasp the reality that there is no cure. I can't believe this has happened, what is my future? So many uncertainties. Family DOES NOT UNDERSTAND.I just want my life back. This has been a long, painful 2 1/2 yrs and I can't seem to grasp this could be forever..

Right now I am fighting with tendonitis in my other hand, hoping the RSD doesn't spread there. It has already spread to my pointer finger of the good hand because I cut myself 2mos. ago, Compound cream keeps that at bay but for how long. I guess I'm just scrared of the future.

patty

Originally Posted by Uncertain

Hi! I am a newly diagnosed CRPS patient and I am having trouble understanding how to "live with this". I continue to think there is a surgical cure or another injection for the area I felt I injured. The original pain is still there, but the pain has spread throughout my hand, wrist and upper arm. I don't want to accept that this is CRPS. I feel that if the original area was fixed, then the rest of the pain would magically go away. How do you get past this thought process? How do you live with the flare ups? Nothing helps during the prolonged intense pain. Then it goes away for a period of time, fooling me into thinking that I am cured and then hits again. Of course this continued discussion over and over has finally frustrated my pain DR. He is very patient and kind, so to frustrate him, is a big deal. What do I do?
This is a lonely place to be so I am glad to have a place to ask questions, begin the dealing process, and hope to help others when I reach the coping stage.

[elijjennings]

I can completely relate to how you feel. I developed RSD/CRPS after a shoulder surgery in April 2010. It took about five months of horrid pain and pleading for them to cut my arm off before I was diagnosed. In the past fifteen months its spread from my shoulder to my entire left arm, neck, back of my head, and back. I was convinced that it wouldn't spread from my shoulder, since that was the original injury, silly me. Since then I've undergone every avail. treatment, and am going to continue by pursuing the ketamine infusion therapy next.
For me, the most useful piece of advice I received early on in my diagnosis was that my family and I needed to mourn the life that we had once dreamed of. This chronic life long diagnosis was equivalent to a death in the family, the death of our dreams. Although we will never stop fighting and will always hope for a cure, dealing with the grief has helped in dealing with the acceptance.
Also, seeing a therapist is a tremendous help. Although it doesn't provide the same benefit as venting on these forums where people understand your pain, a therapist can help provide you with the tools to cope with the pain.
You are definitely on the right track by just coming here and posting. Ask questions, knowledge is key. Some of the medical field has a great misunderstanding of this disease, its important that you understand all aspects possible, as to not make it worse.
I wish you the best of luck.

[Reddawn600]

Uncertain - most importantly, please know you are so far from alone in how you feel. I was living with the pain which began in my neck in 2000 and had 4 surgeries to correct it as it progressed downward for ten years before finally being properly diagnosed. I can't even count the number of doctors and surgeons I met with, the procedures I endured which worsened my condition and the incorrect diagnoses including being told more then a handful of times that it was all in my head.

I was finally properly diagnosed at the Hospital for Special Surgery in NY in November 2010 and have spent the past 9 months receiving as much Keta ine as possible from a 5 day inpatient treatment there, to outpatient boosters with Dr. Shwartzman for 6 months and now with another Doctor.

I would say it really took me until about 2 months ago to accept my diagnoses, let go of that search for the "one magic missing piece of the puzzle that would cure it" and learned to accept and live with it.

I think it's very much like the mourning process because the way I saw it, I was mourning my past and who I had been and fighting letting go and becoming who I am now. Had I realized I'm not so different and if anything, a lot of changes have been positive, it probably would have been far easier on me and my family.

The most interesting part was around the same time I began to accept the disease, I also begN to go into remission. It's now been almost two months that my average pain level has been 0. That after having been called a severe case by Dr. Shwartzman just 9 months ago and having a pain level of 90 on a scale of 1-10.

Stress really is our greatest enemy and whether the timing of my acceptance and remission were coincidence or not, the sooner you can find a way to begin to accept, the less pain you will feel and the healthier you will become.

If you have not yet read it, I very highly recommend Barby Ingle's books, first RSD In Me would be the most helpful to you right now. Later, ReMission Possible is also an excellent read. Both books are wonderful as they are the first extremely well written, well researched and engaging written by a fellow RSD patient.

I hope some of this helps,
Dawn

[daniella]

Originally Posted by Uncertain

Thank you for the information and the support. I will use some of these ideas in the link. I appreciate the information. There are no support groups in our state. I do have a great pain Dr. that not only treats CRPS, but is genuinely interested in helping his patients. I think I am the problem, because I tend to want to fix things right now rather than accept the fact that there is no cure and I have to deal with that.

I felt the same way as you early in this and of course now I wish I could fix this or someone would fix me. During the first year of this I had a few doctors even say to me you are looking for a doctor to fix you. I thought of course I am who would not. I even remember my neurologist saying you are going to have to learn to live with this. I was like no way, how can I and I was so mad at her.

Then as time passed and along the years you get to a point after seeing so many doctors that you realize you have to manage this and find a treatment to give you pain control. It can get too a better place pain wise where you can have a better quality of life and less pain. I know this girl who had rsd for many years and was in a wheel chair. She did so many treatments and suffered so much. Then finally she found the right treatment for her and she is active now out of the wheel chair,back in school etc. So I guess you never know what can help.
Like others said you are not alone.

[Uncertain]

It is truly comforting to know others have had the same thoughts I am having. Searching for someone to fix me. I am thankful for the links, The suggestion of the Barby Ingle books, the hope, and the stories all of you have shared. I am sorry that you have had to suffer.
I have been having pain for over a year and a half and it has been difficult to continue to fight. I now know what I have, and now I have to let go and find a way to cope. I am thankful to be a part of this group. I am impressed by your strength and determination.