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Sufferer Ptsd From A Rare Disease Complex Regional Pain Syndrome

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Another warm welcome to the forum! Thank you for sharing your story, which sounds like a horrific ordeal to endure. You seem to have a lot of insight into your condition and triggers and have lined up an impressive care team. That's a solid foundation to build from. Hope you find support and assistance here to help carry you forward on your journey toward healing!
 
Welcome Denny. One of my bf's family members has CRPS. :)


I'm so sorry to hear that you know someone with this awful disease. I'm glad to hear that she's having the Ketamine coma treatment and do hope it's working? Living in fear of the extreme pain returning is eating me alive. I'm not embarrassed to admit that I'm still sacred to death of it returning and once again staying up for days and days w/out any sleep and then crashing for maybe 6 hours and doing it all over again. I just don't think I have it in me to do this all over again although I'm probably MUCH stronger than I'm giving myself credit for.

This week I'm planning on focusing on Cognitive Behavioral Skills as well as Grounding Skills so that I can calm myself down. My head and upper body shake from the constant worry and fear which only makes the situation worse.

I saw a internist today who was hired by the state to determine if I'm still disabled and he was really trying to push me to use my injured arm and hand. I made it clear that pain level today was between 6 and 7 already and that I really didn't feel comfortable pushing myself too hard. He seemed to be OK with my concerns however when he started performing the test to check my reflexes, I was firm that I would not allow him to use the Plexor on my injured arm. He didn't push the issue however I didn't think that the exam went all the well. I also wanted to mention that shortly after he started the exam, I asked him if he was familiar with CRPS and he said something like just a little bit. Once he said that, I did become apprehensive of him examining me period although I was very polite with him throughout the procedures. He did ask me why my head was shaking and I told him that is was related to the disease which is true since I know others who's head and/or other areas shake from the disease. I do have health insurance and see doctors who have always believed I've been diagnosed correctly and treated me for years so again I'm probably just worrying too much.
 
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Dear Denny,

Welcome!!!

I can relate, very deeply, to what you're saying, (I have neuro-degenerative pain).
I want to offer my support, encouragement, love and caring.

My heart is with you, and it would be a gift and honor to walk with you in this stage of your life journey.
I look forward to learning and sharing together what is helpful, and bringing hope and comfort in the midst of pain and fears.
 
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Welcome. I have chronic pain and related to feelings of being stabbed (or having a corkscrew driven into me).

Hi I'm so sorry to hear that you also live with pain. Avoiding activities that are fun and aren't so fun is difficult isn't it? I'm sorry to hear that you and others have to live like this. It breaks my heart when I hear about you and others who have to modify their lives due to pain and other physical and mental issues.

Although it's taken a lot of time, I am now once again enjoying listening to music. I'm still struggling with feeling good or positive feelings. I'm trying but I guess not hard enough.

I'm married and my wife has noticed a HUGE change in my behaviors and personality in mostly negative ways and although I've been trying for years now to get her to join a CRPS and especially PTSD support group for caregivers, so far she refuses to even though I've mentioned that it would be very beneficial for both of us. I realize she may never and that is something I've been struggling with for years now. Everyone is different however I'm the type of person that if it were her that was struggling with these or other issues, I would do everything I could to support her including joining online support groups.
 
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Thanks for your thoughtful response @CRPS . This stuff is really hard for others to understand because so many have no personal experience or reference point. Others can often empathize with the loss of a loved one, or even a serious illness where the effects are more visible. But pain is one of those invisible illnesses where others just don't easily "get it."

I'm wondering if your wife also generally declines social support? Or if she is afraid of trying a support group? Or afraid of ending some denial of what you go through because of another fear of being able to respond? I ask because people in my family get very edgy when they feel pressured to respond in emotional or supportive ways...was always easier to focus on the concrete things like putting food on the table and mopping the floor.

Also, maybe she has no frame of reference for support groups...and maybe combined with some of the above reasons is just resisting. Are there any groups where you could also go along with her, at least initially? I go to AA and it was extremely hard to just go through the door, having no idea what to expect or how others would respond. I have very low expectations of connecting with others or receiving support...so even asking, or even thinking of it, triggers fear. I somehow did it because I was desperate. But with your pain not directly affecting your wife (or at least not in a way she seems to understand) the resistance would be easy. Even if she had a friend who could go along, or you...and maybe the deal to just try a some meetings..FOR YOUR SAKE, just for greater understanding (adding that bit in because some people are turned off by thinking they need any form of support because they are "fine"). And if anything like this was even an option, I'd suggest requesting one month of attendance to try it out. It's easy to sit through a first meeting of everything, when you don't know anyone, and remain detached and disregard everything said or filter it through the systems of denial or resistance.

Not sure if any of that sounds helpful. I'm sorry your wife isn't very supportive in this. You might continue to try checking in with her, but ultimately she has her own process. It would be most important to keep up your own support where you can find it.
 
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