Regional complex pain syndrome

Hi yes I have been doing a lot of injections, did a spinal cord stimulator trial but only got to 50% and wanted me to get lower. I am no longer with them doctors. I am with a new pain management and we just did some trigger point injections nerve block and the next step is going to be the spinal stimulator in a different area.

I wish you the best of luck in finding relief through relocating the stimulator. My fingers are crossed for you.

How are you supporting your emotional well-being as you continue to search for effective pain management? Treating the whole package - body and mind - is so very important. Have you any tools to help with anxiety, fear and depression?

@rwinney Hi it has been a real struggle for me still is .I haven't been able to drive not even 10 times since this has happened I've had to depend on significant other and I know it's been very hard for him .I have my doggie he is my emotional support four-legged friend that I love so much .I do the best with I got as I already deal with depression and anxiety ,there has been some really really dark days for me I have tried to do teledoc appointments but they have always got canceled for me to talk to someone .I talk to someone others but they don't understand where I'm coming from or the pain that I am going thru 😭 I have always had pain but never like this and now they say it's chronic pain.There have been times where I wish there was somewhere that I can go to and stay and have all this figured out I have all of that and then some the fear , worthless and then some I 🙏 I don't know what to do sometimes.thank you for your reply. Any suggestions are welcome.

As I know of the CF leak was done right. Had to stay in the hospital a couple extra days .I kept telling them that there was something wrong. The more I try to walk the worse I got it got to the point where I cannot even sit I had to lay on my side. I had to go into the hospital for pain control that was 4 days. I had to have more MRIs CTS done and then started doing injections . I've had to go to the hospital twice to make sure I don't have blood clots in my leg which everything is on my left side from my knee cap down it's purplish and blue.in the middle of that I went to two different surgeons and there's nothing surgically that could be done. I still feel that something is not right. Done a couple more injections got a little bit of relief from them.And tried the spinal cord stimulator trial got little bit of relief from that so we did not move forward. .then they wanted me to have a MRI done of my pelvis I did that .I went to a new pain management doctor and he went over it with me and said there was inflammation in that area he wanted to do trigger point injections done that just had a nerve block done I'm on a pain medication regimen as of now . And he said that he would like to try the stimulator in a different location. And yes this has mentally got to me I try to do my best try to push myself everyday.

Chronic is a scary word. It takes time to process and come to grips with, I understand. I'm happy you have a support dog. That's a wonderful positive, as is having a significant other.

I had a very difficult time with acceptance in my chronic pain journey, too. It wasn't until the Mayo Clinic pain rehab doctor drew a tombstone on the whiteboard with the letters RIP that I realized I had to work on acceptance. Sounds harsh, sorry, but it was a big eye opener to me. As difficult as coping with chronic pain and loss is, it does not mean that we have to be defined by it. Pain or not, life goes on - it's how we respond to the changes.

How do you express your feelings? You're really going through a lot right now. Have you acknowledged your grief and the feelings you have toward your loss with family members or friend? Have you tried writing your thoughts and feelings in a journal? One important tool I use is something called "catch and correct". It has to do with maintaining a positive attitude. Positive outlook improves one's ability to face upsetting emotions that chronic pain can produce. When you experience troubling emotions, stop and evaluate your thoughts. Try to replace negative thoughts with rational positive ones. For example, remind yourself that you have a choice in how you respond to your symptoms. Digging deep to find the things you can do and how you can be helpful or make a difference despite your pain. Shifting mindset and focusing on abilities, not limitations can give power back.

How about your mind and engaging in activities that are mentally stimulating like crossword puzzles, crafts, reading, podcasts, etc? Happy distraction and socialization is wonderfully important to give the brain a break from thinking about chronic pain.

I'm happy you found the Connect community so you can talk with others who have an understanding of what you're going through and how you're feeling. Please know that you are not alone and to allow yourself grace and forgiveness. I encourage you to follow up and reschedule telehealth appointments, don't give up on yourself. I know I threw lot your way but hopefully it was helpful. Hang in there and stay connected, my friend.

When is your next procedure to relocate the stimulator?

I don't know if I commented on your post before but doing random injections, according to Dr Getson, total US authority on CRPS. Injections can cause CRPS, even just having your blood drawn.
These kinds of random injections deep in the body with huge needles can easily cause a spread. Spinal cord stimulators cause lots of scar tissue. Pain drs seem to only do invasive things.

Please ask yourself for each injection where they have yet again offered false hope, if this injection spreads this to my ither leg, or arm, or further up my leg, am I willing to take that chance because the chance it will greatly help is 90-100%.

He says never ever let anyone do surgery saying it will cure your crps. There is no surgical cure for crps.

Please watch the long vids about CRPS by dr Getson and an Indian-American doctor on YouTube. They know and are very clear about the % of help each med can be and what NO to do based on what they gave seen. Experts in this field.

Random shots are so dangerous for us. But if pain guys only do shots and stimulators, that's what you get. Every single one of their patients get that. Regardless of your diagnosis.

These drs putting SCS in teens who have had crps for 3 months is malpractice. SCS is the last thing to try do once done, you can't undo the scar tissue formed.

I try to fo life without regrets. I know things can always get worse. So think aboit that with each mew invasive treatment. If this causes a spread and its now in bith legs, can I live with that. If it spreads to my hand, is the risk worth it because he says 100% it will help? Due diligence. Watch these Drs on youtube who are national specialists.

I admit bias against pain clinics. I won't go into it but even just being required to sign all these contracts before you even meet the guy is so wrong. I also dont do pain meds so I'm not signing iver all control of my life to someone who will only inject or cut when that is the worst thing for crps.

No regrets. Due diligence. Please don't just keep reaching gor the golden cure and end up worse and they have moved on to the next person to inject. And all that cortisone wrecks us more too. Liver. Kidneys.

Ok. Please watch these youtubes. They are 1 to 1.5 hours long. Good for family to watch, frirnds, if willing to see what you really have.
My best. No regrets. In my mind, the best thing I've seen help at the beginning is ketamine. Its expensive, insurance doesn't cover it of course (some have had some luck.)

With all thst said, the one thjng I would totally do, which sounds nuts, is to do the 5 days in a ketamine coma in icu. Its brought remission in many cases. Don't kniw if insurance pays for that which of course few could pay cash for. But that most extreme treatment is the one id most likely do. Except I'm 45 years. Nothing can help me now. Good treatment early on can be curative or at least make things livable.

Think carefully about random injections. False hope kills me a little more each time I'm let down. Id rather have no hope, and more acceptance, than dashed false hopes for years.

For some drs, and I see pain doctors who treat all pain the same this way, when you are a hammar, everything looks like a nail. I know most drs won't deal with pain patients and we get forced to give up all our power to these pain people.

Please jyst research and think 4 times about each "let me try injecting you here." Or lets create more scar tissue by moving the SCS here."

Sotty but no regrets ok. Due diligence. Everyone has access tk these two top specialists. Please watch them. Do your best decisions, follow your gut but do it informed. Thanks. Not sure this helped at all. Was more of a warning maybe. Some drs still sell snake oil. Sorry.

Hi I don't think you have commented before I am reading your post now and I will watch the videos I have been doing research on CRPS I was diagnosed in September after a tlif surgery.

Sorry to hear this how are you now.