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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hey everyone~
I just came across this forum, so I'm new to all of this. I started having sympathetic lumbar blocks 6 weeks ago. I've had 4 so far, and getting ready for my 5th one. Honestly, I'm not sure I want to continue. I'm having these done due to a severe knee injury and osteonecrosis and a couple doctors suspected RSD. Though I'm now being told that they're almost 100% certain that I do not have RSD. I would be so thankful if I don't as I know that it can be debilitating. I feel for those of you who are suffering from it. My heart and prayers go out to y'all.
Here's my question/concern. After my first 2 blocks, I had no changes at all. After the 3rd one, some warmth was present in my leg and the doctor said it was because I was finally getting blood flow after a year of very little to none. So during the 4th block, he decided to do 2 places. Big mistake!!! I have been having nothing but problems from this. On top of the excruciating pain I get after each block, yes, I want to crawl out of my skin it gets so bad. There's not a pain chart to even compete with how high my number would be if having to give them a number on a scale. Now I also have hip pain, it almost feels like they
hit my bone somehow, I'm also having weird pain when I try to lift my leg coming from the hip area and it's also now in the surrounding areas of my lower back, thigh, buttocks, etc. I cannot sit back, cannot stand having anything touch my back (no pillows, ice, back of the sofa, chairs, car seat, etc., even having clothes on that area, if they put pressure, are causing me a lot of pain and discomfort), I even have problems being in my wheelchair due to this. I have NEVER experienced anything like this before. Not only am I miserable due to the excess pain, I'm worried about this. I tried getting an appointment with my pm doctor before my next block, but he's not going to be there. I'm not sure what I should do. I'm thinking about going to see my PCP, but not sure if he'll be able to do anything for me. Has anyone else ever experienced anything similar? I've read where others have experienced worse pain after the block, so I know I'm not alone in that area. Between these issues and the fact that not only am I getting zero pain relief, but the pain gets worse after, I'm concerned.
I was fine just taking pain medicine, so I don't know why they felt the need to add in blocks. I can say this, I REFUSE to try any other procedures. This was enough to make me realize why I didn't want to do the blocks to begin with.
Anyway, I want to thank y'all for any help in advance. I appreciate everything. I also want to wish everyone the best of luck with everything. I know it's not easy, but try to keep your chins up and stay strong. Those of us who suffer from CP know what we are all going through. And sometimes it's nice to be able to talk to others who know how you feel, not those who say they do when they have no idea. Thanks again!!
Not sure why you would continue with the blocks if they are only causing you more pain. Remember you are in control of getting the block
or not, so if you don't want it, then cancel it. I have had several blocks and have not had any of the symptoms that you have mentioned. If I were were you I would not have another block until you can see or talk to your PM doc. Good luck and let us know what happens.
The only reason I decided tI continue trying the blocks is to open the blood supply. Due to the progression of my osteonecrosis, I wanted to try something that could help slow that down. My femur bone is dead in multiple areas due to the trauma from when I fell and messed my knee up. I never realizes it was as bad as it was, that is until I got a call from my PCP and I heard the concern on his voice. I knew I was hurt pretty bad. We all know our bodies well enough to know when something is not right. It's to bad the Ortho did NOT listen. But that's another issue.
I knew that there was a possibility the blocks wouldn't help the pain, but I also knew going into them I was more concerned about the blood flow. My pm doctor has been very upfront with me about everything and he takes the time with me to answer every question, etc. Which he should, he works for me. He's not the first pm doctor I went to, but after 1 appointment with the others I saw, I couldn't get away from them fast enough. As of now, the blood is getting through more than it has in a year. So I weigh that against the other issues. I don't want my bones to die even more, but I also hate going through the excruciating pain they cause, not to mention the other issues I'm now having since my double blocks last week. I'm scheduled for my next one tomorrow. I called my pm doctors office and he's not in today. So I decided I'd show up for the block...BUT he's going to be answering numerous questions before they bring me to the O.R where they do them. If I'm not satisfied, I'm
NOT staying.
As far as the RSD goes. They were never positive I had it to begin with. I was told if it was truly RSD, the blocks would prove it one way or another. Unfortunately, RSD and osteonecrosis mimic some of the same symptoms. And since they know how severe my necrosis is, it made it harder to determine if it was true RSD. Now they're saying that it's the necrosis that caused all of the complications, on top of the extensive knee injuries. My pm doctor is saying that he's pretty sure that it's all bone that's causing my problems. So I'm not really sure. I continue to ask questions, but when you're talking to people who have never experienced anything like this, it makes it harder. So I'm very thankful that I found these threads. Hearing from those who actually experience this makes it easier since y'all actually know what it's like. I'm just very sorry that others have to go through this crap. It's not easy and it takes a toll on your life. I've been on crutches for over a year now and have to be in a wheelchair more often than not. I just wish someone would fix the damage. Maybe then I'd some relief and some is better than none. Sadly, the doctors around me aren't very competent and because of the bigger picture of how my injuries happened, they don't want to get involved.
Anyway, thank you for your help. I greatly appreciate it. I wish everyone nothing but the best. I'll keep y'all posted.

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