Regional complex pain syndrome

Hello @reedvr2, welcome to Connect. Your pain sounds awful. I'm so sorry you've had repercussions since surgery and have been diagnosed with CRPS. I myself do not have CRPS but am aware that the pain can be excruciating.

While we wait for others to respond, here is a helpful thread sharing good info on CRPS -

CRPS: Anyone Suffering With Complex Regional Pain Syndrome?
https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/
Most recently, @grannyzoo shared success with a Boston Scientific implant to help CRPS pain -
https://connect.mayoclinic.org/comment/1058052/
Is there a course of action your doctors are recommending for pain management?

I don’t know much about your condition, but I sure hope you find something that helps.

@reedvr2
I am sorry to hear about your suffering. I have severe lumbar spinal stenosis, DDD/spondylosis, and sciatica and have been delaying surgery on L2-S1 as long as possible with epidural injections to manage the severe pain that impacts walking, standing, sitting, etc.

Did they properly patch the CSF leak? Have they done MRI/MRN, EMGs, nerve conduction studies, ultrasound, etc. on your back and leg to look at how the surgery impacted or injured your spinal cord, peripheral nerve roots, blood vessels? It sounds like you have injured or pinched nerves/blood vessels. I have pain that radiates down my hips, buttocks, back of legs (especially my right leg) and down to my feet. The purple blue coloring of your leg sounds like an issue with blood flow. Have you had spinal injections to help you manage the pain? Do you take anything for pain (like Gabapentin)? Do you use any lidocaine pain patches (like Salonpas brand)? I had taken Duloxetine which can help some with nerve pain. I also take alpha Lipoic acid and Acetyl l carnitine supplements for nerve pain which has helped me some. Make sure to take care of your mental health as dealing with chronic pain can really impact quality of life.

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.

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.

@reedvr2
Do you see a neurologist now? If not, you should so you can get lower EMG, nerve conduction, and small fiber neuropathy punch biopsy tests to check the health of your peripheral nervous system.

I have been reading about neurogenic orthostatic hypotension, endothelial dysfunction and microvascular dysfunction due to some of my health symptoms and issues. Some nerve/cell damage can affect your arteries/veins and circulation. You may want to see a cardiologist or vein specialist/center to see what the discoloration of your left calf could be from. See some links below. Having COVID or the vaccinations could damage endothelial cells which line the arteries and blood vessels which can cause circulation issues. I just read that doctors stop looking for diagnosis if they do not see a blood clot but that doesn’t mean you do not have a blood circulation/vessel/valve issue.

1.
https://www.cvmus.com/vascular-treatment/leg-discoloration-treatment
2.
https://www.usavascularcenters.com/pad-symptoms/leg-discoloration/

@reedvr2
P.S. Trust your instincts. If something is not right, you know you best. Advocate for yourself and don’t give up until you can get to the bottom of the root cause of your symptoms and options for treatment. You don’t want a problem to get worse over time that could be addressed today. Good luck and put yourself and your health as a top priority over everything else. I need to do the same. May God guide you to get the help you need and deserve❣️

Sorry you are going through this, CRPS is a monster that I wouldn’t wish upon my worst enemy

I had adfc C6/7 18mths ago, I woke from surgery with a tingling pain in my right leg, and my neck arm symptoms were worse than before surgery, my neurosurgeon assured me it was just inflammation and nothing to worry about.
3 months after surgery, the pain was excruciating affecting my entire right side head to toe including my face, I knew something wasn’t right!
I seen multiple drs had multiple scans and tests, came back that the c7 nerve was damaged
12 months ago I was diagnosed with right sided ipsilateral CRPS. Type 2 in upper quadrant and type one in lower.
I have attended physio 3x week and have done for the last 2 years
I have tried multiple different medications, from gaba to Lyrica but neither provided enough relief and both had horrible side effects, so I am on opioids
In January I had an 8 day continuous ketamine infusion, did absolutely nothing for the pain just made my limbs super weak.
Neurologist did bloods and a lumber punch to check for MS which luckily all came back negative.
I have just finished a block of 3 sympathetic lumbar blocks which didn’t work, they actually made my lower back really sore, to the point sitting and standing were a huge effort, last week I had my first stallete gallian block, again nothing for the pain and a lot of aggravation in the area, booked for my second neck block next week but hesitant about continuing with the next 2.

I also struggle to walk, but I am determined I am not going to need an aid, I am both mentally and physically exhausted, starting to loose hope that any dr can treat this.
My problem is I try and push through the pain to keep as much normality in my life as possible but unfortunately my body can’t keep up and I put myself in flare

Hopefully one day soon we both find relief

@dlydailyhope Hi yes I had a nerve conduction study done and it said.S1 Radiculopathy. When I went to the hospital to check for blood clots they called it peripheral vascular disease . I went and seen a cardiothoracic surgeon and said it had to do with my back the purple and redness in my leg.I am going to check out the links on this. Thank you for the information and May God guide you too.

Hi I hope you can find some comfort and peace this is horrible excruciating pain I have tried multiple things and I understand where you say you can't sit or stand or walk cuz I was like this to I push myself everyday to try more and more dinner's days that I just don't have it in me.