Other Complex Regional Pain Syndrome and the medications that go with it/the suicide disease

Hooper

Confident
I hit 50 in July and did a complete health check up. All blood work, colonoscopy, calcium score (highly recommend for heart attack risk/insurance doesn't cover but cheap) and prostate exam. Everything was great minus an enlarged prostate where the problem was a lobe of the prostate grew into my urethra preventing the emptying of a third of my bladder. I had a TURP procedure that cured me but had a major mishap that put me in the ER (sent home with clamp on catheter) which redefined my pain scale. Go figure this was Friday the 13th in Dec of 19.

On New Year's Eve I walked off a 2' drop I couldn't see right as the sun had completely gone down a couple of beers into my evening that broke my ankle. It sucked no doubt but was just a broken ankle or so I thought. About the time the bone healed the pain increased dramatically. I remember getting down to 1 pain pill a day which was the baby aspirin of pain killers (50 mg tramadol) only to go back up to 4 a day that did little to help. I requested neurontin for what I thought was post surgical neuropathy and flexeril for a cramping calf. The only other odd issue was my heart rate was highly elevated but only in blips. I'm talking over 140. My resting heart rate went from 55 to 77 and 95 to 110 during home health visits so I went to my doctor for that and was checked out by a cardiologist who deemed I was fine although he did not see me and just read a 24 hour tape of a halter monitor.

So after consulting my orthopedic surgeon, gp and cardiologist I went to a highly recommended neurologist to see what the hell was causing the pain. He went through a series of yes/no questions and wound up at one spot which was CRPS. I was thrilled I wasn't crazy, being a panzy about the pain and my condition had a name. So I get an appointment with a pain specialist in his group who was going to give me a nerve block and by the time it wore off I would be fine or so I thought. I get to the nerve block place and fill out a questionaire. I check every box for types of pain I had except for 2 which I should have checked in hindsight. I then check every box for how it affected my life and created a new box of my own. I took a picture of it laughing thinking there is no way they'll consider any pain medication for me with the opiate crisis and off to see the doctor. He examines me and confirms the CRPS diagnosis even taking out his phone for a check this out picture of how my foot changed colors in 30 seconds when not elevated. He proceeds to hand me a pain management contract that is outright draconian. I requested a recommendation for pot instead after telling him a joint I smoked the previous friday worked very well. He declined saying marijuana was not clinically proven to help my condition but opiates were and that I needed to reroute my neural pathways to get off the loop or groundhog day (if you saw the movie) I was on.

All in all I was put on 2 drugs I am not happy with. A synthetic morphine which is the same drug in Suboxone given to addicts except they are given 4-12 mg a day whereas I get .15mg or 150 mcg's every 12 hours for a total of .3 mg a day. After talking to a friend on Suboxone who gave me this info my concerns lessened but are still there. Then I was put on Cymbalta not for depression but again rewiring my neural pathways. Other than that I am getting a boat load of physical therapy.

My concern is rewiring my neural pathways will rewire my brain in the sense I could lose my body's ability to make it's natural opiate and the Cymbalta could mess up my serotonin levels. I really do not have a choice though. This disease could be for life. I'm lucky I caught it early and got treatment. Many people who have it are viewed as drug seekers. They go years with no treatment and then it's too late for the majority of them. I guess I shouldn't complain. The Belbuca (pain medication) is working to give me a life and restores my ability to sleep more than 3 hours a night. Then there's the side effects of Cymbalta. My sex drive is going down which is more in line with my wife's which is a plus. Regardless my concerns are there. Has anyone dealt with chronic pain and the medications that go with it? I'm just past week 1 or roughly 10 days in. Appreciate any comments.
 

scout86

MyPTSD Pro
I've been wondering how you were doing. I'm really sorry the answer isn't actually "Awesome!"

This isn't something I know much about, so I don't have much to offer. But, one of the things my T messes with is "pain patients". Based on things he's told me, I'd suggest being open to things like biofeedback. He says some of this kind of things relates to the brain continually receiving pain signals when there's no reason for the signals to be sent. Unfortunately, he also says insurance companies sometimes frown on stuff like that, apparently they'd rather medicate people.

I hope you can get this fixed!
 

Hooper

Confident
I hope I get it fixed as well. The doctor thinks my prognosis is good although he won't guarantee anything. I'm willing to try most anything. The pain medication as much as I resisted it works extremely well for such a small dose. I have no choice but to play it one day at a time.
 

TruthSeeker

MyPTSD Pro
I hit 50 in July and did a complete health check up. All blood work, colonoscopy, calcium score (highly recommend for heart attack risk/insurance doesn't cover but cheap) and prostate exam. Everything was great minus an enlarged prostate where the problem was a lobe of the prostate grew into my urethra preventing the emptying of a third of my bladder. I had a TURP procedure that cured me but had a major mishap that put me in the ER (sent home with clamp on catheter) which redefined my pain scale. Go figure this was Friday the 13th in Dec of 19.

On New Year's Eve I walked off a 2' drop I couldn't see right as the sun had completely gone down a couple of beers into my evening that broke my ankle. It sucked no doubt but was just a broken ankle or so I thought. About the time the bone healed the pain increased dramatically. I remember getting down to 1 pain pill a day which was the baby aspirin of pain killers (50 mg tramadol) only to go back up to 4 a day that did little to help. I requested neurontin for what I thought was post surgical neuropathy and flexeril for a cramping calf. The only other odd issue was my heart rate was highly elevated but only in blips. I'm talking over 140. My resting heart rate went from 55 to 77 and 95 to 110 during home health visits so I went to my doctor for that and was checked out by a cardiologist who deemed I was fine although he did not see me and just read a 24 hour tape of a halter monitor.

So after consulting my orthopedic surgeon, gp and cardiologist I went to a highly recommended neurologist to see what the hell was causing the pain. He went through a series of yes/no questions and wound up at one spot which was CRPS. I was thrilled I wasn't crazy, being a panzy about the pain and my condition had a name. So I get an appointment with a pain specialist in his group who was going to give me a nerve block and by the time it wore off I would be fine or so I thought. I get to the nerve block place and fill out a questionaire. I check every box for types of pain I had except for 2 which I should have checked in hindsight. I then check every box for how it affected my life and created a new box of my own. I took a picture of it laughing thinking there is no way they'll consider any pain medication for me with the opiate crisis and off to see the doctor. He examines me and confirms the CRPS diagnosis even taking out his phone for a check this out picture of how my foot changed colors in 30 seconds when not elevated. He proceeds to hand me a pain management contract that is outright draconian. I requested a recommendation for pot instead after telling him a joint I smoked the previous friday worked very well. He declined saying marijuana was not clinically proven to help my condition but opiates were and that I needed to reroute my neural pathways to get off the loop or groundhog day (if you saw the movie) I was on.

All in all I was put on 2 drugs I am not happy with. A synthetic morphine which is the same drug in Suboxone given to addicts except they are given 4-12 mg a day whereas I get .15mg or 150 mcg's every 12 hours for a total of .3 mg a day. After talking to a friend on Suboxone who gave me this info my concerns lessened but are still there. Then I was put on Cymbalta not for depression but again rewiring my neural pathways. Other than that I am getting a boat load of physical therapy.

My concern is rewiring my neural pathways will rewire my brain in the sense I could lose my body's ability to make it's natural opiate and the Cymbalta could mess up my serotonin levels. I really do not have a choice though. This disease could be for life. I'm lucky I caught it early and got treatment. Many people who have it are viewed as drug seekers. They go years with no treatment and then it's too late for the majority of them. I guess I shouldn't complain. The Belbuca (pain medication) is working to give me a life and restores my ability to sleep more than 3 hours a night. Then there's the side effects of Cymbalta. My sex drive is going down which is more in line with my wife's which is a plus. Regardless my concerns are there. Has anyone dealt with chronic pain and the medications that go with it? I'm just past week 1 or roughly 10 days in. Appreciate any comments.

Sometimes self-hypnosis can help reduce pain. When I was younger....I had the most awful menstrual cramps that would put me to bed all day. With practice doing self-hypnosis....I was able to aleviate 100% menstrual pain in like 10 min .....and other I have known have done visual exercises to "turn down" their pain....thinking like a dial. I use that method to "turn down" my tinitis....too. Consider reducing your pain meds to 1/2. and doing some head work...

Similarly, my doc gave me 180 low dose benzos for anxiety because I wouldn't take head meds daily....I already take head meds...adding other's to that makes me run sooooo slow...and keeps me dissociative. So, only in a real pinch, I'll use them. I use non traditional methods to help w anxiety....and focus on getting 7-8 hrs of sleep. That's really been key for pain for me.
 

whiteraven

MyPTSD Pro
I have chronic pain - fibromyalgia, costochondritis, knee injury, degenerative disc disease, arthritis - and am generally not helped by meds. I use a lot of other stuff: hot and cold packs, TENS unit, mindfulness for pain. I can't get anyone here to prescribe the only meds that have ever worked, so I have tried a lot of others and have decided I'm just going to have to manage the pain some other way. I think I am definitely more depressed and suicidal when the pain is out of control - I am very sorry you are dealing with this and hope you are able to get some relief soon.

I was having so much pain at night that I couldn't sleep - now I take something to help me sleep that also helps the pain and use mindfulness to help me fall asleep. I guess you have to weigh the benefits and risks when taking meds. I'm 58 and finally decided that I wasn't functioning well enough to justify avoiding meds - if I can't function now, it's likely not going to get better.
 
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