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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Questions Regarding effective Pain Medications

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Old 08-09-2018, 12:08 AM   #1
CRPS
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Default Questions Regarding effective Pain Medications

Hello, my name is Eric, I am new here, so I apologize if I made a new post when there is an existing one regarding this somewhere else. A little about me, I have very painful CRPS in my right foot, ankle and making its way up my leg, and spend on average 21/22 hours a day, in bed with my foot and leg elevated. I also have a herniated L4, L5, and the worst one being my L5S1, of which I recently had a failed microdiscectomy surgery on. Of which they can all be painful, but the L5S1 is pressing on my spinal nerve, and also causing me Sciatica. I have 2 Dr's saying a fusion is up next, and 2 saying don't do it until I absolutely have to. Which is what I'm doing because since I'm now back in bed all day since the Hydromorphone was taken away, what's the point in getting a major spinal fusion, when ill still be lying in bed with this CRPS.

I wanted to see what type of medications have worked for anyone, and are you finding that your meds are being reduced or taken away?

I really feel like The Chronic Pain Patient is the one paying the price for the Governments war on Dr's and scrips. The DEA finally admitted there numbers were WAY off. they had to. how could they be right when opioid scripts are down over 40% since 2015, while opiate deaths continue to climb at an even higher rate since just 2016. So, as it was said all along, 99.99% of opiate deaths came from Heroin and Chinese Fentanyl, flooding thru the southern border. Legislation got Dr's in line in 2015. Enough on that, I could go on forever.

I personally have been run thru the gauntlet the last 30 months. Except for opiates. Nothing helped, and them my PCP was concerned about my mental state me being a chronic pain patients after 2 years of finding absolutely no relief. No meds, no injections, no PT, nothing. So she had me try Hydromorphone, which gave me apiece of my life back. Of which due to all the new 2017 legislation, my PCP is scared to prescribe Pain meds and is phasing it out of her practice. So I am back to square one.

It didn't make my pain go away, but it allowed me out of that 4 walled prison, and spend time with my wife and kids. Even went to a movie for the first time in over 2 years. And took my wife to dinner a few times. I wasn't groggy, or goofy. I was fine. I was ALMOST me again. I have a high tolerance for every medication I take and she only gave low dose. but it worked. I was devastated when she took it away.


So what has worked with anyone hear? What meds are you guy on?


My next big decision is the fact they have decided to trey an SCS, of which will cost me over $6000 just for the device out of pocket. Its the only one my insurance will cover, but my Dr is fighting it stating it wont work for lower extremities as well as there device. But that one will cost $13,000 up front out of pocket. But, my Insurance is insistent on having me try the first one. If we know its not gonna work, why do it? I cant afford it anyway. So its now crossed off the list. The other idea was the Pain Pump (the hockey puck) My out of pocket for that is closer to $800-$1000. Which is doable. And I've read there very effective for some people.


Anyone have the pain pump? Or experience with it??


I thank you in advance for your reply's. And look forward to reading your responses. If you read all of this, thank you for your time!
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Old 08-09-2018, 11:05 AM   #2
PurpleFoot721
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Hi Eric. I'm glad to see that you found this part of the forum. I should have directed you here before but for some reason it slipped my mind. I'm not going to repeat what I already wrote in your other post but wanted to mention that this part of the forum can be rather slow at times. Give it a little time and I am sure others will eventually respond as well.

There aren't too many of us out there that have tried the SCS or pain pumps as those are usually saved more as a last resort. There are a couple of us that have though. As I have said before, the SCS did not work for me but something similar know as a DRG stimulator is working great for me and I know someone else on here that it is working well for as well. If you would like to read more on others experiences with either the SCS or pain pumps, the sub-forum for that is here:
https://www.neurotalk.org/forum118/
This is another general forum not just for people with CRPS so there are a lot of sufferers of other neurological problems on there.

Hopefully others will chime in soon enough to share their experiences with you. Until then, I hope I was of some more help
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Old 08-11-2018, 11:53 AM   #3
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I'm sorry to hear all that you are going through. I h avent used a pain pump...meds did not work for me and the last 3 years were pretty rough for me until I finally got the DRG spinal cord stimulator and it was life changing. I have a post on here about it...but the end result is that I can walk again. Went from 10-15minutes on my feet was my max and that pushed me to level 10 pain to now I can walk 20,000-30,000 steps a day...it's AMAZING. Unfortunately...about 2 weeks before I was supposed to get the DRG for my upper body too...my insurance change their policy and no longer cover it. I don't know what the future holds for that treatment but I know many Drs are working hard to get it covered by insurance because it WORKS for a lot of us when nothing else did. Doesn't help you right now but definitely something to keep an eye on as stuff is always changing. I also use Lidocaine patches...they don't help a LOT but they do help a little in my upper body where I don't get relief from the stimulator.

One thing I want to caution you on...try not to immobilized your CRPS limbs. Not saying you have to walk if you can't but gentle stretching exercises while sitting or laying down just to keep things moving makes a huge difference I've found over the years. I did warm water pool therapy last summer before I got the stimulator and I really feel that helped me from "losing" too much and made my eventual recovery a bit easier. The leas I move, the worse my pain is...so just keep an eye on that.

Heat also is a big help for me. So heat patches, space heaters, warm baths with Epsom salts...all of those things help a little. I also had a home ultrasound heat therapy machine I got off Amazon that helped with flare ups.

Again...I'm sorry for all you are dealing with and I know the other issue probably limit you as well...but as done someone who didn't respond well to many traditional meds and treatment I found that there were a lot of little things that helped my pain a little and made life more tolerable. Hopefully while insurance tries go sort itself out you can find some small things to help give you relief.
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