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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
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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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Old 08-20-2018, 11:52 AM   #4
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I had no pain relief with norco or percocet, but when my first doctor moved me to Methadone I finally had some relief. He said it is because it works on the NMDA receptors which are thought to be involved in CRPS. A later doctor I worked with moved me to Buprenorphine which is safer long term and is available in a patch. However it is harder to get a prescription for.
In addition, I take Lamictal. I used to use Gabapentin which was equally effective, but had caused a great deal of weight gain and I was hoping changing would help me lose the weight (it didn't).
The biggest thing that helped was an intense Functional Rehabilitation Program. I won't lie, it wasn't easy, but it worked a lot. It was multi-disciplinary (PT, psychologist, doctors) and helped a great deal with my mobility and state of mind.
I understand all too well being stuck in bed, that happened to me more than once (have it in my foot/ankle/leg). Try some gentle desensitization if you are able, and as mentioned above whatever gentle stretching you can. As we learned in class, even if it is just small movements, it is better than no movements!
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Old 08-20-2018, 02:07 PM   #5
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Please look up low dose naltrexone on the board. It got me out of bed. I was able to walk after taking it and going to warm water PT. It was not a cure, crps has spread, but at least I can walk with a cane. I also did my own desensitizations and mirror work. Look up neuroplastix and Micheal Moskevitz.
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Old 08-22-2018, 10:53 AM   #6
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I wanted to add to this. I found out via pain management yesterday that my body doesn't process certain pain meds appropriately, namely codeine, so they offer no relief. I don't know if other meds work this way but you may want to ask about that and try another alternative. They were able to tell this with a drug screen because no morphine came back in it, just codeine.
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Old 08-28-2018, 12:11 AM   #7
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Another right foot guy checking in.
I have a SCS. Sometimes, it works great. Sometimes, not at all. But when it does? Oh yeah. I like it.
Opiates: my records say I am on the lowest effective dose. I have to use them.
I also use something called Nucynta that greatly helps with the jolts and spikes.

Use a cane. Use a walker. Do not risk a fall or you could become a leg and arm guy too. Bones break when we fall down. Please protect yourself.
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Old 08-29-2018, 11:27 AM   #8
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I myself am on Neurontin (Gabapentin). Also on buprenorphine pain patches (+sublingual buprenorphine for breakthrough pain). My meds have been the very same since 2004.

Neurontin or Lyrica (either) is an anti-epileptic medicine that works on nerve pain, it beats the other meds by far, but you still need them to get rid of the remainder of the pain, I'm afraid, as the Neurontin takes away a lot, but not a portion of it. I'd say my daily pain level is a 2/3. Going to 3/4/5 depending on what I do (walk a lot, well, what for me is "a lot", you know, everything in its context).


No pain pump, or anything else that's invasive for me! Just my decision.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-31-2018, 07:12 PM   #9
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Hi Eric,

I'll chime in as well as I too have CRPS in my right foot! Since 2008, started after a fusion surgery of the front most bone on my big toe. Dang the luck. But you have more going on than I do and I am sorry for that. It's a tough schlog that we have here......

I have gone the gamut of meds (won't list all of them), since my diagnosis, but my cocktail of meds for a number of years now is Gabapentin (1800 mg daily) along with Amitriptyline, which is an old fashioned trycyclic antidepressant that is used more off label for pain than it is for depression. Also some Tramadol for breakthrough pain.

I used to take a considerable amount of Aleve (Naproxen Sodium) but about a year ago I developed a parasitic infection from lake water called Cryptosproidium (again, dang the luck!!) and as my use of NSAIDS may have contributed to my complications with this parasite; I now have an inflammatory bowel disease, I no longer can take any NSAIDS because they are hard on the gut, even the 81 mg low dose aspirin that I was taking.

Keep things moving!! I have a friend who is a Physical Therapist and he taught me what I need to know to do my daily PT session. I have to do it every single day. Or I suffer. Be disciplined on movement.

I have no opinion on the pain pump, but many here will and should chime in. From what I have seen, it works for some but definitely not for all. And there are risks.

Best of luck to you; keep us updated!
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Old 09-18-2018, 05:55 PM   #10
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I have CRPS in my right knee, and it has spread to my right arm. After I was diagnosed, I tried 5 lumbar sympathetic blocks, which didn't help much or for very long. By #5, I wasn't getting any improvement, and started to look up what was the latest for CRPS.

I found the RSDSA & YouTube channel. I watched their conference vids from Dr. Predeep Chopra, Dr. Jay Joshi, Dr. Philip Getson. They confirmed what I already felt was true--opioids seemed to work against my pain. I found out about low-dose naltrexone (LDN), palmitoylethanolamide (PEA), and alpha-lipoic acid (ALA). I also found out about IV ketamine infusions.

I started LDN right away, and it took several months to notice a difference, but it helps the pain so much. I also went on PEA, and began IV ketamine. The IV ketamine has been a lifesaver. I also started ALA (600mg in the morning, on an empty stomach, with one 350mg PEA), and it takes the edge off the worst of the allodynia.

Without IV ketamine, LDN, PEA, and ALA, I would be a crumpled up ball of pain. But I also use things like graded motor imagery (mirror therapy), desensitization, and exercise (within my limits). Eating an anti-inflammatory diet helps. I love swimming.

These are the things that have helped me maintain a semi-normal life. I even hold down a part-time office job. It's been amazing, even though I still have nerve activity/some level of pain 24/7. There's no cure for this, so...I just keep doing what I'm doing, and I am all about continuing my education in all things CRPS.

Good luck to you! I am so sorry you are in so much pain.
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