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!

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

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.

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!

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.

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.

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.

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.

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!

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.:(

Ive had RSD since 1968 we are all different
 

We all got our RSD different ways in over 50 years for me only opiates worked but now with Politicians prescribing instead of the Doctors it is like the Medicinal Dark Ages ,I am so glad for anything that helps anyone

Medicinal Dark Ages in USA
 

We all got our RSD different ways in over 50 years for me only opiates worked but now with Politicians prescribing instead of the Doctors it is like the Medicinal Dark Ages ,I am so glad for anything that helps anyone ,unfortunately Anesthesiologists made less than most other Doctors and people would take the Stellate Ganglion Nerve Blocks ,Epidurals to get ridiculously large Opiate prescriptions and now we good patients who have never done anything wrong must pay unless you are rich there are still Doctors if you can afford them . Im not saying that Nerve Blocks or SCS or Fentanyl Pumps dont help but after over 50 years with RSD from being shot 3 times and blown up once as an RN from the 70s until the end of the Millenium etc ,different things help different people as a RN I have known too many who gave up and took the worst way out and I mourn them and am lucky to get any pain help ,I'm not saying my pain is worse yesterdays pain doesnt matter only the pain you and I feel now Thank You rsdno[/QUOTE]

Dear CRPS: The very first thing I thought about when I read your post is how much I suffered by sticking with a pain management doctor who was not doing anything to control my pain. I went into pain management in 2012, and at the time, he asked me to stick with him, because it takes a while to get a protocol of pain management that works.....so I did.
As issues mounted, one on top of the other, over the years (CRPS spread and other issues, such as complete loss of all cartilage in both knees and hips), this doctor did not change my meds, and I got suicidal because I was living in so much uncontrolled pain. Every time I went to see him, my blood pressure was off the charts, and I felt extreme anxiety, because I felt like I needed to convey to him how it was to live, day by day, in so much pain, and garner some help from him. He wouldn't budge or change anything, and I got very close to ending my life...it became a constant thought process.....and battle within me. I didn't want to leave this planet, but I couldn't tolerate what I was living with, either.

I got to the point with him that I was screaming at him when I went in, and finally, he said these words to me "the level of care you need exceeds my ability." What he meant was he didn't have equipment in his office, he only had pills to prescribe, and he wouldn't increase or change me to anything that would be effective.

I called my insurance company (strangely enough) as this doctor was going to refer me to a large hospital with a pain dept. My insurance company denied the referral. I gasped and sobbed my way through several agents at the insurance company (as I spoke to one, they transferred me higher and higher up their protocol list). It was such a relief to get it out there...and I refused to "see a therapist" to discuss my suicidal thoughts, because there was no conversation that was going to change what I was living through....it wasn't about talking....it was about being in severe, unrelenting and extreme pain, and not getting relief, and not being able to stand it, minute to minute, hour to hour, day after day.

My insurance agents asked me to try a different pain care doctor, and promised that if this didn't work out, they would help me get the care I needed to change my situation. I had no idea I was in such a state, because I thought I was doing all I could, and trusted the doctor I had to make the calls.....BAD decision. After the change, I still want to refer my prior doctor to the authorities over him for what he did to me and put me through.....

I went to the new pain mgt. doc and he prescribed adequate pain medication (doesn't matter what.....what I take versus what another takes isn't the point....having a doctor who listens and works with you to get your pain under control is the point). I remember taking the first dose....maybe second......What I felt was peace......PEACE.......At that moment, I realized that just under the surface was a type of hysteria in me, brought on by this unrelenting and life disturbing pain I was in. We are still tweaking my medications, but my life has literally changed due to getting proper pain control, and having someone working with me to ensure I have that.

Also, my new pain mgt. doctor is an anaesthesiologist and he has done a procedure on me that I wonder if you might not want to discuss with your doctors....it's called Radio Frequency Ablation.....he burned away 4 nerves on my left side, which took away the pain going down my left leg.....took it away!!!! From what I read in your post, this seems like it could help you???? I recommend getting a pain mgt. doctor in your area who has skills and equipment in his office....not just pills.....THAT has made all the difference in my life and care.....My particular pain mgt. doc is an anaesthesiologist, a lawyer, a shrink and an MD.....super skills....all geared towards helping patients like me....it's amazing how much my life has changed since I changed to a doctor who worked with me to ensure I have pain control......I am alive again and slowly but surely planning my days and weeks and have a longer vision....I trust being alive again.

I know many of us pain patients worry about doctor shopping....we've all heard the stories....which is precisely why I refused to get that label on me.....but I went so far overboard the other way that I let a doctor mistreat me.....and he did....and I almost took drastic measures to get away from unrelenting pain....I'm not sure how I let it happen, but I hope others will listen to my story, and if you are not getting adequate pain care, consider whether it is the doctor, and do what you need to do to fix the problem, because it may not be you.

The most important thing is that if one thing isn't working to know that there are multiple other things to try. And that often a multidisciplinary approach is the best way.

I take depakote and gabapentin daily and they seem to help with the pain, especially gabapentin. For breakthrough pain I get a little relief with tramadol and use tylenol 3 to sleep. Tramadol works best with a little acetaminophen but you can't take that with the tylenol.

Nothing else has ever really worked for me but methadone did suppress pain the day after I took it!

The best pain killer for me is a good night's sleep but this sometimes can be tough.

Managing Pain with CRPS
 

Hi, my name is Peter and I've had CRPS for 6 years in my left foot and leg. It took me 4 years to figure out that I had CRPS, so I ended up going to pain specialists who just prescribed opioids or whatever to try and keep my pain levels down.

Physical Therapy
I've discovered that for me, using the least amount of pain meds that I can get by with while working at PT to fully use all the small muscles in my foot and leg is what helps the most. Aqua therapy has been the very best thing for me. A one hour walk in the pool keeps my pain down for a few days.

Nurture Yourself
I have a small heating blanket from Amazon (Mind & Body Electric Spa Wrap) that I use to wrap around my foot/leg when I'm having a bad day. I get a massage with focus on my foot once a week. I carry around a seat pad so that I don't have to sit on a hard chair when I hang out in coffee shops. I'm in the hot tub most nights before going to bed.

Acceptance
It's taken me a long time to accept what I can and cannot do. I'm actively working at "getting better" while also learning to be ok with walking slowly. I know that many people have bigger problems than I do so I try to be thankful that I didn't do anything drastic during the high pain years that I went thru, so I appreciate the time with my grandkids etc.

Brain Games
I met a guy about 2 years into my CRPS that told me I just needed to learn to think of something besides my pain. That was almost impossible at that point for me, however, over the years I've learned that if I can find ways to stop focusing on my pain so much, it really helps. When I play piano I don't really notice my foot at all. I've also experimented with listening to some positive affirmations I recorded with some relaxing music in the background. I started jogging on astro turf while listening to "My legs are getting stronger and stronger... supporting you evenly, effortlessly. Everything is all... OK... My feet are reaching out and caressing the ground... gently... evenly.. it's SAFE.. " The idea here is to try and re-train my brain so that it can back off from thinking my leg should be in pain. I've had good results with this so far and am now able to jog on hard surfaces (that's super-slow jogging)

Mirror Therapy
I started with the bathroom mirror that I took off the wall and when my wife complained I upgraded to a $15 mirror from Amazon. I start off by keeping my CRPS foot still (behind the mirror) while making tiny movements with my good foot. My brain is able to see my CRPS foot move without the usual pain sensations. I try to do this once a day for about 15 minutes.

Devices
I used a larger TENS unit that my insurance company paid for to deal with break thru pain in my first few years, however I found a smaller unit on Amazon (about $30) - Pain relief machine electric pulse impulse muscle massage stimulator - that fits right in my pocket. I run the leads down inside my pants and put the pads on opposite sides of my ankle.

Food and eating habits
I've lost 35 pounds mostly by watching my diet and tracking my weight. With less weight to carry around I'm healthier and it's easier for me to exercise, etc. I'm currently on a "No coffee" and gluten-free diet. It's hard to say if this really makes a difference but it's an easy thing that you can try for 90 days to see if it helps you.

Pain Medication
I was on opiods for the 1st 18 months. In hindsight I should have gotten off them much sooner.. perhaps at 4 or 6 months max. My pain levels actually went down after I got off Oxycontin. I've had good results from Cymbalta, Gabapentin, Lyrica for nerve pain. I've used Nucynta, and Tramadol for break thru pain. I'm currently taking Pamelor which seems to be helping.

Placebo Effect
In scientific studies it's been shown that you can get up to 32% improvement just by the placebo effect. The nice doctor says to take this pill (which is just a sugar pill) and if you believe that it's going to help you, it does - at least a little bit. I've found that by trying a new medication or supplement I can usually get some sense of improvement for awhile. This is one example of the crazy brain and body effect with CRPS.

Hope
Elvis said that the secret to life is "Someone to love, Something to do, and something to hope for." I'm at my best when I'm eagerly hoping for and expecting that I can continue to get better. I'm a big optimist and I've slowly made progress over the 6 years of dealing with CRPS. This is despite having numerous Dr's and specialists tell me that I'm not likely to improve any further. The other side of this are those flare-up days when it feels like I'm getting worse. I think the secret is to look back at where you were a year or two ago so that you can see the improvements you've been able to achieve.

Chipping Away at Chronic Pain
For the first 4 or 5 years of dealing with CRPS I was looking for a magic solution. I wanted a pill or a device that would "cure" me completely. I've found that anything I can do that gives me even a tiny little boost in the direction of feeling better is helpful. (Take a deep breath.. and let it out... ) If you're able to combine enough of these tiny nudges in the right direction, you'll be able to keep your pain down below the threshold where it takes over your life.

I hope that you've found these ideas helpful to you in some small way. I'm excited to have found this forum and will do my best to respond to any comments or questions that you may have.