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)


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Old 01-13-2019, 10:23 PM #11
rsdno rsdno is offline
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Default 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
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Old 02-05-2019, 12:57 AM #12
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Default 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]
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Old 03-15-2019, 10:27 AM #13
CRPSinSC CRPSinSC is offline
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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.
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Old 03-15-2019, 11:50 PM #14
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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.
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Old 03-16-2019, 09:22 PM #15
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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.
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Old 03-22-2019, 12:56 PM #16
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Default 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.
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birchlake (03-22-2019), laxmom (11-20-2019), visioniosiv (10-21-2021)
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