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 10-03-2019, 08:37 PM #1
Jack21 Jack21 is offline
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Default Looking For Some Advice - Chronic Pain

Hi, I'm new here, but I decided to post to ask for advice. I really am at my wit's end.

I was diagnosed with RSD/ CRPS more than twenty years ago.The condition went un-diagnosed / misdiagnosed for almost three years before they figured it out. By the time treatment was started, I was essentially an invalid.

Since then, they've tried all sorts of treatments. Neurontin, mexiletine, amitriptyline, Lyrica, NSAIDS, Naproxen, Toxin injections, Lidocaine patches, compound topical creams,steroids, and more.

I've done biofeedback, meditation, very light supervised stretching and yoga, vegetarian and vegan diets, keto, 14 hour fasting, IR sauna, hydrotherapy, craniosacral massage, chiropractic multiple times, even prayer circles and visits to two faith healers (yes, even that),Curcumin, Ginger, other herbal medications...

Nothing has helped a great deal. Some things have helped a little, but nothing helps much. A number of these treatments have made things worse. All this time I have maintained a light exercise program that was suggested by the doctors, and I've followed it carefully to prevent from putting on massive weight gains or losing the strength I have left. But literally any exertion seems to up my pain levels now, and I don't have good enough pain meds to cope any longer.

Originally, I was put on morphine without any issues and no drug testing. Along the way I was prescribed Percocet, Tylenol 3, and a couple others that did not do much for the pain. Then, with no warning, the doctor at the time moved me to Fentanyl patches and Hydrocodone, again, no drug testing. Then, with no warning, I was moved to Nucynta and Lyrica, now they wanted drug testing, most of which, I had to pay for as my insurance company at the time deemed it "not medically necessary"...

Then a year ago, abruptly and after all perfectly clean drug tests, I was moved to Tramadol without any input in the matter...

Tramadol is maybe 35-40% as effective for me as morphine was. Fentanyl was probably a little better than Nucynta, maybe about 90% of what morphine did, but either way I was able to maintain some sort of life.

I've complained to my doctor in the past that I can barely function on this level of pain relief. I do not have have breakthrough pain, I am always in pain. I can barely walk enough to make it to an electric cart at the grocery store, and if there is no handicapped space open within ten minutes or so, I've had to just forget about getting groceries and drive home without for the first time ever. I get very stiff after being in the car long.

Needless to say, I have NO social life. I have no more friends, I don't even go to church. I only leave the house when I absolutely need something, because I don't know if can deal with the pain long enough to get back home

I've explained all this, carefully to the doctor. The doctor has refused to move me to a more effective pain med than Tramadol. He just cites the government and the insurance companies and says there is nothing he can do...

On my last visit, he told me, "Oh, your blood pressure is OK, but I'd like to see it lower. And you've gained a couple of pounds, you should exercise more. And, you sound depressed, I'd like to see you get out of the house more..."

You can imagine my reaction. But I only repeated what I told him before - I cannot do more exercise or leave the house more than what I'm doing, because my pain meds have been reduced to the point they don't work. If I can get pain meds that will actually work again, I would LOVE to be more active.

His reply was - "Well, your blood pressure and weight are OK. It's not important."

I don't want to try and find yet another doctor, there are no others near me who my insurance deals with that deal with RSD and pain meds at all, I've checked. I don't even know how I'd get to a more distant doctor, or how I'd handle all the costs involved with trying to get a new pain management plan started. No way insurance covers all of it, or even likely most. And even if I do that - how long before they move me to weaker pain meds again? It's happened over and over, even with all CLEAN drug tests. But I honestly don't know what else to do?

I feel like a hermit living in constant pain. I've even started to worry about one day not making it to the kitchen from my bedroom. Yesterday, I almost fell through a window because the pain was so bad while walking. I know this forced inactivity is hurting my health, and I'm starting to wonder if prolonged isolation is affecting my mental state?

Any thoughts or ideas at all would be appreciated. Sorry for the long read.
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Old 10-07-2019, 09:34 AM #2
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I am so sorry you're dealing with this incompetent doctor. How many visits has it been since they switched you? I found my PM is reluctant to change things until it's been a few months (which sucks). I know you don't want to find a new doctor but that really may be your best bet unfortunately. Some doctors are running scared from the DEA. I have found that focusing on my reduced function and quality of life is more effective than asking for a particular medication for what it's worth.

Also OTC things like lidocaine patches when combined with meds helps somewhat. It might be worth a try while you wait for a better solution. Lyrica helps me, but not enough on its own.

Where are you located? Maybe someone here has a suggestion of a doctor. If not check out the group "CRPS" on facebook as they're full of awesome ideas too.
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Old 10-21-2019, 01:51 PM #3
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Hi Jack,

Not sure if you're still on here, but man, you've been through the ringer and I hope you find relief soon. You've tried so many things, even being open to the "weirder" stuff! So frustrating.

Having that reduced pain window is so important for sanity and hope, and the medical/insurance/pharmacy merry go round flat out sucks. I was fortunate enough to realize I was dealing with RSD early on, and super grateful it's been 6 years since then without symptoms.

I found that most forms of meditation didn't really help much - at best there was just a brief distraction from the pain. Which don't get me wrong any distraction is nothing to complain about. But since RSD is being generated on a self-reinforcing loop by the nervous system, to be effective the meditation needs to be specifically designed not only to bring attention away from the pain, but to create and constantly reinforce new neural pathways where that pain does not exist.

I couldn't walk when I had RSD, so for me, imagination and robust visualization of fully immersive environments where I'm doing joyful physical activities worked really well. Like being 7 years old, running down the beach or through a beautiful meadow without a care in the world. Or imagining setting the triple jump record back in high school. Obviously way easier said than done with RSD level pain, but totally possible, and it did get easier with repetition.

Also, a couple times a week did not suffice. With RSD, I figured since every waking moment had some form of physical, emotional, or mental pain as context, it would take a LOT of repetition to rewire those pain pathways. So I was doing some form of visualization almost every hour on the hour, every night before sleep, and every morning first thing waking up.

And being alone sucks. If you live anywhere on the East Coast I'd be happy to swing through for a visit sometime.

-vision
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Old 10-22-2019, 02:35 AM #4
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I am so sorry you ate going through this.

Unfortunately...in my experience...if your doctor is lot listening to you and is not providing you with relief...there is nothing you can do to change them or make them change their mind. This doesn't sound like the right doctor for you. And unfortunately with new changes in the laws...many doctors are scared to provide their patients with proper pain relief meds. One tactic...if you haven't tried it with this doctor...is to talk about your goals vs just the pain. Like...I was to be able to exercise 30 minutes a day but I cant because XYZ, doctor can you help me achieve this goal? Now...their solution might not be what you want to hear but it can change the conversation to a solution seeking conversation and dialogue instead of dr talking at you and labeling you as drug seeking or something like that (not saying that's happening necessarily but creating that dialogue can be really helpful).

Pain meds have never worked for my CRPS/RSD. I have been forced to try different methods of relief. Each one provided a little relief and those combined made life tolerable. Things that helped me: hot baths with Epsom salts, lidocaine patches, heat patches, heated blankets, ultrasound heat therapy, TENS unit, and tDCS. I had a series of easy at home exercises (more like stretches) that I could do. Water therapy in a heated pool was also good...once i knew the exercises i could do on my own.

In 2017...I got a DRG spinal cord stimulator for my lower left leg (the worst area for my RSD). Prior to that...I could only be standing 5-10minutes max before i was at a level 10 in pain. I literally went in to the office in a wheelchair and walked out...and I've been walking ever since. Life changing. Pain isnt gone completely but reduced 80% in my lower left leg. I still have RSD in most of the rest of my body with a baseline of 8 pain level...but I could WALK and regaining that level of function has been amazing. Just today I got the DRG for my hands...and relief is the same as it was in my leg.

Not saying DRG is the answer for everyone...I would not ever consider the traditional spinal cord stimulator. But after doing my research on DRG stimulator I decided it was worth the risk for such a big pay off. And for me...it paid off when nothing else gave me significant relief. I'm not pain free and there are still many other areas of my body affected by RSD...but this type of relief even just in a few small areas has been amazing.

There are always new treatments coming out...I hope that you are able to find one that works for you and that you can get a doctor that is supportive of trying new things to help you.
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Old 10-22-2019, 09:01 AM #5
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Quote:
Originally Posted by Jack21 View Post
Hi, I'm new here, but I decided to post to ask for advice. I really am at my wit's end.

I was diagnosed with RSD/ CRPS more than twenty years ago.The condition went un-diagnosed / misdiagnosed for almost three years before they figured it out. By the time treatment was started, I was essentially an invalid.

Since then, they've tried all sorts of treatments. Neurontin, mexiletine, amitriptyline, Lyrica, NSAIDS, Naproxen, Toxin injections, Lidocaine patches, compound topical creams,steroids, and more.

I've done biofeedback, meditation, very light supervised stretching and yoga, vegetarian and vegan diets, keto, 14 hour fasting, IR sauna, hydrotherapy, craniosacral massage, chiropractic multiple times, even prayer circles and visits to two faith healers (yes, even that),Curcumin, Ginger, other herbal medications...

Nothing has helped a great deal. Some things have helped a little, but nothing helps much. A number of these treatments have made things worse. All this time I have maintained a light exercise program that was suggested by the doctors, and I've followed it carefully to prevent from putting on massive weight gains or losing the strength I have left. But literally any exertion seems to up my pain levels now, and I don't have good enough pain meds to cope any longer.

Originally, I was put on morphine without any issues and no drug testing. Along the way I was prescribed Percocet, Tylenol 3, and a couple others that did not do much for the pain. Then, with no warning, the doctor at the time moved me to Fentanyl patches and Hydrocodone, again, no drug testing. Then, with no warning, I was moved to Nucynta and Lyrica, now they wanted drug testing, most of which, I had to pay for as my insurance company at the time deemed it "not medically necessary"...

Then a year ago, abruptly and after all perfectly clean drug tests, I was moved to Tramadol without any input in the matter...

Tramadol is maybe 35-40% as effective for me as morphine was. Fentanyl was probably a little better than Nucynta, maybe about 90% of what morphine did, but either way I was able to maintain some sort of life.

I've complained to my doctor in the past that I can barely function on this level of pain relief. I do not have have breakthrough pain, I am always in pain. I can barely walk enough to make it to an electric cart at the grocery store, and if there is no handicapped space open within ten minutes or so, I've had to just forget about getting groceries and drive home without for the first time ever. I get very stiff after being in the car long.

Needless to say, I have NO social life. I have no more friends, I don't even go to church. I only leave the house when I absolutely need something, because I don't know if can deal with the pain long enough to get back home

I've explained all this, carefully to the doctor. The doctor has refused to move me to a more effective pain med than Tramadol. He just cites the government and the insurance companies and says there is nothing he can do...

On my last visit, he told me, "Oh, your blood pressure is OK, but I'd like to see it lower. And you've gained a couple of pounds, you should exercise more. And, you sound depressed, I'd like to see you get out of the house more..."

You can imagine my reaction. But I only repeated what I told him before - I cannot do more exercise or leave the house more than what I'm doing, because my pain meds have been reduced to the point they don't work. If I can get pain meds that will actually work again, I would LOVE to be more active.

His reply was - "Well, your blood pressure and weight are OK. It's not important."

I don't want to try and find yet another doctor, there are no others near me who my insurance deals with that deal with RSD and pain meds at all, I've checked. I don't even know how I'd get to a more distant doctor, or how I'd handle all the costs involved with trying to get a new pain management plan started. No way insurance covers all of it, or even likely most. And even if I do that - how long before they move me to weaker pain meds again? It's happened over and over, even with all CLEAN drug tests. But I honestly don't know what else to do?

I feel like a hermit living in constant pain. I've even started to worry about one day not making it to the kitchen from my bedroom. Yesterday, I almost fell through a window because the pain was so bad while walking. I know this forced inactivity is hurting my health, and I'm starting to wonder if prolonged isolation is affecting my mental state?

Any thoughts or ideas at all would be appreciated. Sorry for the long read.

If your pain management doctors are uncooperative, there's fairly little you can do, I'm afraid.

I was diagnosed almost 3 years into the condition. I have had this now since age 23, and am 47 now. So a couple decades now. I am diagnosed with chronic, unresponsive CRPS. So all that *can* happen is pain management, basically.

I first received Tramadol, then was put on Fentanyl (which I had an adverse reaction to), and then they switched me over to Buprenorphine pain patches and Neurontin.

Lyrica was tried, but I had an adverse reaction to that as well, so back to the Neurontin it was.

I have been on this program since 2004, and am doing OK. I have to have blood drawn every year to be on the safe side.

It is what it is.

Pain medications have their side-effects, any medication does. Sometimes it is weighing one thing against the other.

I hope you find some relief.
__________________
All the best, Marleen
=====================
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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