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 07-17-2016, 02:05 PM #11
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Purple,

I am not surprised. ):

I wish you the best and pray that you heal.
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Old 07-17-2016, 02:58 PM #12
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Quote:
Originally Posted by PurpleFoot721 View Post
Yes I do. I started out with the usual Neurontin, and Elavil, along with Norco for breakthrough pain. The Neurontin and Elavil did not help me enough to continue taking them. My previous PM doctor moved me through a several different medications and ended up over medicating me. My current PM has me on a relatively low dose of MS Contin, along with Effexor and Terazosin. I also take Norco for breakthrough pain, but I try to limit that to the days that I travel back and forth from my doctor appointments to where I am currently living which is just under a 3 hour ride each way. We drive down one day, go to an appointment the following day and drive home on the third day. I am usually flared rather badly those days from all the traveling but there are not many doctors that now much about CRPS where I live, plus I did not want to switch doctors again. This current combination of medication does help some, particularly the Terazosin which helps with vasodilation to improve blood flow to my foot, but they do not help enough with the pain. I would really like to get off of the opiates all together, and go back to something more like Tramadol when I feel I really need something.

Biobased, my PM does not believe that LDN does any good for CRPS so he will not prescribe it. I did ask though in case you are wondering.

I also see a pain psychologist. We started biofeedback about a month ago. So far, I have not seen this doing much for me and no longer do this at her office, but I do still use it at home. I figure that it does not hurt anything continuing on at home, but I did not see enough improvement to continue paying for it when it is something I could easily do at home.

I am taking things one step at a time, quite literally. I don't expect to get rid of the pain entirely, but as I told my sister the other day, I just want to be a little more comfortable where I can start trying to use my leg again.
I react great to Neurontin and have been on that medication since 2004 - it still is doing great for me. I also have a pain patch with it. It's different for everyone, I guess.

Before 2004, I was given Tramadol (first the drops then the slow release ones). It only ever took the sharpness away. So it wasn't as effective for pain relief for me. But at the time, it was better than not having anything there. The pain was/is so intense without the pain medication! I've run all the stages in my legs (almost 3 years without diagnosis & treatment because no one knew what it was that was wrong with me).

Over here a SCS is only ever suggested when all meds have been tried and nothing else works well.

That's why I asked.
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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 07-17-2016, 06:28 PM #13
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Hope you are feeling better soon Alaina. Glad to hear you can touch your foot. Thanks for the update. Wishing you the best.
peace
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Old 07-18-2016, 05:23 AM #14
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Hope you are feeling better today!
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All the best, Marleen
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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 07-19-2016, 02:39 PM #15
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Well, things are not going so good. After trying to place some weight on my foot Saturday night in to Sunday afternoon, my pain levels went back up. I do not know if I over did it one of these days, or if it was just a coincidence that my pain levels were down for these two days.

My representative does not seem to know what to do as a result of the increase in pain. I find it kind of strange that I go for a week long trial with a device that has three programs and seven levels for each program, but my representative does not want to move past program one, level six, which is one step above where I started. Here it is, day five of a week long trial and my PM, who finally called me back last night, told me to turn the unit off entirely. I do not feel that only trying two settings on a unit that has many more settings is a proper trial, but maybe they have their reasons.
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Old 07-20-2016, 07:29 AM #16
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Quote:
Originally Posted by PurpleFoot721 View Post
Well, things are not going so good. After trying to place some weight on my foot Saturday night in to Sunday afternoon, my pain levels went back up. I do not know if I over did it one of these days, or if it was just a coincidence that my pain levels were down for these two days.

My representative does not seem to know what to do as a result of the increase in pain. I find it kind of strange that I go for a week long trial with a device that has three programs and seven levels for each program, but my representative does not want to move past program one, level six, which is one step above where I started. Here it is, day five of a week long trial and my PM, who finally called me back last night, told me to turn the unit off entirely. I do not feel that only trying two settings on a unit that has many more settings is a proper trial, but maybe they have their reasons.
I think that they set it on a special program, and it has to work on that, if it doesn't you aren't a good candidate. I think that's how it goes here as well. You either respond to the theory of it working, or you don't.

Is it totally implanted yet? I gather not. Be wary of infections in that case. Slightest raise in temperature, or it going red at the site: be at your doctor!
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All the best, Marleen
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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 07-20-2016, 09:53 AM #17
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Quote:
Originally Posted by CRPSbe View Post
Is it totally implanted yet? I gather not. Be wary of infections in that case. Slightest raise in temperature, or it going red at the site: be at your doctor!
This is only the 7 day trial. They have not implanted a permanent device, and since I did not respond well, they will not be implanting one. The temporary comes out tomorrow.

They did caution both me and my mom, who I am living with at the moment, to watch for a rise in temperature and other signs of infection. My mom happens to be an RN who specialized in pain management before she retired. All of her patients were terminal hospice patients, so she does not have any experience with CRPS or anyone with a SCS. She has had a number of patients with long term epidurals, which have similar dressings from my understanding. She has been checking my back daily for any sign of infection, and I have been taking my temperature twice a day. So far, I have not had any problems. I am keeping my fingers crossed that I continue to not have any problems while the incisions for the leads heal up.
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Old 07-20-2016, 04:08 PM #18
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Quote:
Originally Posted by PurpleFoot721 View Post
This is only the 7 day trial. They have not implanted a permanent device, and since I did not respond well, they will not be implanting one. The temporary comes out tomorrow.

They did caution both me and my mom, who I am living with at the moment, to watch for a rise in temperature and other signs of infection. My mom happens to be an RN who specialized in pain management before she retired. All of her patients were terminal hospice patients, so she does not have any experience with CRPS or anyone with a SCS. She has had a number of patients with long term epidurals, which have similar dressings from my understanding. She has been checking my back daily for any sign of infection, and I have been taking my temperature twice a day. So far, I have not had any problems. I am keeping my fingers crossed that I continue to not have any problems while the incisions for the leads heal up.
I'm sorry it didn't end well for you. I'm sure they can tackle - keep tackling it with medication.

Wishing you lots of strength!
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All the best, Marleen
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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 07-22-2016, 08:19 PM #19
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Alaina,

Sorry your trial was unsuccessful. I know your frustration.

I had my failed SCS trial a few years ago. I had leads, etc. put in on a Thursday. The following Monday rep tried unsuccessfully to reprogram. My PM removed the leads that day. A few weeks later, my PM wanted me to do another trial. I declined.

Obviously SCS works for some; but not all of us are good candidates. Oxycontin and Percocet have been the only thing that has made my 24/7 pain tolerable. I have been on the same dose for over four years. You mentioned the Oxycontin did not work for you. What dose were you taking and how many per day? Sometimes the dose may not be adequate.

Alaina, hope the pain from the trial procedure has healed and your pain issues have not worsened.




Gerry

Last edited by ger715; 07-22-2016 at 10:42 PM.
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Old 07-23-2016, 07:55 PM #20
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Alaina,

I am sorry the trial did not go well for you. I hope you are feeling better today. May you heal quickly from the procedure.

Take care,
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