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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)

sympathetic lumbar blocks /neurostimulator

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Unread 04-27-2012, 12:46 PM   #1
saraleeCRPS
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Frown sympathetic lumbar blocks /neurostimulator

after 9 SLB, all over multiple areas of your body and you receive absolutely NO RELIEF where does one go from there with full blown CRPS? The APA DR IS wanting to implant a medtronics neurostimulator in me, but after the last injection i received on the 16th of april, something went completely wrong and i have been in excruciating pain ever sense. they did suggest i change my med to lyrica but i have to taper of the 3600 mg of gabapentin i take daily. i pray to God that once i get this medicine in my system it gives me some form of relief, but even the narcotics they have me on daily is causing me to be very discouraged because these aren't even helping the pain..........scared to death in texas!!!!!
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Unread 04-27-2012, 06:07 PM   #2
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Originally Posted by saraleeCRPS View Post
after 9 SLB, all over multiple areas of your body and you receive absolutely NO RELIEF where does one go from there with full blown CRPS? The APA DR IS wanting to implant a medtronics neurostimulator in me, but after the last injection i received on the 16th of april, something went completely wrong and i have been in excruciating pain ever sense. they did suggest i change my med to lyrica but i have to taper of the 3600 mg of gabapentin i take daily. i pray to God that once i get this medicine in my system it gives me some form of relief, but even the narcotics they have me on daily is causing me to be very discouraged because these aren't even helping the pain..........scared to death in texas!!!!!
Hi Sara,

You have certainly had more than your share of trauma in addition to CRPS. Pain can make us real desperate but please do your homework prior to having a spinal cord stimulator implanted. Spreads, revision surgeries and failure are common for CRPS patients.

Have you considered tDCS which is painless, non-invasive and quite effective for CRPS if you are a responder.

Unfortunately with CRPS the only way to protect yourself from procedures that can make you worse is to become your own advocate. This involves doing lots of homework and dumping doctors who cannot offer safe and effective treatments for CRPS.

Hope better days are ahead for you!
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Unread 04-28-2012, 07:58 AM   #3
catra121
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I am very sorry to hear everything that you are going through. I agree with ballerina on everything she said. I had no relief from the blocks, the last ones made me much worse and caused spread, and the narcotics I was given never touched the pain at all so I stopped taking them once I knew there was no relief. I hope the lyrica helps...it was much better for my pain than any other med they put me on during the whole process. I am treating with tDCS at home and I have gotten some great results, as have others.

Whatever treatment you decide to go with, please do as ballerina suggests and do your homework. Make sure you are aware of what the risks of the different treatments are compared to the possible benefits of the treatment, and that you are 100% comfortable with the risks before you go ahead with any procedures or treatments. Everyone has to make their own decisions about what is best for them, but far too many of us who live with this horrifying pain on a daily basis find themselves making decisions out of desperation and then regretting those decisions later on.

I really hope you are able to find some relief soon.
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Unread 04-28-2012, 04:39 PM   #4
saraleeCRPS
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Angry pain with this disease

What do any of you do to ease your pain? Has anyone had any luck with pain meds? I have this Crps in my upper and lower extremities, right side. I am on so many pain meds. Which none have helped with my relief. Depression I am aware triggers this and makes it worse, for Christ sake, I buried my oldest daughter last year to a horrible car accident and then caught this disease. How does one not be depressed? The holidays were just coming up last year at the time of my diagnosis and I just looked at them like they had lost their ever loving mind. It still seems like yesterday that it happened. The intense burning, stabbing, well, I don't have to tell any of you what this chronic pain feels like. I just wish it would go away or atleast they could find something to relieve this excruciating pain......I can't hardly take this any more...my driving now is limited to no more than 30 minutes before stinging and burning start ......which makes it very difficult to drive to see my granddaughter and visit my baby girls grave....IT IS JUST SOOOO DEPRESSING.....uggggg!!!!!!
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Unread 04-29-2012, 08:54 AM   #5
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Everyone is different when it comes to what they can do to help relieve the pain. For me it is mostly a lot of little things that add up to enough that I can continue. tDCS and the TENS unit that I use are the two biggest things that have given me significant relief. As for the rest, I will list them and if any work for you then that's great:

1. Hot baths. I started doing these when it was just my ankle and they do take the edge off. Now that I also have RSD in my upper body (everything between my waist and neck including both arms/hands) the baths are even more crucial to my daily routine. A couple months ago not I actually started taking TWO baths a day and this has turned out to be a very good idea.

2. Ultrasound Heat Therapy. I got an at home portable unit on amazon.com and I use this after each of my baths. I started with just my ankle as that was the initial site of the RSD and was by far the worst. Now I tend to target the other areas that I tend to get flares more often in addition to the ankle. It's weird because the therapy itself doesn't feel like I get any sort of immediate relief but I noticed after I started that it seemed to EXTEND the relief from the other stuff (ie...it took a longer time for the pain levels to rise to unbearable levels).

3. TENS unit. I mentioned this above. I mostly use this on my ankle and wear it all day. I run the wires down my pants leg and do 30-60 minute treatments on a contant setting and increasing the levels as I need to. Then I leave the machine turned off (bu still keep in on me) and just turn it back on when the pain levels start to rise again. I also always have it on when I am doing my physical therapy. This machine was the #1 reason I was able to do my physical therapy and get out of the wheelchair (started it long before I ever heard of tDCS).

4. Heating Pads/Space Heater. I use the space heater when I am sitting in the same place for a long time (which hopefully won't be often now that I have become more active and mobile). I sit next to it and make sure that I am kept warm. The heating pads are great and I have become a huge fan of the generic ones you can get at any pharmacy (like Thermacare of the generic sticky ones). The reason I like them so much is that they are very light weight and they allow me to really target the bad areas. They are a must have item for me when I get a flare. I also have a microwaveable one that I can wrap around my ankle if I need to...but it is heavy so it's a fine line between it helping and it hurting. I also have an electric heating pad that I actually really like...but it obviously only works when you stay in one spot because it has to be plugged in.

5. Lidoderm Patches. These are trickly. They help a little...but sometimes a little makes a big difference between the pain being tolerable and it being so bad you can't function or even see straight. The best way to use these is to not put them in the same spot over day and I find that they help more when I use them with a heating pad. I only use them for flares now and that seems to work out the best for me vs when I was wearing them every day on my ankle.

6. Physical Therapy. I know this is somewhat counter intuitive but it really does help me. Hurts like all get out to do it but I have gotten a lot of function back and over time the pain really does ease a bit. Immobilization and guarding are some of the worst things you can do for RSD so keeping yourself moving is VERY important in that sense. The PT also helped me handle a lot of the stress, kept me focused on a goal of getting better, and helped keep me from falling into an endless pit of depression. The PT and my drive to do it EVERY DAY was something that I could control. So much of this condition is out of our control, as are the other things in life that seem to want to rip us down, but doing the PT, as well as all the other therapies, these were in MY control and I really let myself get VERY focused on all that. It helped me through some pretty rough times.

7. Desensitization. God how I hated this but I made myself do it so that I could tolerate wearing clothing on my RSD areas. Wearing normal clothes made me FEEL better. And as painful as the process was, it did help me to take the edge off the pain and to normalize the sensations. I still have the extreme sensitivity but it is BETTER than it was for a long time last year before I did this.

I really am so very sorry for all that you are going through. Meds were not much help to me either...the lyrica helped a little but in the end the combo of meds they had me on actually made me much worse so I went off of all of them and I haven't gone back on any of the pain meds. Now the only medications I have are the lidoderm patches and the clonidine patches that I wear to help with my dizziness, blurry vision, and some of the other wacky RSD symptoms I developed last year.

If you find that you are really having a rough time, have you considered seeing a therapist? I know many RSD patients find they need the help of a good therapist to deal with everything that is going on. I feel very lucky that I have had such a stong support group in my family and friends and a very stubborn streak of my own to help me cope...but I wasn't dealing with the sort of personal tragedy that you have had to experience on top of everything else. I know it has helped me a lot to have this place to come to where I can vent and express my frustrations with people who really get it because they live with the same things.
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Unread 04-29-2012, 11:36 AM   #6
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Originally Posted by catra121 View Post
I am very sorry to hear everything that you are going through. I agree with ballerina on everything she said. I had no relief from the blocks, the last ones made me much worse and caused spread, and the narcotics I was given never touched the pain at all so I stopped taking them once I knew there was no relief. I hope the lyrica helps...it was much better for my pain than any other med they put me on during the whole process. I am treating with tDCS at home and I have gotten some great results, as have others.

Whatever treatment you decide to go with, please do as ballerina suggests and do your homework. Make sure you are aware of what the risks of the different treatments are compared to the possible benefits of the treatment, and that you are 100% comfortable with the risks before you go ahead with any procedures or treatments. Everyone has to make their own decisions about what is best for them, but far too many of us who live with this horrifying pain on a daily basis find themselves making decisions out of desperation and then regretting those decisions later on.

I really hope you are able to find some relief soon.
What is tDCS?
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Unread 04-29-2012, 02:16 PM   #7
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What is tDCS?
Check out this thread on NT for more information. It's LONG but it has a lot of really good information in it.

http://neurotalk.psychcentral.com/thread160980.html
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Unread 04-29-2012, 04:27 PM   #8
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I am so sorry you are here and that you lost your daughter last yr. I am a mother to 3 teenagers that are all just driving, so scarey letting them go. The sooner after diagnosis the better your chances are of remission.

I have CRPS in my left hand/arm for 3 1/2 yrs now. It has cost me my job, career, gained 40lbs and so much more. I don't take "pain" meds but am on Lyrica, Cymbalta (yes-depression but also helps the nerve pain), Mobic (anti inflammatory) and Flexeril (muscle relxor for the horrible spasms). I have been through the nerve blocks, pulsed radio frequency ablation (made things worse), had a tens which did help, countless therapy-if you don't keep moving it it will freeze up. I did go through with the spinal chord implant. I had a trial first which will tell you if you are getting relief. I had the implant done a few wks after. At first I had about 70% relief and now it is 50% on a bad day and 70% on a good day. I have gone back to college full-time (so now I can also look forward to lots of student loan debt too). The spinal chord stim does help some of us, yes, some have had spread....everyone is differant. I just wouldn't knock it down quickly without talking to people that have had both relief and none, then make your own decision from there. Remember, they do a trial first.



Quote:
Originally Posted by saraleeCRPS View Post
What do any of you do to ease your pain? Has anyone had any luck with pain meds? I have this Crps in my upper and lower extremities, right side. I am on so many pain meds. Which none have helped with my relief. Depression I am aware triggers this and makes it worse, for Christ sake, I buried my oldest daughter last year to a horrible car accident and then caught this disease. How does one not be depressed? The holidays were just coming up last year at the time of my diagnosis and I just looked at them like they had lost their ever loving mind. It still seems like yesterday that it happened. The intense burning, stabbing, well, I don't have to tell any of you what this chronic pain feels like. I just wish it would go away or atleast they could find something to relieve this excruciating pain......I can't hardly take this any more...my driving now is limited to no more than 30 minutes before stinging and burning start ......which makes it very difficult to drive to see my granddaughter and visit my baby girls grave....IT IS JUST SOOOO DEPRESSING.....uggggg!!!!!!
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