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 11-18-2016, 01:07 PM #1
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Default Burning pain/gabapentin or other suggestions

So I continue to have burning pain in the balls of both my feet. A recent nerve block did not seem to help any and I have been on gabapentin (300 mg 4x a day) for 3 weeks as well.

In regards to the gabapentin, could a higher dose calm the burning down?
Can anybody offer any advice or suggestions?

I asked my PM doctor for a pain patch and he said that they don't help!
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Old 11-18-2016, 03:31 PM #2
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Hi Sophie,

Some people respond well to a class of drugs called TCAs, the old tricyclic antidepressants, which are used in low doses for nerve pain. I took nortriptyline 20mg just at bed (two 10 mg capsules as the 30s made me dizzy) and found it to be helpful. It gave me less drowsy feeling during the day than gabapentin and had the added bonus of providing a small noticeable boost in my mood, which gabapentin had dampened. Amitriptyline is also used but tends to have more side effects so I never tried that one. Gabapentin and nortriptyline can be given together and were shown in a study to work better in combination for nerve pain than either drug alone.

http://www.medpagetoday.com/neurolog...nagement/16202

Does anything help as far as footwear? Be sure you have as little heel rise as possible, a wide toe box and arch support or metatarsal support. I have found with my foot issues that shoes really can have significant impact on my comfort level. It took forever to find the pairs that work for me but the search was worth it.

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Old 11-18-2016, 05:02 PM #3
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Default Thank you

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Originally Posted by Littlepaw View Post
Hi Sophie,

Some people respond well to a class of drugs called TCAs, the old tricyclic antidepressants, which are used in low doses for nerve pain. I took nortriptyline 20mg just at bed (two 10 mg capsules as the 30s made me dizzy) and found it to be helpful. It gave me less drowsy feeling during the day than gabapentin and had the added bonus of providing a small noticeable boost in my mood, which gabapentin had dampened. Amitriptyline is also used but tends to have more side effects so I never tried that one. Gabapentin and nortriptyline can be given together and were shown in a study to work better in combination for nerve pain than either drug alone.

Drug Combo Brings Better Pain Relief | Medpage Today



Does anything help as far as footwear? Be sure you have as little heel rise as possible, a wide toe box and arch support or metatarsal support. I have found with my foot issues that shoes really can have significant impact on my comfort level. It took forever to find the pairs that work for me but the search was worth it.


Little paw

In addition to the gabapentin, I am also taking 25 mg of nortriptyline at bedtime. In terms of footwear, I have switched to zero drop/wide toe box Altras and I also have custom orthotics which I can't tolerate at the moment because of the burning and sensitivity in my feet.
Littlepaw, I am so fearful that this burning will never stop and I have only been dealing with this since mid September. THis has effected every aspect of my life and I am holding on really tightly right now! thank you for taking the time to reply to my posts.
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Old 11-18-2016, 06:33 PM #4
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What does your doctor say about increasing the Neurontin (gabapentin)? Have you asked him?
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 11-18-2016, 08:12 PM #5
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hello Marleen

I did ask him about increasing the dosage, however he didn't want to because he is giving me sympathetic nerve blocks. His reasoning was that if he increased the gabapentin at the same time he was doing the blocks there would be no way for him to determine what was actually helping me.
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Old 11-19-2016, 05:24 AM #6
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Quote:
Originally Posted by Sophie0513 View Post
hello Marleen

I did ask him about increasing the dosage, however he didn't want to because he is giving me sympathetic nerve blocks. His reasoning was that if he increased the gabapentin at the same time he was doing the blocks there would be no way for him to determine what was actually helping me.
True. But if the blocks don't help... then there you are. That's the downside to it.

I never went to invasive therapies as blocks, for me that was crossing a line but each of us has to decide that personally.

Blocks can be iffy. They're great if they work. IF they work, but if not then it's a mess, and I always heard they might even exacerbate the CRPS. So, I held off on anything that was invasive.
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 11-19-2016, 11:37 AM #7
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Default I agree

The worst part of the block for me was that I was in the room on my stomach for 10 mins before the doctor came in. My anxiety was off the charts and than I couldn't wait for them to sedate me. I am really apprehensive about the block I have scheduled for this Wednesday....not so sure I want to do it again. When I had RSD initially at age 36, I did 12 lsnb in a 3 month period without second guessing anything. I went into remission about 1.5/2 years later and slowly got back into my life again. I had one good year and than started developing a variety of health issues over a one year period that once again disabled me! After six doctors, I was diagnosed with chronic Lyme disease which took another 18 months of medication and severe weakness and pain to get rid of. I think the RSD coming out of remission means another battle/fight which right now I don't feel I have in me. Thanks Marleen...nice to be connected with you here!
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Old 11-19-2016, 01:55 PM #8
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Quote:
Originally Posted by Sophie0513 View Post
The worst part of the block for me was that I was in the room on my stomach for 10 mins before the doctor came in. My anxiety was off the charts and than I couldn't wait for them to sedate me. I am really apprehensive about the block I have scheduled for this Wednesday....not so sure I want to do it again. When I had RSD initially at age 36, I did 12 lsnb in a 3 month period without second guessing anything. I went into remission about 1.5/2 years later and slowly got back into my life again. I had one good year and than started developing a variety of health issues over a one year period that once again disabled me! After six doctors, I was diagnosed with chronic Lyme disease which took another 18 months of medication and severe weakness and pain to get rid of. I think the RSD coming out of remission means another battle/fight which right now I don't feel I have in me. Thanks Marleen...nice to be connected with you here!
You have certainly been through a lot; no wonder your anxiety levels are high.
I believe that you do have the fight left in you. If you didn't, you would be curled up in bed and not bother to look for information and support. You have the fight left in you, and you will do whatever it takes to get through this. You went into remission once and it can happen again.

I also think that your doctor had a valid point. "His reasoning was that if he increased the gabapentin at the same time he was doing the blocks there would be no way for him to determine what was actually helping me. It seems like he is looking out for you. If the blocks don't help, you just have to ask what else he has in his bag of tricks.

Hang in there.


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Old 11-21-2016, 12:18 PM #9
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You are the patient. You have the right to say no.

Just a reminder. You can decide not to do the block. If you don't feel it is helping, if you feel it is too scary, whatever, you can say no.

As for gabapentin, the top out dosage is around 3000 mg in a day, so you have room to go up if your doctor will approve it. You might say to him you need the more immediate relief right now, and the block doesn't seem to be providing that.

As the patient, your pain needs to be addressed. And I am speaking as one who (as I said in another thread) REALLY doesn't like to change two things at once because you won't know what is doing what. Doctor is trying to address the pain thru the blocks, you have to decide if that is worth it or not.
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Old 11-21-2016, 05:38 PM #10
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Quote:
Originally Posted by Becca71 View Post
You are the patient. You have the right to say no.

Just a reminder. You can decide not to do the block. If you don't feel it is helping, if you feel it is too scary, whatever, you can say no.

As for gabapentin, the top out dosage is around 3000 mg in a day, so you have room to go up if your doctor will approve it. You might say to him you need the more immediate relief right now, and the block doesn't seem to be providing that.

As the patient, your pain needs to be addressed. And I am speaking as one who (as I said in another thread) REALLY doesn't like to change two things at once because you won't know what is doing what. Doctor is trying to address the pain thru the blocks, you have to decide if that is worth it or not.
3600mg, I think. I'm on 2700mg daily (3x (3x300mg) daily), have been since 2004. I have a pain patch on top of this; the pain is really atrocious!

I do sympathize!!!
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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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