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 11-25-2016, 09:02 PM #1
Sophie0513 Sophie0513 is offline
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Default PM appt this Monday-questions for PM

Hope everyone is doing well!
I have a f/u appt with my PM this Monday

My current treatment is 1200 mg of gabapentin and nortriptyline for sleep

I also have been taking LDN 4.5mg of LDN for about two weeks prescribed by a psychiatrist that I started seeing for anxiety and depression when I was dx'd with CRPS. I also had one lumbar sympathetic nerve block that didn't seem to help and I also had some concerning things happen after the block so I am hesitant to do anymore.

I have seen slight improvement however my feet still feel swollen and I still have burning pain when i try to walk in any type of footwear.

Does anyone know of any other medication options I might have?
I know ketamine is a treatment option, but I am not sure if that is an option for me ?

I ask these questions because I need guidance as I try to hold it together as I fall apart.

Thank you
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Old 11-26-2016, 05:29 AM #2
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Quote:
Originally Posted by Sophie0513 View Post
Hope everyone is doing well!
I have a f/u appt with my PM this Monday

My current treatment is 1200 mg of gabapentin and nortriptyline for sleep

I also have been taking LDN 4.5mg of LDN for about two weeks prescribed by a psychiatrist that I started seeing for anxiety and depression when I was dx'd with CRPS. I also had one lumbar sympathetic nerve block that didn't seem to help and I also had some concerning things happen after the block so I am hesitant to do anymore.

I have seen slight improvement however my feet still feel swollen and I still have burning pain when i try to walk in any type of footwear.

Does anyone know of any other medication options I might have?
I know ketamine is a treatment option, but I am not sure if that is an option for me ?

I ask these questions because I need guidance as I try to hold it together as I fall apart.

Thank you
For me, I am taking about as much Neurontin (2700mg a day) as it is necessary to get the symptoms (swelling, ice cold frost bite feeling, discoloration, etc.) mostly under control - mind you this is in a chronic case of CRPS!

That didn't take complete care of my pain, so I have a pain patch to accompany this.

Are your symptoms under control? Is your doctor willing to up the dosage? All things to ask your doctor and see. Getting this thing under control is a feedback system between you and your doctors.
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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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Old 11-26-2016, 11:16 AM #3
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Hi Sophie,

You are going to make it through this. I know it can feel like you're falling apart. Try not to project too far into the future. In the beginning I had to take it day by day. Sometimes hour by hour or even minute by minute! Gains will be small but will build over time.

You haven't been on the LDN very long yet. All reports and studies indicate that it takes a while, sometimes months, so hang in there as long as you are tolerating it.

Your doctor could tell you if ketamine is an option for you. I'm not sure how quickly they usually offer it. It's use is becoming more common for various pain conditions though. I wish I'd had pursued it a little earlier myself. Of course I'm on a very low dose as an outpatient and never did a full on 10 days over two weeks protocol so mine is not as big a deal as some other methods. What you're currently taking medication-wise seems like a good combo and if it were me I would try that for a while and add in physical therapy, light compression, lymphatic massage etc. before doing anything else. Discuss with your doctor how long they think you need to try something before adding other meds.

Are you able to access any kind of aqua therapy? (sorry if you answered this already) Swimming, walking in the water or even just swishing around at a local YMCA pool that is reasonably warm can be quite helpful.

Sending healing thoughts,
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