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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)


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Old 10-11-2016, 11:50 AM #21
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The LDN Story (A documentary about low dose naltrexone) - YouTube

Barb, US - Reflex Sympathetic Dystrophy (RSD) - Low Dose Naltrexone (LDN) - YouTube
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Old 10-11-2016, 01:55 PM #22
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Quote:
Originally Posted by BioBased View Post
Ooh, thanks!
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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 10-11-2016, 03:49 PM #23
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Old 10-12-2016, 09:31 AM #24
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My husband took LDN for years for his MS. It helped him keep bladder control. It had ZERO side effects for him. But if he hadn't done his own independent research and brought it to his neuro, he never would have been able to take it and try it.
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Old 10-19-2016, 08:10 AM #25
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Default LDN - just starting
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Originally Posted by tatagraves View Post
I want to start taking low dose naltrexone for my crps. I am pretty nervous and have a few questions before I start it. My first question is did it make anyone worse? I am trying to take back my life and am very nervous about anything getting worse then it already is. My second question is how did you guys get it? Did you get through your doctor or online? Prescription or no prescription? I believe i have read you have to get it compounded and I know some labs are better than others. So if anyone just has any recommendations on how to acquire this and if I should even bother then I'd be very thankful.
I will let you know just started six days ago at 1.5 mg at night before bed - fast release, filler is Avicel. It was compounded for me. I had to educate my GP doctor in a nice way after trying a pain clinic which would only offer gabapentin. I did the research and brought her articles from reputable sources. I will start 2.0 mg this Sunday for 10 days and work my way up to 3.0 mg in 0.5 mg additions. So far no bad side effects. I think my mood has started to improve but that may be because someone is starting to work with me. This drug takes time to work and I need to be patient.
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Old 10-19-2016, 09:16 AM #26
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Originally Posted by Littlepaw View Post
Hi Tata, I hope what you need isn't getting buried in here too badly. We seem to be getting a little off-topic.


CRPSbe,

Tata specifically asked about LDN as a possible treatment. We are supporting her by sharing what we know. I don't know why this offends If posts on this topic really bother you maybe it would be better to ignore them.

Yes, Bio raves about LDN. And why not? It has helped her tremendously and is a non-invasive, inexpensive, non-addicting, low side effect profile treatment with research behind its efficacy. I'm glad there is something positive for Tata to hear about it. I wish we had more treatments like this to hooray about.

We do talk a lot about different options. However, we have our own bias because if something is working for us it is often the result of a lot of trial and error. We are limited by being able to share what we know personally and what research we've encountered. Naturally the same things are going to come up again and again.

As for CRPS being "very" disabling. There is that possibility for sure, but the statistics support improvement in the majority of cases. I fully agree it is a difficult disease but I hope sharing our knowledge with each other helps us all achieve the best possible outcome.

Hugs to Tata and thanks (we get a little carried away sometimes)
I like you very much as you are very common sense. I am hoping Tata got my response to her as I am just starting LDN last thursday and am new to the group. I started at 1.5 mg and am hoping to move up 0.5 mg every 10 days. My GP got on board and it is being compounded locally with Avicel filler (filler is important for fast release). No bad side effects yet. I also started compounded DMSO 50 percent with rose oil for scent (it can be smelly) on my hand 1/2 teaspoon up to 5 times a day). My hand is less stiff and painful for a small amount of time when used. It will give a faint taste of garlic in mouth. If used don't rub in let it absorb into blood stream for at least 20 min and wipe off excess. This is what I am doing so far in my journey aside from PT and constant movement and just started mental health therapy.
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