[Sonny1]

Hi All,

I know, asking about vitamins helping when all of these high potency drugs and machines don't help? I have heard and read that with the right combination of course, that B-12 with a couple other vitamins and supplements, it has helped some people with RSD/CRPS. Has anyone here had any experience with it or known anyone to have tried it? I am thinking about asking my pain management Dr. about trying it (obviously, she would have to do it, injection form) since she is against med's anyways...and I choose not to take pain med's. I am willing to try. I just started to take B-12 for energy and it even says on the bottle for nerve/nervous system!

I am looking into some other more natural items that I heard about on Dr. Oz, for inflamation and things like that...guess it can't hurt the body anyways. Any input would be appreciated!

[mrsD]

It is best to get tested first. And if you are below 400, or hovering thereabouts, you could use B12 anyway... RSD or not.

You don't need injections, as oral active form works in high dose.
methylcobalamin 5mg orally on an empty stomach...for pennies a day.

My B12 thread explains all:

http://neurotalk.psychcentral.com/thread85103.html

Many doctors don't even know oral works. And many have never heard of active form methylcobalamin.
Many people on the boards here use it now.

[Nanc]

Hey there!
I have low B-12, D and Potassium. I get monthly B-12 injections and when the level gets high, we skip months because too much is definitely not good for you! I take D drops and Potassium pills daily. At this moment my B-12 is at a good level so we are skipping a couple of months, I have never noticed when the levels are up there that it helps my RSD at all.

That is not saying that it might not work for you. If you do choose to take any supplements, especially vitamin B, you need to do so under medical supervision because levels that are too high can be dangerous as well.

All the best,
Nanc

[mrsD]

There is no upper limit for B12. The lab ranges often end around 800-900. But there is no recorded high being harmful anywhere in the literature for over 40 yrs! The FDA has not set an upper limit on B12 therefore. Most of us at PN keep ours above 1000. Dr. Snow who in 1999 changed B12 interventions and therapy has in his article, reasons for using B12 even if you are normal. He found relatively normal patients with neuro problems who improved with B12 supplements anyway irregardless of test results in the 400's or so.

There is NO evidence that high levels are dangerous.
Toxicity

No toxic or adverse effects have been associated with large intakes of vitamin B12 from food or supplements in healthy people. Doses as high as 1 mg (1000 mcg) daily by mouth or 1 mg monthly by intramuscular (IM) injection have been used to treat pernicious anemia without significant side effects. When high doses of vitamin B12 are given orally, only a small percentage can be absorbed, which may explain the low toxicity. Because of the low toxicity of vitamin B12, no tolerable upper intake level (UL) was set by the Food and Nutrition Board in 1998 when the RDA was revised (6).

from http://lpi.oregonstate.edu/infocente...ns/vitaminB12/

In fact lab ranges below 400 are still considered "normal" and are NOT. This is where the real problems reside.

My thread has medical sites for doctors on it early on, and also Dr. Snow's paper on post #70 later on. B12 is very misunderstood, and that need correcting for many patients today, esp if you are over 50 and even healthy!
People using drugs, acid lowering drugs, and some others, will develop B12 loss, and not even know it.

Originally Posted by Nanc

Hey there!
I have low B-12, D and Potassium. I get monthly B-12 injections and when the level gets high, we skip months because too much is definitely not good for you! I take D drops and Potassium pills daily. At this moment my B-12 is at a good level so we are skipping a couple of months, I have never noticed when the levels are up there that it helps my RSD at all.

That is not saying that it might not work for you. If you do choose to take any supplements, especially vitamin B, you need to do so under medical supervision because levels that are too high can be dangerous as well.

All the best,
Nanc

[catra121]

When I was tested early last year, my B12 levels were around 260 so they had me begin using a B12 nasal spray which the doctor said is about as efficient as the injections except that you can do it at home (no needles). I noticed no effect on the RSD...or anything for that matter. It didn't hurt anything though. Doesn't hurt to get tested.

If you are looking for something besides medications to help with inflammation, definitely check out Hooshmand's 4 F's diet. There are diets designed to help with inflammation. I've been sticking to the 4 F's diet (Lit Love has given a lot of good information about this and the few things that are a little outdated) and it seems to have helped with the inflammation. I'm not taking any meds right now for the inflammation either...I'm worried about the long term effects of taking so many meds when I am only 28 years old. Eating healthier cannot hurt and if it has the potential to make me feel better (which I think is working) then why not give it a shot?

I have also heard that vitamin C infusions have helped some. That may also be something worth looking into. I don't have experience with it myself though and cannot speak to its effectiveness. There have been several posts about this though and if you do a search you can probably find them.

[lobster]

Originally Posted by Sonny1

Hi All,

I know, asking about vitamins helping when all of these high potency drugs and machines don't help? I have heard and read that with the right combination of course, that B-12 with a couple other vitamins and supplements, it has helped some people with RSD/CRPS. Has anyone here had any experience with it or known anyone to have tried it? I am thinking about asking my pain management Dr. about trying it (obviously, she would have to do it, injection form) since she is against med's anyways...and I choose not to take pain med's. I am willing to try. I just started to take B-12 for energy and it even says on the bottle for nerve/nervous system!

I am looking into some other more natural items that I heard about on Dr. Oz, for inflamation and things like that...guess it can't hurt the body anyways. Any input would be appreciated!

I had to have vit. B12 shots and they did make a difference, now I take vit. B12 Pills. I also have arthritis and was told that natural cherry juice or pills will help so I am going to try it!

[kathy d]

Hi Sonny1,
I think BComplex vitamins in as natural form as possible is great for rsd folks. I have found it to really help with my pain and gives me a boost from the vitamins. I have been doing iv's of natural vitamins and trace minerals and it seems to be the only thing that helped me. I have tried it all and they made me worse or were not very helpful and I felt sick. I get doc to use butterfly needle (peds) so I don't have to much pain. My regiment now consists of iv natl vits once a month, handful of blueberries once a day in am, slice of lemon in my tea in a.m. and I try to eat healthier and exercise more. Oh and I have been able to get off ALL pain meds (since Feb 2011) which I took for over five years!!! I had a doctor in Oct 2010 tell me "you just have to accept you have a disease and will need to take pain meds the rest of your life!" I was devastated because I was withdrawling off fentanyl and after what I went through I would NEVER use that mess again. For me...natural is the best way for my body. The less meds I take the better I am and feel. Yes I still have pain everywhere but some days are better than others. You just need to do what works best for you. Some things that work for one person may not work for another. I know it is tough but never give up hope something will work.
Best of luck
kathy d