Supplements are that... to supplement what you NEED.

They are not drugs unless used in very high doses.

There are some parallels here on RSD to what the PNers here have.

And since I keep an eye on other research, I have been thinking about the posters here.

1) The possibility that RSD is a mitochondrial disorder is growing daily, as this research is hot right now.
If your mitochondria fail to work properly, then those cells don't work right and you have a "disorder".
The supplements for mito glitches are
acetyl carnitine
CoQ-10
Biotin
Lipoic acid (the new r-lipoic is better than Alpha lipoic)

All of these have been found useful for peripheral neuropathies induced by drugs/toxins and vaccines.

Also I can recall years ago that CALCIUM metabolism was considered a trigger for RSD. In fact there were posts on the old BT board that the IV bisphosphonates were being used in Europe successfully for this. But I am not finding posts here that anyone explored that option recently. In fact IV bisphosphonates are HERE in USA now for osteoporosis.

2) because of this suspected LINK...I think if you take Vit D and calcium without thought to balancing this intake with MAGNESIUM, you may be running into trouble or no response. (Neurontin-gabapentin is a drug that works this way)
Magnesium is a NMDA receptor antagonist, and I posted this recently. So ANYONE with chronic pain, should consider using magnesium. Magnesium also DILATES blood vessels...it is far stronger than the gingko in this regard.

3) antioxidants.... I have seen many posts here about the usefulness of these. Grape seed extract is excellent for this.
Also is curcumin. Curcumin has been recently found to be a huge blocker of endothelial inflammation (blood vessels), which leads to blocked blood vessels. Our PD forum uses this and if you search it there, they have some sterling papers to read.
Curcumin is highly popular now for any inflammatory disease/syndrome. Its only drawback is that it is not well absorbed but there are some choices that help with that.
Curcumin with the additive bioperine (Doctor's Best is an example)
or Curcumin used in studies with absorption enhanced properties --called CurCugel 500mg (this is the one I use)
Curcumin also helps arthritis, and any other inflammatory condition.
http://www.epic4health.com/cuul500mgena.html
I am only using one a day of these, and find considerable effect on my arthritis!

Hit and miss choice of supplements is frustrating. That is why I try to follow the research as much as possible.
The PN experience we share, I think can help many here.
B12
Vit D
are two very important nutrients for your nervous system.
Please visit our board, for details on these two as well.

Dear Mrs D.

Regarding IV bisphosphonates I was treated in 2003 with two infusions of pamidronate. Despite my complaints of a horrible migraine and not feeling well following the first treatment my doctor went ahead with the 2nd treatment.

This was just one of the many in a long line of horrible side effects I have experienced from drugs used to treat my RSD. I ended up in the emergency with the worst possible tinnitus, a loud roaring motor inside my head. The blood vessels in my right eye had burst and I ended up loosing partial hearing in my left ear. Still have the tinnitus, albeit milder after having steroids injected directly into my eardrum. They tell me this was a rare event, and despite having a reduction of the deep bone pain for a while it is not something I would recommend.

I am one of those highly sensitive types to drugs and unfortunately have experienced further rare allergic reactions to medications, a curse and perhaps a blessing too. I'm learning how to manage with less pharmaceutical interventions and am now more in touch with my bodies signals.

My doctor finally now listens to me when I tell him that something is too strong for me or that it makes me sick.

I'm very curious about the research that is showing this connection between RSD and mitochondrial disorder. Would you mind sharing your source please.

Many thanks

MsL

I already posted the mito information here, on the infection thread.

It is also at the PN forum.
http://neurotalk.psychcentral.com/thread80999.html

Mito degeneration is now considered a factor in simple aging.

What stands out for me reading here, is that the circulatory system in RSD patients is failing at the small vessel level.
Swelling, discoloration, pain etc are similar in blood clot disorders.
Also the response to HBOT which helps the tissue recover is suggestive of a circulatory failure of some kind. The oxygen helps but does not reverse the process that created the ischemia. Nerve blocks are temporary in that they block the signals to the spinal cord, but they don't reverse the process either.

I find papers like this intriguing:
from http://www.ncbi.nlm.nih.gov/pubmed/9107464

Calcium channel blockers prevent calcium from causing vasoconstriction. (in other words they are vasodilators and are used in blood pressure control for that. Nifedipine is also used in pregnancy for premature labor and high blood pressure).

Mito disorders used to be considered "rare". To have a full blown case one needs to inherit genes from both parents.
This usually manifests in childhood with first symptoms.

However, now today we are finding that drugs damage mitochondria, some are common antibiotics in fact. Others like statins are used by millions and millions of people.
So mito disorders can be acquired it is now thought.
and are different in presentation than understood in the past.

For example.... Charcot Marie Tooth a hereditary peripheral neuropathy showing some hope with Vit C therapy: It is a failure in some forms of ATP energy production at the mito level.
http://www.cmtfoundation.org/Research/AscorbicAcid.html

As we discover more genetic connections, it might be that some people have a minor error in calcium or other electrolyte/nutrient use in the blood vessels and this gets disrupted by a trauma/surgery, etc and cascades into RSD.

The nutrients used for improving nerve functions in AIDs patients are the same used for mito support. The drugs those patients take damage the nerves and they started with supplements for this over 10 yrs ago. So it is not really "new".
These supplements are not harmful, do not have side effects like drugs do, but are costly to some extent. Some patients on our PN board use them successfully.

If you would like to read more on mitochondria:
from http://www.ncbi.nlm.nih.gov/pubmed/18192313

As the mitochondrial researchers continue now, on a hot trail,
I think we will see more on this subject. Genetics will also help, as it appears that RSD is not a common disorder and strikes only certain people. Its resistance to treatment so far may be because we don't know exactly why it occurs. And it may turn out that something common (like the Vitamin C in CMT) will be the answer!

wow. thanks for all your replies! i really appreciate the strength of other peoples' experiences and research supplementing my own. and thank you, mrsd, for all the new things to google. my boss doesn't appreciate it, but i sure do.