I'm taking every supplement anyone's recommended to see if anything "natural" helps. But having just read the gingko biloba post, and instantly thinking "where can I get ginkgo biloba on my lunch break?," makes me think that I might OD on vitamins.
What do you guys think? I know you can od on too much of one thing, but how about on the right amount of too many things?
I'm taking 1,000 mg vitamin C, 2,000 mg vitamin D, a B complex vitamin, 100-150 mg grapeseed extract, and a few Tums a day for calcium.

P.S. Soooo...what else should I take? Cripes, I'm addicted to healthful supplements! Maybe I'm hoping for placebo-effect pain relief...I overdid it this weekend and am paying for it now!

I would avoid taking anything unless I knew it was helping or thought it might be. I always make changes to my regimine one at a time and "accidently on purpose" forget to take things once in a while. I only recently discovered one drug was causing tardive dystonia in addition to low grade hallucinations. Most of the upplements don't have any effect on me that is discernable especially in the short term. High doses of any of these can be detrimental or even fatal. As a rule of thumb you'll want to try to stay around the daily recommended dose. One doctor advised me to take 50000% of the daily dose for B6 but I couldn't get up to anything like that. I started at 1/ 10 th that amount and it caused severe headaches. Be careful of some like niacin as it can cause a painful flushing; it feels like your skin's on fire. Carotine is dangerous.

Even the biloba in large quantities is said to be dangerous but there are no bad effects associated with smaller amounts. They will avoid operating on you if you've taken it recently.

I take the 1000 mg tablets of vitamin C but cut them up into little tiny pieces and take one twice per day. It does seem effective at warding off colds which is critical to me. If I feel a cold coming on then I triple up on it and it seems to go away. If I might have been exposed to a cold I double up on it. As always the best way to avoid a cold is handwashing and vigilance. The vit C does seem to work though with 11 years experience.

If a medication isn't helping or is causing trouble talk to your doctor. Most can be replaced with something else. If a supplement isn't helping then you probably shouldn't be taking it. Most of these won't hurt you but anything can.

This is really complicated but in time you'll probably learn what works best for you. Learn your triggers (stress, light, noise, diet, additives, meds, supplements etc etc) and learn how to ignore the pain. It won't go away but you need to fight the disease not yourself.

Another way to supplement your diet with extra vitamins, is juicing. I have carrot and apple in the morning. Spinach and other veggies at night. Berries and yogurt for desert. The initial purchase of a juicer may be a bit costly, but there are so many benefits and you can always use fruits and veggies in season and on sale. Sams clubs now carry some organic veggies and the berries can be frozen as well. Just another way to get a few vitamins in naturally. Di

Heres some free recipes, but you can be creative with what you have on hand.

http://juicer.lifetips.com/cat/59941/juicing-recipes/

I'm not an expert on this subject but I have been researching this area for the past few months. One thing to keep in mind when taking supplements is to make sure that you are taking them appropriately. For example some supplements are oil soluble such as fish oil, Q-Enzyme 10, vitamin E, These should be taken on an empty stomach for better absorption. Others need to be taken with food. With higher doses above the recommended guidelines it is always it is important to consult your doctor. The quality of the suppliment is also important. The saying goes "you are what you eat", but I have recently learned "you are what you absorb".

The one suppliments that I am having very good success with is enzymes, a full spectrum digestive enzyme for my stomach taken with food and a systemic enzyme taken on an empty stomach for inflammation and pain.

Sometimes I think perhaps I'm taking too many suppliment but since I've seen such a big improvement in everything from my hair, nails, skin, reduced pain and inflammation, I'm not inclined to switch a winning team.

The addidtion of suppliments has also come along with a major shift in my diet from eating way too much red meats and animal fats to what I call an anti-inflammatory diet, more fresh organic fruits & vegetables along with avoiding food additives in procssed food. I'm not as good with the exercise but still trying to find the right routine that won't flair up my RSD.

MsL

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.