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 07-16-2012, 08:44 AM #1
musicgirl757 musicgirl757 is offline
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Default Supplements?

Hey everyone, I'm thinking about trying some supplements to help with rsd. Have you found any that work well for you or you notice a difference in your pain/sensitivity and energy levels? I have heard good things about alpha lipoid acid, and magnesium. Has anyone tried these or others and had success? Thanks.
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Old 07-16-2012, 08:58 AM #2
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There is a thread here on Vit C-- high dose:

http://neurotalk.psychcentral.com/sh...hlight=Vitamin

Vit C also shows promise in preventing RSD in studies from Europe, from surgeries or trauma to the foot and wrist. So it is worthy of looking at.

I'd get tested for B12 and Vit D to see if you are low in either.
In US you should be at 400 or above for B12.. Don't accept "normal" from the doctor because lab ranges have not caught up with the new treatments, and they still report very low values as "normal"...and many doctors are not up on the new
information.
http://www.aafp.org/afp/2003/0301/p979.html
Also many doctors do not know about active B12, and still use the synthetic cyano form which is not converted well by many people to active in the body.

Don't accept RX D treatment with D2, because that is outdated too. D3 is what you will need. approx 1000IU D3 for every 10 US units to raise. The new low normal is 50.

Vicc (poster from the past) was having good results with grapeseed extract also which is inexpensive. You'd need 200-300mg of that.

If you choose lipoic acid, do the new improved form, NaRALA which is stabilized and purified. This allows for only 100mg a day and is better absorbed. Best to take on empty stomach.
If you do the OLD ALA...racemic mixture type you'll need 600 to 1800 mg a day. Also take on empty stomach or lose 30% of your absorption.
Doctor's Best makes an affordable stablized R-lipoic and we on PN mostly use it now.

Magnesium should be a chelated form, and NOT oxide type. The OXIDE is not absorbed.

If you decide to take B12, you'll do best with 1 to 5mg a day, of active methylcobalamin (available easily and inexpensively on the net). Take this also on an empty stomach for best absorption. Very low testing, will respond well to 5mg daily and once you are back up to a normal level (many of us at PN keep ours at 1000), you can do 1mg a day or 5mg twice a week.
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Old 07-16-2012, 09:47 AM #3
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Dr Sajben (www.painsandiego.com) has my daughter on ALAmax CR, NAC, Vitamin D3, and B12.
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Old 07-16-2012, 10:43 AM #4
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Alpha lipioic acid is good and L-arginatine. But watch your magnesium. mag and potassium control your heart rate so I don't recommend you fool with these.
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Old 07-16-2012, 11:04 AM #5
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Recommendation for magnesium supplements is to take 1/2 the RDA for them. Studies have shown up to 70% of Americans are low in magnesium because of the diet. In fact many people are walking around low in magnesium and THIS is a risk factor for long QT syndrome, esp those taking drugs like methadone, and Nuedexta. People on long term Lasix will lose magnesium daily thru the urine and so do diabetics or those with insulin resistance.

You can choose to get your magnesium from foods.
My thread here illustrates that:
http://neurotalk.psychcentral.com/thread1138.html
Most people do not eat foods that provide the daily RDA for magnesium.

Potassium on the other hand, should not be supplemented without a doctor's supervision and testing.
Many foods are good providers for potassium. Today recommendations for food and potassium are 4500milligrams a day.

To check your food choices for magnesium content or potassium content this site is very helpful:
http://nutritiondata.self.com/
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Old 07-16-2012, 03:59 PM #6
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I take ghinko biloba which helps a lot and vitamin C. The vitamin is to ward off disease because I'm scared silly of getting a cold. I take 250mg of grape seed extract every three days (two days after a new injury) to slow down the spread. I'm not sure spread is so bad but can't believe it's good and it seems largely irrevrsible.

My doctor has me trying a new one (butter bur) but it's too early to be sure. It affects the pain, I believe, but I'm not certain yet that the affect is positive.

Some vitamins (like E or massive B12) have proven hurtful. Go with what works and try to start things one at a time.
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Old 07-16-2012, 04:25 PM #7
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I don't see how B12 can be massive orally.

A 1000mcg tablet yields 10 micrograms absorbed. The only thing massive is in the tablet itself, not what gets into YOU.

I typically recommend people get tested before taking B12.
It is good to know where to start.

And also the NIH and dietetic associations now recommend all people in US over 50 to take a B12 supplement. 30% will develop achlorhydria (low stomach acid) which will impair absorption from animal proteins.
And many have low acid from chronic use of the common acid blocking drugs, Zantac, Prilosec both OTC and other RX ones, like Nexium.

Also metformin depletes B12 in many patients too.
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Old 08-18-2012, 01:28 PM #8
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I had a friend recommend DLPA. Her sister uses it for fibromyalgia. I have done some research and can't find any reason not to try it...so I have just recently started it.
At this point I am willing to try anything.

The pain reliever DLPA (D,L-phenylalanine) contains two forms of the amino acid phenylalanine. The "L" form is a natural substance found in Protein-rich foods; it's believed to bolster mood-elevating chemicals in the brain, such as dopamine and norepinephrine. The "D" form of phenylalanine, on the other hand, is made synthetically in a laboratory; it appears to block a nervous system Enzyme that amplifies pain signals. In other words, it may prevent the breakdown of the brain's natural narcotics.

DLPA supplements combine the "L" and "D" forms of phenylalanine, packing a potent one-two punch, and quickly relieving minor depression and physical discomforts.
Health Benefits

Research indicates that DLPA can be an effective part of an overall program to fight chronic pain and beat the blues, including the mood swings of premenstrual syndrome (PMS). Some sources contend that DLPA can increase energy and mental alertness, as well as heighten the ability to focus in individuals with attention deficit hyperactivity disorder (ADHD).

Combined with ultraviolet (UVA) light therapy, various forms of phenylalanine have also been proposed as a treatment for vitiligo, a somewhat mysterious dermatologic condition characterized by the development of white, pigment-free patches of skin. Patients with Parkinson's disease also have experienced some relief from symptoms when taking DLPA and doing a pain relief therapy called TENS (transcutaneous electrical nerve stimulation). However, rigorous research into these uses is still needed.

Specifically, DLPA may help to:

Ease depression. Several clinical studies have examined the effect of DLPA supplements on mood. In one trial, 12 of 20 depressed men and women who took 75 to 200 mg of DLPA a day reported being free of depression after less than three weeks of treatment, and four reported feeling somewhat better. (1) Another early trial involving 40 depressed patients showed DLPA may be as effective as the conventional medication imipramine in treating depression. (2) However, these studies were conducted more than two decade ago. Newer studies are needed to confirm or refute efficacy in treating depression.

Allay chronic pain. Although more research is needed, there is some evidence that DLPA can help to relieve certain types of chronic pain, including muscle aches and persistent arthritis-related pain. The supplement appears to inhibit the actions of a pain-inducing protein called enkephalinase. Some scientists speculate that DLPA also helps by boosting the effectiveness of narcotics and other pain medications. However, scientific studies have been inconclusive. In a double-blind study of 30 patients with chronic pain from various conditions that had not been relieved by several other treatments, 25% of patients reported more pain relief after taking 250 mg of DLPA four times a day for four weeks compared to the Placebo group. However, 22% of patients reported more pain relief from placebo, and 53% of patients reported no difference in pain relief during the study. (3) Preliminary evidence indicates DLPA taken in conjunction with opiates for pain may increase efficacy of the conventional medications and reduce the dosage of opiates required to treat pain. (4) More research is needed to confirm or refute efficacy in treating chronic pain.

Enhance concentration in attention deficit-hyperactivity disorder (ADHD). Some research indicates patients with ADHD may have lower levels of Amino acids such as phenylalanine. (5) Proponents suggest the ability of DLPA to enhance chemicals in the brain leads to improved concentration in patients with ADHD. However, research in this area has been disappointing. In a 1985 study of 19 adults with ADHD, 13 subjects who completed the study and were treated with DLPA for two weeks showed significant improvement in overall ratings and, specifically, in mood enhancement. However, all positive benefits of DLPA faded within three months of continued treatment. (6) And in a 1987 study of 11 hyperactive boys, no changes (improvements or deterioration) in behavior were seen in the patients treated with 20 mg of DLPA daily for two weeks and placebo for two weeks. (7) This research also is more than two decades old and requires new trials to confirm or refute efficacy.

Improve the appearance of vitiligo. In combination with ultraviolet light (UVA) therapy, DLPA has been shown in several studies to activate the cells responsible for pigmentation in adults and children. Thus, by activating these cells, DLPA helps to return the white, pigment-free skin of vitiligo back to its original color. Both oral and topical formulations have shown efficacy. (8) A review of studies has shown doses lower than 50 mg of oral DLPA daily plus UVA therapy improved pigmentation in as much as 70% of vitiligo spots in one open trial of 149 patients, up to 60% in a double-blind trial of 32 patients, and up to 50% in another open trial of 20 patients. (9, 10) In a study of 13 children treated with oral DLPA and UVA therapy, three children experienced re-pigmentation of all vitiliginous areas, six showed 50% to 90% improvement, and four failed to respond. (11) In a 2002 study of 70 patients treated with 100 mg of oral DLPA plus 10% L-phenylalanine topical gel and exposed to sunlight or UVA lamps for six months, more than 90% of patients showed improvement in vitiligo, with more than two-thirds of those patients achieving re-pigmentation in at least 75% of vitiliginous areas (primarily on the face). (12) A 2008 review of 15 trials evaluating natural vitiligo treatments found that all trials involving DLPA in conjunction with light therapy reported beneficial findings and that it warrants further investigation. (13)

Reduce symptoms of Parkinson's disease. Limited research indicates DLPA may help to improve rigidity, walking, speech and depression associated with Parkinson's disease. (14) More research is needed to determine efficacy in treating symptoms of Parkinson's disease.

Dosage Information

Special tips:

--Look for formulations that contain both the "D" and "L" forms of the amino acid phenylalanine. This combination is less likely to lead to high blood pressure than using the natural "L" form alone.

--If you have high blood pressure, start with very low amounts, such as 100 mg a day. Increase the dose slowly and only under a doctor's supervision.

--As is the case with most dietary supplements, DLPA has not been studied in pregnant or breast-feeding women, those with kidney or liver disease, and in only very limited fashion in children. Safety and proper dosing in these groups has not been established.

For relief of depression: 200 mg a day, taken in the morning.

For chronic pain: Up to 1,500 mg daily, taken on an empty stomach.

For ADHD: 20 mg daily has been used.

For vitiligo: 50 to 100 mg oral DLPA daily along with UVA exposure, and/or a 10% phenylalanine topical cream along with UVA exposure has been used.

For Parkinson's disease: 200 to 500 mg oral DLPA has been used.
Guidelines for Use

As with other amino acid supplements, it's best to take DLPA on an empty stomach with water or juice about an hour before meals. High-protein foods, in particular, can interfere with proper absorption.

Store in a cool, dry place, such as a closet shelf away from heat, light, and moisture. (Avoid the humid bathroom medicine cabinet.)
General Interaction

Because DLPA exerts its effects through the central nervous system, avoid taking it with prescription antidepressants or stimulants, unless specifically instructed to do so by a doctor.

Some research indicates that DLPA can exacerbate facial tics and other symptoms of tardive dyskinesia, a troubling movement disorder caused by long-term use of antipsychotic medicines. Stop taking DLPA and consult a doctor for concerns about reactions to DLPA.

As with other Amino acids, DLPA may interfere with the effects of levodopa, a drug commonly used to treat Parkinson's disease. Don't combine the two.

Note: For information on interactions with specific generic drugs, see our WholeHealthMD Drug/Nutrient Interactions Chart.
Possible Side Effects

At recommended doses, DLPA occasionally causes mild side effects, such as heartburn, nausea, or headaches. At excessive doses (more than 1,500 mg a day), it can cause numbness, tingling, or other signs of nerve damage.

DLPA may have the unwanted effect of raising blood pressure, although the D, L combination form is less likely to do so than supplements containing only the "L" form of the amino acid.
Cautions

Use DLPA under the supervision of a doctor familiar with its use. When taken in high doses (greater than 1,500 mg a day) over prolonged periods of time, nerve damage may develop. Lower doses appear to be safe.

For those with high blood pressure or who are prone to anxiety or panic attacks, DLPA could seriously aggravate the condition. Let a doctor know if signs or symptoms worsen while taking DLPA.

Pregnant women should not take DLPA, since it has not been well studied in this group.

For people who have been diagnosed with malignant melanoma, a potentially deadly form of skin cancer, some doctors caution against taking DLPA. There has been some concern that phenylalanine could stimulate the pigment producing cancer cells, although the connection, if any, remains unclear.

Persons with phenylketonuria (PKU), a rare, inherited metabolic disorder should avoid taking DLPA, as they lack an enzyme that converts phenylalanine to tyrosine and must follow very strict dietary guidelines to prevent toxic damage to the nervous system.
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