I am going to attempt to explain a new treatment protocol I have been on that has really helped me. I don't fully understand the process, so forgive me if I can't answer your questions or am not making total sense. But it's helped me so much, I feel I should share it here.

I have RSD in my shoulders, my arm, two feet, one calf and about half my back. I have been to Cleveland Clinic, and Ohio State Univ. and various other experts. I have tried perhaps 30 medications over the years for it. Very few have made any difference at all. Pain meds seem to have no effect at all. I have been through occupational and physical therapy several times. I managed to remain working through this, but I really don't know how I got by when it was at it's worst.

A couple months ago, my family doctor recommended I see a chiropractor that deals in chronic pain. This was after I said to her that I give up treating it. Nothing has helped, so I am not pursuing any more treatment. I went to this chiropractor pretty skeptical - almost angry - I didn't see where any more physical therapy or "adjustments" would help. I quickly found out he has an entirely different approach than what I expected.

He actually knew what RSD was! And, has treated people with it.

His protocol for me was start me on supplements to get serotonin working again and work on neurotransmitters. Treating the adrenal system. One clue for him was that my Dr's have tried me on at least 15 anti-depressants for pain, and not one of them did anything for me at all. He said my brain probably makes no seratonin - so the re-uptake inhibitors are not working. After these supplements kick in, we will start some basic aerobic exercise - probably a recumbent bike. This helps get oxygen moving and make endorphins. Then he will do some rehab work with massage, trigger points, stretches etc. But he said we will have to move slowly because of the nature of RSD.

He also believes I have "Central Nervous System Sensitization" - I am not sure about this, but the treatment is helping.

Here is a quote from one of his brochures...
"Neurotransmitters are natural chemicals found in the nervous system of the body. Neurotransmitters facilitate and regulate the transfer of electrical energy between the nerve cells (neurons) of the nervous system.
Levels of neurotransmitters that are too low to facilitate the proper transfer of electrical energy between neurons will cause disease and illness.
At present, the standard medicine treatment of neurotransmitter diseases is prescription drugs.
NeuroResearch's laboratory and clinical work has demonstrated that prescription drugs can further deplete neurotransmitters in most patients, making the real cause of the problem worse.
Prescription drugs do not increase the overall number of neurotransmitters around, which eventually causes neurotransmitter levels to further drop.
The only way to truly raise the overall neurotransmitter levels in the brain (central nervous system) is to provide the nutrients (amino acids, vitamins, and minerals) needed by the body to build neurotransmitters. These nutrients will cross the blood brain barrier into the brain. They are then synthesized into neurotransmitters which will raise the number of neurotransmitter molecules in the brain."


He started me on some supplements. First he told me to get Magnesium Asporotate and Potasium Asporotate and take it per bottle directions for one week, then come back. They caused explosive diarrhea. Had to stop the potasssium and cut way back on magnesium. When I went to the next appt. my reaction to these two things told the Dr. that my system was very sensitive. He started me on some other supplements, but very slowly. Over the weeks, we have worked up to a normal dose.

I told him last Tuesday that I felt better than I have in 3 years, since the RSD started spreading.

Here are the supplements.
1) "CysReplete" which has Selenium 134mg, Folate 133 mcg, L-Cysteine HCI, 1500 mg. 2 caps 3 x a day
2) "D5 extra" folate 400 mcg, L-Tyrosine 1,000 mg, 5-Hydroxytryptophan 300 mg, Mucuna puriens 300 mg 4 caps twice a day
3) "D5" Vitamin C 500mg, Calcium 110 mg, Vitamin B6 37.5mg, Folate 200mcg, L-lysine 250mg, 5-Hydroxytryptophan 150mg, L-Tyrosine 1500mg, Mucuna puriens 300 mg
These are spread out over 4 doses during the day, at specific times.

After I am on this for a while (most people it's 2-3 weeks, but for my system, he's recommending giving it a couple months) there will be a test done to determine what the serotonin levels are, and adjustments made from there. When those levels are up, I will begin the "rehab" part of the protocol.

His training etc. came from a Dr. Hinz of NeuroResearch Clinics, Inc. in Duluth MN. Am not sure if I can post the website. I asked him how other RSD'ers might find a Dr. trained in this, in other parts of the country. He said that NeuroResearch website has a place to find a Dr. trained in it.

He says it can help any number of central nervous system problems, like fibromyalgia, migraine, Parkinsons, IBS, Crohn's disease... there is a list of 20 or more things.

There is a side effect of these meds for most people - weight loss. So far they have made me pretty nausiated. I'll take that any day instead of pain! The Dr. tells me that after a few months on this, hunger will go away. When your not hungry, you will lose weight. He said also balancing the adreanals will help with weight loss.

It's a totally different approach than what I have been doing, but it is working. I love to garden, and my flower beds are a disaster after nearly 4 years of not being able to do hardly anything in them. Well, a couple days ago, I was able to weed for 4 hours and thought I would pay for it the next day. However, I was ok - no ill effects from it!

It's not inexpensive. My Dr. has not charged me for the "consultations" - he only charges when you get to the rehab stage. My insurance does not cover him - he is "out of network" and I am worried how I will pay for treatment. The Dr. is not worried - he says we will work it out. He is very interested in working with RSD - and for me not to worry about it. The supplements are expensive - well over $100 a month, since I am taking so much of it right now.

I would say my pain has gone from 6 spiking to 8 down to a 2. I am still stiff, red, shiny, cold, blue, etc - this is NOT a cure for the RSD. But, the pain is so much less! Going from pain with every step and movement - to realizing yesterday that I had not noticed hardly any pain at all during the day - what a huge difference it's made!

I just had to ask on here if anyone else has tried this sort of thing. Also to let everyone know it's something to try. One reason I have been SO skeptical about it is I have found nothing online about treating RSD with these supplements.

Hope people find this interesting.

Jules

I find this very interesting! If you can find the website or where other docs may be located that would be great! I live long island NY-

Thanks

Debbie

Wow, very interesting! I'm always on the lookout for supplements that help us rsd'ers, but this one is definitely not for me! I'm already severly underweight. I've always been small but once I got rsd and was unable to be active I lost a lot of weight very quickly and I didn't weigh that much to begin with. My metabolism runs fast normally but I'm very weird in a very big way. As long as I was able to work and be very active all the time I gained weight. It happened very, very slowly though and I was just getting back up weight wise a bit when this happened. If I do nothing but lay around, I lose weight very, very fast! *sigh* If I could bottle this for others I'd do it in a minute!!! It would be THE thing and no one would ever have to diet again! LOLOLOL

I hope this will work for others though and help them like it's helped you. Keep us up to date with how it progresses. I'm so happy for you!!

Hugs,

Karen

Please keep this thread going with results.

From what I see... you are getting dopamine precursors as well (Macuna and tyrosine).

L-tryptophan is now available again...and is less expensive as the 5HTP you are using.

I wonder.... SAMe also increases neurotransmitter synthesis...and would be faster
than cysteine. You might bring this up with your provider. See what he says.
There is no B12 in your supplements... in order for homocysteine to make SAMe for you
normally B12 is needed with folate and B6.
SAMe donates a methyl group to neurotransmitter synthesis.

Hi Jules!
First of all I am so very happy that you are feeling better since being on these. It makes good sense to me. Next, How long do you take these? the rest of your life? Well, again, I am very happy for you and am so glad you found this great chiropractor to help you!~Love, Desi

I read through all the guidelines here, and still, I am not sure if I can post the website on here. Seems websites for published research papers etc are ok, but this is not that kind of site. I was able to find the website with a simple search. Once you find the page, you go to "contact us" for a way to contact them to find a Dr. in your area using their protocols.

Dr. Hinz, 1150 88th Ave W., Duluth MN is the Dr. trained my doc. He also heads up the organization NeuroResearch, who provides the supplements to Dr's. I believe it is also where the tests go to determine if you are on the correct level. Some of my printed material also gives the name NeuroAssist.

Galena - I don't think the supplements "always" cause weight loss. I have not had any yet! But, the Dr. explained to me that many people do find losing weight easier, and hunger less.

Mrsd, he did not say anything about B12. I did tell him I take a multi vitamin, B complex, a combination for joint health and mobility, and also glucosamine/condroiten... so maybe he thought that was enough? I will ask at my next appt.

Desi - if this works for a person, yes, you do have to take some of them forever. But at a very reduced rate, and it would be something available at health food stores etc - he made it clear that I would not have to buy this exact combination from him forever.

I found out since I posted that he has treated 3 of my medical massage therapist's patients. (none have RSD) Two had no change, and one improved, but they felt not enough to justify the expense. My family doctor said he has helped several of her patients, but not everyone. She thought motivation was a big factor...

I have been on vacation this week, and working outside in the garden every day. For me this stuff has been almost a miracle. Has done a lot more for my pain than any of the pain meds I tried. Took about 6 weeks to notice any difference though.

Jules