After 35 years with CRPS/RSD, I have much to share, especially since the disease has stopped progressing and been in the process of regressing. I used to use a scooter. Now, I'm a walkie. I used to need 3600mg of Neurontin taken in 3 daily doses of 1200 mgs, 120mg of Cymbalta taken once daily, 5mg Methadone twice daily, and 2mg Klonopin at bedtime, plus Lidocaine patches. Even with all this medication, the pain was still extreme and I needed a scooter to get around. The disease began when I was 23 years old. I'm 57 now. I feel and look younger all the time. I no longer need a scooter. I've reduced my medication amounts to 1200 Neurontin daily (400mg morning and noon - 500mg at bedtime), Cymbalta 60mg, and Methadone 5mg twice daily and 1mg Klonopin. I plan to keep reducing medications, with my doctor's supervision of course, as I am able.

The most effective medical treatments have been intravenous immunoglobulins (IvIg) and intravenous glutathione (started at 6 grams and ended up sticking with 10grams) together with intravenous lipoic acid. I took Iv glutathione first, after one of my team of 3 doctors ordered a blood test that showed that my body was not producing glutathione. Glutathione is not a drug. It is an antioxidant made in the human body. It is the only intracellular antioxidant and especially important to brain and liver functions.

Lipoic acid is not a drug. It too is an antioxidant made in the human body. Tests, mostly in European countries, have shown lipoic acid administered intravenously is effective in reducing the pain of neuropathy. Lipoic acid also helps the body make and use glutathione.

For a year, I received Iv glutathione followed by a quick saline flush of the Iv line and that followed in turn by Iv lipoic acid. I had daily infusions, then every other day....and now every two weeks. From the get go, I noticed a huge reduction in both pain and involuntary muscle movement, an increase in energy, and improved mental clarity. After about a year and a half, the lipoic acid began feeling too harsh for my veins. It began to burn going in and to cause infiltrations, which is when the vein pops a crack and the liquid substance being administered via Iv floods into the neighboring area outside the vein. I decided to take glutathione only - no lipoic acid - in order to save my veins for glutathione and what turned out to be the wonder drug - the Privogen brand of intravenous immunoglobulins (IvIg).

The doctor who was giving me the glutathione and lipoic acid is a renowned infectious disease specialist. Despite his years at the top of medicine, he is not a 'party line' type of guy. Instead, he prefers to help his patients by doing what works and is not harmful. The doctor knew about old studies demonstrating the efficacy of IvIg for other autoimmune diseases, especially Multiple Sclerosis (MS). He was also treating my daughter for MS. He sent both of us for blood work to investigate our immunoglobulin and immunoglobulin subclasses production. The test results came back with almost identical results for both my daughter and me. We barely had any immunoglobulins and hence, barely any immune systems. No wonder we were plagued by constant infections, had numerous allergies and caught viruses too easily and too often. ! I wonder if any other CRPS/RSD people also have low immunity? I believe it is important to find out the answer to this question, because the answer would indicate a reason to direct research into autoimmune territory.

This year, the New England Journal of Medicine (NEJM) published an article on a study demonstrating the effectiveness of IvIg for MS patients. If you do some research, you will find that IvIg has been used effectively for many autoimmune diseases, such as: MS, Lupus, Rhematioid Arthritis, CRPS/RSD, etc. If you do some more research, you will find the numbers supporting the efficacy IvIg for autoimmune disease surpass the numbers that are supposed to support the use of immune modulating (read, immune killing) drugs with horrific side effects. And, the so called "side effects," are real effects to the people having them! The immune killing/modulating drug recommended to my daughter "MIGHT reduce the instances of exacerbation or flare for 29% of patients with relapsing remitting MS. A greater amount, 32% of those not taking the drug, WILL NOT have another exacerbation or flare. The "side" effects include, lymph cancer, liver cancer, and stupor.

So, why do you think relatively safe IvIg treatment is rare. It is because insurance does not pay enough to cover even the cost to the doctor of purchasing the IvIg. Among IvIg brands there is a range of costs and safe or non-safe ingredients (sucrose instead of saline for one example), as well as safe or non-safe production methods for clearing the immunoglobulins of all pathogens. My doctor uses only Privogen, because he has used it for many years without any trouble.

Pharmaceutical companies have zero interest in IvIg, because it is not something they can make and patent. The representatives of these companies visit doctors and sell them on their drugs. Newspapers, magazines, and television news publicize research done to develop drugs or surgical techniques at the expense of other research performed to discover and document other, safer ways of treating illnesses. To find out all options available, it takes a a couple of capable and passionate researchers, like my daughter, me and our doctor too.

Once the doctor treating me and my daughter observed our responses to IvIg, he changed our dose to 20grams every 21 days. It is expensive! Insurance won't pay for it, even though testing shows we need it based solely upon the results of immunoglobulin subclass testing. In other words, we have a demonstrated medical need for IvIg to survive. If we can't have it, an infection or virus will get us sooner rather than later.

After 8 months of IvIg at 20grams every 21 days (a shorter interval is okay - going more than 21 days without an IvIg infusion has not and should not happen), the CRPS that began in my right big toe joint and spread throughout my body is in rapid retreat. I have much less pain, much more energy, much less involuntary muscle movement and cramping, much less heating up of the body due to inflamed nerves, more energy, more clarity of mind. I am a walkie now! No more scooter! I'm reducing medication amounts on a daily to weekly basis.

We are saddled with a meld of the pharmaceutical industry and insurance industry that together form as system that is erroneously termed a medical system. If the system was a medical one, IvIg would be available to those who need it. All who test as deficient in immunoglobulins and immunoglobulin subclasses need it. All with autoimmune disorders need it. Instead, the joint pharmaceutical and insurance systems give people pharmaceutical treatments with horrific effects.

That's enough about the pharmaceutical/insurance system and the medical treatments that have worked like good magic for me (age 57 -CRPS/RSD for 34 years) and for my daughter (age 31 - MS for many years).

Now, I'd like to let you know about other things I have done to help reverse and eliminate CRPS/RSD. In the course of research, I discovered that just about everyone with an autoimmune disorder is either allergic to gluten or has celiac disease. Even though I was not aware of being allergic to gluten, I chose to go without gluten and see what happened. I felt much better! It takes some study, with books and/or gluten-free and celiac disease websites, to eliminate gluten for the diet. Gluten is added to so many things - toothpastes and generic medications for instance! It is not worth simply eliminating grains from the diet, because that alone will not keep your free of gluten and gluten intolerance/allergy symptoms. If you want to eliminate gluten, learn about all the additives (caramel flavor or coloring, sorbitol, etc) that include gluten. As for the generic drugs containing gluten, your pharmacists will not know enough to give you reliable information. Most do not even know that gluten is an ingredient.! Chalk up another anti-health point for the pharmacuetical industry!

Therapeutic movement was and will probably always be an important part of my recovery regimen. For me, I began with Rehabilitative Pilates and moved on to Rehabilitative Gyrotonic Movement. Both my daughter and I find the Gyrotonic movement method to be especially neuroregenerative, as well as vital in reduction of nerve related pain. The parts of my daughter's brain most effected by MS cause nerve pain much like mine. Consequently, we have been able to share and compare a great deal about relieving nerve pain.

I rode horses at a high level when I was younger and discovered that I could still do so. At first, I had to scooter up to the horse! I discovered the pain relieving effects of riding horses when I was staying with someone in the countryside outside Baltimore, while I was seeing a neurologist at Johns Hopkins in the course of the long search for a diagnosis. As at Mayo, Columbia Presbyterian, and other supposedly excellent medical facilities, the neurologist did not provide me with an adequate diagnosis. However, I my hostess knew a little bit about my former riding ability and invited me to go for a hack, which is a ride out in the country. Even as my mind factored the pain level, my heart leapt at the opportunity to feel a horse beneath me again. I went riding, and then I waited for the pain to increase. I waited and waited. Not only did the pain not increase, it subsided a little bit.

After that experience, I did some research. I discovered that riding horses has been proven to relieve the pain of MS and other neurological disorders. I took up riding again. Now, I can hand walk a horse for 20 minutes, do some gyrotonic movement for 20 t0 40 minutes, and keep active throughout the day. I still need to take meds and get to bed by 8pm - 9pm on rare occasions.

I recommend lidocaine patches for the worst areas - in addition to other meds. They help a lot.

I wish you a way out of the pain! I wish the same for all who suffer from pain of all kinds. I hope some of the things I have shared will help you too. Regarding IvIg, I believe that sharing with others to create a critical mass of informed people may be the only way insurance companies can be persuaded that paying for this therapy is more cost effective than paying for all the drugs I have found to be both dangerous to health and ineffective.

I have discovered that, instead of killing off an entire immune system to fix one part of it not working properly, using IvIg to help the immune system to work properly as a whole, is a prudent and viable form of treatment.

Thank you for all of this information. Just when I get insurance approval for Ketamine, something that I may want (IVIG) is out of reach for me due to insurance denials. May I ask what IVIG costs? Thanks.

Ambika are you doing the IVIG in baltimore? IVIG is somthing im going to try and fight for. Im not ready for the ketamine unless i absoutly have to.

When the hot water hits my neck, the pain in my hand improves slightly. I assume it is gate-control distraction, but I take on average 4 showers a day. Hope to invest in a hot tub one day.

i ended up having sleeves made, called bio skin, they put very soft fleece in them.

So happy that I am able to spread the word to fellow RSD/CRPS'ers.
My mother suffers from CRPS in her left leg. Cannot explain to you how badly this has changed her life and ours. Her pain is just to much to handle. Up until now the pain and depression had taken over her life. We were researching Ketamine treatments, we're desperate. It was that time that I prayed and received an email the next day!
Has anyone heard of Calmare Pain Therapy Treatment!?
Its new, developed in Italy.
There are currently only 20 of the machines in the US.
I was lucky enough to get my mother into the only doctor located on the West Coast.
She had consult yesterday
and her first treatment today!
She literally went from a 8-9 pain to walking out pain free!!
Wow is all I can say.
You can research it, but basically it scrambles the brain. It re-programs the brain that there is no pain there.
Its non invasive, no side effects and ITS NOT PAIN FULL!
Usually it consists of 10-12 treatments 45 min
these are done every day.
The pain is gone immediately and lasts for a few hours.
Gradually the pain comes back
However, each day the therapy is done it comes back less and less
until finally, its gone completely or at a 1-2.
Some people have gone 3 months pain free to 1 year!
If the pain comes back, you simply go back in for a booster treatment!
This is such a MAJOR breakthrough for people with the chronic pain condition and my mom is proof!! SO exciting I had to share the success. and did I mention its something like 91% effective!!

I only wear fluffy socks! Those fuzzy ones, they don't really have a seam and they don't really effect my sensitivity and most of the time keep my ankle/foot warm. I have also started wearing clothes where I can where leggings. I usually wear a long shirt with black leggings under them so I look stylish but am very comfy! I also have a body pillow that I fold in half to keep my foot up while I sleep. Warm always seems to help my pain so I also put a room heater in my bedroom and turn it on a little while before I go to bed so my room is toasty before I go to bed, that way I don't have to put a blanket over my leg. And I swear by my teas. I drink chamomile, tension tamer, and sleepy time tea before bed to help me relax. I hope this helps.

I wear skirts and pantyhose to work - don't like the way pants feel on my foot/leg. Also covers the scars and discoloration. Berkshire longwear pantyhose are the best.

Ballet flats on sale at Easy Spirit

Ice pack

Bubble bath (raise foot on edge of tub)

Breathing machine - e.g. StressEraser

Handwarmer (charges in computer)

Nice makeup/hair (don't we all feel better when we look our best?)

Tools of distraction - Kindle, iPad, iPhone

Socks, lots of white socks - and traction socks. The latter hurt (buy the largest size whatever size you are) but lessen the fall risk

Boots with zippers on the side (leave them unzipped all the time)

Folding travel blanket/pillow

Lightweight luggage

A stable of folding/lightweight travel clothes (e.g. Walmart - "George" brand) mostly all in black

I thought I was doing something wrong and it was my fault that my device wasn't helping my pain and usually made it worse. I just found out that this sometimes happens to people with RSD. I'm not ready to give up because I feel that the device might be my only hope.

So here's my question: What types of settings, frequencies, etc., have worked for you guys?

Also wondering how many have tried sympathetic nerve blocks and if treatment worked. Did for me long ago but before scs had a series of 5 with no success.

NATASHA: The Calmare Treatment sounds like a better option than Ketamine infusions. Is Calmare usually covered by insurance. Also, Dr. Michael in Rutherford, NJ, offers this option to patients with neuropathic pain. Has anyone used this doctor?