CRPS and Reflex Sympathetic Dystrophy: Approach to Treatment — an Overview

It's important to recognize that multiple kinds of pain are involved in CRPS. In addition to the pain caused by sympathetic reflex issues and neuropathic pain, there is a very large component of secondary muscle pain that may also be a severe cause of the discomfort. So looking for and treating all of the components is important.

How to Begin

1. Look for a Pain Medicine Specialist

Called "Physical Medicine and Rehabilitation" or "Physiatry" specialists, most of these healthcare specialists have either an anesthesia background (focusing on surgical and injection techniques), or more of an internal medicine background that includes treating myofascial/muscle and nerve pain. In the beginning of the illness, the former is more helpful as the nerve blocks can be most beneficial in the first 12 to 18 months. After that, somebody who knows how to do trigger point therapy and other muscle techniques may be more effective.

2. Watch This Excellent Video by Dr. Pradeep Chopra

This has a wealth of helpful information and is a good place to begin. If you can see him for CRPS medical care, this would be highly recommended as well.

Next Steps: Treating the Root Cause

Below are some of the treatments used for dealing with the root causes of CRPS:

1. IV Biphosphonates (Use Whatever Is Available to You Locally)

Use Pamidronate 90 mg administered once over 3-4 hours (give in 500 cc normal saline). Per Pradeep Chopra Clodronate 300 mg IV daily for 10 days; or Alendronate 7.5 mg IV once; both can cause initial flaring of symptoms in Acute CRPS, so better to use only for chronic issues. He also uses Pamidronate 60 mg IV; Neridronate (supported by an Italy study; a study is currently underway in US). The study mentioned in section 3 above also gives initial dosing and type recommendations for acute CRPS, though longer term treatment is often necessary to maintain benefits.

2. LDN (Low-Dose Naltrexone)

Taking LDN 3-4.5 mg at night is very helpful and simple. It can settle down what is called "central sensitization," a key component of the pain. Higher doses will not work. This is available from compounding pharmacies. They usually cost about a dollar a day. They may initially disrupt sleep a bit. If this happens, take it in the morning and begin with lower dosing and work up to the higher dose as tolerated. The benefits can be marked over time and usually begin after about 2 to 3 months, with side effects disappearing. LDN cannot be taken if one is on narcotics. In that situation, doxycycline 100 mg twice a day can also help with the central sensitization but can cause candida/yeast overgrowth.

The below two treatments also help with central sensitization, though I find LDN to be the most effective and safe of these, and so I usually just use LDN for central sensitization unless I am unable to. PEA (see below) is non-prescription and may be even more effective!

1. Quinapril 10 mg (BP lowering medicine). Blocks microglial activation and central sensitization.
2. Pentoxifylline or metformin can also help.

3. PEA (Palmitoylethanolamide) Supplements

Begin by taking a supplement called "PEA Healthy Inflammation Response" 2x daily. PEA can help in many ways. However, it can take 2-3 months to even begin to see the benefits. So give it time. If you'd like to see an information sheet on PEA, you can email me at Fatigue Doc@gmail.com and I'll send it to you.

4. IV Ketamine Protocols

IV ketamine protocols can be very helpful. Physicians who use these protocols will usually know the dosing, but it should normally be at least 1 mg per kilogram of body weight. Some physicians who give IV ketamine will also give intravenous lidocaine. Both of these increase with effectiveness over time. Nasal ketamine can be much easier and lower cost. The standard prescription is $800/dose and not usually insurance covered. But compounding pharmacies can make it for about $3/dose in the nose spray form. This is what can logistically work best for people after the first monitored dose. The compounding pharmacist may be able to guide your doctor and, with their OK, even guide you.

5. Topical 50% DMSO (From Compounding Pharmacies)

Topical 50% DMSO applied three times a day has been shown to significantly, or markedly, diminish CRPS symptoms over several months. This is low cost with the only real side effect being a garlic smell.

6. Reset Your Limbic System

Reset your limbic system using DNRS (Dynamic Neural Retraining System — (you can do this on your own). Visit the "Retraining the Brain" website to learn how. Begin with the DVDs. Find a four-day stretch where you can focus simply on doing the program. Then one hour each day is recommended, but even 15-20 minutes a day can be very helpful. You should start to see results by about 8-10 weeks by practicing 1 hour a day. Some people then find coach to help them and then do the workshops . Especially consider this if you experience hypersensitivities.

Another excellent approach is the ANS Rewire method by Dan Neuffer. This takes less time commitment than DNRS and is very grounded.

Both methods get similar results, but the "languaging" for each is different. Visit both web sites and see which appeals most to you.

For those with abuse/PTSD histories, also consider "Primal Trust." You can think of this as combining the DNRS/ANS Rewire system with somatic practices.

For Pain

1. Neurontin (gabapentin) 100-900 mg 3-4x daily as needed for pain. Other medications in this family and along with nortriptyline can also be quite helpful.
2. Baclofen 10 mg 1-2 tabs 3-4x daily for muscle pain (start this at a lower dose as it can be very sedating).
3. Compounded topical nerve pain creams including at least ketamine, Neurontin, baclofen, and lidocaine. This is available from compounding pharmacies by prescription. Your physician can call the pharmacist there who will guide them. Apply topically one to three times a day to the painful areas and give these six weeks to start working.

It's common for a secondary fibromyalgia to be present in CRPS. So this also needs to be treated using our S.H.I.N.E.® protocol for fibromyalgia. If fatigue, widespread pain, and poor sleep are present, then you likely have a secondary fibromyalgia. This quiz can help tell you if you do. The same protocols can help muscle pain in general.

General Support

Over-the-Counter Supplements

• Vitamin C (reduce free radicals). Suggested dose is 500 mg by mouth once daily.
• Fish oil (reduce inflammation and enhance immune system). Take Vectomega two tablets a day. This markedly decreases the number of pills needed.
• Clinical Essentials® multivitamin. These have the B vitamins,  magnesium, and vitamin D along with numerous other critical nutrients needed to help settle pain from a number of causes. When you take Clinical Essentials, you should also add 1,000 units of vitamin D daily.
• Acetyl-L-carnitine (reduces free radicals and blocks T-type calcium channel). Suggested dose is 500-1,000 mg by mouth 3 times a day. This and the two below takes 3-6 months to start working.
  • Lipoic acid 300-600 mg twice a day. This can markedly help nerve discomfort (it can be combined with IV lipoic acid), and
  • NAC (N-Acetyl Cysteine) 500-1,000 mg daily to increase glutathione.

Holistic Physician Guidance

Holistic physicians may also give magnesium 1-2 g over 1-2 hours plus lipoic acid 1,000 mg IV as often as 2-3 times a week for a few months until your pain settles down. It can then be taken less often. Lipoic acid is especially helpful and has been widely studied for neuropathic pain. It hasn't yet been studied for CRPS, but it is reasonable to take it for neuropathic pain. The main side effect of lipoic acid at doses over 600 mg intravenous is a drop in blood sugar, so your doctor should have an amp of sugar water to administer IV as needed (easy to address and not a big deal).

You might consider reaching out to Dr. Pradeep Chopra, one of the world’s top CRPS specialists. He is a pain management specialist in Pawtucket Rhode Island and a Brown Medical University Professor. He also has a ketamine IV clinic as part of his office in RI and is usually the keynote speaker for the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). You can view his conference videos on his YouTube channel. Dr. Chopra is one of the most compassionate CRPS knowledgeable doctors there is.

He and his team literally spent five hours one on one with me!  He sets up a basic treatment protocol for you and you take it back to your Primary Doctor and set up the program in your home state. He's very good about answering your questions if you email him after your appointment, and he may even give you treatment options or new referrals. (Though please note that he does not take insurance.)

To contact Dr. Chopra, visit his website at PainRI.com, or call his office at (401) 729-4985.

On a side note, I was very disappointed to learn that a German drug company that had been conducting clinical trials in the U.S. for neridronate IV as a treatment for CRPS has halted them. It is so successful in Italy. Many CRPS patients I know have been to Italy and have gone into remission with treatment.

Get My book, From Fatigued to Fantastic

I highly recommend getting the new 4th edition of my book “From Fatigued to Fantastic” (the one with the blue cover). You will find a lot of this information to be helpful, as a secondary fibromyalgia is very frequently seen in CRPS. CRPS is also discussed in depth in my book “Pain Free 1-2-3.”

For Acute Flares of RSD/CRPS

[The following is eserpted from "Tips for Managing Complex Regional Pain Syndrome," by Jim Ducharme, MD, CM, FRCP.]

Given the cause of the pain flare-up, the treatment needs to be directed at stopping the NMDA activity. This is best accomplished with ketamine, an NMDA antagonist. A patient can only receive intravenous ketamine in a hospital environment, so emergency physicians need to be able to recognize and treat these severe pain flare-ups.

Treatment Is Straightforward:

1. Initial bolus of 0.2–0.3 mg/kg of ketamine infused over 10 minutes. Giving this dose as an IV push will produce a high rate of dissociative side effects (up to 75 percent of patients) and should be avoided. Almost diagnostic is the patient’s response: severe pain should be resolved by the end of the 10- minute bolus.
2. An infusion of ketamine (0.2 mg/kg/hr) for four to six hours. Although the medical literature for this is almost nonexistent, clinical experience has shown that an infusion of this duration resets the NMDA activity to baseline. Patients can return home on their usual medications, with the expectation that the flare-up, which can normally last weeks, will be over. Return rates for the same flare-up after ketamine treatment approach zero. For readers who feel four to six hours is too long, I encourage them to try shorter periods (two or three hours) and publish their results. No discharge prescription from the emergency department will be required.

Patients do not require admission, and they should not receive opioids. They do require the acute ketamine intervention, or they will suffer severe pain for weeks as a result of the flare-up. To date, there is no other effective treatment for a CRPS pain flare-up. Some researchers have studied an infusion of 5 mg/kg of lidocaine over a 60-minute period [Dr T note: I consider 3 mg per kilogram over 20-30 minutes, and then 2-3 mg/minute intravenous over three hours to be safer and more and effective for intravenous lidocaine] as an alternative treatment plan, but results are variable. Referral of newly diagnosed patients to physiotherapy and a comprehensive pain program is critical 

To Avoid Recurrence/Spread With Surgery

Take vitamin C 1,000 mg a day. In general the 500 mg should be taken daily as noted above to decrease recurrence risk.

References:

Ketamine with surgery: [vi] Schwartzman RJ et al, “Ketamine as Adjunctive Anesthesia in Refractory Complex Regional Pain Syndrome Patients: A Case Series, J Clinical Case Reports, 2:186 (Aug. 2012)

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Hope this is helpful for you. CRPS has been one of the hardest pain conditions to treat for decades. But it is finally giving way to effective treatment. The problem now is lack of physician education. The above will give you the tools you need. Please share them with your physician and others.