It is 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
Find a practitioner who specializes in what's called Physical Medicine and Rehabilitation or Physiatry. Most of these come from either an anesthesia background (focusing on surgical and injection techniques), or more of an internal medicine background which includes treating myofascial/muscle/nerve pain. In the beginning of the illness, the former is most 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.
I do treat people worldwide as well focusing on treating the underlying biochemical problems behind both the muscle pain and also treating the CRPS. This is best done in conjunction with a local pain specialist as well with the two being synergistic. For information, contact Sarah at appointments@EndFatigue.com.
2. Watch This Excellent Video by Pradeep Chopra
This video 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.
3. Recommend Your Physician Read the Below Treatment Overview Article
A very good article from Topics in Pain Management is Complex Regional Pain Syndrome: Update and Review of Management.
There are many other steps as well, but these offer a very good beginning, and can be extremely helpful for what has been a very challenging condition in the past.
For CRPS, treat the root causes:
- IV Biphosphonates (use whatever is available 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 it's better for use in only chronic cases. He also uses Pamidronate 60 mg IV Neridronate (Italy study; a study in the US is currently underway). The study in item 3 above also gives initial dosing and type recommendations for acute CRPS, though longer-term treatment is often necessary to maintain benefits.
I was very disappointed to hear the German drug company has halted the clinical trials in USA for neridronate IV. They are so successful in Italy. Many CRPS patients I know have been to Italy and have gone into remission with this treatment.
- LDN (low-dose naltrexone) 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, instead of taking it at night, take it in the morning and begin with lower dosing and work up. 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 (though it can cause candida/yeast overgrowth). The next two treatments also help with central sensitization, though I find the LDN to be the most effective and safe of these, and usually just use LDN for central sensitization unless I am not able to.
- Quinapril 10 mg (BP lowering medicine). This blocks microglial activation and central sensitization.
- Pentoxifylline or metformin can also help.
- IV ketamine protocols can be very helpful. Physicians who use these protocols will usually know the dosing, but it should 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 in effectiveness over time.
- Topical 50% DMSO (available from compounding pharmacies) applied two to three times a day has been shown to significantly diminish CRPS symptoms over several months. This is low cost with the only real side effect being a garlic smell.
- Neurontin (gabapentin) 100-900 mg 3-4x per day as needed for pain. Other medications in this family along with nortriptyline can also be quite helpful, as can many others.
- Baclofen 10 mg 1-2 tabs 3-4x per day for muscle pain (start low, as this can be very sedating).
- Compounded topical nerve pain creams including at least ketamine, Neurontin, baclofen, and lidocaine (available from ITC compounding pharmacy at 888-349-5453 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 is common for a secondary fibromyalgia to be present in CRPS. This also needs to be treated using our S.H.I.N.E.® fibromyalgia protocols. If fatigue, widespread pain, and poor sleep are present, you likely have a secondary fibromyalgia. This CFS/FMS Checklist quiz can help determine if you do. These same protocols can help muscle pain in general.
- Vitamin C (reduces free radicals). Suggested dose 500 mg by mouth once daily.
- Fish oil (reduces inflammation and enhances immune system). Use Vectomega two tablets a day. This markedly decreases the number of pills needed.
- Energy Revitalization System Vitamin Powder or 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. If using the Clinical Essentials, add 1,000 units of vitamin D daily.
- Acetyl L-Carnitine (reduce free radicals and block T-type calcium channel). Suggested dose: acetyl-L-carnitine 500 to 1,000 mg by mouth 3 times per day. This, along wih the two items below, takes 3 to 6 months to start working
- Lipoic acid 300-600 mg twice a day (can markedly help nerve discomfort). It can be combined with IV lipoic acid.
- NAC (N-Acetyl Cysteine) 500-1,000 mg daily to increase glutathione.
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 pain settles down, and then it can be given less often. Lipoic acid is especially helpful and has been widely studied for neuropathic pain, but not yet for CRPS. But it's still reasonable to take. The main side effect of lipoic acid at doses over 600 mg intravenous is a drop in blood sugar, so the doctor should have an amp of sugar water to administer IV as needed (this is easy to address and not a big deal).
Dr. Pradeep Chopra, One of the World's Top CRPS Specialists
Below is a quote from one person who has seen Dr. Pradeep Chopra, followed by Dr. Chopra's contact information:
"Dr. Pradeep Chopra is a pain management specialist in Pawtucket RI- Brown Medical University Professor. He has a ketamine IV clinic as part of his office in RI. He is usually the keynote speaker for the RSDSA organization and you can view his conference videos on YouTube or at RSDSA. One of the most compassionate crps knowledgeable doctors there is.
"He does not take insurance. He and his team literally spent 5 hrs 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. After the appt- If you email him... he answers your questions and may even give you treatment options or new referrals."
Below is Dr. Chopra's contact information:
Phone: (401) 729-4985
Office address (as of 2017): 102 Smithfield Ave, Pawtucket, RI
For Acute Flare-Ups of RSD/CRPS
(Below is from ACEP Now: Tips for Managing Complex Regional Pain Syndrome.)
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:
- 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.
- 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 trying shorter periods (two or three hours) and publish your 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 per hour 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 Recurrance/Spread With Surgery
Vitamin C 1,000 mg a day. In general the 500 mg should be taken daily as noted above to decrease recurrence risk
Ketamine with surgery: 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)
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.
Jacob Teitelbaum, M.D. is one of the world's leading integrative medical authorities on fibromyalgia and chronic fatigue. He is the lead author of four research studies on their treatments, and has published numerous health & wellness books, including the bestseller on fibromyalgia and chronic fatigue syndrome From Fatigued to Fantastic! and his newer The Fatigue and Fibromyalgia Solution. Dr. Teitelbaum is one of the most frequently quoted fibromyalgia experts in the world and appears often as a guest on news and talk shows nationwide including Good Morning America, The Dr. Oz Show, Oprah & Friends, CNN, and Fox News Health.