RSD – Complex Regional Pain Syndrome – A Case Report


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Rational Polypharmacy

Naltrexone is a remarkable drug for intractable pain

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I first saw this RN in June 2006.

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She is now 60 years old.  She was an OR scrub nurse for almost 30 years, but was disabled for the last 5 years before seeing me. She had Reflex Sympathetic Dystrophy [RSD] of both legs with “arthritis” of the feet/ankle that felt like she was “90 years old” with cold allodynia. Allodynia is pain from a stimulus such as light touch or a breath or air that is not normally painful. Imagine a light touch that feels like severe nerve pain, one of the most disturbing pains a person could have. The temperature of her feet was 81 degrees, hands 92 degrees.

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Pain of both feet felt like a vise grip, gnawing, penetrating, “like broken bones in the feet,” variable at different times but always worse as the day progressed, with a crushing sensation that penetrated through foot and ankle. She was unable to tolerate socks or anything on her feet after 5 pm, unable even to tolerate air on the area, unable to tolerate coolness below waist, but felt hot above waist. She wore a blanket and covers on the hottest 120 degree days, and forced herself to tolerate touch at the legs in order to desensitize them, as we instruct patients to do. She felt constant tingling numbness of the soles of feet for 3 years, with weakness, stiffness “almost solid” like a block. Spasm in soles of feet had resolved the last 6 months before seeing me.

Pain ranged from 2 to 9 on a scale of 10, where 10 is the worst pain imaginable, worst after 5 pm. Average pain was 3. It interfered with sleep at times, and she used a tented frame to keep blankets off her feet, preheated the bed to avoid any coolness, and avoided cold under all circumstances. In the morning, the joints felt like she had a broken ankle. She would massage the feet with lotion, put on alpaca socks, and slowly begin to walk. Then tried to mobilize the joints. Walking made pain worse though walking had always been a favorite activity.~

Before seeing me she had had more than 10 sympathetic blocks, was hospitalized 11 days due to headache from prednisone 60 mg that had been trialed to relieve her pain. She had been prescribed Procardia to relieve the “vascular” disease that she did not have but the drug led to gangrene of the gall bladder; she had been prescribed almost every “adjuvant” used to relieve pain and as much as 9 grams of Neurontin daily, all of this to attempt to relieve the severe pain in her legs and feet.

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This is how she got better

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When I first saw her in 2006, I prescribed low dose oral ketamine that gave relief lasting up to 3 hours from each dose. She then requested referral to Dr. Schwartzman, chief of neurology at Drexel University in Philadelphia, for continuous 5 day ketamine infusion that was done May 2007. She was pain free but it completely lost effect after 8 months, despite booster infusions every 4 to 6 weeks for 4 hours daily over 2 days during those 8 months. After insurance the cost out of pocket was $45,000 in 2007 alone. Dr. Schwartzman had nothing more to offer after it failed and said most patients have relief for less than 6 months if at all.

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In March 2007, I started her on a combination of Namenda 55 mg daily with lamotrigine 350 mg daily that relieved 90% of the pain, but once every 6 to 8 weeks she needed 12.5 to 25 mg low dose oral ketamine for breakthrough pain. Even more rarely, she used oxycodone 10 to 20 mg.

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In October 2008, adding naltrexone 1 mg by mouth, she became pain free. Since then she has not needed anything for breakthrough pain and on 3/5/09, she reported that her last use of ketamine and oxycodone occurred with the addition of low dose naltrexone.

 

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In 2009, she hiked 30 miles down the Grand Canyon and back up in 3 days.

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Naltrexone was later increased to 4.5 mg as she completely tapered off lamotrigine.

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By December 2009, the RSD was 98% better and she reported that it was not pain anymore. Medications then were naltrexone 12.5 mg at bedtime and Namenda 55 mg daily in divided doses. She had just a “remnant” of a little buzz, but no crushing except when active, late in the day.

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A few months later she slowly tapered off Namenda with no increase in pain; and in October 2010, on my advice she tapered naltrexone 12.5 mg from daily to every third day. There has been no increase in pain but she is reluctant to discontinue naltrexone for fear that RSD may recur.

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She hikes 2 miles 3 to 4 times a week, does Iron Mountain once a week, does “Silver Sneekers” exercise 1 hour 3 times a week and sleeps well 8 to 10 hours a night without a sleeping pill.

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She remains on low dose naltrexone as her sole medication for this

previously disabling neuropathic pain syndrome~

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She has returned to part time work and spends a few weeks a month traveling the world, hiking, volunteering, sightseeing.

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Research funding is needed to view whether we can detect

activated glia in the spinal cord, as discussed here.

If there are no signs of activated glia, she may feel reassured that the condition has resolved.

Naltrexone is an immune modulator.

The site of action of naltrexone is at the Toll-like receptor (TLR4) attached to the cell surface membrane of glia.

The ability to view activated glia would help greatly in treatment of so many conditions including neuropathic pain.

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Naltrexone

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I have found that naltrexone is a remarkable medication for various pain conditions, and going through the steps of rational polypharmacy may be very rewarding for some patients though at times it may work all on its own. It has caused me to completely reassess how I approach the treatment of intractable pain – not just RSD or CRPS but arthritis, sciatica and various forms of mechanical pain. And it has led to further changes in the timing and dosing of naltrexone based upon the experiences patients have reported back to me over the years. It is hoped that further research will lead to better understanding of how naltrexone acts upon pain pathways. Surprisingly we already know quite a fair amount.

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My deepest gratitude to Dr. Jau-Shyong Hong, Chief of Neuropharmacology at NIH, whose many generous discussions, emails and research publications have helped me to understand it’s profound anti-inflammatory effect in the central nervous system through its actions on microglia. I previously posted a discussion of mechanisms of naltrexone and dextromethorphan in greater detail here. Naltrexone and dextromethorphan are classified as morphinans, morphine-like. They suppress Superoxide, a free radical that destroys neurons which may cause or contribute to Alzheimers and Parkinsons Disease. That research goes back to the late 1980’s and continues to grow. Phase II studies with morphinans are now being done on those conditions. Studies are also going on now with naltrexone/Wellbutrin combination for weight loss. The drug is called Contrave, from Orexigen Therapeutics Inc. and the dose I believe is 32 mg naltrexone – I do not know how they decided upon that dosage.

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In my experience, naltrexone is a very benign drug at these low doses, though colleagues who prescribe 400 mg for the FDA approved use at that high dose may see some liver toxicity. I always begin at 1 mg or 4.5 mg, depending upon whether or not the patient is a slow drug metabolizer, i.e. may lack one of the CYP P450 chromosomes for metabolizing drugs. I have long suspected it also has an effect on the hypothalamus because a few patients with profound postmenopausal hot flashes have reported that is no longer a problem and that their husbands simply cannot believe the bonus, and this may explain the effect upon appetite that Orexigen has found. At higher doses than I generally use there may be some constipation which is treatable. It may cause vivid dreaming in some, and a small percentage may have insomnia for a few days. Pharmacology and safety is discussed here.

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Stay tuned. I’ll be adding more case reports of different pain conditions in the near future. They are truly fascinating. It has changed my entire approach to treating pain.

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Cost

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Wouldn’t it be nice if NIH funded more for pain research? Imagine how much money that would save the country and save the lives of each person with disability who could recover? As I posted here, the American Pain Society has shown that NIH spends 0.67% of its budget on pain research – less than 1% – though 10 to 20% of the population in the US suffers from chronic pain, an estimated 60 million Americans, and pain conditions are more prevalent among the elderly.

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I am told by my pharmacist that perhaps 70% of the time insurance will approve coverage for compounded low dose naltrexone. It is very affordable but some insurance carriers deny payment for naltrexone. Medicare will not pay for compounded medication either. Compare this low cost compound to the wholesale price for 100 tablets of Oxycontin, $1300, which may not be relieving pain – then multiple that by 2 or 3 each month for one patient. Imagine if the $22 billion of federal money for health insurance technology, for software which is untested and will expire in a few years, instead went into NIH funding for pain research. What a lovely thought.

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The material on this site is for informational purposes only, and

is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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21 Responses to “RSD – Complex Regional Pain Syndrome – A Case Report”

  1. Jennifer Livingston Says:

    I am really hoping to be Dr Sajben next successful case study. I want to thank Dr Sajben for her time, engery and effort in battling not just my RSD but with the big insurance companies. She is a breath of fresh air in a world full of darkness. Thank you again Dr Sajben

  2. Chris Tatevosian Says:

    Hello Dr.

    My name Chris Tatevosian. We are blessed to have Trudy as our mutual friend. She has told me about you and your use of LDN. I’ve been taking ldn for just eight weeks with some incredible improvements. It has eliminated 80% of my MS related fatigue and strengthened my legs incredibly. I don’t know if I will continue to see or expect to see further improvements over time, but I am impressed with the results of thus far.

    I have had MS for 30 years and I have recently written a book that I want to share with as many people with chronic illness and disabilities as I can. I will be the guest on Trudy’s blog talk show this Friday. If you have the opportunity please join us. I was wondering if you could help me? Folks need to hear and benefit from my real-life story dealing with relationships and chronic illness like MS. When I was going through my divorce my life was full of fear and concern that I would never meet anyone that loved me again. After learning how big of an issue this is for so many of us with MS, I took it upon myself to write this self-help memoir. This is my real life story and it’s not always pretty but it’s real and written to help others going through this same situation.
    “ Life Interrupted – It’s Not All about Me” is my real-life story dealing with marriage interrupted by multiple sclerosis. It could have been any chronic illness or disability and anybody’s relationship, but my reason for writing this book is the same. My goal is to help others in similar situations recognize and eliminate the growth of the relationship destroying “poor me attitude” which frequently accompanies chronic illness.

    By sharing my actual experiences with chronic illness and divorce, I hope to provide others with the knowledge, awareness and understanding intended to help them deal more positively with the emotional and physical stresses put on a relationship when life is interrupted by chronic illness or disability.

    Much of this information may seem obvious, but as I’ve learned the hard way, the obvious becomes clouded when life is interrupted by chronic illness or disability. Whether you are the patient or the caregiver this book is for you. If by writing this book, just one relationship is benefited it will have been a success and well worth exposing my past, literally making my life an open book.

    “After reading the entire book this afternoon, I have tears in my eyes as I finish it. What struck me as I read it, was that I felt I was seeing everything you said through your eyes. I was there with you. Your openness and frankness clearly spoke to me. You made every emotion clear without resorting to any psychobabble terms. It was a real person speaking right from the heart and it touched my heart. Nothing fancy, nothing slick just real life”.

    Rick Mansfield., Caring Coordinator , The First Congregational Church of Hopkinton MA.

    “I was touched by the honesty of such a humble man. One who is courageous enough to let the world read about his struggles with his disability, and how God is using this experience to change his life and the lives of others”.

    Sue Cellucci, Special-needs Educator

    I know that you, Nancy , are very busy helping others yourself, so I understand that you have limited free time, but if you have a moment please visit my website http://www.lifeinterrupted-nolonger.com . I even promote and discuss my personal experiences with ldn on my website’s blog. If you stop by please sign my guestbook and to become a member of the site if you would like. Thank you so much for your time.

    Have a great day and God bless,
    Chris

    • Nancy Sajben MD Says:

      Thank you for your comments Chris.

      In 1974, I did a research fellowship in Multiple Sclerosis with Wallace Tourtelotte, MD, at the West LA Veterans Administration Medical Center. Dr. “T” is the one who developed the IgG synthesis formula for spinal fluid. I helped care for 10 men who lived for years at the research ward, and for 800 outpatients with Multiple Sclerosis. Your story is their story. It is heartbreaking to witness how chronic illness can break a marriage and a family’s finances. I wish more members of Congress understood this on a personal level.

      Best wishes to you. Be strong. Stay close to God.

  3. Kirk Haver Says:

    Dr Sajben I am writing because of my contact w/ Dr. John Hong at NIH. I am neighbors w/ his daughter a came into contact w/him this way. I am a 49 year old caucasian male who has degenerative osteoarthritis in the spine and and a herniated, broad based bulging disk at the L5/S1 level causing back pain and sciatic pain in left and right legs. I started experiencing problems when I was 42. I have used PT/accupuncture/massage therapy/standard anti-inflammatory otc medication as well as prescription strength/chiropratic care/and yoga. All helped to one degree or another but were short term fixes. About 3 years ago Dr. Hong allowed me to try DM as an anti-inflammatory. The results were almost immediate. The next day I had more energy and the general malaise had subsided. The effect over the last few years has been to essentially raise the pain threshold so as to increase activity level (recreational and vocational) to an acceptable level. The main issue now seems to be over-doing activity and crossing that threshold and then I need to incorporate the other strategies to help w/pain and discomfort. I have not had any known side effects from the DM and it is simply a matter of remembering to take it each day 2x/day. If for some reason I forget I can usually trace back any increasing pain to that or to over exertion. DM has been a life saver to me and to others I have shared it with that have degenerative disorders (osteoarthritis/fibromyalgia).

    • Nancy Sajben MD Says:

      Thank you so much for your story. That is exactly what I have been seeing since I’ve been prescribing the morphinans dextromethorphan (DM) and/or naltrexone for various types of intractable pain, regardless of whether it is nerve, muscle or bone.

      I have yet to predict whether or not one of the two will work, nor can I predict which one the patient will respond to— or perhaps both. Not all respond. When it works, it is the most remarkable response I have seen in my 40 years in medicine. Astonishing. Simple. Nontoxic. Low cost.

      It is not a cure. If pain has been intractable for years, the medication usually must be continued, just as you discovered, but not all need to take it daily.

      Some of my patients whom I had treated with strong opioid medication every month for many years are now pain free on one of these medications, and able to function at or near 100%. Opioids relieve pain and they create pain. But they are less than perfect at relief, and I have seen patients cling to high doses despite pain that never drops below 10 on a scale of 10. They are afraid. Your story may potentially help many others. That’s the reason I posted this case.

      Now that so many of my patients are pain free, instead of seeing them monthly year after year, I see them 2 or 3 times a year to renew their medications and it is like old home week for both of us. I miss them and it is delightful to see them again but I am even more delighted that they are so much better than they have been for many long years.

      I would be thrilled to see these medications tried before anything else, especially before trying opioids. But patients choose otherwise and I honor their choice or they walk with their feet. They are as much a victim of morphine myths or the power of the epidural needle as anyone. All of the traditions in medicine and multi-million dollar PR machines are aligned with them, so they must think this doctor is more than a bit off center. Until several large studies are done — unlikely, as less than 1% of the NIH budget goes to pain research — I doubt other doctors will know about it, or will wish to try it. Financially I have no doubt it would save billions for the country, for Medicare, and for private insurers who will not always pay for compounded medication — about 70% of the time it is paid by PPO’s though never by Medicare. Many people would no longer be disabled. Truly, it has been astonishing to witness. Had I not seen it myself, I would not find it easy to believe. Imagine how many spine surgeries and other surgeries would be spared.

      I will be posting several cases in the near future as time permits. I hope Dr. Hong will do more basic science research on the pain pathways and the morphinans…..hint, hint.

  4. Nancy Sajben MD Says:

    You’re welcome. I think it is possible that LDN alone may work, but if RSD has been chronic for years or widespread, the combination of medication used in this case is more compelling to me. Rational polypharmacy. Keep in mind that if a person is on opioid medication, even Ultram, LDN cannot be used until they have stopped the opioid. Naltrexone is an opioid antagonist. But the most fascinating science on naltrexone is that it is a profound anti-inflammatory acting on the microglia in the central nervous system. It affects pain pathways centrally. It may work in one hour, one day or one month, based upon what I have seen. Could it require several months for some patients? I cannot answer that.

    • Terri Lettau Says:

      I take LDN 4.5mg for about 8 months for severe Rheumatoid, Should I be taking higher doses to help with severe inflammation & Pain?
      Please help, I go to my Dr friday, maybe he will prescribe more.
      Thanks, Terri

  5. Shirley Sayer Says:

    I suffered low back pain for 6 years when LDN was Rx by Dr. Sajben. I had been on many different opioid meds., and could get my pain down to 2 or 3 at best. Finding my dose took some time, but at 15mg twice a day, I found complete relif! I stayed on this dose about 2 months and gradually discontinued. I had 1 day of pain on 3/30/10. Bending over, a sharp pain seared through my back. This restarted slight low back pain (which seemed like a bad memory). The pain went to a 6+ within a 4 hr. period. I was ready to dig out an old bottle of Norco, because the pain was very bad. Instead, I called Dr. Sajben. Smart move. She advised LDN @ 15mg until the pain stopped. By bedtime, I had taken a total of 45 mg. and went to bed doubting I would get any sleep. I arranged to see Dr. Sajben the next day thinking, “here we go again”. Amazingly. I awoke PAIN FREE! I called to cancel my appt.
    Thank you Dr. Sajben. I call this a miracle drug! I will stay on 15mg., until I feel “safe”. Shirley Sayer

    • Nancy Sajben MD Says:

      After six years of low back pain and sciatica, opioids never fully stopped pain. By October 2008, she was on Oxycontin 200 mg daily, when naltrexone 500 micrograms was given for constipation. That caused her to become pain free overnight and Oxycontin was stopped without any side effects.

      Naltrexone was increased over the next few weeks to 15 mg twice daily with total relief of low back pain and sciatica. She stopped naltrexone, had no back pain or sciatica for 9 months.

      Yesterday pain acutely escalated to rating of 6 on scale of 10. Naltrexone was resumed, increased rapidly to 45 mg and she woke pain free this morning, less than 16 hours after resuming naltrexone.

  6. Faith H. Kung Says:

    Hi Dr. Sajben,

    I am fellow physician who happens to suffer from RSD secondary to a bunionectomy. I tried to get iv ketamine through Dr. Mark Wallace who was willing to do it, but the UCSD IRB denied his application. Through Googling I found your website. I would like to give Naltrexone a try. How do I go about making an appointment to see you? Do you see patients on Mondays and Fridays. Those are the days I can get away from the hospital. Thanks.

  7. David Bornstein Says:

    My daughter has been on Oxycodone for 4 months for nerve pain/RSD after a shoulder injury with muscle tear and brachial plexus injury. How do we get her off the Oxycodone so we can try the Naltrexone? We had been looking into Ketamin but it seems that Naltrexone might be the way to go. She’s tried Lyrica and Noratryptaline but the side effects have prevented getting her to a therapeutic dose. Thanks for your informative blog!

  8. jamianne@charter.net Says:

    Hi Dr. Sajben,
    I have had an SI joint fusion & fusion of s1 l5. I’ve been diagnosed as failed back surgery and my cat scan has shown an incomplete fusion. I have been scouring your site for info on chronic pain. My doc has agreed to prescribe LDN at 4 mg but I see varying doses on your site. Do you just keep adding until pain relief is achieved? I see 12 mg on one of your cases, is that the highest you would prescribe? I guess I’m looking for a safe range to try and period of time before giving up. I hope you can post more success stories with people that do have mechanical or bone pain. Thank you so much for such a valuable site with so much information!!
    Jami Bishop
    Rogue River, OR

    • Nancy Sajben MD Says:

      Persons with Multiple Sclerosis are limited to the range of 1 to 4.5 mg, usually 3 mg, because they may develop spasticity wtih higher doses.
      But I have found no limitation in dosage with most individuals who have other conditions including pain.
      The rare person may experience mental confusion, very rare. It does not have to be taken at bedtime [old literature].
      For someone with difficulty tolerating average doses of medication,or for Multiple Sclerosis, it is best to begin with 1 mg.
      The FDA approved tablets of 50 mg can be divided into 2 or 4, which is less costly than compounded capsules.
      I have rarely used doses as high as 75 mg daily.
      Good luck. Let us know how you do.

  9. Maria Says:

    Hi, Dr. Sajben! I am a 26 year old female with RSD/CRPS in all four limbs. I am a former collegiate athlete, and my RSD/CRPS resulted from running injuries in my feet. I am about to start LDN, and I cannot wait! It sounds like it is such a revolutionary treatment! This illness is threatening to disable me. I am a patient of Dr. Schwartzman’s and have done the inpatient and outpatient ketamine infusions. They worked, but my pain has come back again full force.

    I am graduating with a Master’s Degree in Clinical Social Work with a concentration in Mental Health in May with a 4.0GPA. I have no idea how I managed to complete this degree in such awful pain, but I am looking forward to brighter days. I am currently doing my clinical hours in a hospice where I counsel the dying and their loved ones. I hope to find remission soon so I can continue to help others with terminal/acute/chronic illnesses.

    Thank you for all you are doing for us!

    -Maria xoxoxo

  10. Maria Says:

    Hi, Doctor! Thank you so much for your response. I think you are such a wonderful example of what a doctor managing pain should be like. You sound so empathetic and compassionate, and that is so difficult to find. You are a gem!

    I’ll keep you posted on how I do with the LDN.

    God Bless! xoxo

  11. Windy Says:

    I have researched LDN for many months, I started taking it compounding it myself since my Dr says he does not want to help me with my CFS/Fibro issues. The 2nd day was amazing I felt less pain by the 5th day I could walk again all on only 1.0 ml!! its an amazing treatment..

  12. Jill Holmes Says:

    My daughter was diagnosed with Complex Regional Pain Syndrome (CRPS)/RSD in February 2011. The second day after starting swim practice, she was in level 9 pain. She had injured her left foot previously and this is where the pain started. Pain continued to spread up the leg through her hip. She was diagnosed right away and received physical therapy. We were told most cases resolve within a year. She was prescribed gabapentin which did not resolve the pain and left her incapacitated with side effects. Then Lyrica, which resulted in an allergic reaction. She continued with physical therapy, and in addition to her strong will, she was able to get off crutches and used a cane intermittently. Still, she was always in pain coupled with the other symptoms that come with this disorder. Simple physical activities such as walking were limited.
    I spent countless hours searching the internet trying to gain a better understanding of CRPS and to somehow find something that might work. Last September, my daughter’s condition took a drastic turn for the worst. She was wheelchair bound, level 10 pain, and unable to attend school. Again, more medications were tried that were not successful and once again came with a host of debilitating side effects. Weeks passed.
    Then everything changed. I found a posting on low dose naltrexone and after more searching, I found Dr. Nancy Sajben’s website. I am so impressed with Dr. Sajben. She is a kind, compassionate physician who truly cares about her patients. She listened to our plight. She spent time with us explaining everything and answered all of our questions. She explained that each patient is unique and their pain management varies in the types of medications that may prove to be effective. We left with several prescriptions, including LDN, and for the first time in a long time – hope. The effect of the LDN was almost immediate and with no side effects. The doctor worked closely with her dose until the pain disappeared entirely!!! With 3mg of LDN a day, she is back in high school and looking forward to college.
    I don’t know how to put it into words, just how deeply thankful we are to you (Dr. Sajben). Dr. Sajben, your approach to pain management has changed our lives forever. I am so thankful for the hours you spent to create a website that made it possible for us to learn about effective approaches to pain management and to find you. Without access to the information on this site, and an appointment with you, I shudder to think about what the future held for my daughter. Thank you so much!

  13. Dr Edmond O`Flaherty Says:

    I am a primary care physician in Ireland. I have been prescribing LDN for 9 years and it has utterly changed the lives of hundreds of people. The main conditions I see are fibromyalgia, chronic pain, MS, various cancers, Crohns/UC, chronic fatigue/ME, several other auto-immune diseases and one case of Interstitial Cystitis where a 30-year woman had “a fire in her bladder 24 hours a day” and who was due to have a cystectomy (bladder replaced by a plastic bag!) a month later than when she came to me by chance and soon became well.
    TV2 in Norway made a film about LDN in 2013 which was seen by 10 % of the population. The number using it there went from 300 to15,000 in a few months. It is now on the website of http://www.lowdosenaltrexone.org in America and I was the only doctor outside Norway who was involved. I agreed to partake if they subtitled it in English which they did.

  14. Nancy Sajben MD Says:

    Astonishing coincidence! You posted this just one hour before I posted on Norway’s commitment to treatment of chronic pain. I found your comment only after. Thank you so much. Opioids cause pain. Naltexone relieves, and often resolves pain.


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