It is very exciting to have this resource as a way to structure the many research publications and ideas I come across in Pain Management, Neurology, Integrative Medicine and, yes, politics of medicine. I only wish I had had this tool decades ago so that I didn’t have to recreate the ones I’ve already reviewed and forgotten in the last 40 years.
Chronic pain is often much more difficult to treat than cancer pain. It is tragic that < 1% of NIH budget goes for pain research, though 10 to 20% of the population in the US suffers from chronic pain, an estimated 60 million Americans, and the conditions are more prevalent among the elderly. Persons of all ages that I see tend to be more debilitated, often with anywhere from 3 to 14 different identifiable pain syndromes.
Many, including physicians, mistake pain as a symptom, failing to understand the reorganization that has occurred in the central nervous system due to neuro-plasticity; and they overlook the associated co-morbidity causing insomnia, weight gain due to medication or inactivity, depression, anxiety, spiritual and financial burdens. The lives of families and friends are diminished along with the person who has pain.
In the future, as time permits, I’ll be adding publications and articles to the site and occasionally posting with a frequency yet to be determined, hopefully twice a month.
Goals:
- This website is dedicated to providing educational resources to patients and healthcare professionals regarding the current understanding of pain medicine, an interdisciplinary field
- To discuss evidence-based information to improve the lives of patients who choose to use these therapies under the direction of informed physicians
- To distinguish between harmful treatments, beneficial treatments, and treatments that can be safely integrated with conventional treatment
- To encourage communication between patients, families and providers
- To educate both patients and health care providers who need a more comprehensive knowledge base with current and accurate information
- To promote ongoing professional growth through networking in a setting where treatments can be examined together to enhance lives
Please bear in mind, no information in this blog is intended to diagnose or treat any condition.
The opinions expressed here are my own, and are subject to change as new research becomes available.
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Join me on this journey……
03/04/2010 at 10:54 am
Dr. Sajben: I have been looking at your website and am very interested in speaking to you. The work you have doing looks interesting, especially the LDN.
I have RSD and because of that, started a radio show called “Living with RSD”. It is a weekly show, concentrating on RSD and other chronic issues. My guests discuss various aspects of chronic pain management, both mental and physical. Could you contact me via email so we could talk about a possible guest appearance on the show?
Thank you and I look forward to speaking to you.
03/18/2010 at 12:28 pm
HI Thanslk for allowing my questions…I live in Northern Ireland and have been an LDN advocate for a full year now. In this year I have endeavoured to get relief from my rheumatoid arthritis using LDN and a variety of antioxidants including….Omega 3 1.5gr epa;Coenzyme b12;Lglutamine;vit c 2gr daily; and sometimes a powerful digetstive enzyme. Unlike the many others I have supported I am still struggling to get my inflammation under control and still experience sleep disturbance and fairly constant pain and discomfort which I have rsorted to controlling with 1/dose diclofenac, which I had weaned myself off but need again to get thjrough the days and nights.
I am untterly perplexed as to why I cant get the relief so many others achjieve. I have tried all doses from .5mg daily to a brief few days on 4.5. I cant tolerate more than 2.5 and even then I feel it back up in mys sytem after a bout a week.
HAve you any suggestions for me as to what I might try next? Id dearly love a wya froweard as I fear im in a constant battle betwen the ldn and raging uinflammation and joint damage that fels like its ongoing. HAving said this I no longer have thre crippling fatigue that completely floore me up to the end of 2009. ANy guidance would be most appreciated. Thankyou.
03/21/2010 at 11:34 pm
You might wish to consult with Dr. Pat Crowley in County Kilkenny, Ireland. Best wishes.
Nancy Sajben, MD
04/18/2010 at 12:45 pm
Hi Dr Nancy,
Both my friend, Barb F, and my sister in law, Nancy U, are your patients. I have suffered from chronic idiopathic neuropathy in my lower extremities9especially under my feet) for 18 years. Despite countless specialists, conventional and alternative treatments, I have gotten very little pain relief. I hear such good things about LDN and would like to at least give it a try. I reside in NYS, and no medical professional has heard of or tried any LDN with patients. I thought if my neurologist contacted you, maybe he would at least let me try LDN and see if it alleviates some of the pain? Hope to hear from you for some advice as to a course of action.
Sincerely yours,
Suzy Doehler
06/22/2010 at 11:12 pm
Suzy,
Sorry for the delay, but I have been working out details on this and have now posted information for long distance patients at the top of the website. Please refer to that and let me know if that meets your needs.
04/29/2010 at 10:19 am
Hello Nancy,
I seek help for my father who has gastric cancer. Doctors left no hope for him but we’d like to try LDN. Now he is on opiatic pain med. We know that he cannot continue with them while on LDN. What would be your suggestion – how to help him deal with pain? Can LDN itself help here? Or should we use some non-opiatic pain med?
I would be grateful for any information and siggestion.
Best wishes,
Natalia Smogulecka,
Wroclaw, Poland
06/19/2010 at 1:58 am
Natalia,
I am sorry to hear of your father. There are two MD’s who may be able to answer your question on LDN and cancer: Burt Berkson, MD, and Ian Zagon, MD. I have no experience on that.
Pain may be able to be managed with oral ketamine instead of opiates. You would need to find an MD willing to prescribe ketamine, and then another willing to prescribe LDN.
Sincere good luck to you.
05/31/2010 at 6:46 pm
Are you aware of any good research about injection of purified THC (marijuana) extract, in the treatment of humans or animals, for pain, nausea and etc.
06/19/2010 at 1:42 am
Pure THC is often not tolerated by patients. Cannabidiol (CBD) is better for symptom relief and is not psychoactive. California philanthropists have funded studies to find plants with CBD. They are being cloned and made available in the state.
See the research on CBD by GW Pharmaceuticals and the research from scientists in Israel, Italy, and Canada.
07/29/2010 at 7:14 pm
Dr. Sajben,
I’m trying to find out whether low dose naltrexone could work in a person who has rheumatoid arthritis IF the person continues to take immune suppressing medications such as remicade and methotrexate or do those drugs negate the possible benefits of LDN?
Thanks for your help.
Brenda
08/01/2010 at 1:23 pm
I don’t know if anyone can answer that question, and certainly there is no published research on it. I would not recommend stopping your disease modifying drugs. You may wish to try adding it, as long as you are not taking opioids.
09/14/2010 at 3:33 pm
Dr. Sajben, thank you for your website/blog! A great source of little promoted informaiton.
In your web article “Low Dose Naltrexone “LDN” and Dextromethorphan off label for Pain, RSD, Chronic Fatigue, Fibromyalgia, MS, Crohn’s Disease” ( http://painsandiego.com/2009/05/26/low-dose-naltrexone-ldn/ ) you mention the combination of LDN & DXM and provide info (as others do) on dosage for LDN but I am unable to find anything on dosage (or source medication) for DXM.
My wife and I would like to try and educate her local Dr. on this approach.
What is the typical dosage for DXM in this approach and what base medication would you use for the DXM (I don’t think DXM is provided in the originally developed pill form anymore – only cough suppressant mixtures s as far as I can tell)
thanks,
Phil
09/14/2010 at 10:56 pm
Phil,
I have dextromethorphan compounded in a *long acting form* in the same dosage as used over the counter, but less expensive.
I’d be happy to discuss with your physician if you ask him to call me. The important paper by Zhang et al,
posted May 26, 2009, is heavy on the science for a typical MD, but discusses glial dysregulation of pain pathways.
The understanding of glial mechanisms is the most important breakthrough in pain research in recent years.
One of the co-authors on that paper is Dr. Hong at NIEH, a branch of NIH.
As for dosage of LDN, what you see used by persons with MS is overly simplified for persons with chronic disabling pain.
03/26/2011 at 4:59 am
Dr. Sajben,
Thank you for all of your blog and your website, they are a wealth of information. I was Dx with RSD/CRPS officially 1/2008 and have done PT, regional blocks, 13 Lumbar Sympathetic Blocks, HBOT, I’m now on a medication cocktail (that doesn’t include Naltrexone) and it did include oral Ketamine for over a year but that was recently stopped. Now the RSD symptoms have started to worsen. The only common denominator I can find is the DC’ing of the oral Ketamine. Do you feel “oral Ketamine” can play an important role in keeping RSD in check? I read your case study about the RN that is now 98% pain free utilizing LDN. Do you feel LDN is another key Rx in fighting RSD?
I have another quick question for you. I know of someone else that has had RSD in the Vancouver, WA area. Her Neurologist was in practice for 30 years and just retired. She has been left with just her Primary Care MD whom has no knowledge of RSD/CRPS. Do you know of anyone in the Vancouver, WA or Portland, OR area that you can recommend?
In one of your posts you asked for input from patients that currently have a SCS. I currently have a Medtronic SCS it was implanted early 2010 and I ended up having swelling in my Lt (affected) foot/ankle every time I would charge the “re-chargeable battery”. No one at Medtronic could figure out the issue. I turned into their “human lab rat”. After several months of this I was told to switch from a rechargeable battery to a non-rechargeable batter. Thus another operation… which I did. After this surgery (I have a paddle with 16 electrodes) all 8 electrodes on the Lt side that used to supply stimulation to my Lt foot/ankle now hit my pelvic area – thus I can no longer utilize these electrodes. And out of the 8 electrodes on the Rt 2 are providing stimulation to my Lt foot and the other 6 are hitting the wrong areas. In addition to this I have had continual instances where I am getting a very sharp pain/ sharp twinge (like a jolt) around where the electrodes area. When this happens if I turn off the SCS the pain immediately stops. I’ve been on a conference call with a Senior Engineer of Medtronic and a local Rep in person with me to do reprogramming… The Engineer only wanted to know if the electrodes were putting out stimulation. He didn’t want to know what the amperage was at before I could feel it or in what part of the body the stimulation was felt. These should have been critical pieces of information. All he wanted to state was that the electrodes were working. As for the Sharp Pain / Sharp Twinges that continue to occur in the electrode area their Senior Engineer has no idea what is causing this. He asked me to run an experiment the next time it happened – I did exactly what he wanted and reported back the findings. I have yet to hear back from Medtronic. They do not want to back up their product and they are not willing to admit that their is a problem. Although I have 2 doctors including a Neurosurgeon that feel there is some type of fault in their product or that it is faulty. Hopefully this gives you some additional information you were seeking. Please feel free to email me if you would like to discuss further. I am continuing my uphill battle with Medtronic.
Thank you for all you do!
04/01/2011 at 3:15 pm
Dr. Sajben,
I was struck by lightning in 1993. Cluster headaches started in 1997. Had dual hemilaminectomy of c4 and c5 in 2005. The pain worsened after surgery and 9 months later was finally diagnosed with RSD.
I was one of the sponsors of the symposium this past fall on the glia cells and RSD thru RSDSA.org and am also one of the sponsors for this year’s symposium in Albuquerque to be held this fall.
I am the patient Jim Broatch emailed you regarding about 2 weeks ago. My doc may have called you today to setup a phone appt for long distance LDN info, etc.
I have been on Duragesic patch and Actiq since ’05 and my body is now very quickly building a tolerance to my opiates and I am in constant debilitating pain. I have RSD type 2 with very poor circulation in legs now and RSD is now systemic.
Just wanted to give you heads up of who Jim was referring to when he emailed you and hopefully Dr K called for a phone appt with you today.
I hope you can help!
Renee
04/05/2011 at 11:19 pm
Dear Renee,
Thank you for supporting RSDSA and research in pain. All of us at the workshop were inspired by being locked up together for almost three days – it was a learning feast.
I have spent almost all day today away from the office, instead of doing my work, falling behind by talking to wonderful people like you and doctors all over the country. Some may potentially benefit from long distance advice but that has been at times problematic, with many paths to error. It is certainly better coming for a short stay near my office. It helps to have the experience of several years work with a more expanded medication set and a variety of patient issues. It has been deeply rewarding, and I hope it will be for you as much as it has been for others.
Oh, and fly fishing……..I can only dream. I would love to do that someday. If we can get your body better, you have my request to send me a photo of your next fishing trip.
04/18/2011 at 3:11 pm
Dr. Sajben:
I have had RSD/CRPS since 2004 due to a cut sapphenous nerve in my knee during a surgery. I have had 4 other surgeries trying to repair the cut nerve to help the pain and things only got worse as it is now in my right leg. I really liked your research on RSD and the immune system. I also have had 5 sinus surgeries prior to the RSD. Up unti lthe cut nerve during surgery I was a healthy 45 year old male working 10 hours a day with a wife and 4 children. Now I am no longer able to work due to the pain. Do you have any suggestions for me for the infusions for my immune system. I have traveled to New York, Baltimore, Tampa and other top notch Hospitals / Physicians, but have not been able to achieve any significant relief. I now see 4 doctors for a multi-disciplined approach to try and best manage the RSD. I live off of hope and Prayer. When I saw your research I was excited as I feel like there is some kind of link between my RSD and my immune system. I would appreciate any advice.
Paul
04/18/2011 at 9:53 pm
Dear Paul,
There is information for long distance patients at the top banner. I would be happy to see you in my office.
06/26/2011 at 12:42 am
Dear Margaret,
I am so sorry. It is against the law for an MD to give medical advice without a history and examination.
09/05/2011 at 8:15 pm
Dr. Sajben: for information about Intaranasal Ketatmine
Backup/Details: Intranasal Ketamine
Background: Product profile
• Optimal dose is 3 to 5 sprays (30 – 50 mg)
• Absolute bioavailability PMI-100 = 35.5%
Therapeutic Index
• 15 X difference between analgesic and anesthetic dose
• Analgesic Dose of 50mg PMI-100 (50mg*35.5%) = 18 mg
• Anesthetic Dose of IV Ketamine (Ketalar® ) = 280 mg
Intranasal Ketamine Review
Pharmacokinetics, Dose Proportionality and Absolute Bioavailability of PMI-100 (Intranasal
Ketamine) in Healthy Volunteers, 2 period, cross-over, IV vs. PMI-100 (10, 30, 50 mg)
• t1/2 (h) = 5.8
• Tmax(h) = 0.42
• Bioavailability 35.3% [90% CI 22.3-55.8]
From: http://intranasal.net/Hospice/IN%20ketamine%20in%20military%20combat%20pain%20situations.pdf
I received a trial of intranasal ketamine for Osteoarthritis and Opioid Induced Hyperalgesia. I achieved good relief using 50-70 mg every 3-6hrs. The best thing that happened was that all the spastic muscle issues and cramping from the hyperalgesia stopped immediately. I was able to restart physical therapy exercises and even noted that I was able to recruit muscles that I had not been able to work on before. My current MD gave me just one trial but is reluctant to keep prescribing for off-label use. I will have to have a talk with him again and if he won’t relent I will need to seek another local MD. I have Medicare as well as VA and the time for changing MD’s and/or insurance is just around the corner. I have been on Vicodin for the last 15 years or so and have been using ultra low dose naltrexone 10 nanograms oral with my Opioid doses to prevent the development of tolerance and also to preclude addiction.
10/29/2011 at 4:50 am
I am trying to find a Compounding Pharmacy to prvide the Intra nasal Ketamine.
Where did Gerard Skibba get his?
My PM physician is willing to prescribe this.
It seems that some of the reluctance stems from the abuse of this drug socially.
Help please.
11/13/2011 at 9:47 pm
I have been very pleased with the results of my patients on nasal ketamine so far. It is much better than the oral ketamine I have prescribed for ten years.
I have one of the best compounding pharmacies nearby, and they do ship:
PJ’s Prescription Shoppe in San Diego, 619-223-5404
Best of luck.
11/10/2011 at 11:59 am
Dr. Sajban,
Thank you for your website. My husband suffers central cord pain (dysesthesia and allodynia) from bruising his spinal cord (C5/6 area) in a fall and is suffering other fallout from the injury. He just started taking 4.5 mg. LDN hoping that it might help the pain. It has disturbed his sleep so he will be taking it in the mornings. He also takes 20 mg. of zocor daily and is concerned that there might be complications with the liver. Do you think there is a possibility of the LDN helping the type of pain he has and do you have any qualms about his taking it while he takes zocor?
11/13/2011 at 9:53 pm
I am unable to predict effects of any medication, not even morphine is able to reduce chronic pain in everyone. But I do stress the need for polypharmacy especially for severe chronic pain.
I have never seen low dose naltrexone cause any liver problems. My addictionologist colleagues report liver problems only on 400 mg, not lower doses.
01/05/2012 at 1:24 pm
Dr. Sajban,
I Wanted to make you aware of this —
http://www.neuropathie.nu/gliopathic-pain/glia-as-target-for-new-analgesics-and-palmitoylethanol.html
Normast is quite expensive – but, it looks like the science is sound.
I am a patient with neuropathic pain – and, have tried both the tablets and the granules. I notice an immediate improvement with granules.
Sincerely
Scott
01/28/2012 at 6:40 pm
Thank you. I have no patient experience with this as yet but will trial it.
01/12/2012 at 4:33 pm
Hello:
I am a mother to a daughter with full body RSD after foot surgery, I too have taken my daughter to all the possible treatments in the US….We are trying the LDN. Normally she takes demerol and nasal ketamine. The reason I am writing is to ask about how hard was it to go from the opiate med to LDN and if you experienced jittery and like your body didn’t want to stop and what you did for yourself to get through till the LDN started working. May I ask how long it took for the LDN to start working for you. I only wish for my daughter to get through the rough part to just maybe it will give her relief as her life has been hell. Any help surely will be appreciated.
Thank you……Lorri
01/28/2012 at 6:47 pm
Dear Lori,
It is not legal for an MD to give patients medical advice without an examination in the office. I am sorry.
I would be happy to speak with your daughter’s physician if you wish to call me and find out details about doing that.
I have posted a link to a study on my newest page “Case Reports” [top left below photo, 1/28/12] showing pain reduction after detoxing from high dose opioids.
Most doctors are not aware that opioids create pain. That may be especially important in the setting of chronic pain.
That said, it is a patient’s decision to taper off opioids and try mediations that may have failed while they were on them.
Best of luck to you and your daughter.