Today's post from neuropathyjournal.org (see link below) covers many of the ways neuropathy is currently treated and is written by renowned neuropathy patient LtCol Eugene B Richardson. It is full of useful tips and various truths your doctor may not tell you. It is one man's opinion (backed up with useful references) but as you may already have discovered, an experienced neuropathy patient is often the best source of advice. He also states that many treatments work differently for different individuals and that is very important to realise because neuropathy rarely follows patterns of behaviour or response. Certainly worth a read.
LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS
FACT: Neuropathic pain does NOT respond to ‘normal’ pain medications.
Pain signals from an external stimulus like a cut or from an internal broken bone are treated with many well-known treatment options for pain.
Pain signals from damaged nerves which send real, but faulty signals to the brain must be treated with other options which currently are limited until research provides more options at the clinical level.
WARNING: One of the most dangerous aspects of treating your pain OR symptoms in a neuropathy, is the concern that either you or the doctor will then ignore the CAUSE or TYPE of your neuropathy. Knowing the TYPE can often point to a possible treatment and NEVER accept a diagnosis of idiopathic as it adds nothing but confusion. Treating pain is to treat a symptom, but medical care must go beyond the symptoms in working with the neuropathy patient.. To understand the problem with a diagnosis of ‘idiopathic’ click here:
Drug Options
The majority of patients with neuropathic pain are currently treated with two classes of medication.
The anti-depressants and the anti-seizure medications either alone or in combination work for many patients to reduce such pain. Some of these options would include Nortriptyline in the first class and Lyrica in the second class. Speak to your doctor about the options, but recommend that you first consider the anti-depressants as these may have less side effects. Both the anti-depressants and anti-seizure medications reduce neuropathic pain, even if medicine is not totally sure why they work. This information is from the book by Norman Latov, MD PhD of Weill Medical College, Cornell University in his book for patients listed in our RESOURCE tab. (Ref: #4)
SPECIAL ALERT 2014: The one issue that is new is that the use of the drug Cymbalta for a protracted time period, as it has been reported that upon withdrawal from the drug there may be serious problems according to one recent news article on the subject. I personally think anyone who has taken the drug Cymbalta may want to speak to the doctor about this issue and speak to them about the use of Nortriptyline as an alternative. (Nortriptyline is an older drug with a proven track record and taken at night it helps you sleep!).
Most patients get about 85% relief and a few are lucky with 100% relief, but until there are better medications developed by research, we are fortunately to have these options.
Dr. Latov (Ref: #1) speaks of these and other medications and they do help many neuropathy patients. However, like all medications sometimes the side effects are worse than the symptoms. Each patient must decide if they are worth using if the pain is only at the nuisance level. The dosage and the combinations of these medications must be worked through by the patient with the doctor in a patient doctor partnership of trial and error. As of now, I know of no other way to find what works for you.
Other patients have been prescribed Lidocaine patches for burning pains as noted by Dr. Latov and patients report that these help reduce the burning.
I have found that the burning sensations respond best to compounded topical creams and not to the oral medications. Compounded topical creams are being prescribed more often by doctors and the benefit is the absorption into the blood is limited and it tends to stay concentrated to the area you need it the most according to Neurologist Corey Hunter (Ref: #4). Some of the ingredients physicians use in these compounds includes Lidocaine, Ketamine, Gabapentin, and Amitriptyline, mixed by a compounding pharmacy in percentages as prescribed by the physician.
For patients with an immune mediated neuropathy the use of intravenous immune globulin (IVIg) has been very effective in reducing pain in sensory neuropathies while providing more muscle strength in motor neuropathies and protecting the nerves from more damage. It works! See patient IVIg experience click here:
2015 Update on Promising Research: The Foundation for Peripheral Neuropathy in their E News March 2015, noted in a follow up of reported 2013 research a report published in the Annals of Clinical and Translational Neurology and Science Daily, noted that with “two low dose rounds of non-viral gene therapy called VM 202 patients had significant improvement of their pain that lasted for months!
“Those who received the therapy reported more than 50 percent reduction in their symptoms and virtually no side effects,” said Dr. Jack Kessler, lead author of the study. “Not only did it improve their pain, it also improved their ability to perceive a very, very light touch.
“VM202 contains human hepatocyte growth factor (HGF) gene. Growth factor is a naturally occurring protein in the body that acts on cells, in this case nerve cells – to keep them alive, healthy and functioning. Future study is needed to investigate if the therapy can actually regenerate damaged nerves, reversing the neuropathy.
“Patients with painful diabetic neuropathy have abnormally high levels of glucose in their blood. These high levels of glucose can be toxic.
“We are hoping that the treatment will increase the local production of hepatocyte growth factor to help regenerate nerves and grow new blood vessels and therefore reduce the pain,” said Dr. Senda Ajroud-Driss, associate professor in neurology at Feinberg, an attending physician at Northwestern Memorial Hospital and an author of the study.
“Right now there is no medication that can reverse neuropathy,” Kessler said. “Our goal is to develop a treatment. If we can show with more patients that is a very real phenomenon, then we can show we have not only improved the symptoms of the disease, namely the pain, but we have actually improved function.”
“A future, much larger phase three study will soon be underway. To read the full article Neuropathy: Relief for diabetics with painful condition. ”
What about muscle cramps?
Muscle cramps are common in neuropathy patients. It is always a good idea to report such muscle cramps to your doctor and determine if it is indeed related to your neuropathy or other conditions. Levels of potassium, calcium, salt, and other substances critical to proper function of muscles may need to be tested to see if they are low.
Other patients have had levels of potassium, calcium, salt, and other substances critical to proper function of muscles tested to see if they are low. Then have the doctor prescribe a supplement at the correct dosage for you.
If you take a diuretic, muscle cramps are common and may require supplements, so speak to your doctor.
Patients have found that eating a banana at night keeps the cramps away, or eating a Tum to increase calcium, or eating salty olives or pickles if your salt levels are low work.
Some neuropathy patients have noted that the drug Venlafaxine resolves restless leg syndrome and the associated leg cramps. Dr. Levine states that this drug changes the levels of serotonin and norepinephrine (two neurochemicals) in the spinal cord and can be effective in patients with neuropathy.
What About Exercise?
Did you know that the wrong type of exercise will force damaged nerves to work and increase the pain! See article at:
How should a neuropathy patient exercise? Consider ordering a copy of the brand new DVD from Matt Hansen the expert as his perspective on exercise for neuropathy is perfect and understands what we can and cannot do. Yet Matt makes it possible for us to exercise WITHOUT the increase in neuropathic pain, keeping muscles as strong and flexible as possible. To see article on DVD click here: When ordering enter the special code NSN 10 and Matt will give 10% of your purchase price back to support the work of the NSN!
If you want a complete discussion of medicines for the treatment of neuropathic pain, read the book by Dr. Latov.
Other options
Dr. Latov in his book and many neuropathy patients have reported reducing pain by the use of minerals such as Alpha Lipoic acid (600 to 800 mg) especially pain from diabetic neuropathy. Research suggests that vitamin C is important to protecting nerve cells and the lack of vitamin E can actually cause neuropathy as noted by Dr. Latov.
You see many ads for B supplements in what I call a shotgun approach to the B vitamins. For me it is like shooting a mass of vitamins at an unknown target! We know that a shortage of certain vitamins, especially the E and B vitamins, is known to cause neuropathy. Yet too much B6 can cause it! I like the suggestion of Dr. Latov that the patient have such levels tested (see his book for specific information) to determine any shortage and then treat the identified target rather than using a radium shotgun blast at an unknown target!
Good nutrition is very important for everyone, but it is especially important for neuropathy patients. Why? First good nutrition helps protect and heal the nerves. Secondly, the lack of essential vitamins can cause neuropathy according to Dr. Latov! Neuropathy caused by long term alcohol abuse may be due more too poor nutrition than the alcohol. Read his book.
In the book by Mims Cushing’s, (Ref: #2) patients report that another helpful option is to soak your feet in cold tap water for 15 minutes before going to bed. The cooler water helps by calming the nerves. DO NOT USE FREEZING ICE WATER as with sensory neuropathy this could cause damage to the skin. For those with the sensation of very COLD feet, these patients have found that doing the same with warm tap water (NOT HOT) has a soothing effect.
Acupuncture has been shown to be effective for pain reduction in some patients and this is supported by small studies showing its effectiveness.
Again, it is what works for you in treating the strange effects of neuropathic pain from damaged peripheral nerves.
A Word About PODS (Postural Orthostatic Tachycardia Syndrome)
Do you know how many times over the past 40 years I was sent to the Cardiologist because ‘I was having a heart attack’ only to be told my heart was fine and ask, ‘Why was I here?’ The Tachycardia (silent as I did not feel it), was never understood or recognized. It was often not even related to standing as I has been assumed. Having been diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Small Fiber Neuropathy (SFN) and with symptoms of Autonomic Neuropathy, it was a reality for me, but eventually this symptom went away while others were reduced when I began IVIg.
The relationship of the symptoms to Small Fiber Neuropathy was noted in a February/March 2015 Article in Neurology NOW (Ref #6) among other neurological issues. The article notes that there are significant disagreements in the scientific community about what drives POTS or even what symptoms are related to PODS. Symptoms related to PODS in this article include dizziness, lightheadedness, palpitations, near fainting upon standing and unrelated to standing the symptoms noted are fatigue, nausea, autonomic systems, fibromyalgia, and others often connected to several forms of neuropathy.
While prognosis is unpredictable, research in a 2013 large study from the Mayo Clinic presented at the 24th International Symposium on the Autonomic Nervous System noted that 18.2% of patients noted complete resolution of symptoms , while 52.8% reported improved but persistent symptoms two to 10 years after diagnosis.
Several suggestions were made in the Neurology NOW article to alleviate POTS including the simple idea of (1) drinking more water especially with increases in sodium. This simple solution helps expand blood volume and increase blood flow, but it may not work for some people; (2) appropriate exercise (see exercise DVD information noted above) to prevent blood from pooling in the lower extremities and other benefits gained from even low impact exercise.
Until more research confirms what is driving this REAL disorder and the related symptoms, patients just must find ways to cope and live around the illness.
DVD and the Behavioral Sciences
In this regard, remember what I have taught in the DVD “Coping with Chronic Neuropathy”. How you THINK about something, will affect your FEELINGS, which will in turn effect or influence your BEHAVIOR. It you think something is horrible, your feelings will be one of despair and your actions will reflect a sense of defeat. Always try to turn this around to a positive thought, however difficult it may be! It works.
You may also want to find a good psychologist or trained counselor, to explore cognitive therapy as in biofeedback or relaxation techniques, visualization techniques, or a trained specialist in healing arts such as yoga or ta-chi, to find ways to utilize your body’s ability to increase natural chemicals (serotonins) which we know reduce pain. Never underestimate the body’s ability to seek balance and healing.
Soothing music or sounds are a well-known way to relax and improve the body’s response to pain and there are music tapes or even therapists to help. This is why the noise of a water fall or watching a fish tank is so relaxing and healing.
Periods of slow deep breathing together with soft music or other relaxing sounds can be very helpful. Combine this with favorite images such as rain fall, snow showers, waterfall, and fall foliage in the mountains in the fall, or visualizing soft spring rains, baby birds, or whatever and you will be surprised how much it helps. Art therapy is often used to help patients visualize and express how they feel. I have been known to sing while walking my dogs using my power scooter with neighbors looking at me with strange looks, ‘Okay, he is gone’, but who cares.
Pets can offer so much in comfort and care if you are physically able to take care of them and afford them. As we have learned many times with the chronically ill and with veterans who suffer from PTSD pets are often essential for survival. For me they have become my ‘children’ to take care of providing more love and meaning to my daily life.
Opiates
Opiates are often used for break through pain and for some are very helpful when there is either a short term need or no other option.
However, my opinion after working with many patients attempting to stop the use of opiates is that patients should try every option carefully before using the opiates. The opiates often require increasing dosages with unwanted side effects that become more of a problem than the symptoms you are trying to address. A day does not go by, when a patient requests help to withdrawing from opiates.
For many patients the opiate drugs will eventually become more of a problem than your symptoms of neuropathy and the body will keep demanding more and more of the drug.
However, this is a very personal decision between you and your doctor, so work with the doctor to discover what does work for you as noted. If your doctor does not work with you on this, find another doctor as every patient is different. I would always tell a patient to get a second opinion regarding opiate use for neuropathic pain.
Remember for neuropathic pain, if you get 85% relief this is probably as good as it is going to get until medical research discovers better options.
Pain Management
A patient went for decades with severe back pain from multiple problems in the spine. Nothing helped. Then they tried the epidural from a Pain Management physician, which is the only thing that helped provide some relief after decades of trying.
This epidural uses Lidocaine and Depomedrol. The patient is sedated when the procedure is done and it is done under a machine that shows the doctor what they are doing on a monitor. It gave the patient 90% relief for the first 3 weeks and then 80% relief. The patient is crippled without this epidural. Unfortunately they need to be repeated and relief is often temporary.
Pain Management can offer many ideas for patients to find some relief from chronic pain including the possible use of spinal cord stimulators, implants, and other such instruments.
How do you communicate pain levels?
(To see article on opening doors with doctors click here.)
One of the most difficult tasks for a neuropathy patient is communicating neuropathic pain or symptom levels to anyone, while the patient fears they are crazy from the strangeness of these symptoms and sensations.
Too many patients in frustration or in a desperate need for relief will state something like, “If 10 is the worst level, than my pain is a 20.” This may communicate your desperation, panic, frustration, or anger, but otherwise is not helpful to the doctor or you.
This is where patient awareness of the pain scale 1 to 10 is very important as you communicate with the doctor, working through the issues of what works and what does not work. This process requires a doctor and patient who LISTEN and HEAR as listening and hearing are two different tasks. You know a doctor is listening if they do not cut you off after you share for 3 seconds and if they can repeat back what you just said!
Remember, if 10 is the level of pain where you pass out and 1 is just a nuisance, then 5 is where your ability to perform daily tasks become very difficult and by 6 impossible. With practice, it will amaze you how skillful you can become in judging your pain or symptom level.
There are times when pain or other symptoms are better expressed in a range over a period of time. Examples would be the burning sensations have been a 2 to 4 or a 4 to 7. This will help you and the doctor see where you are with the medications. But remember, if you get 85% relief from neuropathic pain, this may be as good as it gets with current options. But remember, if you get 80% relief from neuropathic pain, this may be as good as it gets with current options.
A Note of Caution:
One final note of caution for medicine too often wants to dismiss the neuropathy patient rather than spend the time for a number of reasons to find the cause or type of neuropathy. It is not enough to treat these symptoms of a neuropathy. The physician must be willing to conduct the testing necessary in attempts to find and perhaps treat the cause or at least know the type as this often can point to a cause. Too many physicians have the attitude, there is nothing that can be done, go home, live with it. This attitude must cease, yesterday.
References:
#1 Norman Latov, MD, PhD, FAAN Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop, ANN Press, 2007
#2 Mims Cushing, You Can Cope With Peripheral Neuropathy (Ideas from neuropathy patients), with Dr. Norman Latov, DEMOS Publishing, 2009
#3 “Journal of the Peripheral Nervous System” published by the Peripheral Nerve Society.
#4 Dr. Corey W. Hunter, MD, Pain Medicine, Ainsworth Institute of Pain Management, New York, NY.
#5 Dr. Sean Levine, MD, FAAN, Professor of Clinical Neurological Surgery and Radiology, NYPH, New York, NY
#6. “Neurology NOW”, February/March 2015, Article: Taking a Stand (on PODS), By Amy Paturel, pages 44 to 47.
DISCLAIMER: The information provided is intended to be educational and informative and not medically prescriptive or diagnostic. All patients are encouraged to consult with their own medical doctor when considering any of the information contained within.
Copyright – 2014-2015 Network for Neuropathy Support, Inc., 501c3, dba as Neuropathy Support Network. This article or its contents may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author.
http://neuropathyjournal.org/how-is-neuropathic-pain-treated/
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