Today's post from neuropathyjournal.org (see link below) gives some excellent advice when it comes to the psychological effects of neuropathy and the chronic symptoms which can make your life so miserable. It makes the vital point that depression and anxiety brought about by chronic neuropathy are often confused with the disease itself - even by the doctors who are treating you. Always remember, you were a perfectly normal, sane and healthy person before neuropathy struck and it's the results of constant pain and discomfort that have brought about your current mental problems but they are two separate things and neuropathy itself doesn't cause depression - it's the relentless symptoms that do that. Don't let your medical adviser tell you otherwise. Psychologists and pain advisers often want to go way back into your history to search for reasons for your psychological imbalance, when the reason (nerve damage) is staring them in the face. This article is well worth a read and although you may not agree with everything, there are many useful pieces of sound advice here.
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS0
Article by Scott Berman MD, Psychiatrist and Neuropathy Patient, who is a Medical Advisor and Member of the Board of Directors of the NSN.
Author of: Coping with Peripheral Neuropathy From Support for Neuropathy: Facebook Chat October 6 2011
There is a strong overlap between neuropathy pain, anxiety, and depression. Each of the three can raise the risk for having the other two. 30-60% of patients with chronic pain develop feelings of depression and anxiety. Pain and depression co-occur 30-50% of the time and each can cause the other.
Anxiety: Anxiety is to be expected in the face of being diagnosed with a chronic illness. Anxiety can take many forms. There is a difference between anxiety and chronic anxiety. It may be specific worries about the illness such as:
• Fear of relapse or worsening
• Fear of disability
• Fear of isolation
• Fear of stigma
• Fear of pain
There is no reason to suffer from chronic anxiety. There are very good treatments, including:
Non-medication methods:
Psychotherapy, including Cognitive-Behavioral Therapy (CBT): CBT involves learning to recognize the negative thoughts that lead to anxious feelings. Behavior therapy can include relaxation technique, gradual exposure to feared situations, and other techniques that allow mastery of fearful situations.
Relaxation training, which includes breathing exercises and progressive muscle relaxation
Mindfulness based stress reduction (very well studied): http://www.mindfullivingprograms.com/index.php
Mindfulness based stress reduction combines aspects of meditation and yoga. It is usually done in an 8 week group format although some people are offering online courses. The books and tapes are also available for sale although I recommend finding a trainer. Many hospitals and complementary/alternative medicine centers use it. It has a good track record in helping people with chronic illnesses cope better.
• Spiritual and faith based help.
• Exercise, Massage and Yoga.
Medication treatment:
“Benzos” (benzodiazepines) include valium, klonopin, Ativan, Xanax
SSRIs (Prozac, Lexapro, Celexa, Paxil, Zoloft): help with panic attacks, PTSD, generalized anxiety disorder, others
DEPRESSION
• Is it mental or physical?
• Is it psychological, neurological, or medical?
• Are the symptoms really caused by your mind?
• Why these questions are a sure sign of people who are not up to date about the mind-brain-body connection.
• Why treating depression is often ignored? There are a number of reasons.
• The patient is unaware that he or she suffers from depression.
• The patient is embarrassed to ask for help.
• The physician fails to make the diagnosis.
• The physician fails to treat the depression or under-treats it.
• The patient is embarrassed to go to a psychiatrist.
• The patient’s doctor or family is embarrassed to talk about psychiatric care with the patient.
• The patient is afraid that the doctors think their neurological symptoms are “all in their head.”
Psychiatrists have terms for illnesses that are essentially psychological but show up with lots of physical complaints: “somatoform disorder,” “somatoform pain disorder,” and “hypochondriasis.”
I have worked with lots of patients who have been labeled “head cases” by other doctors and I have learned a lot. First, my own illness convinces me that someone can be essentially mentally healthy, get stricken with a chronic and incurable illness, and then develop an incredibly long and unbelievable story (except to fellow sufferers) about their illness. I am frankly skeptical about “psychological” pain disorders. The many patients in whom I have uncovered underlying other medical problems have been very high.
POINT: Depression in neuropathy (as well as in other rare and “invisible” diseases) is often confused with the disease. That is, continued problems in function are often attributed to “psychological” or “psychosomatic” (misused word) issues. Patients often feel insulted when psychotherapy/psychiatric care is suggested. Bottom line: all pain is real (unless you are faking), and physical symptoms most often have physical causes. The role of the psychiatrist/psychologist/counselor is to help with the emotional issues that arise from the stress of a medical disease.
Symptoms of depression:
• Persistent depressed mood or loss of pleasure in previously enjoyable activities
• Sleep changes (difficulty sleeping OR sleeping too much)
• Loss of interest
• Feelings of guilt or worthlessness
• Low energy
• Poor concentration
• Appetite (very little or increased)
• Agitation, pacing OR slowing down, moving very little
• Suicidal thoughts or plans
POINT: In neuropathy sleep changes, low energy, poor concentration is common but having 5 out of 9 symptoms above should trigger an evaluation for depression.
Depression is treatable in the face of virtually every known physical disease, including cancer and AIDs. So you should expect to be able to have your depression treated with good responses.
The best treatment for depression is a combination of psychotherapy and medication. Some people prefer therapy or counseling without medication because they already feel over- medicated. Other people feel so bad they can’t even talk in therapy and do better when started on medication.
Antidepressants work (based on a study of antidepressants in pooled neurological disease
Some antidepressants also treat pain or anxiety
Antidepressants:
• SSRIs (Prozac, Lexapro, Celexa, Zoloft, etc.)—well tolerated but don’t do much for pain
• Tricyclics (Amitriptyline, Nortriptyline, others)—may help with pain and depression
• SNRIs (Effexor, Pristiq, Cymbalta)
• Others: Remeron, bupropion, vilazadone
Coping
Self-Management Strategies
• Used in many chronic illnesses with very positive results
• Can reduce disability and improve psychological well-being
• Can help with catastrophising, fear, and avoidance
• Dysfunctional beliefs about pain can become a central problem
• Pain self efficacy questionnaire: Pain Self-Efficacy Questionnaire You can take it now and at later points to see if you are making progress
• Stanford University Chronic Pain Self-Management Program : CPSMP
• Online Disease Management Program: Click here to sign up for online disease management program
Topics include:
• Managing frustration, fatigue, pain, and isolation
• Appropriate exercises for maintaining flexibility and endurance
• Appropriate use of medications
• Techniques for dealing with friends, family, and health professionals
• Healthy eating
• Making informed treatment decisions
• Disease related problem solving
• Advanced directives
POINT: It is not clear to me whether this program specifically addresses the needs of the Peripheral Neuropathy community. At some point we might want to develop our own materials for a Neuropathy Self-Management Program. The topics are a good outline of a lot of what we might cover!
Reorganizing your activities:
• Things I can no longer do (for example, power walking).
• Things I couldn’t do before, but can now (have time to write and do crafts).
• Things I do the same as before (like sitting in the sunroom watching a sunset).
• Things I can still do, but differently (can go to a mall, but need a wheelchair).
• Things I can do differently, just not ready to yet (such as go to a Phillies game)
(from Debbie Dawson, RN, Peripheral Neuropathy Patient)
Jobs/Recreation:
• Ask yourself exactly what part of your previous job/activity you enjoyed
• Talk with vocational/occupational specialists
• Don’t beat up on yourself
• Organize yourself and set small goals you can meet
• Try something new
• Know your ADA rights if you stay employed, and use the Job Accommodation Network (www.jan.wvu.edu Or 800-526-7234)
AVOID EXTREMES:
• You can tough it out with too little help OR become overly dependent on your doctor and family
• You can keep your illness a secret and avoid thinking about it OR you can discuss it openly and become self-pitying
• You can ask for help and risk being a burden OR be too independent and isolate yourself
• You can push yourself to the limit and risk getting sicker OR you can do too little and be more of an invalid than necessary
• You can be angry about your illness and then bitter OR you can focus only on counting your blessings and risk being self-delusional
(From The Chronic Illness Experience by Cheri Register)
SELF ADVOCACY
• Keep up to date
• Keep routine health care up to date (flu shot, other vaccines)
• Quickly and aggressively treat any other condition—you can’t afford to wait!
• Remember, just because you have neuropathy doesn’t mean you can’t get other illnesses.
• Reduce “excess disability” that is impairments in function from other causes such as other illnesses
Beware of advertisements and self reports of improvement from particular drugs or treatments:
• Self reports often are positive and careful studies often show no benefit—for example modafinil seems very helpful for fatigue in MS in self reports but showed no real benefit in a careful study
• Self reports can be influenced by placebo effects.
• Self reports can be influenced by those who actually report: it is possible that people are more likely to post a report of a benefit than of no benefit. People with great benefit or great side effects might post more often than people with mixed results. People with minimal symptoms in the first place might be less likely to be active in a support group either in person or online. Since we don’t know the characteristics of those reporting or choosing to join, we can’t draw good conclusions about actual results
• Advertisements are from people selling a product!
• Anything that promises 100% response is 100% garbage
CONCLUSION: Buyer Beware! While it is very useful to search the internet, Facebook, and support sites such as patientslikeme.com and disease specific sites, you have no guarantee of safety or scientific validity. On the other hand you might find useful information that general physicians might not be aware of.
SUGGESTION: Gather information from groups and online, and review it with qualified health professionals
CAVEAT: Even qualified health professionals have prejudices and distortions. University of Maryland Medical Center has a very popular Integrative and Complementary Medical Center featured in recent magazine article and multiple hard core “Western medicine only” doctors were quoted as dismissing it as quackery
EVALUATE: Is the drug safe in general? Have a lot of people taken it for other conditions? What are the risks? What are the costs? Is the treatment part of a big money-making scheme?
2ND CONCLUSION: You have to decide if using a medication or a treatment which is experimental or off-label is right for you. But go in knowing all the risks and benefits.
Staying Up to Date
Getting the internet to send you updates:
PubMed Alerts:
• Go to Government Publications:
• Register and get a username and password
• Log in
Go to National Institute of Health:
• Take the tutorials to learn how to search for articles
RESOURCES:
Information
• The Neuropathy Support Network and request the FREE DVD “Coping with Chronic Neuropathy”
* The Neuropathy Journal patient written and Neurologist endorsed reliable information
• Peripheral Nerve Society: http://pnsociety.com/
• The What Is Neuropathy and its Causes providing all the information you would ever need by Dr. Waden Emery III, MD FAAN Neurologist
https://neuropathyjournal.org/coping-with-neuropathy-1-0-pain-anxiety-and-depression/
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