Fatigue and Neuropathy
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.
Scott Berman, M.D. (Psychiatrist with CIDP) in his highly recommended book, Coping with Peripheral Neuropathy, How to Handle Stress, Disability, Anxiety, Fatigue, Depression, Pain, and Relationships, states on page 54 that “Fatigue is a fact of life for many neuropathy patients. Often our families and friends fail to appreciate this because ‘we look so good.’ In fact, in one study looking at fatigue in autoimmune neuropathy (“Fatigue in Immune-Mediated Polyneuropathies,” Neurology 53:8 November 1999, I.S.J. Merkies, et al), 80 percent of 113 patients had severe fatigue. The fatigue was independent of motor or sensory symptoms and was rated as one of the top three most disabling symptoms.”
Dr. Berman shares many practical ideas for adjusting to the realities of fatigue and insomnia in neuropathy. He serves as an officer on our Board of Directors and all proceeds from the sale of his book are donated to the Good Shepherd Rehabilitation Hospital in Allentown, PA. Scott’s book is noted in the RESOURCE tab of our website and can be ordered from there via www.amazon.com .
For decades now I have, like many of you, struggled with the fact of fatigue as one of the major components of my progressive polyneuropathy and found very little support or insight among too few medical professionals who often were more focused on what was NOT wrong rather than what IS wrong.
Poor medical attitudes toward neuropathy are still a major problem for patients in 2012! In the last two months I went on two major sites dedicated to helping patients and not one of them listed Peripheral Neuropathy as a major illness while more patients suffer from neuropathy than MS which is always listed! Why?
Recently a neuropathy patient struggling to understand the growing chronic fatigue shared his neurologists’ response and dismissive attitude as the doctor said, “take a nap” and then walked out. He asked, “Is this how far we have come in twenty years?”
So, what have I found works for me in dealing with the daily bouts of physical and mental fatigue?
FIRST, the importance of AFFIRMATION: No secret that I enjoy watching reruns of the Golden Girls TV show. Even my young grandson’s enjoy watching the humor which springs from the ordinary events of life Humor is one of the best foods for coping. Humor helps the body heal. This show brought great humor into my life with neuropathy. Then I discovered two special episodes on the recorded disc from season five. The two episodes are titled; “Sick and Tired” done in two parts, each one 30 minutes in length.
IDEA: Support group leaders and liaisons should consider using them to draw patients to support groups for discussion of the issues noted! ADVERTISE: Hear the Golden Girls on Fatigue, Failed Diagnosis and Humor at our Next Neuropathy Support Group Meeting!
You not only will enjoy the humor, but you will identify with Bea as she struggles to get a diagnosis for her chronic fatigue symptoms and an affirmation for her illness. You will identify with her mental pain when dismissed by one neurologist. You will celebrate the joy because of the healing provided by her supportive family doctor. Especially important is the scene at the end of part 2, when Bea finds a very ‘professional way’ to get her point across to the neurologist. Neuropathy patients will not feel so alone and may discover a way to laugh while watching a role model of how to respond to the dismissing doctor! If you are a neuropathy patient, you will identify and understand the emotional dynamics and you may find some healing humor to boot!
SECOND, don’t fight fatigue or apologize for it, as you are guilty of nothing. Fatigue is a real part of your neuropathy and you and your family deserve support while finding ways to live with it by adjusting your activities or discovering ways to decrease it.
THIRD, take rest periods during the day. I have found that it is not so important to go completely asleep as it is to just let your damaged sensory and/or motor nerves rest and not struggle even if for only 30 minutes.
FOURTH, I have just learned something that Dr. Latov suggests for reducing the symptoms of autonomic neuropathy and the digestive symptoms that often accompany, for example,the alternating symptoms of constipation and diarehea. REDUCE CARBS in your diet. I have discovered if I eat a breads, pancakes, waffles, and pasta, my exhaustion is WORSE especially after eating. Makes sense as blood goes to stomach to help digestion. But by reducing carbs and focusing on fruits and salads I reduce these symptoms of autonomic neuropathy, along with the fatique, especially after meals and it helped me feel a bit stronger all day!
FIFTH, if your breathing is a factor in sleeping, for whatever reason, have a sleep study done. I need to use a BIPAP machine. The neurologist explained to me that my neuropathy was affecting the nerves that help the muscles around my chest support breathing and for years I woke up with severe headaches due to lack of oxygen when I intermittently stopped breathing at night.
SIXTH, Dr. Berman’s book speaks about the factor of insomnia and I highly recommend his book and read what he shares. Between living with strong medications and pain at night, it is not surprising that neuropathy patients may be sleep deprived just when they need sleep the most. There are topical creams for any burning pain at night and solutions for the leg cramps that neuropathy patients often experience.
SEVENTH, you must continue to advocate for a DIAGNOSIS and FINDING THE CAUSE for your neuropathy. Do NOT permit a diagnosis of “idiopathic neuropathy”. Armed with your history and the testing that is available, the doctor can provide a diagnosis on the type and effects of the neuropathy, which often point in the direction of the cause. Having carried the unhelpful diagnosis of idiopathic neuropathy for decades, while my peripheral nerves where being damaged and eventually destroyed, this diagnosis only means that one needs to look further!
http://neuropathysupportnetwork.org/blog/2012/01/fatigue-and-neuropathy/
Scott Berman, M.D. (Psychiatrist with CIDP) in his highly recommended book, Coping with Peripheral Neuropathy, How to Handle Stress, Disability, Anxiety, Fatigue, Depression, Pain, and Relationships, states on page 54 that “Fatigue is a fact of life for many neuropathy patients. Often our families and friends fail to appreciate this because ‘we look so good.’ In fact, in one study looking at fatigue in autoimmune neuropathy (“Fatigue in Immune-Mediated Polyneuropathies,” Neurology 53:8 November 1999, I.S.J. Merkies, et al), 80 percent of 113 patients had severe fatigue. The fatigue was independent of motor or sensory symptoms and was rated as one of the top three most disabling symptoms.”
Dr. Berman shares many practical ideas for adjusting to the realities of fatigue and insomnia in neuropathy. He serves as an officer on our Board of Directors and all proceeds from the sale of his book are donated to the Good Shepherd Rehabilitation Hospital in Allentown, PA. Scott’s book is noted in the RESOURCE tab of our website and can be ordered from there via www.amazon.com .
For decades now I have, like many of you, struggled with the fact of fatigue as one of the major components of my progressive polyneuropathy and found very little support or insight among too few medical professionals who often were more focused on what was NOT wrong rather than what IS wrong.
Poor medical attitudes toward neuropathy are still a major problem for patients in 2012! In the last two months I went on two major sites dedicated to helping patients and not one of them listed Peripheral Neuropathy as a major illness while more patients suffer from neuropathy than MS which is always listed! Why?
Recently a neuropathy patient struggling to understand the growing chronic fatigue shared his neurologists’ response and dismissive attitude as the doctor said, “take a nap” and then walked out. He asked, “Is this how far we have come in twenty years?”
So, what have I found works for me in dealing with the daily bouts of physical and mental fatigue?
FIRST, the importance of AFFIRMATION: No secret that I enjoy watching reruns of the Golden Girls TV show. Even my young grandson’s enjoy watching the humor which springs from the ordinary events of life Humor is one of the best foods for coping. Humor helps the body heal. This show brought great humor into my life with neuropathy. Then I discovered two special episodes on the recorded disc from season five. The two episodes are titled; “Sick and Tired” done in two parts, each one 30 minutes in length.
IDEA: Support group leaders and liaisons should consider using them to draw patients to support groups for discussion of the issues noted! ADVERTISE: Hear the Golden Girls on Fatigue, Failed Diagnosis and Humor at our Next Neuropathy Support Group Meeting!
You not only will enjoy the humor, but you will identify with Bea as she struggles to get a diagnosis for her chronic fatigue symptoms and an affirmation for her illness. You will identify with her mental pain when dismissed by one neurologist. You will celebrate the joy because of the healing provided by her supportive family doctor. Especially important is the scene at the end of part 2, when Bea finds a very ‘professional way’ to get her point across to the neurologist. Neuropathy patients will not feel so alone and may discover a way to laugh while watching a role model of how to respond to the dismissing doctor! If you are a neuropathy patient, you will identify and understand the emotional dynamics and you may find some healing humor to boot!
SECOND, don’t fight fatigue or apologize for it, as you are guilty of nothing. Fatigue is a real part of your neuropathy and you and your family deserve support while finding ways to live with it by adjusting your activities or discovering ways to decrease it.
THIRD, take rest periods during the day. I have found that it is not so important to go completely asleep as it is to just let your damaged sensory and/or motor nerves rest and not struggle even if for only 30 minutes.
FOURTH, I have just learned something that Dr. Latov suggests for reducing the symptoms of autonomic neuropathy and the digestive symptoms that often accompany, for example,the alternating symptoms of constipation and diarehea. REDUCE CARBS in your diet. I have discovered if I eat a breads, pancakes, waffles, and pasta, my exhaustion is WORSE especially after eating. Makes sense as blood goes to stomach to help digestion. But by reducing carbs and focusing on fruits and salads I reduce these symptoms of autonomic neuropathy, along with the fatique, especially after meals and it helped me feel a bit stronger all day!
FIFTH, if your breathing is a factor in sleeping, for whatever reason, have a sleep study done. I need to use a BIPAP machine. The neurologist explained to me that my neuropathy was affecting the nerves that help the muscles around my chest support breathing and for years I woke up with severe headaches due to lack of oxygen when I intermittently stopped breathing at night.
SIXTH, Dr. Berman’s book speaks about the factor of insomnia and I highly recommend his book and read what he shares. Between living with strong medications and pain at night, it is not surprising that neuropathy patients may be sleep deprived just when they need sleep the most. There are topical creams for any burning pain at night and solutions for the leg cramps that neuropathy patients often experience.
SEVENTH, you must continue to advocate for a DIAGNOSIS and FINDING THE CAUSE for your neuropathy. Do NOT permit a diagnosis of “idiopathic neuropathy”. Armed with your history and the testing that is available, the doctor can provide a diagnosis on the type and effects of the neuropathy, which often point in the direction of the cause. Having carried the unhelpful diagnosis of idiopathic neuropathy for decades, while my peripheral nerves where being damaged and eventually destroyed, this diagnosis only means that one needs to look further!
http://neuropathysupportnetwork.org/blog/2012/01/fatigue-and-neuropathy/
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