Unfortunately fatigue is a central part of many neuropathies and especially the immune mediated neuropathies. It is central to many other chronic illnesses that affect the body’s immune system. The causes are often complex and many.
Dr. Scott Berman, in his book Coping with Chronic Neuropathy notes in chapter VIII “Dealing with Fatigue and Insomnia” that this symptom is one of the most difficult and challenging for the neuropathy patient. Dr. Berman is a Psychiatrist, a member of the Board of Directors of the NSN and a Medical Advisor. Scott lives with untreatable CIDP.
…that in one study looking at fatigue in autoimmune neuropathy 80% 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. (“Fatigue in Immune-Mediated Polyneuropathies,” Neurology 53: 8 November 1999, I.S.J. Merkies, et al).
For decades in living with untreated Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Autonomic Neuropathy (AN) and Progressive Polyneuropathy due to exposure to Agent Orange in Vietnam, I can attest to the facts noted above. While other major symptoms respond to treatment with Immune Globulin (IVIg), the symptom of severe fatigue continues as one of the symptoms that responds only temporarily to the infusions followed by several days of total fatigue following infusion and then with some lessening until the next infusion.
Dr. Norman Latov in his book “Coping with Peripheral Neuropathy”, states what I have heard other neurologists share, that the fatigue we feel, first appearing as weakness, increases as the weakness (or damage) of motor nerves expands. At this point with only a few muscles doing the whole job of lifting a leg or arm or carrying on autonomic functions, the body becomes weak and eventually extreme fatigue occurs. Think of a young child who tires easily because the muscles and nerves are not fully developed and only a few underdeveloped nerves or muscles are doing the job of moving!
On the other hand, to state the obvious, pain in some neuropathies does not help us sleep. Neuropathy patients must seek medical help in finding medications or other options which works for them. The medical practitioners have increased their knowledge in recognizing the reality of neuropathic pain. These strange symptoms from damaged peripheral nerves are present in sensory neuropathies. It is become less common for these patients to be told that it is all in their ‘head’ and are finally getting the help they need.
UPDATE ON FATIGUE IF YOU ARE ON IVIG (September 28, 2016):
Learned something else with my infusion yesterday. I got talked into getting 50 or 60 grams and could not figure out why I had such increase in fatigue, both physical and mental , when I was getting this dosage as they told me that was the dose for my weight. I forgot my line that ‘my body has not read your book” and discovered it was the excess IVIg! Yesterday I had my doctor reduce my dosage to the 40 grams which I was getting previously, and wow…. less fatigue etc…. even the day after. I have had the fatigue explained away in a number of ways, and fatigue is common in chronic illness, but then yesterday I read the brochure again that came from Gammagard. Guess what is NOW listed at top of the reactions? Fatigue and malaise!!!! I am considered going down to 30grams and see if that is even better. The point here is that each of our bodies are different an the brands of IVIg are different! Fatigue is a complex subject and deserves more research and attention as this as many have stated is one of the worst symptoms of many Peripheral Neuropathies.
Impact on family and friends:
Families and friends, as we all have learned, may not understand this reality since we “look so good” and may even believe/suggest that you are just lazy or unmotivated or worse. The best thing you can do for them is to have them watch the DVD Coping with Chronic Neuropathy which will be an education about the impact of any neuropathy on our lives.
Educating yourself about neuropathy:
At any rate, fatigue is something we struggle with every day and often regulates/determines our daily activities.
While fatigue in neuropathy and other chronic illnesses is not fully understood by the experts, from a practical standpoint, here is what I have learned to do or not do in coping with fatigue. If you have found other things that help, send us a message and we will add it to the list.
1. DO NOT think negatively about fatigue, thus feeling guilty about your fatigue. Go take a nap! (See DVD “Coping with Chronic Neuropathy”).
2. Learn when your “fatigue” periods occur, as these often establish a pattern at certain times of the day. Then go lay down and stop moaning about it, as it is what it is until it isn’t.
3. I have learned that you do not even have to actually “sleep”, but just allowing your body to rest/stop for an hour takes care of the exhaustion as the body recovers. But whatever works for you, do it without guilt or apology.
4. For nighttime, have a standard bedtime routine in preparing for sleep that tells your body that it is time to sleep.
5. Do not eat a large meal just before bedtime or take a stimulant that keeps you awake or might interfere with sound sleep (i.e. caffeine, for some alcohol).
6. Do consider drinking a glass of milk as for many this encourages the body to sleep.
7. Do consider one of those special recordings of quiet music or rain falling or similar if it helps.
8. Do consider using a ticking clock if that helps. As a child in the 40s I got my best sleep on the floor in front of the big radio in the living room listening to Dragnet or was it the Lone Ranger, maybe the Big Story. Today most TV programs have the same effect, sleep! Pun intended.
9. Muscle spasms and/or restless leg can make sleeping difficult and rob you of needed sleep. Speak to your doctor and have tests done for calcium, salt, potassium levels and other deficiencies which can make it difficult for muscles to work properly. This is especially true if you are on a diuretic which can empty your body of needed minerals. Getting up and having a glass of orange juice worked for my mother and works for me. If the lack of something is not the problem, have the doctor find out what may be causing these muscle problems. There are also medications to help prevent these muscle spasms and cramps for they are very common in neuropathy.
10. I have found that if I wake up with my mind creating solutions to an issue or writing poetry (happens) and not able to sleep, I go to another room or go do some work on my computer (write out the solution or poetry) until I begin to feel sleepy again. It works for me.
11. For some insomnia is a real curse. There are medications that one can use as Dr. Scott Berman mentions in his book, so speak to your doctor. Frankly, I would work on natural solutions first and be creative to see what works for you. But if ALL else fails these medications may help and be a heaven sent blessing.
12. My Nurse told me that many patients with this effect of a chronic illness, take Folic Acid and it is known to help. So you many want to speak to your doctor in this regard.
13. Dr. Erika Schwartz, M.D. (national leading expert on wellness) suggests that patients with extreme fatigue have the physician check your basal metabolic rate and your thyroid function. Low thyroid is a common cause of fatigue. So speak to your doctor in this regard.
14. So what do you do or not do that helps? Send it to us and we will enter it here!
DISCLAIMER: The information in this article and on the website or the links or in the guidance 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 this information.
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.