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.
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.
I have found the best way for me to get to sleep is to take 650mg of magnesium with a glass of warm Nestle’s Quick & occ a 2″ square of medium cheddar cheese if I’m a bit hungry, for a bedtime snack. I keep a sm container of Gatorade at my bedside in case I need something during night, so I won’t be getting up & into fridge & become completely awake.
I tend to get tired around 4p so I shut things off & lay down in bedroom for an hr or so-just to rest. I dont worry about falling asleep or not-just rest. Any other time I am tired, I simply stop to rest awhile. I pay no mind to time of day-just that I pay attention to my body & rest when needed, so the day goes more smoothly w/o becoming over tired.
Thank you for this very good article. It expresses my exact fatigue issues. Will see that my neurologist gets a copy.
Eva: So glad it helped. Fatigue is one of the most difficult symptoms to live with. Hope you have ordered the DVD at the ORDER DVD tab.
I have found that smoking some marijuana at bedtime really helps with the pain, fatigue and insomnia. I have never been one to take non-perscription drugs, but a friend suggested this, and it has been a godsend. I am not sure how it will work in the long run, but for now it is doing the job quite effectively.
Danny: Yes, many patients have found this drug to be helpful in reducing symptoms. Medicine uses the drug in pill form to help reduce symptoms in cancer patients. Personally, while the drug is illegal in many places, there is indications on many levels that it can be helpful. Why it is not approved for medical use as are many drugs that are even more dangerous will always be beyond me. My one concern is that patients will not seek the help of a NEUROMUSCULAR NEUROLOGIST in search for possible solutions to the disease rather than the symptoms, so I encourage you to make sure you have a sound diagnosis as to any possible causes and beyond that the type of neuropathy that can often point to a cause or a treatment.
Mica: I am wondering why you are so ANGRY over this issue? I sit with many cancer patients in the infusion room and without medical cannabis they suffer so much more from the infusion of toxic chemicals to kill the cancer! I am not sure it matters whether taken by pill or inhaled makes a difference, but we do know that it often does make a difference for those suffering from chronic pain or a medical conditions where there are few options. I do understand the down side of any drug for recreational use and there are many social issues here that need to be addressed based on sound unbiased research. But why so angry?
Sleep relatively well, have CPAP machine, a nebulizer, portable oxygen tank, and a large oxygen machine.. I have had Cancer, two aorta aneurysms, Seven stents (tubes) shoved into my heart.. However, I have lower back pain, muscle to joint pains (legs), tingles in lower legs, I can not stand for more than a few minutes. Hands and feet Cold, but I have to take blood thinners. I become light headed, almost faint at times, and I have terrible Fatigue.. I am alert, but just go blank/asleep out of no where, missed some intense football plays.. Lack of activity (from Back) has caused 35 lb. weight gain, heart does not need.. Also Sir, I am a Vietnam Vet.. having problems locating effective Doctors ! Thanks.
M. James: You have many symptoms that point to illnesses that may be related to your exposure to the toxins used in Vietnam. Veterans who were in Vietnam often have Peripheral Neuropathy, heart disease, and other problems, due to exposure to the toxins sprayed in Agent Orange and Agent Blue (Arsenic) and if this at all possible you need to apply to the VA for disability if you have not done so already. I have sent you a personal E mail from firstname.lastname@example.org with guidance on neuropathy and on applying to the VA for disability regarding PN and other health issues that may be related to exposure to the toxins in Vietnam
Sir, I’m a 22 year Army veteran and a recovering bulimic/anorexic. A small dose of melatonin helps me sleep. Does chronic peripheral neuropathy affect digestion, esp. peristalsis action in the intestines? I have terrible constipation most of the time. I think it could be due to the anorexia, but I’d appreciate understanding if the neuropathy is causing more and more paralysis all over the body, intestines included. This what it feels like. Thank you, Sir.
Jenny: Yes – there are Peripheral Nerves through out the body and it can affect the digestive system… it is called Autonomic Neuropathy. Of course other things can cause such symptoms which makes it difficult as you well know for a patient to sort it all out. I will send you more information on this issue by E mail directly to you and some practical ideas of what to do to help perhaps reduce the constipation. Normally such symptoms are treated symptomatically and it is important NOT to over treat the symptoms. Need to know if you were exposed to any toxic chemicals / sprays etc while in the military. Col Gene
I was diagnosed with CIDP about 18 mo ago and it was confirmed by LP 6 mo ago. I have been getting IVIG therapy every 4 weeks for a while however about 3 mo ago increased to every 3 wks since symptoms worsened. I have incredible fatigue and lethargy. I was evaluated 4 mo ago for cardiac problems as my fatigue became so severe I couldn’t walk across the room or down a flight of stairs without being totally exhausted. Cardiac (thorough) was negative. I have also had shortness of breath for over a year and recent pulmonary evaluation was negative. Do you have any suggestions for building up my stamina? I have so little energy and don’t get any exercise as a result, and have gained about 35 pounds in the last 2 years, which does not help any of these symptoms. Thank you.
Katie Unfortunately the fatigue is a very common symptoms of CIDP and one of the worst to cope with… for myself I find that if I do not fight it.. and go rest for less than an hour… sometimes 30 minutes… my body recovers quickly… at least for a while… the problem is that only a few nerves are doing all the work of moving muscle etc…. and if you think of the small child with undeveloped nerves and only a few undeveloped muscles doing all the work and they get exhausted quickly since they are undeveloped this is what your body is dealing with. Many doctors prescribe Folic Acid to help and I take it daily but have no way of knowing if it is helping or not, but never know. I will send an E mail with other ideas and questions about your IVIg brand and dosage… I too get the infusion every 21 days as this works best for me… and IVIg has a half life of 21 days so it makes sense, but some patients can go longer. Will E mail you.
I was diagnosed with CIDP 4 years ago and fatigue has to be the most limiting thing for me now. One thing I have not heard from anyone else though is that it has caused my foot arches to drop so much that I need orthotics to walk now. Have you come across that before? My consultant says it because the nerves are no longer stimulating those areas that normally support my feet.
Victoria: Are you on IVIg for your CIDP? If not why not? When motor nerves are damaged for a long period muscle does die back and this may be the cause of the issue with arches. I will send an E mail direct on the issue of IVIg.
Hi. I was diagnosed with GBS / CIDP about 4 years ago… At one point I was totally paralyzed but now, I am using a euro crutch / cane one one side. The pain, muscle spasms and fatigue can indeed shorten each day to a few hours of normalcy, and the other hours coping with these symptoms. I have been trying to build more muscle, now that my mobility is returning… Here are the supplements I use for my workouts.
1000 mg l – acetyl carnitine
600 mg Alpha lipoic acid
A vitamin b complex with electrolyte s ( from Costco)
800 mg magnesium
A good sugar free electrolyte drink mix ( I use two in my water bottle)
10 mg creatine
I have also changed my diet… To a low carb lifestyle.
These changes have helped, but I still need more help in being more energetic and losing the 70 pounds gained from lack of movement over the past few years
I am adding your comments to our article soon to be published on supplements. Best to you. Gene