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Living with Polyneuropathy CIDP, GBS, & CMT

Intro & seeking advice on how to combat lethargy

Hey everyone! Newbie here. Diagnosed in Feb 2014 after six long months of being bed bound and unable to walk on my own. I am slowly trying to regain my strength and exercise as much as I can to try to get back any of the muscles I've atrophied especially in my legs. It's been a journey.

Alongside my pain from cramping and spasming (tried baclofen for awhile until it caused a seizure) I have been experiencing extreme fatigue. As bad as when I was first sick and untreated. Some days it's a struggle to get out of bed at all. It's such a set back for me. I was wondering if anyone here has been prescribed anything that helps them?

I currently am on 300ml IVIG/Gammagaurd every six weeks (the taper from 4 wks has been ROUGH) and that's all. I am medicine sensitive and since I already am in a brain fog I am hesitant to really take anything. I do supplements in the form of a multi, magnesium (great help for my nerve pain), and a super b complex.

I have read that some people have had success with adderall but I'm nervous to bring this up out of the blue to my neurologist, although I've mentioned my lethargy and brain fog at every appointment. I'm nervous I'll come off as drug seeking although I have rejected every narcotic pain pill offered to me. I'm just so desperate to feel normal again and have become increasingly depressed by my limitations.

Any and all information would be wonderful..any resource at all really since I'm still incredibly new to my diagnosis. Very excited to have found this group!

Related but unrelated as well - I made a youtube video a year ago chronically my journey so far (back when my originally diagnosis was multi-focal motor neuropathy - since changed to CIDP with more testing) and I have had many reach out regarding it. I'd love to do a follow up and maybe a series regarding IVIG and the like. Any feedback would be great!!

Vlog - My Story of Chronic Illness

Thanks so much everyone & keep on fighting <3

Hi Kelly

very well done, informative video!

I am the opposite of you --originally diagnosed with CIDP in 2013 later revised to a degenerative muscle disorder, Inclusion Body Myositis (IBM). One of its symptoms is chronic fatigue, with me its a good nights sleep followed by 3 or 4 naps during the day. Fortunately, I am retired and 77yo so I can get away with it. I have tried fighting it but I pay for it later with much more discomfort (my chronic fatigue has no pain component, only a desire to rest.) Hang in there, they are making progress in the area of auto immune diseases and you are still young, and have a fighting spirit!

Maybe you need to get the IVIG more often, like every 3-4 weeks. I was diagnosed with CIDP in 2011 and have been getting Gammunex (IVIG) every 3-4 weeks as needed. Usually I can go 4 weeks without any problems but sometimes my symptoms return within 3 weeks so I get it a little bit early. The IVIG has a circulating life of about 28 days in your body before it starts to diminish. Maybe if you lessen the time in between infusions the fatigue will go away. Just a thought. I know if I get too long between infusions I have lots of symptoms that I don't have if I get my infusions close together.

Welcome, and thanks for sharing your video.

Chronic fatigue is very common for people with CIDP, and I also suffer with it. Unfortunately, as far as I can tell, there are no really good answers. Only two things have helped me somewhat:

1. Get plenty of sleep. Do not feel guilty about needing more sleep than most people - it is a necessary "treatment" for this disease. I have noticed that when I get a good 8 or 9 hours of sleep, I feel significantly better and have more energy the next day. On days when I have had trouble sleeping, I tend to crash in the afternoon. Also, don't hesitate to nap in the middle of the day if you start to feel very tired. It is hard to take time out of your day for something that seems unproductive, but you will feel much better, and have more energy, for the rest of the day. I resisted this for a long time because it somehow seemed decadent to take naps, but I finally learned that it is much better in the long run. One caution: my family doc advised me not to nap longer than 45 minutes, because then you go into deep REM sleep, and you will have trouble sleeping at night. If I stay below 45 minutes, I have no problem sleeping that night.

2. Exercise. As you point out, when the disease is at its worst, you lose muscle strength. This is what I call the double whammy - nerve problems along with weak muscles. When I finally got stabilized, I had almost no muscle tone at all. But you can regain the muscle strength with regular, systematic exercise. I now go to the gym three days a week, and try to do some kind of exercise between gym visits - walks, working in the yard, even a long shopping trip. I used to avoid walking stairs, and leave stair-climbing errands to my wife, because it was difficult. Now I force myself to walk stairs, even when I don't want to.

I push myself almost to exhaustion at the gym. It has been difficult, but I have regained much of my strength. Endurance (resistance to fatigue) seems to come more slowly, but it is coming. I keep careful records of what I do at the gym, so that if I do have a relapse I will have an objective record, and not just a vague feeling that things are getting worse.

A physical therapist explained something to me about exercise machine strength exercises. If you do a few repetitions at the highest weight you can manage, you gain strength, but not necessarily endurance. For endurance, you need to do many repetitions at a lower weight. Most people in the gym seem to be going for sheer strength, but I try to do a balance, with particular emphasis on endurance for my lower body.

I have asked several doctors about medication for fatigue, with no good responses. I was told about a couple of medications which supposedly treat fatigue, but if you look into them, they are really aimed at treating people who have trouble staying awake. Not my problem! If anyone has any suggestions, I would be interested to hear them. I hadn't heard about Adderal, and will ask my doctor next time I see him, but I suspect I would have heard about this if it was really good. I said (semi-jokingly) to my family doctor that I would request low doses of amphetamines, but he probably wouldn't prescribe them. He said, "You got that right!"

One final point: there seems to be some sort of connection between CIDP and thyroid problems. I had thyroid problems, and had half my thyroid removed. You might want to get blood work done for thyroid issues. A low-functioning thyroid will also cause fatigue.

Good luck, and let us know how you are doing.

Bill

1 Like

Hey everyone thank you for the kind replies :)

I saw my neurologist yesterday and we are going to increase the frequency and dosage of my IVIG to see if that helps me at all. Lots of bloodwork today as well, MFP, iron, B12, thyroid function, etc.

Hey Kelly:

Sorry you're not doing well. I am 64 y/o disabled Vietnam Vet. In addition to C.I.P.D. I have PTSD and depression from my issues in the War. I don't know about you. But I can tell you what works for me. I am not on any medication for C.I.D.P. The VA wants to put me IV Gammagabulin. But I refuse because there is a high risk of Renal Failure.

For me, I exercise daily 20 to 25 minuted of cardio, combined nu-step and run/walk on treadmill. I also do about 30 minutes of weight training everyday. This seems to help a lot with pain management. Although I do have some muscle pain due to training.And number one antecedent to everything else. I pray daily. I have a personal relationship with my Lord and Savior Jesus Christ and a very strong close relationship with Him

I suggest that you try both.

Your New Friend,

Warren

Hi. My wife has CIDP. She is an extremely energetic person but CIDP makes her extremely tired. Especially after her Plasmapheresis treatments. She had a negative reaction to IvIg so she now does Plasmapheresis. She takes Modafinil/Provigil for her lethargy. It does the trick. I worry that it is masking her body telling her to slow down but it does work. You might want to look this up and ask your doctor about it.

I am surprised that this works for her. If you look at the Provigil web site, it says:

"PROVIGIL is a prescription medicine used to improve wakefulness in adults who are very sleepy due to one of the following diagnosed sleep disorders: narcolepsy, obstructive sleep apnea (OSA), or shift work disorder (SWD)."

So, according to their own web site, Provigil is intended to help you stay awake. There is no mention of dealing with fatigue.

I would be interested to hear more about how this worked for her.

Bill

Charlie said:

Hi. My wife has CIDP. She is an extremely energetic person but CIDP makes her extremely tired. Especially after her Plasmapheresis treatments. She had a negative reaction to IvIg so she now does Plasmapheresis. She takes Modafinil/Provigil for her lethargy. It does the trick. I worry that it is masking her body telling her to slow down but it does work. You might want to look this up and ask your doctor about it.

Hi Bill:I am happy to hear you're training at the Gym on a regular basis. When I don't train on a regular basis I feel much

worse. Sometimes I really have to force myself because of my depression and PTSD. This also greatly effects my sleep. But as you know it's very important to exercise daily. I am proud of you that you now force yourself to take stairs. I too hate them but force myself to take them. Bravo for you for your excellent motivation.

Your Friend Warren

Uncle Bill said:

I am surprised that this works for her. If au look at the Proaigil web site, it says:

"PROVIGIL is a prescription medicine used to improve wakefulness in adults who are very sleepy due to one of the following diagnosed sleep disorders: narcolepsy, obstructive sleep apnea (OSA), or shift work disorder (SWD)."

So, according to their own web site, Provigil is intended to help you stay awake. There is no mention of dealing with fatigue.

I would be interested to hear more about how this worked for her.

Bill

Charlie said:

Hi. My wife has CIDP. She is an extremely energetic person but CIDP makes her extremely tired. Especially after her Plasmapheresis treatments. She had a negative reaction to IvIg so she now does Plasmapheresis. She takes Modafinil/Provigil for her lethargy. It does the trick. I worry that it is masking her body telling her to slow down but it does work. You might want to look this up and ask your doctor about it.

I bought an adjustable cal king bed. So when I take my gavels ton at night I don’t turn at all I adjust to get optimum comfort and now I sleep six to 8 hours solid each night. It improves my energy.

Thank you Kelly for your Vlog. It was very informative (and courageous of you to share) and while I have not faced the severity of symptoms you described, it pretty much matched my experiences. I used it so a colleague could better understand a little more of CIDP and the challenges that those of us afflicted face. I was dx August 2014 and it's been 'life altering' - but definitely not 'life defining' as far as I am concerned.

Hey Kelly,

Exercise, and more importantly stretching, is what I have found most effective with lethargy, its more just trying to get the brain in the motivation for it I find haha!

All the best

x

I am on 60 milligram ER
of adderall daily. It helps a lot.

Interesting re modafinil. I tried it for 2 weeks but it made my fatigue worse.