12 hours of sleep is the ideal for me, but do to the stresses of life or travel, or other circumstances, I don’t always get that. A lot of the time I feel tired, & after almost 10 yr. I still can’t get used to that part of CIDP. I can still remember the person I was, who could do so much on 6-7 hr. of sleep & it hurts. I am tired of being told that I am now almost 10 yr. older, as I see my classmates & what they can do, most of them still working full-time as well. But it is what it is, & there are worse illnesses to have; small consolation I know, but it’s the best I can do…
I’ve not yet been diagnosed with CIDP, but I DO have Chronic Fatigue Syndrome, Fibromyalgia, and much more, so fatigue is a constant problem. Not just being “tired”, but “bone tired”. Today is a good example; I’ll have a period of “good days”, and I’ll really try not to overdo it, but when I “flare”, I get extremely tired.
The things that work for me:
[B]B-12[/B], at least 250 mcg, which is something like 8000% of the daily recommended amount. There is no harm in taking this much, as Vitamin B is water-soluble, and your body just “eliminates” the excess in your urine. You can also get 500 mcg tablets.
[B]d-Ribose[/B]: When you are fatigued by these conditions, your body is robbed of Adenosine-5′-triphosphate, or ATP, which is a [I]”multifunctional nucleotide used in cells as a coenzyme. It is often called the “molecular unit of currency” of intracellular energy transfer. ATP transports chemical energy within cells for metabolism. It is produced by photophosphorylation and cellular respiration and used by enzymes and structural proteins in many cellular processes, including biosynthetic reactions, motility, and cell division. One molecule of ATP contains three phosphate groups, and it is produced by ATP synthase from inorganic phosphate and adenosine diphosphate (ADP) or adenosine monophosphate (AMP).” [/I] d-Ribose is basically a sugar, or carbohydrate, that helps your body make ATP. Be careful which brand you buy, because some of it tastest horrible! Certain brands have a very strong, almost Molasses taste to them. [B]While this is NOT an endorsement[/B], I use “Source Naturals” brand, in the chewable form.
[B]Provigil/Nuvigil[/B] These two drugs are prescription-only, and are Class III controlled substances. Don’t let that scare you away, though. They were designed to help people with sleep apnea, shift work sleep disorders, and other things, but are commonly being used to treat fatigue patients. One nice attribute is that they also help a little with pain, and they also affect your metabolism in a way that sometimes makes pain medications more effective, according to my doctor. Talk to you doctor about these if you’re interested.
Finally, I’ve learned that one of the most important things is to learn my limits and stick to them. That’s hard…amazingly hard…especially with small children in the house, but it’s crucial. If you don’t, you force yourself into a vicious cycle of feeling fatigued, then feeling better and “over-doing it”, then feeling fatigued again, etc., etc., etc., ad nauseum. An actual WRITTEN schedule for my days was required, both to keep me within my limits, and to keep me from letting the days slip away while I played Angry Birds all day. 😮
Hope it helps.
I have extreme fatigue, & the only thing that helps me is sleep. I had to go on disability for my CIDP almost 9 years ago, as I was in very bad shape & was refractory to all treatments. My youngest was 21 at the time & away at college, so I was lucky in that respect. I usually have to go to bed by 11:00 & sleep until 10:00 to feel somewhat normal, not that I really do. Wish I could help you, maybe one of the drugs like Alertec or Ritulan might help?
The way it was explained to me by my neuro, is that once the nerves we are born with become damaged by CIDP, they are never quite the same. So we are always forcing damaged or resprouted nerves to send the signal to the muscles, which wears one out. I am 8 years out, but left with a lot more residuals than you, & find I must get about 11 hours of sleep/rest a day in order to feel somewhat normal. Exercise is good, but don’t overdo, as you will pay dearly for it. It is a fatigue that one can’t really explain to family members, isn’t it?
If I did not have the Provigil for fatigue, I would probably be in bed all day. I survive with 200mg of Provigil and 300 of Lyrica for pain. I also take Naproxin for inflamation, as needed, and Tramadol for bleedthrough pain. My copay for Provigil is $25.00 a month and the copay on the Lyrica is $25.00.
I am still undiagnosed. I have a desk job and work full time. Some days are rough!
I’m just adding to the information heap!!:)
Ah, the fatigue. I agree with you that I can easily deal with the nerve pain, for me the disability part, etc. But the fatigue is the worst part of this illness. Some have tried Ritulan, but most without much success. I think that the fatigue is brought on by us trying to make damaged nerves fire up muscles all day long. The only solution I have found after almost 8 years now, is REST. Lots & lots of sleep & naps in the afternoon. I wish I could be more positive.
VERY INTERESTING! I feel like my fatigue is debilitating, it overwhelms me and controls my days. The tiredness is in my eyes mostly. One of my problems with fatigue though is that CIDP took away all my comfortable sleeping positions and I toss and turn for hours until I finally fall asleep. If only I could get a good restful nights sleep, my instincts tell me I’d have more energy during the day.
My extreme numbness is another story and it’s at it’s most extreme at night when I try to sleep. I wish I knew of something that could cut into the numbness, but I’ve always been told nothing will.
Hi there, fatigue is still a big issue for me, almost 2 years after mild GBS. I do not think I could yet work a full time job. The strange thing is that I have an energetic day and feel great that day, then realize the next day that I over did it and the fatigue lasts two or three days. I have found that after a busy day I get many muscle spasms at night which keep me from sleeping well. That might be what causes my extreme fatigue. I end up taking it very easy (and feeling awful) for those fatigue days, and then I’m gradually up and about again. I am still have trouble judging how much I can do without “hitting the wall” and ending up on the couch for a few days. I look pretty good and I am getting more muscular, at long last. But fatigue is a real problem for me.
I haven’t had an IVIG infusion since 2002, but do suffer from the extreme fatigue. I call it “hitting the brick wall.” It usually occurs if I get less than 9-10 hours of sleep, or it comes on as the day goes on. It seem to hit me hardest by the late afternoon, but usually too late for a nap. When it hits, I do not feel flu-ish, more like I have no energy at all. Getting up to use the bathroom is a chore, cooking dinner is out of the question. It hits my brain as well, & talking or even thinking straight is very difficult. Only cure for it is sleep, a good night’s sleep.
Fatigue is one of the least appreciated, but most significant consequences of GBS. It does not affect everyone. A lot of neurologists (including mine) do not believe that fatigue is part of GBS. There are a number of good medical papers on the subject and more and more doctors are coming to appreciate it. The medical papers state that the amount of fatigue does not match up with (correlate) with the degree of severity of the GBS. I also had a “mild” case, but tremendous fatigue. Now almost two years later, the fatigue is easing up it seems, but it was really, really tough for a long time and still is not easy. Please look at the notes from the Symposium about fatigue (in the Main Forum under Notes on GBS and CIDP).
WithHope for a cure of these diseases
Please try not to feel so badly. We all get these thoughts from time to time and hopefully shake them off. You have been very supportive to me and others even with this intense fatigue. You must be a very strong person.
Hang in there and keep working toward resolve.
Are your main health items under control and the fatigue is getting worse, or are you still working toward resolve with some medical issues. I was at a point were I would feel like giving up trying to get answers but then pushed some more. The fatigue is aweful and I don’t even know how what I have rates with others but I do know we are all suffering.
If things were thought to be under control and the fatigue is getting worse, Linda, it sounds like you may need to start looking into it further. Gradual changes are the worst because you don’t know when to start to complain.
All the Best to you Linda–tim–
I improve my fatigue since I started the full daily dose (6pills) of Qualivits Multivitamins. Before I was 2 or 3 pills.
The neurotin get the pain and paresthesias down, but not the weakness and fatigue. The only thing I found to fight fatigue is the antidepressant foxetin 50 mg daily and now the multivitamins.
I find the heat of the summer exacerbates the situation, bringing on GREAT fatigue. I can only make it to about 1pm, then find myself so weak I must sleep for a few hours.
Labor Day is just next week, and reminds us in this area, our hottest month of the year is upon us, (San Diego).
I do not like air conditioning, but find it is a must when it gets too hot, which is why I only have it in my bedroom.
I dread summers now…
Remember I am the caregiver of Bill. Our last company left on Saturday and although I am just the caregiver I slept thru the morning. Bill slept 10 hours, read the paper and went back to bed. He slept most of the day(this is Monday)
I remember Saturday we both took a nap(I never took naps during the day until his disease came roaring by plus all the company we have had. I know I worked on the clean up on Saturday and did more on Sunday but somehow he and I slept half of Monday away to the point that I really thought it was Sunday.
I couldn’t believe I did not know it was Monday. That was the day I had planned to put all his papers on cidp in order and get them copied for the Cleveland Clinic . We leave on Saturday. Instead I was washing cupboards down . What a time to do that.
I always felt Bill’s fatigue was mostly depression also but I do not think so now.
Keep in mind that we have had company at least 5 times from July to now.
Most of them relatives. 7 just left but three were children and that is what I enjoy the most. I always miss my own grandchildren even after they leave but these were our neices children and very enjoyable. Our own children have been very helpful as Bill cannot seem to do much of anything because of fatigue. He does not nap while company is here so he sleeps alot once they are gone.
The bed and breakfast is now closed for the season until Thanksgiving when I get to see my own 5 grandchildren. and their parents.
So I truely understand your fatigue.
I remember the all-body exhaustion that I experienced when I was pregnant! Wow – it was amazing, and a good night’s sleep usually helped enormously.
These days, when I have made a big effort (for me) to do something, it hits me like a truck. My muscles, nerves, brain, everything just feels like I can’t do another thing. The only thing to do is have a rest. If I keep that up, then the pain cycle will start and that is not a good thing. The only thing is, that I usually wake up the next day feeling like several trucks have hit me!
But, at the end of a day where I just poke around, I get “tired.” That is, I can still function, but my body and mind don’t have alot to give. Making dinner is about the most I can do at the end of that sort of day…
I consider fatigue to be one of the key symptoms of this disease. There is so much “noise” in our nervous systems that there isn’t lot of energy left for us to function as people.
I think that not expecting too much of yourself on any given day is key. Each of us has to work out what we can achieve on a “normal” day, say – getting up and showering, doing one activity – like some exercise, and having enough energy to make dinner (or help clean up) — without it normally causing any problems. Then, if you do those things, that day can be considered a success. Anything else you contemplate achieving has to be decided on the basis of how it might compromise your routine, and make you feel. We have to manage our own expectations as well as others.
It might be being the father of a 2 1/2 year old since most kids that age RUN to do everything and their parents “get” to run with them. It could also be the Lyrica. I felt like I was dying from fatigue when I was on it. I felt much better after a couple of days off the Lyrica. Think about if you feel tired on the weekends or after doing less to see if this gives any clues. If you can, you could also think about reducing the dose of the Lyrica to see if that helps the fatigue without making the pain too bad.
WithHope for cure of these diseases.
A year ago I went to the GBS/CIDP group of MN meeting in the Twin Cities. The featured speaker was Dr. Gareth Parry from the U of MN, who also happens to be my neurologist. He had just come out with his latest book on GBS & CIDP. Anyways, he spoke about fatigue a lot, even for people who seemed to make a full recovery from GBS. His explanation was that even though the myelin sheath might heal, it is never the same as the covering that we were born with. So even if we aren’t aware of it, everything we do throughout the day is harder than it was before the damage occured. This causes the body to fatigue faster than it normally would. So everyone will experience this type of residual in some way. Make any sense? (I am very fatigued right now!)
I used to host the parties for my hubby’s friends often before I got sick. I just can’t do it anymore. It has taken me a long time to admit to the fact that I can’t do the things I used to. My normal “everyday” chores have been taken over by my kids or hubby. I help, but once I start feeling tired, that’s it, I am done.
At the grocery stores, I use the little carts. At the mall and other large areas to walk, I have gotten a wheelchair.
It is very hard for our friends to understand I am sick. I look the same but obviously can’t do the same. The last party we had, I emailed everyone attending asked them to bring a dish of some sort. I provided a ham and they brought everything else. It was still rather tiring to me because of the preparations, but it was better than not having the party or me killing myself trying to play host. I will tell you I like it better when people come here just because I don’t have to poop myself out getting ready to go somewhere and stressing about whether I’m going to stumble or drop something at someone else’s house.
This week my family is visiting me from New Orleans. This is the first time I am seeing them since I got sick. I have my wheelchair ready to go. I would end up in the hospital if I didn’t use it all week. I’m still going to be tired, but at least I’ll be tired sitting down.
Hope this helps.
I think the extreme fatigue that affects most of us is really beginning to hit you. I hate to say it, but it is not just the amount of time we rest, but what we are doing the other 12 hours that really makes the difference. Pick your battles wisely, & do not overdo the 12 hours that you are able to function. I have learned the hard way that if I go to the grocery store on one day, I cannot do much else that day. I try to do only one thing each day & make sure I get plenty of rest afterwards. I know it is not easy to hear, but if I overdo it, my pain is much worse. I am very type A, so I know how frustrating all of this can be, but we have to listen to what our bodies are telling us. I think you are just trying to do too much.
I am constantly tired. I know this sounds lazy, but there are some days I sit on the couch thirsty or hungry and look at the kitchen and go “yeah, maybe when the kids get home”, because I am so tired I really can’t stand the thought of walking there and it’s not that far. I was told it’s normal.
I’m 2 yrs 2 months post GBS and I too experience tiredness daily. I find the max I can go is 9 hours and then I need a 2hr rest. I tend to be more awake at night and sleep during the day. This is hard for my family. I find I need 9 to 10 hours of sleep before I can function. I hate this lifestyle because I used to be a go go go person. I too find it hard to plan activities because I’m afraid of being too tired. If I make a long trip somewhere I have to rest when I get there before I do anything. I think it is hard for others to understand what we go through. I’m 48 almost 49 and have three teens at home and I dont want to miss out. I still have nerve damage in my feet and they tingle constantly. Im on Neurotin and my doctor said to increase the dosage because Neurotin aids in healing. Is that so anyone? When I work which is sub teaching I’m up at 6:30 am and back to bed by 3:00sh when I get home. I wonder how long I can live like this. How do those who have had these residuals keep going and stay positive.
This seems to be the one issue that I still cannot accept. I can deal with wearing AFOs to walk, a cane, using my powerchair when I am tired, giving up most of my sports, etc, but I hate this feeling of feeling so tired all of the time. I am sick of taking naps on a beautiful day, especially 3 hour naps on some days, & after being sick so long (almost 5 years now), it is getting harder & harder to remember what it felt like to feel normal. I am 53, but my 55 year old husband recently retired, & I now realize how much energy a healthy person has. I am tired of explaining how tired I am all of the time!
It sounds to me more like a case of overdoing it, than any kind of relapse. I am 4 1/2 years post getting CIDP & fatigue continues to be my worst enemy. I can only do a few things in one day or I will suffer dearly. Going back to work is just a pipe dream for me, as it will never happen. I would just try to cut back, get more rest & then see what happens.
Okay, I went to my neuro last week to refill my Lyrica prescription – which by the way, already had 5 refills on it, but my new Army hosipatal wouldn’t allow me to refill it in NM because it had been originally filled at an Army hopistal in Wa D.C. so I either had to return to D.C. to refill it or get a new prescription. Don’t these people work for the same system?????
In the middle of being nice enough to give me a new prescription for the meds I had already been approved to receive, he asks me all these questions about GBS symptoms/residual side-effects (because he really doesn’t know anything about it except what he has read) and then proceeds to tell me that I have to be careful what I read on the internet because there is a lot of complaining about fatigue and that really isn’t a GBS symptom. I wanted to smack him up side the noggin. I for one can tell him that it IS a residual side effect. Either that or someone sneaks in my house periodically (without warning) and knocks me senseless for several inconvenient hours each week.
Where do some of these doctors come from??? I wish I had a magic button which I could push to trade bodies with them for 1 hour so I could say “now, tell me again how it isn’t a ‘real problem’…”
I’m 2 ½ years into it – and fatigue does play an important role in my daily activity –with rehab 4 days a week and working from home each afternoon (sitting on computer/phone) I still find days when I need to take a nap for an hour or so –up at 6:30 –bus to rehab at 7:30 back at noon so I am more then ready for bed by 8-8:30 pm .. And when working on weekends (we produce music festivals most summer weekends) I find that I play catch up the next week—And I do notice that my rehab is affected when tired – late nights I am afraid have left my life! – we are careful to schedule things around my rehab activities –my guess is that fatigue will be around so for me rather then push myself beyond the limits I default to my body …. At age 69 – who needs these late nights!
Let you body be your guide ..and you will endure
I have CIDP, not GBS, but fatigue is a big part of both syndromes and I have heard our members say many times GBS means “Get Better Slowly”. I was into the second year before my need for naps ended. And I was into the third year before I became aware that my fatigue was lessening. I can still get very tired, but I am alot better now then I was during those first two years. FOR GBS AND CIDP FATIGUE “IS” VERY REAL. I think you’ll feel better if you can work in a quiet time for yourself.[IMG]http”//members.tripod.com/~katyskubicle/mice2/mouse21b.gif[/IMG]
I ‘m a year out and a few days. I am making an appointment with another neuro. becuse the one I had at onset saw maybe 2 cases a year….Any way fatigue is a problem for me also. If I find anything out I will most certainly post it , but I’m not holding my breath. Being from a small rural area in the middle of nowhere I have to travel either 5 hours to Pittsburg or 4 hours the Phila. of 3 hours to Rochester NY. I have picked Rochester. None the less GBS is a pain in the a$$ no matter where you live.
I am over 4 years out from a severe case of CIDP & didn’t really begin to feel somewhat normal until this spring. I was getting up too early & fighting taking an afternoon nap. I have finally began to listen to my body & feel much better now that I sleep in later & take a nap when I feel tired. I hate not being able to keep up with the rest of my family but they all understand. I can’t stress it enough, listen to your body & make sure you get enough rest. Probably not what you wanted to hear, but it is working for me.
At the risk of annoying a post-menopausal Italian-American woman from NY/NJ on steroids, I am blessed to suffer only very mildly from fatigue. I fall asleep easily if I am not busy with something (on the train mostly) and find that I must sleep in on Saturdays. Otherwise, I start my day at 5:15 am and go to about 10:30 pm without too much problem.
However, my CIDP seems to be milder than most of the posters here, so perhaps my fatigue issues should also be milder.
I can so identify, I call it hitting the “brick wall.” No one who does not experience it can begin to identify. I get so tired I can’t even think straight or even talk. When family members call after 7:00 PM I won’t even talk, as my voice is too weak.
The past few weeks have been really bad, I don’t know why. I have CIDP but I know I am not relapsing, as I can still walk, have the use of my hands, etc. but this fatigue really gets to you after awhile. I feel like I am always disappointing family members when I have to say I am just too tired to do something. I could not even go to the grocery store with my husband today, as I just was not up to it. I just wondered if it was the neurontin or the damaged nerves trying so hard to send signals to the muscles to work?