Hi everyone. Thanks for the warm welcome. I'm new to the group, but have been dealing with CIDP for 4 years. I'm beyond tired all of the time, even with IVIG (5 days every 4 weeks).
Any tips on how to feel better and not be as tired? I know I should be exercising (I wont' even talk about the weight gain due to inactivity and comfort food) because I will feel better, but even walking wipes me out. I fall asleep on the way to work but am asleep befor 9:00 most nights.
Thoughts?
Thanks,
Katie
Hi Katie,
I can sympathize with you. I'm chronically tired even when I manage to get a solid 8 hours of sleep. I take Azathioprene (Immuran) and that has helped enough for me to walk most days. I find that walking in large store (one with wide isles) while pushing a shopping cart is helping me stabilize my weight. Unfortunately, I haven't been able to lose any of the weight I've gained in the three years I've been dealing with CIDP.
Lindae
The best advice I can give you is to just accept that you will need more rest than you ever did before. I typically sleep 9 hours a night, and then still sometimes nap in the afternoon. I can get by with less sleep if I really have to, but I feel really dragged out the next day.
But, on days following a good night's sleep, I have noticeably more energy. So, I just make it part of my daily plan to go to bed at 11:00, and get up at 8:00, or something similar. And if I feel tired in the afternoon, I don't hesitate to snooze for 30 minutes or so. It is remarkable how much that can help.
I do recommend exercise, as much as you are capable of doing it. Exercise makes me very tired, but after I come home and rest (that is, sit like a lump for a couple of hours), I actually feel better for the rest of the day. I sort of get the impression that my nerves or muscles are re-learning how to work.
You might ask your doctor about prescribing physical therapy for a few weeks, to learn how to do the exercises. Having specific appointments will make it much harder to just skip a day when you don't feel like it. Once you get in the routine, it will be easier to go on your own. If you can find a therapist who is familiar with CIDP (or GBS), that would be great, but they are very few and far between. But they can show you how to use the machines, and can show you specific exercises to deal with specific weaknesses.
It took me a little while to find a gym where I felt comfortable. The first one I went to seemed to have a lot of extremely fit young people, doing very vigorous exercises. Later, I found a gym that seems to cater more to old fogeys like me. It's much quieter and calmer, and I feel a lot more comfortable.
Good luck!
Bill
Katie,
As others have said fatigue is a big part of CIDP. My wife told me years before I developed this disease that I should set an appointment with myself each day (or at least several times a week). During this "appointment" I should focus on my goals. The first day would be just to walk for 5 minutes. The second day for 7 minutes etc. Amazingly this little tip kept me going to the gym over the years and now keeps me feeling ok. With CIDP, NEVER over-do it. I did over do it a couple of times and it takes me a week to get over the fatigue. The hardest part is starting. So start now!
Good luck!
Katie I am sorry to say that exercise is what it as all about. Start slowly nad build up. Like one of the other writers suggested make appoinments. Pilates and/or yoga work very well because they do not make you exhausted but give you good exercise and good breathing techniques. They are also the kind of exercises that you can do at home on the other days of the week without having to outlay a lot of money. Exercise will also of course stop you from putting on weight which is just so important. Any extra weight makes you work so much harder all day long and will just increase your tiredness. All this is of course is easy to say and I am sure you knew it already. It is difficult and requires a lot of will power but I am sure you will find it somewhere within yourself.
Go for it.
Wow Katie!
I totally understand the fatigue! I'm newly diagnosed with CIDP as of Feb of this year and am still learning to adjust to all the changes and challenges. I feel like I was BORN TIRED! Fifteen years ago I was diagnosed hypo-thyroid which seemed to explain my constant fatigue, but it never improved completely. I would have bursts of energy followed by fatigue for several days afterwards. The same has been true since my CIDP diagnosis. So far, I have had 4 IVIg infusions and each one caused me side effects that landed me in bed for a week afterwards. The only time I ever felt well was after my neurologist would prescribe prednisone after my infusion headaches. So, he has taken me off the infusions and is treating me with low dose oral prednisone and "Cellcept." I take the prednisone (only 20mg every other day to ramp up to 60 mg) but yesterday was my first dose of the 20 mg prednisone and I feel like I can do so much more! I don't feel fatigued throughout my workday. I feel better with just one very small dose and don't think I will need to ramp up much more. I'm still new at all this, but this (prednisone) is what seems to work for me right now. Maybe your doc can prescribe the same for you? Good luck in your journey. Mine has just begun.
Hi Katie,
I've battled tired for the first 3 years since starting IVIG's twice every four weeks. Depressed, eating badly, weight gain, pretty hopeless yet working 10-12 hours a day on my feet as a chef. No other exercise, just too tired. A lot of Sit and Stare going on.,
At the beginning of this year I made an effort to reconnect with people, found enjoyment in being aroung funny people who made me laugh out loud again and again, started to make doctor and dentist appointments I had not done in three years and accepting occasional evening activities like movies, dinners with old friends. I also was put on a higher dosage from 30 to 35 every three weeks instead of four with my IVIGs. I made sure they gave me Gammagard every time. I started weekly B-12 injections, occasion free reiki during infusions, acupuncture every few weeks, watched the table to mouth food kick I had been on and have lost 5 pounds, went through physical therapy for balance for 2 months twice a week, started saying no at work, and a real booster for me found a really cheap laundry to get some of my clothes washed and iron. I let go of having to do it all restoring my house and had someone else paint all the ceilings and a carpenter to come in and do all the little stuff that had bugged me for years but I had put off. I drink tons of water every day. I found I have regained the life I thought was long gone and have begun to plan again. I don't know which of the things I did led to this new feeling I have but I never would have imagined last fall that I would ever feel so good and hopeful again. I was 24 hours away from quiting my job and moving into a tiny apartment full of old people. It started with the vow to put my health first and I was kicking and screaming the first few things I made myself do but then the momentum picked up and it became so easy to keep doing the things that made me feel alive again. Yeah, I still have CIDP but I'm dreaming again. Life is good. And I'm going to bed now, I think it's about dark.
Just take a baby step. You can do it.
Teena
2bt2: I was diagnoised 4months ago and started witb all the motivation as you have. Once I ended up uh n chair and seeing mysel decline. My motivation started to decline and I see myself decline. Your right when im around people that make me laugh and go see movies or di things I feel better. Thank you for posting this. This week ive been very fatigued so if I do just little steps I can get through.
2bt2 said:
Hi Katie,
I’ve battled tired for the first 3 years since starting IVIG’s twice every four weeks. Depressed, eating badly, weight gain, pretty hopeless yet working 10-12 hours a day on my feet as a chef. No other exercise, just too tired. A lot of Sit and Stare going on.,
At the beginning of this year I made an effort to reconnect with people, found enjoyment in being aroung funny people who made me laugh out loud again and again, started to make doctor and dentist appointments I had not done in three years and accepting occasional evening activities like movies, dinners with old friends. I also was put on a higher dosage from 30 to 35 every three weeks instead of four with my IVIGs. I made sure they gave me Gammagard every time. I started weekly B-12 injections, occasion free reiki during infusions, acupuncture every few weeks, watched the table to mouth food kick I had been on and have lost 5 pounds, went through physical therapy for balance for 2 months twice a week, started saying no at work, and a real booster for me found a really cheap laundry to get some of my clothes washed and iron. I let go of having to do it all restoring my house and had someone else paint all the ceilings and a carpenter to come in and do all the little stuff that had bugged me for years but I had put off. I drink tons of water every day. I found I have regained the life I thought was long gone and have begun to plan again. I don’t know which of the things I did led to this new feeling I have but I never would have imagined last fall that I would ever feel so good and hopeful again. I was 24 hours away from quiting my job and moving into a tiny apartment full of old people. It started with the vow to put my health first and I was kicking and screaming the first few things I made myself do but then the momentum picked up and it became so easy to keep doing the things that made me feel alive again. Yeah, I still have CIDP but I’m dreaming again. Life is good. And I’m going to bed now, I think it’s about dark.
Just take a baby step. You can do it.
Teena
Sorry Kate wish there was more I hope that you found comfort in everyone’s answeres.
I’m pulling for you.
God bless
More than just tired. I sleep 16-18 hours a day and want to know if this normal CIDP fatigue or something else. I haven't gained any weight, in fact I've lost more than 30lbs. and it's not due to not eating. My wife is very jealous of this because she's trying to lose weight and can't, and I "Eat like a pig" she states, and I don't gain a pound. Gary
OMG this is what I need to see this morning. Yesterday was the worst for me. SO very tired. I couldnt even hold myself upright in the bed. I slept 12 hours which is a RECORD FOR ME CAUSE i CANT GET MORE THAN A FEW HOURS OF SLEEP MOST NIGHTS. I was going to PT but was discharged a couple of weeks ago, and I know I need to continue exercising but I am so tired that I cant even get started. Im going to see my neuro Tuesday...I really hope he thinks of something different for me. I had IVIG in the hospital in Feb and as out patient in April. Started prednisone in May, but have gained so much weight from it that we have been trying to lower my dose. Right now I am dx with GBS since Feb, but I am wondering if it is really cipd, because I keep going down hill. New symptoms and increaseing fatigue. It is now moving into my neck and head.
Thanks for letting me vent. Have a great restful day. :-)
Indeed, easier said than done, but it has to be done.
Glen makes a few excellent points above.
I am a litle late to this site having been diagnosed in April this year, but with symptoms dating back to over 10 years when I all of a sudden had problems running along with coordination loss.
Now that I know where I am, I have set up a plan for myself.
No longer being able to ‘power through it’ like I used to, I now find myself looking for a piece
of motivating music to exercise on, ask a buddy to come over for a walk or peptalk and do whatever I feel I am able to do at that time.
I use a 2 pound weight while watching tv, do stretches on a kitchen chair, use a coffee cup as an imaginary weight…
As opposed to many of the stories I read here, I can not sleep without aid and then often for a max. of 4 hours a day, which makes you drag yourself to the next one.
I have lived without much discipline in life, but am fully aware that that is no longer a possibility if I do not want to end up on cruches.
Better diet and exercise are as important to a CIDP patient as breathing and we all know it.
Take a step in the right direction, no matter how small, try to stick with it and build on that.
We are ‘forced’ into isolation enough because we can not participate in regular everyday things, so it is more important to be a self-motivator than to someone else.
As has been said, easier put on paper than done.
Henk
P.S.: Let me know if you have any original exercises that work for you, I’ll try anything.
It's not original, but I find a recumbent stationary bike is one of the best things for me. It exercises my legs, doesn't require any balancing, and is comfortable to sit in. I do as much as I am capable of - usually, my legs are trembling when I get off, but an hour or two later I feel fine, actually a little better than before I started.
Bill
Coraghessan said:
Indeed, easier said than done, but it has to be done.
Glen makes a few excellent points above.
I am a litle late to this site having been diagnosed in April this year, but with symptoms dating back to over 10 years when I all of a sudden had problems running along with coordination loss.
Now that I know where I am, I have set up a plan for myself.
No longer being able to 'power through it' like I used to, I now find myself looking for a piece
of motivating music to exercise on, ask a buddy to come over for a walk or peptalk and do whatever I feel I am able to do at that time.
I use a 2 pound weight while watching tv, do stretches on a kitchen chair, use a coffee cup as an imaginary weight.....
As opposed to many of the stories I read here, I can not sleep without aid and then often for a max. of 4 hours a day, which makes you drag yourself to the next one.
I have lived without much discipline in life, but am fully aware that that is no longer a possibility if I do not want to end up on cruches.
Better diet and exercise are as important to a CIDP patient as breathing and we all know it.
Take a step in the right direction, no matter how small, try to stick with it and build on that.
We are 'forced' into isolation enough because we can not participate in regular everyday things, so it is more important to be a self-motivator than to someone else.
As has been said, easier put on paper than done.
Henk
P.S.: Let me know if you have any original exercises that work for you, I'll try anything.
I just woke up from sleeping 20 hours, I've read where others only sleep 4 to 6 hours and don't get it? Before I was diagnosed and on IVIG, I was sleeping 6 to 8 hours, now with IVIG and steroids, I get up at 5:30am and am back asleep by 7:30am, usually on my comfy couch. Most of the time my wife tries to wake me up at 11:00pm but can't and as far as exercise goes, well that's out of the question because I don't have the energy for that when I do wake up. Any comments? Gary
Yes Gary! I can relate ....... between the medication and CIDP sleeping is some what of a mystery for me. I get fatigue so bad I can stay in bed for days and still not feel rested or I can't sleep at all from the steroids. You just do what you can when you can...... for me the show must go on !
Same here Katie......... I have good days and bad days so my sleeping seems to depend on those factors.
I’m still waiting for some of the good days, and as far as work goes forget that, I’ve had to retire because of this. Gary