Fatigue

This morning I awoke thinking that perhaps I would try and do a little something in the yard...Shortly after going outside and walking the dogs around the yard, I realized that I was already worn-out. My question to those of you who might read this, is, what can I do to help me with this fatigue?

My recent blood work shows that my Hemoglobin is 13.8 and according to the VA scale which is 13.9 - 18 it is considered as being Low...My Monocytes/100 Leukocytes are 9.4 and the range for these is...3-7, thus putting them on the High side...If you are familiar with these tests, I would love to get your input...

For those of you who gave me your input on my seeing the Chiropractor, once again I say Thanks...

Roy...

I am also at the mercy of bad fatigue and even sleep/resting doesn’t help much I am always tired and drained so you have my sympathy and I also would love any helpful suggestions

Well I am now in remission, but still suffer from the fatigue factor and still have to lay down during the day. It does not take much at all to wear me out, My VA labs are similar to yours, and my new diagnosis is not MGUS with neuropathy, Still four letters just not as hard to pronounce.

Honestly I am not sure how the numbers play into the fatigue, but it is very frustrating. I'm hoping that the Mayo Clinic will have more answers, and will be able to shed light into the falling, double vision, and autonomic issues that KU medical could not. That appointment is 1 month away.

Roy --

I am 3 years removed from my onset of GBS. I had 6 weeks extensive hospital treatment including physical therapy, B12 shots and IVIG. That was followed by 6 weeks home phsical therapy, 6 weeks outpatient physical therapy. At the conclusion of that 18 week tme frame, they said I was on my own.

My neuro says I now have CIDP and will not ever be completely healed unless some miracle drug is discovered.

I take gabapenton every 6 hours, walk with a cane and keep moving. I work full time at a sit down job and run a small Ebay store selling antiques I buy at Estate Sales.

I am always tired, when I am at home, I catch myself nodding off. Gardening is not an option. I have hired my son-in-law to be my facilities engineer. He cuts the lawn, plants flowers, weeds, and edges. I pay him a small amount that gives him money for gas plus I pay for his cell phone because I have a business cell account.

My suggestions are as follows:

1. do what you can

2. keep moving, even a small amount of exercise is very helpful.

3. Don't be afraid to take a nap.

4 Hire someone to garden for you. You be the landscape engineer. Allow your employee to be your facilities engineer.

My husband gets out of bed in the morning and goes straight to the couch and lays for hours, doesn’t seem to have any energy ever, feel so bad for him, we just keep praying that something gives, God Bless All

Unfortunately, fatigue seems to be something that just comes with CIDP. Right now, it is my single biggest problem. I have regained a lot of my strength, and I can do most things I used to be able to do, but I get very fatigued if I try to do anything physical for more than an hour or two. My suggestions:

  • Getting plenty of sleep is critical. If I have a bad night's sleep, I know I am going to suffer the next day. On the other hand, if I get 8-9 hours of sleep, I will feel much better the next day. Do whatever it takes to get a good night's sleep.
  • By the same token, naps can be very helpful. If I try to work in the morning, I will be good for nothing in the afternoon. But, if I take a short nap after lunch, I feel much better the rest of the day. I used to resent the time lost, but not any more. My wife has learned not to bother me when I stretch out on the sofa. My family doctor suggests not to nap more than 45 minutes, though, as it will upset your sleep that night.
  • Try not to overdo it too much on any one day. It is better to spread a job over 2 or 3 days than to try to get it all done in one day. If I get overly tired one day, it might take me 2 or 3 days to recover.
  • Try to exercise as much as you can. You have damage to your nervous system, so it is important not to let your muscles get weak, too. I try to go to the gym 3 days a week, and do some kind of exercise on the off days (a walk, a little gardening, etc). It is really hard and unpleasant to do (not to mention embarrassing when little teen-aged girls can do more than me), but I always feel better after I finish. And I can tell that I am slowly regaining muscle tone.
  • If you have had any thyroid problems, ask your doctor about a thyroid supplement. I had half my thyroid removed, but my endocrinologist said my thyroid hormones were still in the normal range. Well, they were in the lower half of the normal range, and I finally talked her into a low-dose supplement (50 micrograms/day). It helped noticeably. I am still in the normal range, but now in the upper half, so it is not excessive.

I have looked into so-called medications for fatigue, but what they seem to actually be is medications for counteracting sleepiness, not really fatigue. If I thought I could talk my doctor into prescribing low doses of amphetamines, I would try that, but I know he would never go for it.

Good luck,

Bill

This is what the medical model labels "residual symptoms".

This is the bit I'm stuck with too.I go upstairs and have a bath and clean up and I'm shattered.It's what meant I had to give up working too.In the end I couldn't ask if I could go and lie down for an hour,got grumpy and realised I had to accept this is one part of whatever "having CIDP means" that is a tough enemy.You have to learn to try to beat it with your thinking.Some in the UK favour the Spoonie theory of energy.

What I do is store mine up to do something I will do,which is these days marching and protesting to save the NHS,a care system without insurance worries over treatment costs,which is one I'm prepared to use all my energy to fight for.This is my absolute priority-I know it means a couple of days not being able to move but it is worth it.

Once I accept the inactivity,it does not mean purposeful activity stops.Time to reflect and meditate is a joy and the internet means you can still communicate.I'm lucky I can just manage to get to the pub and back.

I've spent a lot of time educating myself too,not in any formal sense.I think there's enough evidence out there now to suggest medical cannabis is appropriate for the condition too,and,also,that the laws in the Uk are neantherdal if a patient is criminalised as a result.2 aspects are particularly helpful,the sativa for a positive mental outlook,better than Seroxat, and indica for a cramp-free,spasm-free,night's sleep,beats opiates.

That's how i self-manage what you describe.It's Orem's nursing model-from a patient's perspective.

http://currentnursing.com/nursing_theory/self_care_deficit_theory.html

I hesitate to write this, but honestly what has helped me is getting my mind off of myself and my disease. I have realized that just because I have CIDP does not mean I can not go out and do something for someone else. We all have gifts, share it! That is The secret to living with CIDP.

Jeez, I believe you are exactly right. Though we ourselves are important,life is not all about ourselves. The distraction and rewards of focusing on some else, something else are beyond price. I mentor a 3rd grader 1 hour a week, volunteer at the church and at the local food bank and try to better connect with people I encounter daily. Not for me, but for what I may give to them. Surprisingly, I get back at least as much as I give. I don’t stop trying to do for myself, but it’s not all that I do! And I does make a difference.

I get fatigue in my legs, particularly when it's a few days from infusion time. I go ahead and go to my shop and after awhile of working on whatever project I'm on, I forget about it and do just fine. When I'm walking back to the house after my 5 hrs. of work time I feel the fatigue again. If I push myself past that I liable to get cramps that evening. So my thought to you is, just go ahead and do what you want to and push through it, you may be surprised.

I do strive to be upbeat everyday and make a positive impact on the people I encounter each and every day. I feel truly blessed each day I wake up. The problem is that when I get fatigued I start falling. My legs will just give out from under me, and I am now up to 56 falls for this year, ( over 100 in 3 two and 1/2 years). So even in remission the falls have not stopped. My wife gets so mad at me when I don't want to lay down, and me trying to cook any more can become very ugly real quick. I use an exercise bike, have lost weight, am eating healthier, and am still losing muscle strength.

I don't know the answer, but hope the Mayo Clinic can help.

In my case pushing thru it leads to more falls. And after 100+ falls my spine now is bulging everywhere along with narrowing and stenosis. But I will keep bringing a positive attitude to those I encounter.

I go until I can’t then I sit or lay down. Some times I get allot done sometimes more than other days.

Hi Roy,

I few years ago I got GBS and was almost fully paralysed for a week, after treatment I was getting better and then developed CIDP. Thankfully I'm not as bad as many on this site, and over here in Israel we have the equivalent of the National Health Service, so I've no worries about treatment costs.

My understanding of GBS/CIDP is that the nerves cannot communicate with all the muscles, so on one hand it doesn't matter how strong the muscles are, they are not under control, so we fall. But, on the other hand, there is still some nerve connection, but to not all of the muscles. So, the few muscles that are being used soon get tired as they are being overworked.

I know this is not much help when you're tired, and I don't know of anything that will help, except to regenerate the nerves. I do seem to be getting slightly better over time, or maybe I'm just getting more used to the condition!

This is my understanding of why we get tired, but as I'm an aircraft engineer, not a doctor, it may be wrong!

bteeter. I am no dr. But I wonder if your falls are muscle fatigue or poor balance, or some of both? For 2 1/2 years, I have periodically seen a Physical Therapist (P.T.). Doing exercises, practicing some to improve my balance. The very important aspect of these appointments is P.t.s have specialties, just like Dr.s. My P.T.'s specialty is Neuro Rehabilitation. He is trained to watch for clues in my actions and develop exercises to help me to improve function. I see him 2x’s a week for 5 weeks, then go off on my own for 3-4 months, doing the exercises on my own. Then I go back in to assess where I now am and set new goals, modified exercises and new ones to help me to progress further. Safety is important. Falls are a big concern, but a P.T. Can help you to perform actions that guard against falls, while still progressing toward your goals. The other very important aspect is you! You have to adjust your attitude, to protect yourself more effectively. I have had little experience with falls, fortunately, so my understanding of why you fall so much is seriously limited. You need to figure out why this is happening and adjust your activity to find the middle ground that avoids falling but still allows you to exercise and work improving your muscle function and strength. You can figure this out! You need to figure this out! My prayers are for you to find safety and great progress that will help you mentally as well as physically! Best if luck to you.

If what my Dr. in p.t. at the VA told me several years ago is correct then as the nerves in my legs get fatigued they simply stop receiving messages, and the legs cease to work. So down I go. Most morning when I get up I can move about the house without the cane with a steady gait. This morning was not one of those days. I have been staggering, and using my cane within an hour of waking. And it hasn't helped that I have had a miserable migraine either. So what did I do? I went out into the heat and bright sunlight to visit with the animals, and sat with some kittens for a little while in front of a fan. Now my legs and feet don't feel like anything close to remission and neither do my hands.

Peace to all an may you be blessed I'm going to bed for a while.

bteeter,if it has been several years since you have had P.T. I would find of who’s specialty is neuro rehab. He/she can evaluate you and customize a program that will keep you safe and help you to progress. We all have days that are better than others and those are days, like what you describe, where it is best not to push it. I wish I had a solution for this, but it is now just another part of our life these days. Good luck to you!

Thank you, I know there is no one here locally, so I will have to talk to my neuro about finding one. And again hopefully the Mayo Clinic will have some Ideas also as I am supposed to be in remission.

I have an appointment with them on 24 Sept.