Yesterday morning shortly after rising I realized that once again the feeling of overwhelming fatigue had decided to visit me once again. The fatigue was so bad that shortly after nine I found myself climbing back into the bed. I was thankful that I didn't have any appointments that day as it would surely have been impossible to drive. I would like to know if others in the group experience this kind of fatigue and if so, would you please share with me how you cope with it...I do my best to keep myself positive but here lately it seems as though the mind chatter has become more and more 'dark' for a lack of a better word. I pray, read the bible and eat healthy foods but for some reason here lately the chatter has become more intense...I hope that this post isn't going over the top in negativity but I feel that there is someone in this group who could help me with this matter...
Thanks for listening...
Hi, Bobby again. Yep, you’re not alone
in this one either, I have those days too.
I try to focus on the fact that I’ll
have good days too when I have the
bad days, and how I’ll optimize
those good days. I have a Jeep I tinker
with, although my hands don’t work
as well as they used to. I do what I
can and try to be optimistic. It isn’t
easy. I had to sell my Harley because
my balance is all messed up, and I
can’t do a lot of things that I used
to take for granted. This hurts, it
sucks, and I hate it. But we’re
alive. I have my family and my
dogs. I figure it could be worse. Don’t
know if this helped, but after joining
this group and knowing their are others
going through this and that I’m not
alone has helped me. Hang in there!!
Yes, I have fatigue like that a lot. My neuro says "its the last thing to go." I think it will never go. I wanted to encourage you to join the gbs/cidp exercise and the living with cidp groups. There are a lot of talkative people who know exactly what we are going through.
My doctor asked me if I thought I was depressed.I said to him if you felt as bad as I felt you'd be crazy not to get depressed.We are all coping with loss and fear of loss of some sort or another.It was because of the fatigue I had to retire 2 years ago.Fortunately,I have got over the worst of working hard for 40 years and raising a family.Anyone of you with kids and stressful jobs have my utmost admiration-I found it difficult before CIDP.
The question ought to be-why are you so damn happy?!!!
I considered anti -depressants,until I remember smashing up a wardrobe when I came off Seroxat,which IMO is evil.
The alternative medication was recommended by a certain Dr Spinspoon.I suggest you look him up.He is the man responsible for my positive mental attitude.
Take good care.
I deal with that fatigue almost every day and as a result must lay down and nap for at least 2 hours before I can do anything else. Fortunately the naps do not interfere with my nighttime sleep. Sunday I slept 16 hrs because of the fatigue factor. (3rd time this year.)
I am also fatigued - my physician suggested antidepressants but I chose not to do that. It's hard for others to understand how tired you can feel when you've actually done nothing, but that's the way it is and it isn't every day.
I just went through a 2 week low with fatigue. It was hard, I've not slept well now for several years, waking up 4 to 5 times a night and unable to get back to sleep, mostly the pain and or the tingling buzzing legs or RLS which I think is driven by the CIDP which in my case is driven by Lyme Disease. By morning, I would ache all over and could not stay in bed, it hurt less to get up and slump in the chair with a huge cup of coffee to try and raise my energy. I try to walk for 45 minutes every day 5 or 6 days a week. The last two weeks not so much 2 - 3 days by really making myself go out there and move, slowly but keep moving.
Just this last week my Dr. put me on Lyrica and stopped the Codeine, Paracetamol, Ibuprofen, and Acetaminophen. The Lyrica has been wonderful so far, The pain and tingling are down by 80%, and I'm sleeping 5 or 6 hours out of the night, and when I wake up in the morning I don't hurt, I could stay in bed longer if I wanted too. It's a big difference for me, I hope it lasts!!!
I said all that to say, I started walking 1.5 years ago on the advice of my Dr. It was hard, but it has been a total blessing. I am stronger for it, I feel better because of it. I think my good days are better and my bad days are less bad because of it. My legs are still rubbery and I still have issues with staggering at times, and I can't walk down stairs without watching my feet and hanging onto the rail but the walking has been totally worth it.
I also suffer from fatique on a daily basis which strangely according to my not so helpful neurologist is not a symptom of cidp strangely the same consultant who it has taken over a year on ivig to accept I get aseptic meningitis
Fatigue and weakness have plagued me the last month. I am getting IVIG Infusion’s 20 mg 3 times a week, for last 2 month. I am frustrated too. I am going to look in integrated medicine cuz this feels like pure torture.
Hi Roy -
I have varying levels of fatigue almost every day. A doctor who doesn't recognize that as a major symptom of CIDP is just not informed nor qualified to treat you.
I've learned to do what my body asks. If I'm tired, I try to rest and enjoy it - by watching some crazy TV show or reading , or doing Sudoku, or just napping. I try to get a little exercise every day regardless of whether I'm tired or not.
I have a different approach to depression as it relates to chronic illness. Since there are about 6 specialists on my case and I'm taking about 10 medications, I figure a high priority treatment should be for my mind and spirit. I was actually advised by my insurance company to see a psychiatrist or psychologist to be sure I was strong enough mentally to handle all the hospitalizations and various symptoms. I do take Zoloft, and it definitely takes the edge off the depression that was looming. Who wouldn't be a bit depressed dealing with CIDP?
For me, this is a good balance of keeping things calm, listening to my body and enjoying life to the fullest given the circumstances. I feel happy and blessed. If resting, taking meds and seeing a shrink are part of that - more power to me. I'll do whatever it takes. :-)
Best to you. Stay positive!
Hi again Roy,
I'm convinced of the benefits of listening to birdsong.When I was where you are I could hear them in the garden from my home-bed being home.Worth a million dollars.
Ever thought of getting some canaries?
That's the name of my football team-some people call it soccer-wrongly in my opinion.
The other thing that kept me sane was wall-to-wall 5 day test matches in cricket from most civilised places in the world.I love cricket and I think it was cricket that I owe my life to and the birds,of course.
I'm treating myself to a proper wet shave tomorrow.There's a local Algerian barber who is a master with a cutthroat razor.
I guess I'm saying the little things count when the only honest answer to how do you feel is like excrement warmed up.
all the best.
I have found that spending time with the kittens that we are getting back to health so they can be given to a new home is great therapy. But as always when the body says so I lay down. We had 8 kittens, now down to 6, but what pets provide as far a therapy goes is priceless.
Hi Roy and everyone. Your post is very timely for me. My daughter is home from school today because the fatigue, exhaustion and anxiety is too much for her today. Your post helps me understand how she is feeling. I can also read all of your posts to my husband to help him understand more of what is going on in her mind and body. Thank you all.
Sometimes the openness and honesty of this group of people amazes me. Yes, we are tired, our mind and body are working all the time, trying to cope with the pain. I have a room upstairs that is surrounded in windows that look into the woods. I turned the stereo up to wall shaking and listened to an old Subdudes CD, I forgot for a moment I have this disease. Then I sat outside and listened to natures music to wind down. Music, wildlife, meditation,(that's not always easy) and two dogs who are my best friends, this helps get me through the day. Peace Nancy
Yes I love this group. Having CIDP can confuse folks cuz we may not look ill. Today I got a lot done, a friend came and did some housework which melted my heart. But my dogs came in and just laid close they sensed I was tired. Love those puppies.