Brain fatigue with CIDP
AnonymousJune 7, 2007 at 4:30 am
Hello fellow CIDP sufferers
Does anyone else suffer from brain fatigue? I have found that my concentration span is awful. I can’t even read most of the posts on the forum – especially if they are long – as I get too tired reading them!
My Doctor says it’s because everday stuff – physical activity – takes more effort to do, therefore making me more tired. I am halfway through a law degree and use to be able to read quite a bit (pre- CIDP) before becoming tired. I have deferred for a year from studying but I’m not sure how I will cope when I return. The ambiguous nature of CIDP can be quite frustrating can’t it?
Kazza – A problem shared is a problem halved.
AnonymousJune 7, 2007 at 9:11 am
Hi Kazza, The brain fog gets better. I have found just before, during and for many weeks after my relapses I have brain fog really bad. It is getting better, it takes alot of work, like grade school homework, sudoku, puzzels and word searches have helped quite abit. It is common among GBS/CIDP people, don’t be too hard on yourself. I like to refer to those thick fog moments as My Pre-Senior Moments. It is real, not sure what causes it, but you do have to keep a positive attitude towards it and you need to laugh at yourself along the way. Take Care.
AnonymousJune 7, 2007 at 10:35 am
I have the same problem. Since I’m still teaching, brain fog can be “deadly” for a teacher in middle school. 😀 My doc proscribed Provigil. It works great. It keeps the mind “awake” but you are not “wired” nor is it addictive. However, it is expensive. Most insurance companies are going to want something in writing from your doctor saying the Provigil is medically necessary before they will agree to pay for it.
Do a Internet search for Provigil and check it out, than talk it over with your doctor.
Just in case you have a problem getting the insurance to cover the cost there is a generic for Provigil. The generic name for Provigil is Modafinil. Modalert brand Modafinil made by Sun Pharmaceuticals is fantastic value compared to Provigil. It is available in both 100mg and 200mg size tablets.
AnonymousJune 8, 2007 at 10:12 am
I can relate to the “brain fog” and teaching….but I would call it more being “brain dead”… If someone yelled “fire” at the end of some days, I think I would just stare at them and go on sitting there… Things would just not “register” at these times… I also had the problem of trying to concentrate driving home (about 30 miles) and having trouble staying alert… I thought sometimes that I may just fall asleep at the wheel… Now THAT is really “brain fog” or whatever it is… Hmmmm..??? I wonder what the medical name is for this symptom..???
AnonymousJune 9, 2007 at 12:01 am
Just blame it on the CIDP and the meds! Forget what you are saying in the middle of a sentence? Both. Worse for me is that I have not read a complete book since my onset…I used to read 4-7 a week even when I was working full time! I have trouble focusing on a newspaper even…I think it’s the touch aspect…fingers on page, turning page. Can’t feel page to turn it now.
Lucky for me, the computer screen hasn’t been a problem. I just wish there were more things available in plain old print to read on the net.
For me at first, I really don’t know which was worse, the pain or the medications for the pain. It took some tinkering, not a lot as for some to get what works for me to work. When I switched to my last med 2-1/2 years ago, I got my brain back. I’ll take pain killers when needed, but only then. I find now I only get ‘foggy’ when overtired, stressed or when I miss a pill. The last event is one I do NOT recommend.
AnonymousJune 9, 2007 at 3:15 am
I too can’t get stuck into a novel like I use to love to do! I’m flat out reading a few pages and then I become too brain fatigued to continue. At least I don’t spend as much money on books as I use – A book last me ages now. I also have trouble with my eyes – I sometimes find it hard to focus and eye movements can be painful sometimes so that does not help.
Also I can’t watch a whole DVD now either in one sitting since the onset of CIDP – As again I get too tired – It’s not a problem though – I just have breaks in between. It’s so wierd isn’t it?
Thanks again for all your replies
AnonymousJune 9, 2007 at 1:24 pm
Before I get tired here I am going to try and add to this. I have GBS so those of you with CIDP can not claim this all for yourselves. I am seeing improvement!
* Watching a movie when I first come home from hospital would last 10 minutes….now I can watch the whole thing. This is also why they invented the DVD! Stop….start….stop….start…..rewind!
* Reading a book……ever hear of condensed versions or books on CD? All these inventions have been made for us!
* I had his title changed from hubby to Chauffer I am just starting to drive more and more and longer distances. I actually like the idea of having a buddy to go shopping with. Friends don’t help you carry purchases into the house and put them away! Also, very seldom do my friends offer to pay for my shopping spree! What am I talking about it is groceries! 😮 Never before did I enjoy going shopping and buying groceries! I can not tell you the last time I read a store flyer for their next sale items. I have turned into my dog and am out the door when anyone says “Want to go for a ride?”
Guess it can be very depressing if you let it be. It is a fog, brain fart or gbs or cidp moment! I have to admit to combat this I have a Journal and I write down what I want to really get done that day……I give myself a week to get it done. I have become a farmer….watching the corn grow. I see that weed, the next day I see it has become taller, the end of the week it has roots that have reached China. I actually have been making it harder on myself, but I don’t have the concentration to respond to a thought. Hang in there, it does seem to get better! Now make a note for yourself to buy a Daily Journal! At first treat it with humor, it is still is there later mention it to the Doctor. That is the only way they learn what else comes with GBS and CIDP is when we mention it to them.
AnonymousJune 9, 2007 at 3:29 pm
BRAIN FOG!!! Just the word I needed, and have been in need of for years! I really can relate to what most of you are describing – I don’t forget what I was going to say in the middle of a sentence, but for a couple of days this week I was feeling rather poorly, and I forgot the most peculiar things – or lost my consentration in the middle of doing things – like forgetting to put the lid back on the cat food tin and putting it back in the fridge. When I rediscovered it on the kitchen table, it was kind of a surreal experience, because things like this have never happened before. Heavy head with eye focusing problems is not something new – and I’m in the middle of such a bout at this very moment. It has been a strenuous and extremely hot day!
AnonymousJune 9, 2007 at 6:06 pm
I’ve had this problem of brain fog for years and always blamed it on getting older and the increase of fatigue that appears to come with it. It’s been getting significantly worse since I came down with CIDP a few years ago but I still attributed it to age. Now I am starting to wonder if CIDP doesn’t make it worse. I also cannot stick with a novel anymore and turned to short stories or essays.
I think the brain fog is directly connected with fatigue because during the rare times my head feels clear I don’t feel fatigued. And the increased fatigue may be directly connected with our immune system constantly fighting to eliminate the myelin (or MAG in our case, Allaug), mistaking it for an intruder. Whenever we come down with a cold, we often feel fatigued also.
AnonymousJune 10, 2007 at 5:13 am
Thanks for the replies. Allaugh excuse my ignorance but does it get hot in Norway? I need to read up more on other countries – That is if I didn’t get too tired to read! I live in QLD Australia and it can get darn hot here and the heat always weakens me.
Norb – you just explained what I thought was happening to me regarding the brain fog, first I thought it was the fact I was getting older, then when CIDP reared its head, I realised that it was the culprit.
Thanks again everyone
Kazza – A problem shared is a problem halved
AnonymousJune 10, 2007 at 8:31 am
I won’t call it ignorance if you just try to find answers to things you don’t know, Kazza!
I don’t know if you’ll call it “extremely hot”, but 25- 30 degrees centegrade is hot to me – and I had to walk for quite a distance in a town where the sun was pounding down with no movement of the air whatsoever, I don’t know how effectively warm it really was, but too hot for comfort anyway. It was so nice on the way home to go by boat about 30 knots and then at last the air was moving and cooling me down a bit. My head was not working well for the rest of the day, though.
Geographically, Norway is about as far north as Alaska, but because of the warm water of the Gulf Stream (google it for more information) we, and the whole of northen Europe, has a much milder climate than other places on the globe at the same latitude.:)
All the best
AnonymousJune 10, 2007 at 10:39 pm
your stress levels, what you do, or try to ‘overdo’ and also what other meds you might be on. This is an area that it might be best to work out carefully with your GP or pharmacist…and in all likelihood, THEY have not experienced anyone who is on your [our] combinations of medications and the IVIG-if you are on it.
In some ways, it might benefit to read about folks being treated with Chemo for cancers…they call it ‘chemo’ brain. Some of the meds we take do some similar things. We’re not alone in all this.
Don’t forget that our bodies have received one very big insult in our acquiring CIDP. They [the bodies] are trying to deal with a lot of new things…medications, functional changes, damage and attempts to heal. We as persons are confused…just imagine what is going on at the cellular [program] level? Maybe ‘Brain Fog’ is a way of our selves calling for a ‘time out’!
AnonymousJune 10, 2007 at 11:24 pm
thanks for sharing. I thought it was me not handling things well…I took a loaf of bread out of the freezer sat it on the workbench and closed the freezer and went upstairs. Three days later a friend found the loaf of bread where I left it! I can’t remember so many things and it is so frustrating. At least I know I am not alone and the CIPD might be causing part of the problem.
I have started writing important things down!
AnonymousJune 11, 2007 at 1:18 pm
I deal with similar problems. I lose focus very easily. I am also very tired. I slur words lately and my spelling has worsened. Everything has changed lately because of CIDP. But I also think it might be because we are working ourselves harder and we’re tired. Also, if you’re taking a lot of new med’s, that could be the reason. I was pulled away from school as well. Hope you feel better and good luck with Law.
AnonymousJune 12, 2007 at 2:14 am
Thanks for all your replies. I’ts good to know other people understand the brain fatigue. Even though you guys are unfortunate to suffer from it yourself. I think the brain saying time-out idea is great – I do tend to do too much – I have an adult autistic son at home who needs my help with some things and there are days when I feel I need help myself!
Kazza – A problem shared is a problem halved.
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