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Is your pain worse at night and how do you deal with the cognitive dysfunction???

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Posted 8/7/2009 9:05 AM (GMT 0)
Hello everyone, I'm a fibro sufferer and I thought I would finally join a forum where people actually understand the pain and frustration I am going through. It's 2 am here and it's like this every night. I don't get much sleep because the pain is worse when I have to sit in one place for too long. I tried all the medications, but none of them seem to subside the pain. I do not suffer from any type of depression, but I do often feel somewhat stressed. This is probably because I am overwhelmed by the way my condition limits me, since I am a relatively ambitious person with big dreams.

So, I am just curious if the pain is worse at night for anyone else? Also, I am a SR at a major university majoring in PR and am aspiring to pursue a Master's Degree. The problem is that, even though I constantly have creative insightful ideals running through my brain faster than I can document them, college is often a struggle. Whether I am in pain or not, I frequently suffer from cognitive dysfunction. I have a terrible time with application and recognition. Whenever I read even the simplest documents, the words do not process and it's almost as if I am reading the text in a foreign language. I do poor with processing information and often become overwhelmed and confused with directions. My concentration is also terrible and I always seem to be struggling behind the rest of the students. Of course I try to focus on my strengths, so I excel very well at writing and am pursuing a career as a copywriter. Even in this type of career a person must be sharp and on key with accuracy, so what is your suggestion to break through this debilitating roadblock that is preventing me from accomplishing my goals? Most of my professors are completely unaware of my cognitive limitations, because I seem very articulate and sharp on the surface. Because I'm getting so good at 'faking it', whenever I make mistakes it's often construed as laziness or carelessness. Unfortunately, these problems are making it so that it is taking me 3 times longer to complete college than the average student. I have so many things I want to accomplish, but I fear these issues will get the best of me. What do you suggest for me to overcome the poor concentration, poor application and processing, and other cognitive issues I am experiencing. Any help will be greatly appreciated. Also, even though I am an advanced writer I often make simple miss spellings or forget how to spell simple words that someone of my experience should not be afflicted by. As if that isn't enough, I also have problems transposing numbers and letters when writing and typing. I type relatively fast, so I sometimes get ahead of myself when typing and mix up the characters in the text. Does anyone else do this?

Finally, whenever I am writing an article or essay, I will sometimes look at the page blankly for hours as if I am a complete blank. I am usually pretty witty at getting the job done, but when I go to edit my work it's like I can't even make sense of my own words.

Post Edited (Stacey253) : 8/7/2009 3:10:55 AM (GMT-6)

Posted 8/7/2009 1:53 PM (GMT 0)

Hi Stacey and welcome.  My pain is worse at night.  The minute I lay down the hip/leg/thigh pain really kicks in as well as "The Skin Burning".  I spend most of the night wandering around from place to place trying to get comfortable.  Because I am allergic to narcotics, I have to rely on Advil/Tylenol for a pain.  I also take 5mgs of valium for Restless Leg but I still feel the pain through the temporary haze.

I am a writer and have four books in print(satirical humor) and understand the frustration that The Fog brings with this disease.  My fibro has worsened over the past three years and I have not been able to complete a manuscript because of the typing mistakes and loss of words that are perfectly coherent in my head but look like jibberish on the screen.  I am also on Lexapro (2 yrs) that I agreed to take after four members of my immediate family  died within a short period of time.  I am hoping some of my cognitive problems are from this drug, as it dulls the emotions, makes my eyes blurry and stifles my ambition.  I am trying to wean off this drug but the withdrawals are nasty...Not to say that it is not a life saver for some people but I want off!

You are A LOT younger than I am and would hate to see this disease rob you of your passion.  I have had fibro for longer than you have been alive and somehow managed to pace myself and get the job done.  I have put my writing on the back burner for too long and I hope I can get back to it again and not let it's mighty wrath kill my spirit.  My husband is a college professor and encourages all of his students to make him aware of any 'disabilities' they may have and he makes adjustments for them.  Some have test anxiety...many are in the military and have all kinds of stressful issues.  I might suggest you talk to your professors about your Fibro.   If they are worth their weight in tenure they should accomodate you and give you some slack.

I wish I could offer more help but all I can do is totally relate to what you are going through.  Fibromites are tough and strong. 

How many typing mistakes have I made in this response???  about 16, and those are the ones I caught!

Hang in there....follow your dream and kick fibro in the butt!

Huggies

Donna

Posted 8/7/2009 9:15 PM (GMT 0)
Hi Stacey -

Wow. I can relate to all the stuff you're saying about the cognitive dysfunction. Some others have had similar questions so I decided to write up my recent experiences with neuropsychological testing.

There is a test procedure that will give you objevtive measures on where you're at. You're still a student and wish to pursue a high functioning career. You could really use a realistic assessment of what's going on. You might wish to consider having a neuropsych eval. I made a separate post "How thick is the fog". Hope it helps in some way.

I'm very sorry you're having these cognitive issues. I know just how unsettling and frustrating it is.
Posted 8/7/2009 9:27 PM (GMT 0)
Hi Stacey,

you sound a lot like me.  I am currently inches close to finishing my master's degree.  I started back to school when I was 38 and best I can figure, the fibro kicked in sometime about a couple of years ago.   There are periods of time when I read something and it makes no sense to me like you said.  When I write, I have periods of staring and periods of productivity.  I've always paced myself in school work because after awhile your eyes cross and you cannot do it anymore.  If I am having difficulty understanding, I just take a break and come back to it.  I am an avid statistical analysis fan and take statistics courses whenever I can and go to workshops and tutor statistics.  Statistical analysis is complex, but I love it.  It was really upsetting the first time I tried to do something and couldn't think.  I could not figure out which was the dv and which was the iv (a very basic statistical concept).   But someone told not to stress, take a break and try again.  That combination helps me more than anything.

Frame of mind when writing can help, too.  When nothing appears to be working and I cannot write, I consider it percolating time.  The writing is cooking in my brain and working itself out some.  I even teach my students to put something away and come back to it. 

You should also be able to get disability sesrvices from your university. Find out what services are available and see if you can get some help.  I would also talk to trusted professors about your difficulties.  I talked to my graduate student advisor and my thesis chair and got more understanding when I had to go to the doctor or when I was having trouble thinking.  As long as you don't make it a constant excuse for not getting work done, they should understand and be supportive.

Let us know how it goes,

Sue 

Posted 8/7/2009 9:42 PM (GMT 0)
hi stacey,
just wanted to welcome you and say you're not alone. I habe the exact problems as you but don't have the pressuers you have so can cope better with it. I do feel it's getting worse but i can't get anyone to take me seriuosly about it. I have just started telling customers where i work that i'm a bit deaf so coul d they just speak more slwoly so i can take down thier info.
I hope you can work it out. I do find plenty of water, co enzyme q10 and ginko biloba help with concentration. If you're gonna try the ginko biloba just make sure you talk to a qualified herbalist as it does interact with some prescription and otc meds.
take care boo
Posted 8/7/2009 10:10 PM (GMT 0)
Hi and Welcome, Stacey,

I can definitely relate to your post. Although I have more stiffness and tightness in the morning, the pain is definitely worse at night, so I have a hard time falling asleep, too. I just posted something kind of related to this, actually, and am curious to see how others might respond to it.

As for the cognitive issues-oh, boy, do I know what you're saying! I am also in college and definitely have a harder time getting things done quickly. Even though my grades are in the A/B range with all of my classes, I absolutely feel like it takes me much longer to get my work done. I've even noticed that it takes me a lot longer to take exams, whereas in high school I was always one of the first one done.

I don't have a lot of advice on how to deal with all of this-I'm still trying to figure it out myself-but I did want to let you know I SO know what you're saying!!

Welcome again!

~Danielle
Posted 8/7/2009 10:51 PM (GMT 0)
Hey there,
My pain is definitely worse at night, starting at around seven and on. Sometimes it is unbearable and I also cannot sleep even though I am on sleep medication, you are not alone in this! And I also get cognitive problems, before all of this began happening I was amazing at remembering things, I could recall a number that I came across three months before and now sometimes I cant even remember something someone told me two seconds before. It can be and is incredibly frustrating, people dont seem to understand and look at me as if I am stupid. So the point is you are not alone in all of this, we can all understand what you are going through. I dont know if any of this helped but I hope it did at least a little bit!

Take care,
Amanda
Posted 8/8/2009 12:30 AM (GMT 0)
I think I understand. I found a work-around back when tape cassette recorders were the edge of tech. I would record a lecture, then spend the time later to transcribe just the lecture parts to another tape. After editing, I found that I had learned what I needed.

My adult daughter has recently acquired a device called a Livescribe Pulse Smartpen which is very cool, and more useful. The sound files can be edited digitally and the note taking/playback is way cool. There is an app that is a free trial to convert your notes to editable text as well. All notes are exportable in pdf format and can be printed.

I've actually used her pen as I installed the software for her, I love it!

Good luck.
Posted 8/9/2009 9:33 AM (GMT 0)
Stacey,

I'm also a senior undergraduate and I have the same problems as you. I took last fall off from school because I was so stressed out, and even now I'm still trying to do the work from last semester, for which I took an incomplete grade, as well as documenting the archaeological field school I attended in Spain this summer and do research for which I received an Undergraduate Research Award from my university. I'm expected to write a senior honors thesis for this research and also present on it in April. I also have an internship with a professor lined up for this fall as well as a full course load. And I can't read a darn thing. I still devour novels as quickly as ever, but anything textbook-y just turns into gibberish in front of my eyes. I have to read it aloud, one word at a time, and I still forget the beginning of each sentence by the time I get to the end. My dyslexic boyfriend has an easier time reading this stuff than I do. I have issues with writing, too. I try to write anything formal and it's like my brain can't communicate with my fingers and make them type out the words.

The biggest thing I've done is to talk to my professors about it. I've made an effort to be very open with my professors and friends at school so that they understand my problems. It helps to be open with classmates because then they know why I sometimes wear a wrist brace, why I'm the only student allowed to use a laptop in class, or why I don't turn in my assignments on time or sometimes in the same way. One of my professors last semester agreed to interview me extensively on subjects instead of having me write papers, which was a godsend because despite the fog I still find that to be easier than trying to write. Most of them have given me special extensions on assignments. One of the professors in my department has CFS and she happens to be my adviser, and that's also a really good thing for me because she totally understands and offers suggestions I'd never have thought of. Everyone is really supportive because they know my adviser and her situation already.

Despite my best efforts and the cooperation of my teachers, however, it has definitely affected my grades and I really hope it doesn't affect my chances of getting into the graduate program I want to be part of, or of finishing my degree on time.

I am blessed with professors and classmates that understand and are very compassionate without being pitying. My best advice is to be open. Don't share too much, because you don't want people to think you're looking for pity but if you're matter-of-fact about it and can smile about it or make jokes, they take you seriously and are willing to understand. This is especially true for me as my fibro is more visible than it is for some other people. I often wear wrist braces and I'm the only student (okay, there might be one or two others) on a campus of 12,000 that has a rolling backpack. Most of my classmates and professors have also been witness by now to my episodes of faintness and low blood pressure, which may be unrelated but are observable signs of being sick all the same. And now that I've hurt my shoulder I wear a sling when it bothers me since over-the-counter pain meds don't do a thing for me unless I have a headache.

I know this already such a long reply, but I wanted to also comment on neuropsychological testing. I'll leave the details to Rich's other thread, but I wanted to say that it's an expensive test which my insurance did not cover, and it didn't tell me anything I didn't already know about myself.

I wish you the best of luck in finishing your degree and pursuing a normal career.

-Sandi
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