FIBRO mind vs. FIBRO body

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Sep 6, 2006.

  1. mrpain

    mrpain New Member

    It's one thing for the fibro body to suffer with pain, fatigue, ibs, and all the other symptoms, and it's also an everyday struggle that most people will never understand.

    But the fibro mind is really starting to get to be more than I can handle these days.. I don't know if it's just me or if any of you suffer from this, but my mind is causing me all kinds of anxiety, confusion from time to time, and of course brainfog..and it's really more to it than that...........

    It's a miserable feeling and hard to cope with everyday life. It's also the sensory overload that is overbearing. When you put this all together, how can one even attempt to look, sound, or be human?

    For instance, if I have to go to my daughters school for any reason....or, When I have to take her to the doctor and actually have to talk to her doctor, and etc.... So my question is, how do ya'll handle this and do it day after day. I know we're all not the same in our illness, so I guess I'm talking to the ones who can relate to what I have just written...(Sorry this isn't a positive post, but I'm having another bad week so please forgive)..



  2. romanshopper

    romanshopper New Member

    no, I understand. Don't be sorry. I have the same problem. It is almost as if someting is killing my nervous system sometiem. Like today - I don't even know where it went. I was fine, felt bad a bit, went to bed, just got up. DH said I got up earlier, but I don't recall doing that.

    The pain is not as bad for me as the mental stuff.
  3. kirschbaum26

    kirschbaum26 New Member

    Dear Mr. Pain:

    I can so understand what you are talking about. I consider myself an intelligent person. I was usually the one that figured out just about any problem, before anyone else. I know find myself trying to think of simple words that I used to use all the time. I wonder what will become of me as my brain continues to shut down.

    Some advice on the doctor's appointments, school stuff. I find that I if I carry a little notebook (small one, maybe 4x6 or so) and write down what it is that I am doing each day, and anything else improtant that I might need to remember that I can refer back to it and get a bit of a hint. The thing is you have to remember to bring this little notebook with you EVERYWHERE.

    Good luck, and hopefully, your fog will clear.

    Ingrid
  4. Kayleen

    Kayleen New Member

    It's scary when you can't think of simple words. I am in sales and went to do a presentation today in front of a group of people. Half the time the simple words just would not come to mind. It's embarrasing. I stumbled through it and got the contract. I've been in this business 20 years. I never used to stumble on my words. Like I said it's scary.
  5. toughone

    toughone New Member

    I'm so sorry you're having a rouh time--I can sympathize--I've been having a much rougher time than usual since May. I always have 6-7 pain but when I'm in a flare, it's 10+. My brain reacts with the pain--the worse it is, the worse my thoughts jumble. My kids have become very good at filling in the missing words I can't speak, and finishing my sentences, too. If my words come out all mixed up, they can usually fix that, too! They've had lots of practice. Sometimes I still get very angry with myself when I don't function properly, but most of the time now, I just apologize to whomever my brainfog is affecting, and go on. I have found that if I work myself up about it, it just makes everything worse.

    My kids have had to grow up with a mom that has never performed at 100%. They are 19 and 17 now, and I'm told by everyone who meets them that they are wonderful young people. And they are--I'm very proud of them and I'm proud of myself. Eventhough we had a lot of tough times, I think my illness had a hand in how they turned out. We all learned and grew from it.

    So, don't worry about getting it all perfect--it still has a way of turning out wonderfully. My kids are my biggest support system, and they have had a lot of laughs along the way.

    Besides, once they're all done with college and out on their own, I plan on falling to pieces. I've earned it and am looking forward to it! On a beach somewhere...

    Take care, mrpain...

    Bonny
  6. Bren2135

    Bren2135 New Member

    You're not alone, I sure can relate to that. It used to drive me crazy, until I realized, hey.. I'm enduring a lot here on a daily basis (pain,pain,pain), and am doing pretty good, for the shape I'm in!!

    (I love the list idea too -- I make lists for my lists!!)

    Not a person who refers to my illness often (except to very close friends n family - and this msg. board, of course!), so on especially foggy days, I might laugh and say, "Ah, it feels like Monday", or "I'm sucha clutz today"... or something like that. People in general CAN relate to being out of sorts occasionally, and usually everyone laughs, the air is comfortable again -- and, I've given myself permission to be human!

    Hugs,
    Brenda

  7. mrpain

    mrpain New Member

    Thanks for the great replies... But it's more than just brainfog. It's the mind also being miserable, if that makes sense... I guess I'm just all out of whack right now.

    My brain doesn't seem to be in order. It's not depression although that may come in spells.... And one problem possibly is that I went back on my wellbutrin for a week and then decided to come off because it made me feel bad.

    So I don't know if it's the wellbutrin, a flare, or just part of this DD disease. And I feel like I'm overheating on the inside.. Just burning up for no reason while sitting in a/c and under a fan while taking cold showers. It just doesn't make sense. This is no way to be.. I know there's no magical answers..
  8. Maribelle

    Maribelle New Member

    I have always been pretty articulate, but ever since this
    DD came along it has really twisted my brain! I can't
    remember ANYTHING!!! It is really embarassing when I call someone to tell them something and forget what I was going to say.

    I own my own business and I have to be "on" all the time.
    I have to make lots of notes and email people immediately
    as I remember something. I also sort of stick to a routine and that helps a lot. Many times I make appts and
    mark it in my calendar and then forget to look at it!

    This DD affects all areas of my life but I try to find
    something that I am grateful for each day....this helps
    so much. Staying positive is half the battle.

    Although when I am in a flare...nothing seems to help!
    Most times I just ride the wave of torture. I do pray
    a lot and try to read good stuff and watch funny or light
    shows or movies on T.V.

    I play lots of Scrabble by myself. It keeps my mind from
    thinking about the pain, anxiety, stress, etc. It also
    must exercise my brain. At least, I hope.

    Stay positive and remember that we are here for you.

    Have a great day!

    Maribelle

  9. hugs4evry1

    hugs4evry1 New Member

    I'm going to try to explain what happened to me last year and see if it's close to what you're feeling.

    During Aug/Sept when everything was going on (my Mom in hospital dying, me too sick to go see her, kitten in hospital, husband gone for a week's trip that turned into 3 wks...etc..) something was obviously going wrong with my brain too.

    I really wanted to go back and see my Mom and thought about just trying to do it one morning, but found myself less than 2 hours later trying to figure out how to climb a flight of stairs without falling. (OK, this is different than the norm, the bathroom was upstairs and I wasn't sure I could get there)

    Then after she died during Sept/Oct I was bedbound again, struggling to feed myself, struggling just to get to the bathroom and back. I had to hand over all chores that someone with some obvious intelligence could usually handle.

    As I lay in bed wondering if I was also dying (and not caring which is a huge red flag for me) I realized that I was depressed (again, highly unusual for me) and it wasn't about my Mom. (Marching band with red flags for this one)

    I went to my doc and really made him listen that something was really wrong with me. (As if CFS/FM isn't enough)

    So he ran bloodwork and I was hypothyroid. Some people really don't understand how devastating this can be, but the thyroid is responsible for every single part of the body and how it works. It can cause all kinds of misery and for me, it did.

    It may too be the Wellbutrin that you took for a week causing the problems. Did you know that in the small print is says that Wellbutrin can CAUSE hallucinations??? Very scary drug...

    Hugs,

    Nancy
  10. painintheeverywhere

    painintheeverywhere New Member

    that I was just a blonde girl for years because I would forget some of the simplest things. My family used to have fun at my expense when they would try to immitate me saying "You know that one guy that has that whatchamagigger and was asking for......"

    I really was not that bad, and used to laugh along with them knowing that most of the time I was somewhat sharp. Now.......it's not as funny as it used to be. I can laugh at some of the silly moments when I forget the simplest things, but their are times that I really get mad at myself. I know it's not necessarily my fault though and get over it quickly.

    We are all desperately wanting our health back...I wish their was a concensous on the meds or holistic therapies that truly work. There are so many products and so many medical providers and so many pharmaceutical companies and everyone wants to sell their product.

    You are not alone...if you can't make it go away, have a little fun with it. I feel a cure is around the corner (hopefully).

    Jane