A wife that has questions

Discussion in 'Fibromyalgia Main Forum' started by missypjc, Oct 5, 2005.

  1. missypjc

    missypjc New Member

    Good Morning everyone,

    I have a question. I'm having a hard time dealing with FM that my hubby has. I'm trying to educate myself and be supportive, but there are times when I get so frustrated.

    My question is this...Does FM play a part in remembering? The reason why I'm asking is because it seems like he forgets things that we have talked about. It frustrates me when I'm talking to him and then when I get off the phone I realize it might be because of FM. Is this true or does my hubby just have a very short term memory?

    I have to get my day started. Thanks in advance....Trish
  2. kalley167

    kalley167 New Member

    I have days when I have "fibro Fog" where I have trouble remembering somethings and feel like I just can't concentrate much. So it is all possible but if you feel it is too much than maybe you should speak to his doctor. Some meds can also do this.
    I am glad you are being proactive and trying to educate yourself. Its great that you will know that this is a true illness and not just the normal aches and pains. Too many people feel that way and we feel so alone at times.
    You will find a wealth of knowledge here on this site. We all know what he is going through in some way.
  3. Rosiebud

    Rosiebud New Member

    yes brain fog, short term memory loss, can play a big part in Fibro and CFS.

    You forget what someone just said, you forget the conversation you're having.

    Words come out wrong, sentences get jumbled up.

    You even forget the words for things like 'football' and you try to explain what it is ' a big round thing that men play with in a park'.

    It can be amusing 'fish the feed' instead of 'feed the fish' but it's not.

    My family and me keep light about it. I can instantly forget when my husband gives me a kiss at night. ha ha.

    Some people get it so bad that they get lost.

    It's not your hubby's fault.

    love
    Rosie

  4. missypjc

    missypjc New Member

    With all of this being so new to me I just so worried about him. I don't want to start an argument if it something that he can't control. Looking back with some of the things that have happened I'm just wondering if it's been his illness all along and we didn't know it. :( There are times I feel so alone that I can't talk to anyone because they don't understand what he's going through. I really need to find a support group of my own I guess ;)

    I'm trying to understand what FM is, but it is really hard to when you don't have it yourself.

    My thoughts and prayers are with everyone.

    Love
    Trish
  5. Rosiebud

    Rosiebud New Member

    you are very welcome to come on this board and talk, you dont have to have fibro yourself.

    I'm really sorry about your husband, it can take awhile to come to terms with this.

    I remember when I first became ill, it took months and months before I realised I was having problems with my memory and speech - I didnt realise it was tied into my illness and thought it was just me being forgetful.

    You will find a lot of information here and a lot of friendly people. You can always use the 'search' on the left hand side to look up things and it will bring up past posts.

    love
    Rosie
  6. jennypee

    jennypee New Member

    I get the fog really bad a lot of the time. It's extremely frustrating and scary and embarassing. I miss being able to communicate an idea effectively without much effort.

    It's great that you care enough to seek out information. You're welcome to hang around and ask any questions you might have. Everyone's disease is different in the details, but fundementally I think .... crap. I can't for the life of me remember what my point was... Not a joke, but a very good example with fabulous timing. I think I meant that we're dealing with different symptoms at different times but it all boils down to a very similar experience that we share.

    I'm pretty interested in hearing about being a spouse of someone with FM.

    ~Jennypee
  7. orachel

    orachel New Member

    ...be more understanding of what your husband is going through! My husband is a good support to me, but I'd sure love it if he'd hop on here and kinda get the real story "from the horses mouth", so to speak.

    As for your question....I'll use my own example. I'm a 30yr old woman, seemingly "healthy" for most of my life, though I did get a lot of garden variety sickness (colds, strep throat, etc), always been somewhat active. Was an english major at UCLA, and have spent last 10 yrs working higher levels in the mortgage industry...Ie: dealing with intricate financial details of many clients simultaneously and coming up with solutions for them. Recently happily married, hubby and I just bought our dream house, etc...

    4 mos ago I basically "woke up" sick. Now that I've learned and studied about fm, I recognize that there were bigtime signals that something was wrong with me for many years, but finally my whole immune system just crashed. In addition to the horrible pain I literally have no escape from (nothing my doctor prescribes will even "touch" the severe level of pain I'm in!) which causes me to be very snappish and grouchy, even though that's not my normal personality and I love my husband/stepkids/former coworkers etc very much...the level of pain I'm in just becomes utterly overwhelming and I end up seeming like I'm being angry...when really I'm just hurting like crazy.

    As for the "forgetting"....Remember what I said above about my education and career? I've always "prided" myself on being somewhat of a smart cookie. I've just always tried to learn and read as much as possible (read an average of 1000 pgs per week...until the fm!). In the last 2 mos or maybe a bit longer, I've been getting progressively more and more forgetful. In my case it almost started out a bit funny (though certainly disturbing!). My husband would call me from work and say he had a business dinner so he wouldn't be home that night till later than usual...this is at 1 in the afternoon. By 7 pm, when he isn't home at his normal arrival time, and I can't reach him on his cell phone, I'm in full on hardcore panic mode. He came strolling thru the door at 10:30 (work is far away!) and I didn't know whether to kiss him or kill him I was so worried!!!

    You see, Trish...I'd flat out completely forgotten that the 1 pm conversation had ever taken place. I am not by nature a forgetful person at all until FM. I can no longer drive more than a minute or two, as I get mixed up and confused about where I am, and have a tendency to drive right on thru red lights...I certainly cannot drive and be a risk to myself or others. I came close to burning down the house a few times by leaving on gas stove burners overnight, or leaving a heating pad on overnight. I had to ask my godmother to pick up her life in pennsylvania and move to ohio with us to "babysit" me because I never know what freaky and potentially scary thing I'll do next.

    I've put a super hot coffee carafe into the fridge. Hubby saw that one and looked at me like I was nuts! I cannot remember names of things I've LOVED and been PASSIONATE about like favorite books, films, authors. I simply cannot think of the simplest words (almost went batty a few weeks ago because I flat out could not think of the word "suspicious"...I was an english major and have commonly been referred to by friends as the "vocabulary queen"...and I can't think of the word suspicious??!!

    I often mix things up...I'll be referring to one friend, call them another friends name...I'll be wanting to say "kitchen" and will come out "bathroom". Yep...I actually asked my husband to bring me something to drink out of the BATHROOM the other day! It's terrible and ridiculous and makes me feel horrible and stupid, but among friends and those who love me little things like that you've just got to laugh about.

    My husband is a nuclear engineer. We used to have detailed conversations about very advanced projects he was working on....I knew as much about the "office dynamics" of the people he was working with as he did just because I really used to love to hear in detail what my husband had to say about his day. I literally cannot even "concentrate and focus" thru the simplest conversation with him.

    I constantly need to watch tv with the closed captions on. My eyes seem to be working ok...so do my ears...but somehow the messages coming out of the TV get confused in my brain. Often I just cannot even follow a plot of the simplest movie or show...I used to be a huge lover or foreign film..the more obscure, the better! LOL

    Finally, The most difficult thing for me has been MAJOR problems with focus and reading and writing. Sometimes, when I attempt to type (I typically type pretty darn fast) things go ok....sometimes, I almost have a type of dyslexic aphasia (you know...similar to stroke patients?)...I am able to think complex thoughts, but FLAT OUT CANNOT make the right letters to make up the right words come out of my pen or out of my fingers on the keyboard.

    This board is my major support system other than my husband who loves me dearly, but who just cannot understand what I'm going thru as its so foreign to him. When I have a difficult or impossible time typing, it totally cuts me off from my lifeline of all the wonderful people here. That makes it even harder to cope.

    Finally...biggest love of my life aside from hubby and step children has always been reading. Typically I read about 1000 pages a week, and that was when I was able to work full time, with a commute, and taking care of the house. Now, If I'm lucky, I can sit down and read or look at the simplest subject matter for 10 minutes to 15 minutes at a time....often having to read and reread it, only to find that its just not "computeing" right then. I used to sit on vacations or rainy weekend afternoons and read for 10 hrs straight! I'm working on a very very simple Dean Koontz book now...probably only 300 pages or so. Would have read it in an hour and a half in my "former life"...I've been trucking with it for about 2 weeks now, and I think I'm at about page 20. The really sad thing is I don't even remember most of what I read when I can muster up the focus I need to actually read.

    Trish...I'm not trying to write you a book here, but I think its wonderful that you're taking your time and energy to look into something that your husband is struggling with. Plus, wanted to give you an idea of how very very severe these neurological disturbances can become very very quickly....4 mos ago I was totally normal, highly intelligent...now I'm lucky if I can follow a cartoon with my stepchildren. Can no longer drive or cook (unaccompanied! lol...that's why my godmother is here to watch over me) because of the safety concerns. Just yesterday, I was trying to "navigate" so my godmother could drive me to a doctors appt, and managed to get us lost for upwards of an hour practically in my own back yard. Streets I used to drive every single day. When we finally did get to the doctor's office...I found out from the receptionist that my appointment is actually TODAY, not yesterday!!! I'd been living all day yesterday convinced it was Thursday. And this is after I checked my calendar multipe times to make sure I wasn't screwing up! lol

    What you're dealing with with your husband sounds like what doctors and research materials into FM commonly refer to as "brain fog" or "fibro fog".....If you spend any time on these boards, do a search for those terms and get an idea of how many here suffer from varying severities of these things....and also, many of us do have diagnosed neurological problems as a result of, or perhaps causing, the FM in the first place. I know I've never experienced anything like this in my life.

    As hard and Excruciatingly painful as my body is daily, worrying about my "brain" going is even worse. So please, do some more research if for nothing else than to make you and your husband know you're not alone in dealing with this, and hey...it could be much worse, right?!

    My situation is never one that I ever dreamed that I'd be in at 30 yrs old, but such is life. When I started writing this email, my brain was working just fine, seemingly. For the last half hour or so, the "brain fog" has set in, and every single word is a struggle to think of, then figure out letter, then type it....very very difficult.

    Go to an appointment to your hubbys fibro doc with him and get the scoop from the doc (I hope your hubby has a good doc...some of mine have left MUCH to be desired). I'm currently supposed to undergo Neuropsychological testing (paper testing designed to "measure" my brain fog and cognition problems), and go see a neurologist (many of us do actually need to be treated for separate neurological problems...I'm praying I'm not one of them, but who knows).
    Your husband may want to speak to his doc about some of these consults if he and you think its possibly something to worry about.

    But yep...Haven't met a single person on these boards who suffers from FM/CFS who doesn't have some level of "fog"...and it changes from day to day, minute to minute in severity for most of us.

    Please, as hard as it is for you to deal with your husbands "forgetfulness", imagine what he's going thru?! I had more angst and concern about possibly losing my brain power than I did when I was told I had a chronic pain condition that noone could figure out and would most likely hurt for the rest of my life. It is very very scary to be going thru something like this!

    Hop on here with him and do a search for "fog" or "neuro" and see what you come up with...at least you'll know you're not alone.

    Blessings to you both.
    Rachel

  8. rileyearl

    rileyearl New Member

    Good for you to learn as much as you can about this strange ailment!

    Until this year, my brain worked pretty well. I didn't need to make notes to remember about a zillion details. I could remember the names of people and objects. Now I'm always asking my husband the same question over and over because I've forgotten. Sometimes I call it fibromyalgia retardation.

    My being a flake is kind of funny at our house because he has ADD and has been forgetful and kind of drifty as long as I've known him. He also has a real competitive streak and loves to be right. Now he gets to be right sometimes! I think he likes it, except he has to do all the work around here, too, since I'm either too tired or in too much pain most of the time. Our 4 yo son is sharper than both of us. Lots of days the dog is, too.

    There is a story called "Spoons" on another thread here. It is a great way to understand what the day of someone with a chronic pain disease is like. You can find it with the search field above.

    Wishing you the best!

    Francie
  9. elsa

    elsa New Member

    Thank you for coming here and trying to understand your husband's illness a little better. I feel safe in speaking for him that many of us get very little understanding from the medical community on down.

    Your husband has what is referred to as "fibro fog". It is insidious and humiliating. The term encompasses short term memory, word recognition and recall, spelling, simple directions.

    When he forgots something he feels stupid and not in control. It is scary and it hurts to repeatedly let down the ones you care about the most.

    Next time you feel yourself becoming frustrated try to place yourself in his shoes. An intelligent adult male has to look you in the eye and admit he forgot for the tenth time to pick up your laundry from the cleaners.

    It's something a five year old can recall, yet the "protector" ( not my term, but society's term ), can't get it together enough to remember something a child can handle. Then he has to see the recrimination / frustration in his wife's eyes. It's a tough "pill" to swallow.

    I think there are many more men suffering from fibro then have been diagnosed. We women are at least allowed to be vocal about how we are feeling and will bring "ambiguous" symptoms to a doctor's attention. We're also allowed to cry openly.

    There is a prejudice against men feeling these things and having a doctor listen to them. Someone posted here how their husband's doctor ridiculed him for bringing up the possibility of fibromyalgia to explain his symptoms. The doctor said "No way ... that's a woman's complaint". I don't suppose he felt very manly after that.

    My husband struggled with this as you are doing. It took him alittle while, but he came to understand that I simply cannot help it at the moment. It is part of my illness.

    Looking at my horrified expression while apologizing again for forgetting got the message to him.

    The experts are not certain what causes fibro fog. Fibro has a neurological basis, so that may have a hand in it. Also, fibro distroys the sleep stages that are needed to function properly, i.e. ... memory, pain, exhaustion, etc.
    Some medications that are rx'ed for fibro may be contributing to it as well.

    There are coping tips ... write everything down. Make to-do lists. Most of all ... keep a colossal sense of humor. This is not the end of the world ... laughing at it is the best way to diffuse the humiliation and anger that goes along with fibro fog.

    I want to thank you again for coming here and trying to better understand your husband's illness. Please come back anytime you'd like to. Not just for questions, but for support as well. There are other spouses/sig others who are members here. Bring your husband if he doesn't already belong or have a group of his own.

    Take care,

    Elsa

  10. JLH

    JLH New Member

    Your hubby sounds like me! My FM definitely plays a part in my short-term memory!

    I'm only 54, but feel like my brain is 94!!!

    I can't remember anything anymore. I walk out of my kitchen to go to the utility room to get something and by the time I get there, I have forgotten what I went there for!!

    My daughter tells me things on the phone, and then my hubby asks me what she was telling me after I get off the phone, and I can't remember.

    It's tough having this memory problem. Others keep forgetting that it's a problem with this fibro!

    Hugs,
    Janet
  11. ldbgcoleman

    ldbgcoleman New Member

    The brain fog has been one of the worst aspects because it hurts your pride. It helps me if I focus on one thing at a time. Please continue to be patient with your husband. trust me it hurts is ego to have this problem. It is very difficult and VERY scary to know you have the answer but not be able to get it out of your mouth or find it.

    It must be hard for you to see someone you love struggle with these issues! We definaterly understand here! Take Care Lynn
  12. sallyj

    sallyj New Member

    Yes its very common, lots of people i have spoken to that have FM or CFS, i have CFS and get it all the time I discribe it as my head feels like mashed pototoes and when i am told things i forget as soon as its said, My husband has a hard time with this like yourself, and it causes many arguements as i say he didn't tell me and he says i did and so on!!!! If its really important stuff that i should know he leaves written notes all over the place so i see them all of the time, it does help.

    Sally.
  13. Sheila1366

    Sheila1366 New Member

    Absolutely it can cause memory problems.If he wasn't like this before I would write it off as brainfog.I now write alot of notes as soon as I have something impoetant to do or remember.But my husband thinks I am forgetful all the time but if varies which is so frustrating.I hate to thought of as absent minded.Everyone needs their dignity.I think it is great you are looking for answers.I know I wish my husband would read more about it.

    Take care,
    Sheila


    PS. I am a cargiver too of a handicapped daughter.It can very frustrating at times I know and that is ok.It is hard for you too.Patience is hard when you are dealing with something that has made a life change in your husband.Hang in there and don't be too hard on yourself for being angry or frustrated.I am sure he is too.
  14. dan0248

    dan0248 New Member

    It’s easy to see it from our side; things just didn’t happen that way or another. I came dang near killing myself two times in a 10-day period to finally get my attention. The first time I got into an 1100-volt circuit and just barley got off. The second time I started a high voltage fire while working on a 12470 volt three phase circuit, which I know will not mean much to most of you I mention the total voltage only to make a point. It was one thing to be working by myself and get into an 1100 volts because it was only going to be me that died, but on the second one I had and Apprentice working with me that could have died. It was all about memory. I’ve my crews, family and friends all point out that there was a problem, which they either told me something or I told them something. Just as the others have said trying to make a point in a conversation where you couldn’t remember a name or a thing. This is a good board, there are some very good people on it that have seen and heard a lot, they can help you get up to speed. Start getting your husband to write down things that he does during the day as he does them or things that you want him to do. This helps a lot because he can see and you can see what he has done or what he needs to do. Drug help and drugs hurt, it is dependent upon the individual, you’ll have to work through these bumps as they come along. Good luck.