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paranoid over losing words
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ljeanaz posted:
I had symptoms of fm starting at age 19 and was beyond age 30 when doctor first diagnosed it. At that time I said that I didn't want to have a "made up" disease ;^)

Fortunately using diagnostic procedures she convinced me nobody would think it was all in my head. Still I never told anyone for 15 years. I could deal with the pain. I could deal with nearly being late to work because I was so tired I wanted to cry. I could even deal with losing things 20 times a day and appearing totally disorganized.

But when I started losing words a couple of years ago my friends and coworkers were finally informed.

Maybe it is because my mom has Alzheimer's? I am totally paranoid about the whole gray matter loss associated with fm and I feel often embarrassed when words elude me.

Thank goodness for the time and revision opportunities of texts and email (btw it probably took 25-30 min to compose this)
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13Lynn responded:
Bless you heart! I am right there with you! When I was dx that was one of my main worries. Just simply losing words! The first thing my dr did was reassure me that it was Fibro fog - not Dementia or Alzheimer. I didn't know anything about Fibro fog. Since I have been on my meds - it's only been 3 months but some of the fog is better but I'm not back yet. When I first started reading the groups messages I saw a lot of people miss spelling words or sentences that didn't really work. It made me realize that I have no idea how many times I have sent out emails or communications that may have been "foggy."

Prayers and soft hugs for you!
Take care.
Lynn
 
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Fibrosarah responded:
I did not realize there is gray matter loss with FM, wouldn't this be found in an MRI or a CT scan? Which leads me to say there is not any known testing that can lead to a diagnosis of Fibromyalgia,

If a history of losing words is that predominate, and your mom has Alzheimer's, I think there is some testing that can be done to see if you might be in stages of Alzhiemer's. A friend of mine was tested, and started on a medication to help slow it down, hopefully it works. She seems to think it is.
 
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ljeanaz replied to Fibrosarah's response:
Not to worry, several medical professionals have assured me these are totally unrelated and there is truly no known link between fibro and alzheimers
 
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Kinkatia responded:
According to an article I read (and then lost somewhere in the internet - I really must make notes of these things) it's not so much gray matter loss as shrinkage. Kinda like a sponge gets smaller when it dries out? It's all still there, just. . . smaller. I don't really know what that means, but it's reassuring to know that I'm not actually losing any gray matter.

And I lose words all the time. It's frustrating because words have always been my thing. I used to be a walking dictionary, and now I have trouble putting together sentences. But it's just the fog, and I've noticed I lose fewer words when I'm less foggy.
 
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kadiki responded:
OMG. I can't believe I'm reading this. I thought I was losing my mind. I too struggle with words. I hate to have a conversation with someone other than my family. The words are just not there sometimes and I try to think of the right word to say and sometimes something stupid comes out. The more I read about other's synptoms it makes me feel a little better. To everyone who thinks it's a 'head thing', theres just too many similarities in everyone's symptoms. Thanks guys for continuing to post. Not that I'm glad everyone has fibro but I find real comfort in this community. Thanks again.
One day at a time. Diane King
 
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pcfulone responded:
Until I got fibro a couple years ago, friends would tell me how remarkable my memory was. I could remember names of people we went to school with in 2nd and 3rd grade, things that we did as kids and all sort of things. Now I picture things in my head but can't think of the word that goes with it, forget what I was just thinking of doing, even on the way to do it and unfortunately no longer have that gift of a remarkable memory. The word loss thing is very frustrating. I don't mind it so much around those I'm close with because I just tell them that I'm having a fibro word loss moment but it surely is hard around a group that doesn't know about my fibro or understand what it does. I have asked my husband to help me if he sees me struggling. He's pretty good at it but honestly, I don't socialize much anymore. I've gained too much weight to feel anywhere near conifident to be out in public too much and usually, I just plain don't feel like it.
 
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fontanille responded:
I can totally relate to you on this. My mother also has Alzheimer's and seeing her get confused and forgetting, I worry if this is what's wrong with me. This is why I don't reply much on here or start a discussion, because it takes me a good long while to write and get it correct what I want to say. I dialize my dad and have been for over a year, now I have to go by the book to make sure I don't mess up and go slowly.

Hope everyone has great day.

Donna
 
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mymyrt replied to fontanille's response:
To Donna, and anyone else who loses words: I am also a word person, and have the memory of an elephant. I have found myself losing words, having difficulty speaking, and being absolutely terrified, as my mother is in an Alzheimer's facility (since May a year ago). Alzheimer's is the cruelest disease I have ever witnessed, and with my composition skills, and my love of writing, I have to believe the word problem is fibro rather than AD. As for losing gray matter, I would like to see Dr P comment on this. Caring for my mother almost killed me, and thinking that AD may be in my future is terrifying. My brain is about the only organ that still works fairly dependably.

Hope everyone has a great weekend.

Joan
Knowledge is power.
 
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Moxie1956 replied to Kinkatia's response:
Wow! A great big DITTO! I've never heard anyone else described as a "walking dictionary," but that's exactly what friends have referred to me as being. Not anymore, though! I love words, but now they elude me, and at the most critical of times!

When I first realized I was losing words, train of thought; was so extremely easily distracted; unable to read the simplest sentences without having to re-read several times before sinking in with comprehension; was having to ask people to repeat themselves because I "just didn't get it;" and more along this line, I requested testing from my psychiatrist. She graciously complied and the results showed no signs of early dementia---a huge relief. On the other hand, I have been told the cognitive impairment is probably now permanent due to the medications I have been on for the past 3 and a half years! I've been wanting to wean and be on a regiment of supplements only, but she believes even if I were to succeed in the weaning, I'd still have the cognitive impairments.

This is tremendously frustrating because I highly value competence and now I lack the very thing I based my self-esteem on for years. Moreover, I am unable to be employed because I can't remember oral instructions, get too distracted to follow through in a reasonable order and time frame (even if instructions are written), and I can no longer articulate in meetings or presentations or trainings. arrrggghhh!

I am now taking methylphenidate hcl 10mg, which is generic Ritalyn, just so I can have about 4 hours daily to feel alert and somewhat energetic. I may feel alert but I still do not think clearly enough to be satisfactorily productive in employment.

In order to fill this expansive void in my life, I volunteered to organize a church community library, based in my own church. I'm excited about its prospects; I love everything about books; and I'm meticulously organized (although it requires hours of my time to be so!).

My pastor has been incredibly patient and reminds me no one else has stepped forward to do the job! lol But, I've been at it for 11 months and I've only carded about 300 books, meaning I've only put in an estimated 30 hours---IN ELEVEN MONTHS! There have been weeks, going into months, when I am unable to show up. When I do, I am unable to work longer than 2 hours, and that's with having to get up from my seat 3 to 4 times, to move about, working out the kinks;) It's a good thing they are not paying me, that's all I can say!

I've always said I'd love to live to be 100 years old, so long as I retain my mental faculties. Well, that is no longer such a strong desire. Normal fuzziness that does come from aging is one thing, but this damn fibro fog---denseness---is maddening.

Since this has happened, my social skills and life have atrophied. I do not even attend church services! I cannot sit that long; I cannot carry on a conversation, all but for a few niceties---how dull is that!

Realizing and trying to come to terms with this weakness, I do try to go to the warm water pool at our YMCA and there try to meet people and share small talk. At least that's something instead of just the 4 walls of my home. I even began online courses but found out really fast I can only handle 3 classes, not the 5 I started out with. So this 2 year degree will most likely be earned in 4 or 5 years! Just about in time for retirement-ha!

Well, this discussion certainly hit a nerve with me! Thank goodness that here there is genuine and immediate understanding of each others difficulties; that is some consolation.

a soft breeze, low humidity, and gentle hugs to all,
Cheerio


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