Memory Loss and Other … What’s the Word? … Difficulties!

Memory Loss and Other … What’s the Word? … Difficulties!


I am sure a majority of you with fibromyalgia have experienced, at one time or another, speaking on a subject only to forget an important … um, what do you call it .. um, um (snapping fingers)? Oh, the frustrations of having fibro-fog, the affectionate term for such cognitive issues as word-finding difficulty, memory loss, and overall comprehension.

I try to laugh it off, calling it my “Duh!” moments, but deep down, it can be very disconcerting. Certain issues create a stronger visceral reaction than others. For me, some of the response is pride as much as wanting to remain consistent in my functioning.

In high school, I was an above-average student in English, with accolades to literature as opposed to grammar. That said, I feel that the river of vocabulary words is not very deep, so when one word cannot be retrieved, few synonyms are readily available. I also have been one to express myself more effectively through writing, so if I am struggling to find words when writing, can you imagine the amount of slang and basic terminology that comes out of my mouth when speaking?

I can’t recall when the word-finding first began. However, I do know when it magnified to the point of being disturbing. I was at a deli ordering sandwiches and I forgot “tuna fish.” I literally had to point at the item through the glass-enclosed counter. At that moment, I wondered if this was what people with early stage dementia experienced. It is a harsh reality, and a scary one at that, but at least we are fortunate that the symptom doesn’t last.

Another fibro-fog symptom is when logic or comprehension is blurred. When this happens to me, I feel like a placard with the phrase “Does Not Compute” might as well be placed on my forehead. Not only is it embarrassing, I worry that others will think I am not very bright. I think this is the hardest one for me to face.

Pre-fibromyalgia, and before the illness had progressed to the severe stage, I was a hard worker, a fast learner, and enjoyed a challenge. I was pleasantly surprised when professors and mentors called me smart. To lose that edge, I feel helpless and admittedly inept, as if all the years of acquired knowledge have been sucked out of me, like putting a vacuum in reverse.

Least I not forget, being forgetful. My memory was something that made me proud. I could recite portions of a conversation verbatim. At work, when conducting psychiatric interviews, aside from taking thorough notes, I could remember most from memory when writing up a report or discussing in a meeting. To lose that skill is hard to tolerate sometimes. Post-It notes always have been my best friend when it came to making lists. Now, it is a reminder for most things. Making it known to myself only aggravates the problem, especially word-finding difficulties.

As I mentioned, these deficits occur out of the blue and can disappear just the same. I have not found a pattern, and an onset of a flare does not guarantee its occurrence. When it does happen, I try to take a deep breath, and if needed, tell others who know that I have fibromyalgia that I am having a lapse in memory, or understanding, or trouble finding the exact words. If it is someone who does not know my health status, I just laugh off the event with a joke or ask the person to “refresh my memory,” or state something to the effect of “can’t think of the word.” In other words, I make comments that many use in everyday situations, without tipping them off to my cognitive issues.

I try to read every day, whether it be the news, research articles, or inserts in the mail. I also play crossword puzzles and “Bookworm” (an online word search game). Not only do I enjoy such activities, but I like to think I am taking a step toward keeping my brain active and strong.

Mainly I try to remember that my current self is still intelligent and contributing, regardless of any limitation.

***

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

37 comments

  1. Sue says:

    I am so glad you wrote this! I now know, I am not the only one!! I thought I was loosinv my mind, at a young age. My kids yell at me for not remembering schedules or dates, that used to be no problem. I probably have more sticky notes and lists than you! I have a dry erase board the keep my schedule and change it weekly. I love to read, but find it hard to concentrate on most days.

    • Lori Galpeer says:

      No you are not going crazy! It is something you would not want to share with others so readily esp. the word finding difficulty. (There are only certain people I feel comfortable being around when this occurs). We will have to share pics or provide total # of post-it notes 🙂 Must be a bit melancholy feeling when your kids are reminding you (indirectly) of changes in your memory. While I rely on post-its, i like to try to memorize lists, etc (with the post-it there for security) as a way of testing my memory (like a game in someways). Of course only when I am not pressed for time and not frustrated. I like to think various tools help without being a hinderance. Don’t you wish we had created, or bought stock, in post-its? 🙂

  2. Karen says:

    You are describing me. I am now mostly retired. When I do work it is in a memory care unit @ a local nursing home. I enjoy the work. I “fit in”.

    It is very frustrating to lose words that use to be so familiar to me. I take several supplements but don’t always remember to take them. I wonder if my meds are making the problem worse.??? I also have some hearing loss. It is a daily struggle.
    Thanks for sharing.

    • Lori Galpeer says:

      My first clinical job was at nursing home for persons suffering from Alzheimer’s and other dementias due to stroke and Parkinson’s Disease. I think I would feel ‘part of the group’ in someways too. If you are concerned that poss. your meds may have some affect on your memory, I would discuss it with your doctor. I rely on daily pill organizer there are many different types (day – AM/PM; weekly) and can help act as reminder. I also try to take my medicine same time everyday (right after my puppy wakes me to start the day), and also if not quite certain for some reason, I have definite proof. To my knowledge of the standard treatment meds for FMS, opioids can cause some short-term memory loss but meds like antidepressant (Cymbalta or Effexor) does not, nor do certain muscle relaxants (Neurontin would not whereas Flexeril would). Having some hearing problems must also cause some frustrations when listening/communicating with others. Hope you can get that looked at in the future. Am curious: Does your hearing fluctuate? Some days it is easier to hear clearly and other times people seem like mumble more or have to ask to repeat themselves? Just curious for have read, as well as heard from some in addition to experience myself – that (just as with eyes and other muscles in body) that hearing can fluctuate – suppose ear drum is a type of muscle too? Thanks for sharing! Take care! 🙂

    • Jennifer says:

      I’ve never claimed to be the sharpest knife in the drawer, but years ago my Dr. tried me on Adderall. I was a school bus driver at the time and my health and fatigue was starting to scare me. I was getting confused alot too. I realized I had these precious children’s lives in my hands. He diagnosed me with ADD (Which I could have) or either I have had the fibromyalgia for most of my life? Who knows at this point. The Adderall has and does still help for a few hours a day. There are just more bad days than good lately. But with this debilitating syndrome, I would suggest anything if I thought it would help…

  3. Julie says:

    Oh, Lori, this is an area that I do miss and often lament about myself. I do write better than I talk. It’s frustrating to be sure and all days are not as bad as some. At my worse, I cannot string coherent thoughts together and play a lot of jeopardy with others to communicate! Like you, I was well above the average in writing, reading, spelling, so forth. I home schooled four daughters all the way through. I hate that my once passionate and delight in the complicated English language can often be a thorn in my side! It is as if I have developed a learning difference. I find it quite humbling but I do sprinkle laughter and retain my joy. I’m doing the very best that I can.

    • Lori Galpeer says:

      Thank you for sharing, Julie! I like your namepost (songbirdpoet):) That says you are an artist in the usage/expression of word. You can definitely be proud of yourself; homeschooling 4 children is very impressive! I am glad that you are able to use humor, it can definitely buffer some of the tough emotions sometimes. You are so right about this being a humbling experience; when you lose that ‘edge’ others may not notice, but knowing it yourself is enough to feel an awkward, personal suffering that is hard to ignore/distract like certain types of pain, for example.

  4. Susan Parker says:

    Lori… I find my memory loss to be the most frustrating part of my Fibromyalgia. Plus I was on opioids for almost 20 years for Osteoarthritis and originally also given for my Fibro pain.
    So between the Fibro Fog and any damages done by the opioids, I’m really trying to do anything I can to regenerate my brain to make it function at a higher pace again.
    Due to a back injury, I’m blessed to have been the recipient of a neuromodulation unit called a pain implant that blocks all of my Fibromyalgia, severe Neuropathy leg & feet pain. I’m very active now and have just gotten the okay from my doctor to return to work part time. I haven’t worked for 20 years, but I’m hoping that with working even PT that my Fibro Fog will dissipate even further.

    • Lori Galpeer says:

      I can understand your concern with memory loss and the concern with long-term meds affecting it. That is so exciting about the neuro-unit! I have always thought if researchers could create a medication or, in the case, a unit that blocks the pain messaging to and from central nervous system it would solve many chronic pain conditions (i.e. as a alternative to opioids and other pain meds that ‘mask’ the pain). I would love to know more – I realize it was given to you because of a back injury but would still like to know details if you don’t mind sharing (can write here or my e-mail). That is so exciting about being able to go back to work – – you must feel like this day would never arrive, huh? A surreal feeling of joy. I would imagine being able to get back into the ‘drivers seat’ certain tasks, as well as new information will recharge those synapses. I have been on Ultram (a derviative of an opioid) for 20 years and wasn’t until 7 years ago when I had to go on disabiity (i.e. my last job I even learned a new computer program and I am not IT savy). You might find yourself perseverating or relying on reminders (i.e. post-it notes; pneumonic devices) at first, but you will do just fine! Congrats!!!

  5. Lisa says:

    This article was very helpful and me in a nutshell. I’ve always had an awesome memory and could recall conversations weeks or months after they happened. Now I’m lucky if I can finish a sentence or remember what I was going to say. I also read daily, play bookworm and online scrabble to help my memory and vocabulary. The pain and many problems associated with fibro I have learned to deal with daily but the fibro fog bothers me the most. I hope one day some treatment comes along that will help.

    • Lori Galpeer says:

      I hope a better treatment will come along soon too; one that can bring back many previous functions – my memory is definitely one aspect too. I like to think various games, lists, will keep certain areas of the cognitive functioning active to counteract memory issues; definitely can hurt, right? 🙂 We could then discuss this particular conversation verbatim. 🙂

  6. I am so glad to see this article. I am 78 years old w/fibro and have just been diagnosed with beginning stages of Alzheimer. Is it a coincidence? I have had fibro for approx. 40 years and now this. It’s all pretty scary for me. I was given a prescription to try to slow down the symptoms, but I declined it because the side effects of the drug were worse. Where do I go from here? Just let it run it’s course? I am scared… Barbara

    • Lori Galpeer says:

      Barbara I am so sorry! It must be scary! Did a neurologist do a full assessment (ex. ask to recall list of 5 words given few minutes earlier; other memory related questions; draw a clock) and rule out things such as FMS, medication-related symptoms? Had you, or others, noted you forgetting things most common to you (ex. names of loved ones; street you live on). The ads I have seen for Alzheimer’s meds, the side effects do seem a bit much. I hope that it isn’t the case of having Alzheimer’s. It is definitely a lot of decisions to make in terms of where to go from here – hope you have loved ones/close friends who can support you through this. Pls. keep in touch!!!

      • Yes, I had the memory test and an MRI that shows brain (shadows?) and an appt. w/neurology. Now the hardest part of all this is not only coping with the diagnosis, but where does it go from here, And there is the time when I become more dependent on my family. I have lived alone for the past 35+ years and have been very independent. I think this is the hardest part of all this.

        • Lori Galpeer says:

          So the MRI showed white matter abnormalities? Since you are seeing an neurologist, I am assuming this was done by your primary care physician? There is still a chance that the readings may not necessarily mean ALzheimer’s; that is something that the neurologist will be able to provide the information and second opinion. This must be extremely hard to handle not just the shock of the diagnosis but as you said what it means: having to rely on family. Must make you feel pretty vulnerable, huh? Hope you have a very loving, supportive family that you can talk to about this (and they in turn can share their feelings, fears, thoughts) – it is a long process that doesn’t happen overnight and still gives you time to collect your thoughts, wishes and take things gradually – my heart goes out to you! BIG HUG!!!

  7. Kathy says:

    I also feel like a dull thud moat of the time. I was a nurse and now I can’t find words. It is awful! I love words, crosswords, jumbles and anything to do with language. I am now on disability due to fibro. Amd yes, ladies, I know what it must feel like to be feeling like early Alzheimer’s or dementia! I could not tell my daughter to get the extension cord. All I could think was electic hose.Fortunately, she knew what I waa talking about. That was the day a uear ago that I flushed the Nerontin down the toilet! Since then the synapses in my brain have gotten a chance to rejuvenate. I still have the peripheral neuropathies, but, I can live with that! I CANNOT live with no words. Here’s hoping someone comes up with a cure for this ruthless disease. Gentle hugs and warm wishes to all!

    • Lori Galpeer says:

      Interesting that Neurontin was main cause of your fibro-fog. I rely on this med when have bad flairs and burning pain episodes. I know have some difficulty at times w/ memory when med kicks-in; other times (depending on type of pain, etc.) it wakes me up by eliminating certain type of pain and related exhaustion so am able to think more clearly . . is odd. It is definitely rough when have problems finding basic words and feel for me no better way to describe as ‘duh moment’. Makes me want to hibernate from others when occurs.

      • Lynda says:

        My Daddy has dementia. I used to have a genius IQ. But now me and Daddy are so alike. He was a highly intelligent school teacher, tho. I’ve had several concussions. Could that be it? You should see me when I’ve had too much coffee! I’m 7squared and a Granny. ❤️ Old enough not to care what others think of me anymore. But I’m scared.

        • Lori Galpeer says:

          Wow – genius IQ! You must be highly aware of any differentiation in memory and related difficulties. Sorry that your dad has dementia; know it is painful to see loved one change due to illness. I am sure that he provided many students with a wealth of knowledge to take with them. What did he teach? Hope that he enjoyed doing so. I know that if you have a immediate family member with dementia it puts you at higher risk, than if you didn’t have one. Must be disconcerting to see yourself with similar traits and wonder about your future eve nthough the origins are different. Concussions can also be a risk factor, of course, I am not a doctor and don’t know the extent of the concussions you sustained. This is something a neurologist could discuss with you further (probably the neurologist your father sees would be an opportunity to bring up your concerns) to see if you should be tested, or be aware if start experiencing certain symptoms. Congrats on being a grandma 🙂 it is a shame that we don’t start disregarding the unimportant matters (like concerns what others think) until we are older. Who ws it that said, “Youth is wasted on the young”?. I would definitely discuss your concerns with neurologist. Just like FMS and so many other conditions, joining a support group for those who have family members with dementia might be of benefit for many have bound to be feeling fears that you are (and btw, both of my grandmothers had dementia, one due to stroke (t.i.a.’s), the other I believe was Alzheimers, and I worry about my parents as well) – I try not to think about fibro-fog’s effects until it occurs and recognize that it is only a temporary measure (i.e. my way of pushing aside worrying – – not saying it is healthy just sharing that I have certain amount of fear too). I also like to think that research on Alzheimer’s Disease will come to a point where better treatments will arise so that we won’t have to fear it occuring. Best solution at this point is stay aware of your health, changes in symptoms, read up on research and prepare for your future while talking/sharing with others as emotional support!! Most importantly, enjoy being a grandma! 🙂

  8. Cheri says:

    I’m with the others who find the cognitive losses to be the most frustrating part of fibromyalgia. As an attorney, I make my living with words. When I can’t recall one, it throws me every time. I used to be able to cite legal precedent and facts of cases – now I have to re-read things every time I need to refer to them. Ugh!

    • Lori Galpeer says:

      Can definitely see how your profession demands you recite many things from memory and how frustrating it must be when this does not happen. Wish I knew of way you could have information at your fingertips should an incident occur, like when you are gathering your thoughts before a trial (assuming you are trial lawyer) or meeting that certain legal citaions come to mind that are able to have portion of case or file copied from source to have readily available if needed? Hope that this isn’t a regular occurence so that you are still appreciating the work you do and the not limitations from FMS.

  9. Barbara says:

    *raises hand* another for the “am scared of losing my words” group! I love words, I write stories, I am used to being able to think fast and remember what I need to do. Except that for the last twelve years I was losing it all… at first I just put it down to the strain of raising two babies, but then they were at school and it was getting worse!

    Before I got the fibro diagnosis, I did go to a neurologist for a consult, and although the decision was that I was fine, I knew I wasn’t – I know my words, I shouldn’t struggle to find five that begin with F!

    Reading articles like this are a shining light for me. It’s the fibro and I can manage. I’m on medication now that mostly keeps it all in check and although I still need my lists to remember tasks, at least I have my words back 🙂

    • Lori Galpeer says:

      It is definitely great to realize you are not alone; the main reason I write these articles (that I feel extremely fortunate to be able to do and thankful words still come to me from time to time) is to share the symptoms and exepriences that are not readily found in books/internet searches or discussed from your rheumatologist/pain management specialist. The more I can help others so that they don’t go through some of the issues/symptoms in the manner I did, then better. So you are an writer? How exciting! What types of stories? What age group? I am naive in that I carry the romantic notion of being a writer; have always felt there is one good novel in me, just a matter of time before it shows itself. 🙂 I hope that your fibro fog doesn’t inhibit you from doing what you love! I know it is awful having FMS but hope that you feel some relief in having a ‘name’ to the symptoms you had. For me it was scary to have something feel wrong inside me and not knowing what it was.

  10. Judy Kreuter says:

    Egads, I agree with all of you. It’s so nice to hear I’m not alone/crazy!
    It frustrates me when I research FM on-line and few articles even list “fibro fog” which for me is the most difficult symptom to deal with.

    I can explain pain or tiredness to friends. They don’t understand why it can sometime take me all day to pay two bills on line. I know there are easy steps to get it done but I can’t remember what they are.
    Or I can be playing cards and have no idea what I’m doing. I’ve been a math geek all my life and it was difficult to hand over my scorekeeper role. Just can’t add automatically anymore.

    I also see many errors when I proofread my writing (such as this one). Misspellings, missing words, wrong words.
    I just keep telling myself it is what it is. And it will eventually pass.
    Patience is definitely a virtue in our case!

    • Barbara says:

      So true! The fog is the worst symptom for me as well. The pain for me isn’t too bad (nothing like what I’ve heard other people suffer with), but when I’m standing in the kitchen unable to decide whether I want a cup of tea or not, that’s game over for the day.

      And on those days I can’t read, can’t watch TV, can’t listen to the radio, can’t do anything other than lie in bed drifting – which sounds lovely but isn’t when it’s not by choice!.

      • Lori Galpeer says:

        I can relate to the ‘drifting’ concept. As a matter of fact I had it the other day. The weather spiked in temperature the day before with noticeably increase in humidity, only to change to cooler temps. My body just plummeted – I couldn’t sleep that night and just tossed and turned trying to find a position that feel somewhat tolerable. I felt a little better in the early morning only for symptoms to come on hard and strong again later in the day. I couldn’t rest and joined my husband, and puppy, while they were making dinner. I didn’t want to eat, I didn’t want to talk much and tried to engage myself in the Samee’s playing w/ us. At the same time, I felt like I was in another world, just watching/staring and thinking how curling up in a ball might feel better. When the intensity of pain comes on, everything else shuts down – so being engaged in activities around me (to be distract me or to help me feel better mentally) just fall to the wasteside too.

    • Lori Galpeer says:

      Patience is definitley a virtue, as well as an ability to keep your wits about you so as to avoid getting distressed/upset, only worsening the symptoms. I find quite a few errors when proofreading my writing too (but I can’t give claim to fibro-fog LOL). It is frustrating as well as very humbling to experience these difficulties esp. in front of others (referring to the scorekeeper role, sorry you had to relinquish role; hope that your card playing friends were supportive). I, too, wish that the level of problems we encounter could be explained in a manner that others would understand or even experienced themselves. It is a welcoming feeling to know that all of us w/ FMS know all too well what fibro-fog is when few books, articles are readily available to us when doing searches.

  11. Janice says:

    THANK YOU!!! I struggle severely with F/Fog and worry that if your brain is subjected to fog on a continual basis, is it increasing your odds of dementia?
    My house is such a chaotic mess because I have to leave everything out, otherwise, I can’t remember where I put things. I used to be a project manager dealing with multiple, multiple tasks – now I get flustered when I have two things to do!
    I live alone and am isolated 90% of the time (too tired to socialize); only get out for part of one, maybe two days a week, if good days. I haven’t been able to read a book in over 3 years. Some days it worries me tremendously. But, it sure makes the good days joyous.
    My standard line is: ‘I have problems carrying on a conversation with myself, let alone another person!’

    Thanks again for this article. If you know anything about pre-dementia, I’d appreciate hearing your comments. Also, I have Crohn’s and use Librax (tranquiller for the gut) when I have a severe flare-up. I periodically use it at night – surprisingly, it works well for FM (as does 3-4 Arnica at night if sore/not taken together). I’ve also discovered the more hydrated I am (reverse osmosis water, not spring water as it doesn’t re or hydrate) the clearer my thinking.
    Thanks again.

    • Lori Galpeer says:

      We could be twins in many ways! I was used to doing many things at once and like mentioned, if don’t have post-it note or repeat thought in head (til I get to write it down) it will be forgotten. I find socializing/talking on the phone exhausting too – went to a neighbor’s get together couple of years back, and after 3 hours, I was exhausted! I asked my husband “Do other people get tired from parties?”. I have had some friends who were miffed at me, thinking I was lying about typing being less exhausting then talking on the phone – hard to explain if you don’t have it I suppose. Hurts that loved ones can’t automatically believe you when you have never lied before and don’t want to discourage friendship. I have heard about certain Crohn’s meds helping those with FMS too (have FB gf w/ same condition will ask her if she takes this med and if helps w/ FMS sx); is anything like meds for IBS that are anticholinergics (help relax the muscles/nerves in the gut)? At any rate, glad that get some relief from both even for just a little while – – I feel bad for you and others who have Crohn’s; I just can’t imagine the amount of pain and fever, etc. from inflammation not to mention the diarrhea and changes to appetite. I hope you don’t get many flairs!! Does your FMS flairs aggravate or bring on a Crohn’s flair? I have not read up on pre-dementia in a long time and have wondered about grey matter that has been found in persons with FMS. Part of me forgets (LOL), other half think wants to focus on something I can control and that a future med will irridicate the possbibility. I know that if you do a search on pubmed.gov you will be able to find any research done in this area. Is also interesting and important reminder to stay hydrated! There was a recent note (Ch. 4 News – live in D.C. metro area) about mood swings even if dehydrated – – wouldn’t think that not enough fluid intake would do effect health in this manner. Thanks for sharing and for the comemnts!

  12. Vee says:

    Good article. I have memory loss,I’ve been taking neurontin for awhile and have decided to lower my dosage to see if it stop some of the brain fog… Also have major trouble with words, can’t remember names of objects and I’m looking right at them. Very frustrating. I like to work puzzles though it takes me awhile

    • Lori Galpeer says:

      Can understand thoroughly! It is frustrating . . I find myself staring at object, then pointing at it while snapping my fingers or stammering – getting more worked up only to make it worse. I hate when this happens in public or, esp. over the phone for phone charades is not possible. 🙂 Doing words puzzles I think is helpful to keep the synapsis going in the brain and I enjoy doing them too. On days I am tired or feel I am not getting anywhere, I stop the puzzles so as to avoid getting irritated (or even blue over fact I can’t recall something). I hope that you are able to enjoy the puzzles too! Thanks for sharing 🙂

  13. Suzanne says:

    I just feel like crying! Having read the article and all the comments and now I know I’m not alone. I can relate to nearly everything that has been posted. The fibrofog is the worst thing in my life. I have recently been to my doctor because I was convinced that I have dementia. She says it’s more likely to be anxiety but now I realise that it’s the fibromyalgia. Thank you all so much opening up about your fears. You have all helped me so much and I will be able to cope better when I next lose a word or can’t find something “I’ve put in a safe place” but can’t remember where!

    but now is lost until I come across it

    • Lori Galpeer says:

      I am so glad to hear that you feel relief in knowing that we (as persons with FMS) do get this and we are not losing our mental faculties due to dementia, depression, etc. . It can be scarier sometimes just knowing that your body is not acting ‘right’ and yet may not know how to explain it, or who to. Interesting that your dr thought you might have anxiety – yes, in response to what you are going through, but the cause is different. It is definitely comforting to know we can share this and all of us (shaking our heads in agreement) understand for we go through it too. FMS is so much more complex than the standard pain and fatigue that is described most often. As with anything that exists on a chronic basis, it will begin to effect more areas of the body. On behalf of us all, glad that could be of help! 🙂

  14. Shannon says:

    I too find the fibro fog a major pain in my arse. I have always read a lot of books, since I was a pre-teen even. So my vocabulary has always been pretty large. So now, when I have to pause in the middle of a sentence to find a word, it’s embarrassing!!! It makes me feel stupid when I know I’m not.

    I just tell people that “I lose words sometimes” like it’s no big deal. When really, it is a huge deal to me. Fibro pain sucks, I’m often bed ridden and certainly homebound. Fatigue sucks too. Those I can handle, they are what they are. However, losing words just drives me nuts!

    “You know that thing.. the thing that you find when you…” etc, etc. So it’s like charades, except it’s me trying to explain what the word is I’m trying to find. I usually try to make it funny, because if I didn’t I’d feel like crying instead.

  15. Marilynne Rowland says:

    You are so describing me! I have battled Fibro/CFS for at least 22 years. Was at the top of my profession when it took a rapid downturn. At one point, I would hear literal gibberish come out of my mouth. Have not heard anyone experience that. I am 66 and my mother had dementia so this worries me. I have come to accept the lose of nouns, my biggest issue. I can describe everything about that “noun” but cannot come up with the word!! Love that I can google words I fail to spell correctly! Thankfully, most family and close friends do not hesitate to “fill in the blanks” for me! What I miss the most are my organizing skills! I get in big trouble when I move something to a new location! Re-found items 2-3 years later.

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