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Newbie with a BAD case of Fibro Fog - I think
DtaRock posted:

I am a newbie, though I have lurked off and on for 3-4 yrs. I fell down my home stairs (4 steps) 9 yrs ago. Was wearing a back pack with 50 lb of books. I blew out my lower back (L5-S1). Had 2 failed fusion surgeries.

From that moment on, my life has been a PAINFUL living hell. I went from being a Univ. Professor to not being able to even keep a single thought together. Am 100% disabled per SS on my initial hearing. Would do almost anything to be able to do ANY sort of work again.

Take Morphine (short acting and CR), muscle relaxant, Ambien & Lyrica, and a muscle relaxant. No Vitamin D or testostorone level in my system. A Psychologist was my real savior.

Now, why am I writing? I have many major cognitive problems often grouped and called fibro fog. I have a problem recalling correct words, unable to remember things I use to easily remember, can not get many things from short term memory into long term permanent memory, misplace my keys, while out driving forget where or why I am out, people I know but can not recall their names or how they know me, unable to add 2-3 digit numbers together in my head. It goes on and on. Originally thought I was loosing my mind but found out by going here and the RA site that these problems are called fibro fog (misnamed however).

I WAS a CPA & a Univ. Professor. However, I can not get even close to the level of a HS Teacher or a Univ Prof. In fact, I can not remember a procedure that takes 3-4 steps to complete, like a Dinner with a few steps. I get started cooking and simply repeat and repeat the steps. FINALLY I give up in disgust. I am looking for help in what works for you guys AND more importantly - continues to work. I have tried some things, but am still stuck with things that don't really do much. Most Doctors are worthless in this new area. Any help you have found would be GREATLY appreciated!

ps. my handle DlaRock (Dumb like a Rock) - which is how I feel now. Sorry, try to keep these feeling in check, but ...
Wolfsong452 responded:
sending you healing thoughts.
Caprice_WebMD_Staff responded:
Hi and welcome to this wonderful place.

I know you're not alone in having to deal with this and hope others will be chiming in with how they cope. There have been a lot of discussions here about this.

Be sure to discuss this with your doctor as it's possible the meds are contributing and some adjustments may help.

But aside from that, I have some of the same problems. Mostly I handle it with humor but I also use calendars (both hard copy and on the computer) and lots of notes and being VERY habitual about where I leave things We can learn to work around and with the fibro fog. :-)
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
thekingskid responded:
Dear DlaRock; It isn't easy but with time it will get easier. You have to find ways to remember things. Like writing things down. This means getting a small notebook to keep with you and jot everything down! I have been diagnosed with this disease since 1985 and have M.S. on top of it with more of the same problems! I was a respiratory Terapy Tech andd ha dto quit work. My mind still tells me that I am lazy and get up and go to work and everytime I try my body laughs at me!! Try not to get discouraged and keep looking for ways to help you. Ask family and friedns for help. You will be surprised but most will be more than willing to help and are just waiting for you to ask them. Also, try to find a good support group. Don't go to one where all they do is complain about what they are going through but find ne thaat is supp\ortive and helpful to each other. Best of luck and I will pray things get better for you. The KingsKid,
CritterLoverJS responded:
Do watch your meds. As I was being diagnosed I was being sent to a lot of different doctors. Unusual to FM they found lesions on my brain. I was sent to a neurologist. He did not listen to my problems at all and just wanted to treat my headaches, he put me on topomax. He upped the dose to 100 mg. I got downright stupid. When I told my regular physician doctor she told me that could be the problem Getting of that really helped. I still have fibro fog, but it is not nearly as bad. I still work and am always worried they are going to figure out I'm not as good as I was. I make a lot of mistakes.(I design computer software.) But I try doing mind exercises - Sudoku, crossword puzzles. Also, notes and a tape recorder help me with thoughts. It makes me mad a lot because I used to have a mind like a steel trap and could multi task so many things. It's just not right.
Anyway check the side effects of your meds, use the notes, get a hand tape recorder to help with the little things, and do the brain exercises. I hope this helps.
artist1275 replied to Caprice_WebMD_Staff's response:
I am new to this site, but have been dealing with this for over 8 years, part of which it took the doctors awhile to diagnois what was wrong.

I also have AFIB so my doctor is cauious on the meds.

The fog, at first I thought I was loosing my mind until one day I was reading about Fibro Fog. Well it made sense, I am on disablilty and have a hard time remembering so of the simpliest things.

The problem recalling correct words, or saying them correctly has the hardiest for me. I know sleep, water aeobics, heat on painful muscles, Vitamin D and meds for pain work for me. When my brain shuts down, then I take a nap. Its either that or be a zombie.

I agree with Caprice, alot of calenders, notes is very helpful.
gaylewilliamson responded:
YOU are NOT DUMB! I had an anurysm rupture and emergency surgery in 9/98, and 2 more removed by major brain surgery 6 months later and a final one a month later for infection and major blood clot on the brain where the 6th surgery was done. All done at Emory in Atlanta. They saved my so-called life but ended with the best of all possible options---after learning to walk again to control bladder, eat and even drink any liquid, taking months to learn, ended up with short term memory lose. I learned you can learn everything but recall of the recent is the hardest thing in my life I have ever tried to deal with. Cancer surviver at 31-----total hip replacement after all the brain repairs {due to blood clot causing hip to crumble} can deal with all things but the memory. You are not alone--retired chef and worked several years as a Social Worker for the state of Florida. The far past can remember but can't remember what I ate yesterday or what I did. SS disabled me in 99 against MY wishes and would love to be able to have something in my life that makes me feel worth being saved. Always asking myself Why DID I survive? There has to be something we can do in life to make us feel worth something. I know how you feel and I am sure others are out there----can't give any advice other than I keep notebooks daily and log them by the months and the year. Gives me something to refresh my memory with. Have S.Lupus, along with the Fibro and RA and now the Osteo has kicked in. Hard to be disabled at 49 when you have led a life full being active. If you find any help or advice be sure and post would love to find solution. gaylewilliamson
BelPwnt responded:
I just got off the phone with my mom, we talked for an hour and a half and in that time I managed to retell a few stories. A couple of years ago I was the go-to person if something needed to be remembered, now I can't even have a long chat without repeating myself.

It's not all the time, but it's enough to be discouraging. I'm new, comparatively, to the whole FM roller coaster. I was diagnosed about a year ago (I think, my sense of time is borked, as well), but, of course, I'd been living with it for quite a while before I got the official diagnosis. I'm a stay-at-home mom, and have been for the last 15 years. I was good at my job, active in the kids' schools and our house was always full of jabbering young'ns :). I cooked nearly every night, could come up with games, crafts, and stories without any effort. I was thin, active, and generally very content.

Now my husband does all the cooking because I get lost in the kitchen, I can even be overwhelmed by the simple act of making pasta. I don't drive, I don't do crafts, my house has been far too quiet.

But! That's changing. I'm learning to cope. I'm still in here, the quick minded woman still exists, I just can't get to the surface the vast majority of the time. I've learned to forgive myself, to accept that my life is moment to moment, and I'm bordering on being alright with that. I haven't "given up", I've just accepted that things have changed. I live with calenders, as Caprice said, and God love the inventor of the post-it! I keep post-its with me all the time. My kids have learned to write things down and stick them to my desk, and I've learned to be okay with needing that.

I ask people to remind me of things constantly, and if I forget something I've learned to let go of the anger and guilt the vast majority of the time. I've paired down my life a lot, but, truth be told, that was already happening thanks to the pain and earlier bouts of fog before I knew what to call it. Now, at least, I'm able to make informed choices about what I can handle and what I don't think I should take on.

I don't know that it gets better with time so much as it gets easier because you learn coping strategies. Hang in there, and try to have patience with yourself (a heck of a request if you're anything like me).

MercedesM responded:
I was diagnosed a year ago but have noticed symptoms similar to what you described sine about eight years ago after i was assaulted and beaten up pretty bad. i thougt i was just getting dumb i can't rwmember anything anymore and forget directions so easy and can't concentrate on things and finding work i can actualy do isn't easy at all. idk where to get help!

if anyone can help
Evangeline22 responded:
I was a public health nurse in my other life. I can no longer figure out simple math and can't remember what stories I've told others or what they've said to me. When fibro fog hits me, I can't drive safely, which limits social activities and means I miss choir rehearsals a lot. Stress is especially bad for bringing on the fibro fog.
DarDuran replied to BelPwnt's response:
Watch out for Lyrica. I took that for a while and found that I had a lot of the same problems that you report. In fact, I felt like I was drunk while on it -- especially first thing in the morning. That cleared up a lot when I stopped taking it. My husband's grandmother, who was on it for a different reason, experienced the same thing as well. Might be time to consider an alternative for that.

That said, Fibromyalgia is a life altering pain in the ass. I am twenty-eight years old, I graduated with high honors from undergrad., I finished my MBA with a 4.0, and while I can still put things together well on paper, I hate having to maintain conversation because I can never think of the right words.

I wish you well... we all struggle. You are not alone.
pinklady1965 responded:
I have the same thing. I feel so stupid and lost. I came out of the bathroom stall at work the other day, and couldn't remember where I was or which way to turn! I will be talking and I can't remember simple words. I take a lot of meds for depression and anxiety and shaking and trembling.
texasconvert responded:
I have been fighting with fibro for 16 years now, but I started going to a Chripractor 3 years ago and my progress has been unbelievable. I started out three times a week and have now graduated to every other week. Depression is another part of this syndrome, and maybe you need an anti-depressant--it sounds like your life has changed dramatically--why wouldn't you be depressed! I crashed mentally about three years ago and it was the best thing that every happened to me, in the long run (well, maybe not the best). I was so sick, I thought I was dying. I couldn't sleep, eat, have a conversation, be with people, etc. I went to 7 doctors, all telling me the unbelievable truth--I was suffering from GAD and depression. It took 9 full weeks before the medication worked, but it eventually did. However, I gained 50 pounds from the medication, but that is another story. Try to stop dwelling on who you no longer are, and concentrate on the good stuff. I've been there. It isn't easy, but it is possible!
jimmarti replied to texasconvert's response:
Fibrofog was one of the first symptoms I had, soon followed by migraine headaches and trembling and loss of balance. I started taking Cymbalta, which helped quite a bit with muscle and mood issues, but didn't help much else.

On one of these chat sites, I became familiar with LDN (Low Dose Naltrexone). I urge everyone with FM to research it. Your physician will not know anything about it, so you have to do the work. I could not find anyone to Rx it, so I got it for myself from Canada, via India. It has no known side effects. It is the only drug that works on the core cause of FM, making the nerves which transmit sensory messages to the brain less acute -- therefore the pain, anxiety etc. are less.

Takes several weeks to fully work, but I noticed the brainfog gone in just a few days. NO OPIATES can be combined with LDN, so I am limited to OTC meds for pain, but frankly, I don't need much as the pain has decreased markedly!

There is a website called Low Dose Naltrexone as well as many sites with user comments. It may not work, but is very unlikely to hurt!

Alive Again Marti
fibroinsd responded:
Sorry for what you are dealing with....but I am a little confused ...(no real surprise there....) said you have no Vit. D...what are you doing about that?

I wish I was more informed on the medical side of things...I would make sure you aren't taking any meds that can cause confusion and memory problems...I think Lyrica can sometimes cause this...So definately talk to your doc about your meds...

do read the tips and toolbox posts off to the right side for ideas that might be helpful...

Let's put the fun back in dysfunctional !- Mary Englebright

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