The Mental Clutter Scale for Fibromyalgia

I’ll definitely be watching to see if this tool is put into use by the medical community . . . For me, even though my pain levels stay high a good bit of the time, FibroFog is much harder to cope with. Pain I can handle, feeling like I’m losing my mind most of the time? Not so much. LOL

Thanks so much for keeping us updated on the latest, and for providing so much excellent info . . .

i have a huge problem with saying one word but meaning quite another and sometimes i don’t even catch it. my neurologist says it’s a side effect of topamax. i take that for migraines. so i can live with mixed up words or lower my dose and hope the migraines don’t come back. gee, hard choice. not.

This is very interesting. I sometimes feel like my house is full of fog. Definitely hazy. I suspected it was part of my ME but this helps clarify. I think I am blessed with all of the symptoms at times. Not much helps but to take care of myself and be patient, especially with the flaws created by the illness. Thank you Adrienne for keeping us up to date and connected to each other.

“Fibro Fog” is just as disabling for me as the physical pain. For instance….I can’t remember if I took my medications today. That IRRITATES me. I have all the sypmtoms above and to a moderate to severe degree. I’m only 30 years old. Struggling to keep my job, struggling to take care of my son and my husband and my home. Everyday is a struggle and I’m so exhausted from it. The forgetfulness, confusion, concentration, multi-tasking problems, not thinking clearly is starting to ruin my life. I don’t know what to do. I have been called a “pill seeker” more times than I can count when trying to seek help for the physical pain (due to my young age I guess). This started happening to me after delivery of my son (5 years ago). It just getting worse and worse and I can’t seem to get any help. I’m afraid my life is ruined by Fibromyalgia.

It’s the concentration that is so hard for me! I Take a pilates class, and sometimes forget, in the middle of the exercise, what we are doing. Where the arms and legs are supposed to go.

Maybe this trouble “tuning in” has been with me all my life. Lately it’s more apparent, as I take a college course and have a hard time concentrating when I read. Was this always the case? Or just now? No, I’ve had fibromyalgia all my life, if you ask me. Only now is it getting clearer as I have the words to describe what is happening to me.

To be in my 70’s, grandmother to four, and just finding out what’s been going on in my life, it’s amazing! All you young things have a great advantage in being cognizant so early on in your lives.

i also will say one thing but mean another but the word)s) just do not come out. I was on Topamax but now Lyrica and it does the same

My doctor dianosed me with ADD because I have these symptons. I have had Fibromyalgia for 24 years. Don’t even ask about the early years!!!

One of the worst things is that it`s an invisible disease. We all look completely normal from the outside so nobody knows whats going on in our minds and our bodies.
Everyone, please check out a drug that many thousands of people take for Fibro/ME/CFS as well as other autoimmune issues. Just Google ” LDN & FIBROMYALGIA” and get reading! Low dose NALTREXONE is far less toxic that Lyrica and all the other drugs we get offered.
We have to become our own advocates as doctors usually brush us off with antidepressants and the like. I found LDN when I was looking for a non toxic drug for my husband, who has MS. He`s been on it for 7 years and is doing really well. Since then many people have joined in the search and found LDN and people with Fibro seem to do especially well with it.
Once you`ve done your research then you have to find a doctor to presribe it, which is the most challenging part as it`s used “off label” for autoimmune disorders. I`ll be happy to give more info to anyone that needs some help. There are plenty of online support groups out there to for people using LDN.

Everyone in my family wonders why I won’t play a game of cards anymore. I can’t keep track of what is going on with the game. I don’t want to tell them it is due to the fibromyalgia because I feel like I’m always using it as an excuse.

Oh yes, fibro fog. I recently called my sister and told her that I would be having a colostomy and to remind her to have one when she turned 50. Hours later she called me back to ask if I had meant colonoscopy, not colostomy.

For those of you who have problems remembering whether you have taken your meds or not, get a 7-day a week, 4-times a day pill sorter. I could never remember and was given one by a physical therapy person. Now, one day a week I get all the meds out and systematically put them in the sorter. One less thing to think about. Word problems are a good indication of whether I’m overdoing or not. Usually am until I’m forced to spend a day or two in bed. Recognizing signs of overdoing is one way I have of attempting to regulate my activities.

All very familiar symptoms. Just wanted to say to Shaun that Topamax is nicknamed dopamax. It made me so stupid it wasn’t worth taking. You may have migraine and there are much better drugs for migraine eg Imigran. I use Neurontin daily and find it much better than Dopamax. Topamax also mad eme loose weight which was a desirble side-effect but I couldn’t live with being so stupid

I have SEVERE PAIN Fibro & RLS & Memory Lost or forget what I’m saying , if someone interrupts me. I have also forgot if I took my meds at night. It’s awful to live this way everyday. I write myself lots of reminder notes. I’m sorry to say this & hope I’m not offending a Doctor that reads this…but Doctors are flat STUPID when it comes to fibromyalgia. Wish I had more & better answers to this awful disease & all that goes with it. Thanks for any input!

Heather: Remember that if you keep pushing yourself, it could get much worse for the long run. I’ve heard that 40% of people with fibro develop Chronic Fatigue Syndrome/ME… and that’s from pushing too hard. You don’t think this fibro can get worse, but IT COULD GET WORSE.
Give yourself permission to tone it way down. I wish I had done that when I was your age instead of pushing through the pain,fog,fatigue to be the Best Mom,friend,daughter,community member,hostess,Girl Scout leader,school helper,etc.. Now I have no control over what pitiful mothering I can muster and all the rest is gone.
Take calcium, magnesium and zinc(malic acid) Add evening primrose oil. And if you can find an insightful MD to prescribe you a long term run of antibiotics, that could be very beneficial.It got me out of bed. Good luck, you are never without support! Karen

I get the fog where I feel I know what to say but when it comes time to say it the thought is totally gone. I even forgot a special thought with me Dr this last week so it really proves the fog exists with him. I said dang it, I hate when I forget that easy. I still remember my pills but when I one day have a problem I will get the pill sorters.

I am maxed out on mental confusion now. I tried to balance bank statement two nights ago and am $500 in my favor which just makes me more confused. I usually just change check book to match statement but this time I cannot. I just cannot force myself to tackle it again. Had I not procrastinated it would have made this task easier. My mother had Alzheimer and used to do circle words puzzles and as it progressed you could see what horror she had to go through. I used to enjoy buying books that had many different types of puzzles in them but even looking at the cover now almost causes me to have a breakdown. Instead of doing a puzzle – I am now the puzzle! I would collapse in tears if I was ever asked to do a written test, I use charge card for everything except writing check for rent which was supposed to make mental strain easier but my rubberband brains are stretched to the max just surviving.

Thought my concentration was improving. NOT. Just through out magazines from 2007. Was diagnosed in 2001 and right now I don’t feel any better. Went to my doctor yesterday, walked out feeling less hopeful and more depressed than ever. Wish just once someone could give me a answer or hope that this Fibro will somewhat get better.

For years, fibro fog was my worst symptom, although my pain is getting worse now that i’m in menopause. It caused enormous problems–at one point my husband had to take over all the bills, because I kept forgetting to sign checks etc. Not only is it humiliating–i used to be such a bright girl!- but it can really disrupt your social interactions and relationships with other people. My short term memory is so bad that I lose things continually–where are my glasses, where are my keys, I get to the grocery store and don’t have my list–and some people just can’t cope with that. I’ve lost friendships because they couldn’t understand why I didn’t just get my act together!

I have found several things that help some. I too use all kinds of organizational devices/memory aids–pill box (you don’t want to take two ambien cr in one evening, which i was doing!), listslistslists, day planner, postits everywhere etc. I now assume I won’t remember anything! I take l-tyrosine, an amino acid, 500 mg, in the morning–also during the afternoon slump if I remember! A friend with fibro recommended it, and it’s made a big difference for me–if i take it, I can remember words! I also take l-theanine every morning, meditation in a jar, which helps keep me calmer (if i’m anxious i can’t remember things!), and 100 mg of CoQ10, which gives me more energy–remembering takes energy!

And finally, I consciously work at forgiving myself when I forget something important–which I invariably do! I try to be as compassionate towards myself and my screwups as I am towards the people I love and theirs. This is hard, but it really helps. I’ve evolved a kind of affirmation: “I’m safe/ok even when I make a mistake.” We should all give this to ourselves.

One last fibro story: I got up to check the dosage on the l-theanine bottle, and I can’t find it anywhere! Grrr! I think it’s 200 mg.

I think this list is a start. I’d like to see a list of concrete questions complied by “fibroites” that might make a bigger impression on doctors.

For example:

*Can you read a book?

Reading was my passion. I became and academic research librarian, a legal researcher and a lawyer. Haven’t been able to read a book (know the words but can’t retain from page to page) since mid-2000s. It’s one of my biggest heart=breaks. Thank goodness for books on tape. I see them as movies and am able to remember at least general plot=lines. Doesn’t work for books that don’t have a clear visual image. That shuts out most non-fiction.

*Can you retain magazine article content for a week?

*Have you set yourself on fire lately?

Yep, really. Three times. Would forget to turn off the gas burner on the stove then reach to the back of the stove to get my teapot. Soon smelled, then felt, my robe sleeve which was flaming. Luckily I could turn while yanking off robe and throw it in the sink where flame was quickly extinguished. Never more than singed arm hair for me. But my fluffy, white terry robe has an odd brown right arm.

*Have you gone to bed leaving your exterior doors standing open?

I’d been sweeping the living room and porch.

*Are you comfortable talking with a group of people?

I find I prefer friends one-on-one. Multiple conversations can be overwhelming for me so now I avoid them.

*Do you find odd items in your fridge (ie, a screwdriver)?

*When walking or driving a familiar route, do you ever feel a moment of strong panic because suddenly nothing looks familiar?

Diagnosed with fibro in 1976 and ME(CFS) in 2000. Wishing you all peaceful minds and stronger bodies!

I have experienced all at one time or the other. However under the first list of Cognitive Skills the normal for me is experiencing 1. concentration, 3. staying focused, 5. expressing myself, 7. perceptual clarity and 8. mental speed. I have difficulty concentrating, staying focused for more than five minutes, perceptual clarity is so difficult that i simply give up most times, and my mental speed is so slow compared to what it once was it seems non-existent now. However, under Mental CLarity classifications are 1. spaciness , 3. confusion, 4. cluttered thinking, 6. rushing thoughts, 7. FUZZY HEADEDNESS is a big one, and once in a while 8. information overlook. It seems to be the spaciness, confusion, cluttered thinking, rushing thoughts are with me continually with the information overlook being thrown in for good measure. The fuzzy headedness is the major problem that overruns everything else. I am constantly second guessing myself – did I do this or do that?, what was I doing?, etc – to the point I will turn in a circle several times when I am attempting to remove something from the shelf for dinner or the refrigerator. Periodically I will just look at an appliance and try to remember why I am in front of it. What was I doing or planning to do? On number 8, I have always been so determined to progress logically from point A to point B, and now I am unsure where point B is. Reading directions is a massive effort of concentration just to assimilate the ingredients for a boxed cake mix: water, eggs, oil or butter. The concentration factor is just not there.
I truly would not wish this on my worst enemy and am so sorry my friends have been stricken with the same horrid problems. At one time I was so active, full-time worker, volunteer, homeroom mother for two kids at the same time, caretaker for so many of my older relatives and busy wife. It’s like it all belonged to someone else, someone I would like to know, someone I would like to be. Still.

@ Jamie, you are the only other person I have heard say they cant read a book. I do sympathise with you as I am the same. For some crazy reason I can retain and work with more on a computer than with a book. I think it is something to do with everything being there in front of you and findable, rather than having to focus and follow the words to find it. I also find I can still do some work with Photoshop, a program I used to use as a photographer. It seems I can do more with actions than trying to concentrate mentally and focus. The actions on Photoshop are one at a time and you dont need a constant thought process.

I have found the most benefit I have received would be from TYROSINE. I take 1500mg per day. 3 x 500, one each at morning noon and night. I often forget the midday one and can tell the difference the next day. I also found it increased my energy as much as my clarity. The difference with Tyrosine was substantial, from never knowing the day of the week, to remembering the day and often the date as well. It is well worth giving it a try and I wouldnt be without it now. It doesnt fix everything, but I celebrated when I found what it did for me.

I would love a way of measuring fibrofog then my doctor might understand it at least. He is in such a position of power in my life as to what I can get in regards to medication and assistance.

@ donnak, thank you for your comments, I believe you have hit the nail right on the head. Fibrofog can play havoc on your life and cause all sorts of things. The one thing we can control is how we react to it. Forgive yourself. With the help of a phsycologist over 3 years I have learnt to control my stress, worry and acceptance of myself. Life is a much happier and contented place and does wonders for my fibro.

I wish you all a wonderful day,
hugs!
Ali xx

Thank you, Jami. It really helps, knowing we’re not the only one with these symptoms. Phosphatidyl serine has been studied and used in Europe for cognitive dysfunction; and it has really helped my fibrofog. I take 100 mg a.m. and p.m. and 25 mg of DHEA in the morning. I think both of them make a big difference. I’ll have to try the tyrosine.

I’m usually on a very low fat diet. Last night I indulged and ate butter and I’m very sore this morning. I think the saturated fat is responsible; but sometimes it’s hard to tell.

This is enlightening in how my symptoms have progressed from far before diagnosis and now years after diagnosis of fibromyalgia. And the brain fog has definitely worsened in number of symptoms and severity, as well as number of days a week I suffer with them. The pain is fairly well tolerated now that I have been on Savella since its development. But the brain fog is so hard to fathom the daily struggles unless you are there yourself. At this time, I see no hope of ever having a ‘normal’ life, not being on disability or having the type of life I dreamed of having.

donnak, where do I purchase the l-tyrosine and l-theanine? i have major fibrofog and it’s getting worse! I definitely need to buy a pill case for the days of the week. Do you also have trouble sleeping? it is now 3am when I am typing this, rarely do I ever get to sleep at a normal hour.

I can say I have had all of those in various combinations and intensities for every day of the last 10 years. I have noticed that taking 2-3 short walks (and working up if you can) helps a lot. One book that helped me get my household clutter, paperwork clutter, ideas, etc organized so I don’t fret much about them anymore is “Getting Things Done” by David Allen. It’s different the all the other ‘organizing books/techniques’ and is easy to use. He takes you though it step by step.

Every once in a while I get behind and have to take an hour or so to get everything back on track but it’s easy to do. It won’t solve all you problems but will take a load off. I’d recommend it.

Heather,
I’m so sorry your going threw all this. It got worse for me in my 30s. I’m now 54. I just hope that we will learn more about it and be able to at least help us feel a little better.
I to pushed my self so much in my 30s. I was in graduate school had 2 jobs, I worked very hard and in the end, well I don’t have a career any more. When I was 40 I went on disability.
The best advise I can give you is to try the best you can to slow down. I know it’s hard but if you can it will help a little.
In the mean time if you would like a buddy to e-mail with I’m happy to do that.
Cindy

I have experienced all of the above

I had to quit my job as an accountant because my short term memory was just shot. The mental confusion made me an anxious mess.

But I found an upside to this. I’ll lose myself in dumbed down fictional books. And I can reread those books, because I don’t remember them from the first time around.

Sometimes you just have to laugh or you’ll cry…

Thanks to all of you. My first time reading thru any of the comments. I was diagnosed 2 1/2 years ago, after a total crash on all levels. I had been suffering with bizarre inconsistent symtoms for many many years.
I am improving but at a snails pace, cannot get my brain working. I was a manager type a personality. I have not been depressed until recently, I just have not been able to pull it together. I will look into some of the meds all have suggested.
I give thanks every day for the small things I do accomplish. As far as 1 hour to clean up, it takes me weeks. My fatgue is so severe I am happy if I ca walk to the kitchen and back, which I do many times a day as I cannot remember what I wanted. I guess we are all choosen to teach the world about this condition. With Blessings Christine

I can identify with all of you! And sometimes, you’re right, you just have to laugh (better than crying).

I bought myself a desktop calendar which I look at every day (as opposed to the little one that gets forgotten in my purse). I write down what I have to do each day & check each item off as I do it. Many days the items get moved to the next day, but eventually they get done. If I don’t have SOMETHING in front of me to remind me, I just plain won’t remember. And at the end of the month, I can see that I’ve actually accomplished things (especially if I’ve forgotten that I’ve done them-I’ve got a record!)

Another thing which clutters up my mind terribly is if I’m on the phone, trying to concentrate on what the other person is saying, and someone in the room starts talking to me at the same time. Can NOT process; I end up hearing absolutely nothing except noise.

Holy junk! I’ve done all of this and some more. I even had the VA Psych/MH dept do a mini cognistat on me because I had begun to fear that I was developing alzheimer’s (I currently care for my mother with same). For years I’ve had speech problems like handing a mop to my daughter and asking her to go vacuum the kitchen. Or calling a pig a dog, etc. Everyone around me has gotten used to it and sometimes I know I’m doing and sometimes I don’t. It’s so darn aggravating! I can write alot better than I speak anymore. And, I can read – as long as everyone is asleep, gone, or quiet and leaves me alone. I can do Facebook, Email, and run errands (with a list for a list, for a list – LOL!) Then of course, there’s the piles. I pile everything and everything has a pile and if you move my piles, I feel totally lost. Oh, and the Psych diagnosed me with Major Depressive disorder, and and ADHD – at 47!

Yup! I’ve had/have, every single one from both lists!!! I would really like to find a way to “settle it down” a bit.
This is the one, most interfering thing, that fibromyalgia has caused in me!

I HAVE EXPERIENCED IN THE PAST AND AM PRESENTLY EXPERIENCING ALL THOSE ON THE LIST. THEY HAVE BEEN COMPLAINTS AND DECRIPTIONS TO MY PRIMARY DOCTOR AND NEUROLOGIST.

i agree with everything #19 said (already forgot her name!) I couldnt read all posts though. My daughter says she wants me tested for alzheimers. She said I gotten much worse memory-wise in the past year. BUT I have also has MORE STRESS in the past year. I’m also going through menopause…double brain depleter! I got a Kindle for my birthday in October. I’ve downlaoed 16 books. i havent read any of them. I just cant retain what iread. it used to be my passion. My Go-To thing when i couldnt do anything else.

I have all of the symptoms of fibro fog to some degree, at some point of every day. Sometimes it seems that I have one really badly but another is better and at other times I can have most of them to a very high degree. That is so frustrating, especially as it’s accompanied by being physically debilated too, because I can’t even read or wtch TV ( both of these are rstricted for me anyway, as is the caase with many of the above people because I can’t understand what is being said or what is written. I haven’t been able to work for 6 years
I can’t add more now althuogh i’d like to do so.
* Hence all the mistakes! I also have to say that many of my typos are ones that I make consistently.. sometimes I can recognise them as typos and other times I can not. Jools BA (Hons) English and ABPI ( Associate member of British Pharmceutical Industry)

I feel like I’ve dropped 20 IQ points. The last time I took the test it was 142. I’m afraid to take it now.
Leaving the doors unlocked, luckily I have a 140 lb service dog and everyone in town knows it. Driving somewhere and all of the sudden wondering where I am and where I’m going.
I used to design web pages. I could do it on notepad. But I stopped several years ago because it was getting to be too much. I have to design 5 pages right now and can’t even use Dreamweaver which is a “what you see is what you get” program that almost does it all for you. It’s so embarassing and frustrating. I end up with headaches and end up having to go to bed because I can’t think anymore.
My one respite is reading. I don’t necessarily remember the book after I am done. But I can immerse myself into it and forget about the rest of life. Until I have to change positions from the pain… sigh
I live alone. My daughter moved out when she was 17. It was all too much for her. I was diagnosed in ‘99, so she grew up with it. She hasn’t talked to me in 3 1/2 years.
I don’t want ANYONE to have this disease. But I’m glad that you are all here. It makes bearing the symptoms a lot easier knowing that it’s not just me.

We just had an argument in my house about multitasking. I live with two males who do multitask really well and they treat me like I can drive with their constant semi-aggressive testosterone filled banter in my ear, type with them yacking at me and a million things I can’t think of at the moment. My new mantra is “I DO NOT MULTITASK!” If no one is going to die in the next 10 seconds shut up and let me finish.

I’ve had every one idleness symptoms and I think a lot more. When I’m in a fog (and I’m supposed everyone hasn’t referred to it this way) I feel like I’m lopsided, off tilt, my axis is crooked, you know. Then there is the vertigo, that’s what kills me every time. I can’t walk, I can’t think, I have very hard times even speaking right and I’ve never took topamax before.

I’m a disabled veteran, been diagnosed now 20 years, gets worse everyday. My doctors will not give me pain meds so I have to use MMJ to deal with it, it helps with the pain, bit not the cognitive issues. Obviously, lol.

I’ve never met another man with it, I know they are out there, but we are a rare breed. Ladies, I’m right there with you, I will keep all of you in my prayers

SAE

Jami, you so hit the nail on the head when you asked about driving a familiar route, then suddenly not having any idea where you are! TERRIFYING!!!!! It was around 4 on the clock & I couldn’t even differentiate if it was a.m. or p.m.!!!