Outside of the pain

I'm feeling really off right now. I often lose my train of thought.. start to tell someone something and then it's just gone, put a pill in my mouth and go to grab my water and grab a lighter or something instead. Hiding stuff from myself when what I mean to do is put it up so I'll know where it is. I know stuff like that is not unheard of for everyone at some point, but this is something else.

I am a movie buff. Especially horror and always have been. I remember movies and who was in them and the details.. even how I felt and what was going on in my life at the time I watched it. Like, nostalgia. So, sometime last week when someone asked if they should see Insidious and I drew a blank, I felt kind of lost in a way because that's always been my thing. Movies and music. Friends and family use me like a moviepedia or something and will ask, "what was the movie where...?" or "what was that song that said...?" and they will start to give me the little details they remember and I immediately know what it is. I even watched the trailer for Insidious thinking it would jar my memory. Nothing. Thing is, I know I saw it. As soon as it came out, I was on it like I am any horror movie, but I cannot remember a single detail, nothing in the trailer looks familiar.. It's just gone. Like I never saw it. I know it's not really a big thing in the grand scheme of things, but it was my thing and I enjoyed it, so I have been very weirded out since. That was the first time it ever happened and the only time, until yesterday..

Same thing, different movie. Read synopsis, watched trailer, I know for a fact I watched it, but it's like it's been erased. Now I'm really freaking out. I told my husband and my best friend about it and they were both just dumbfounded by it because they know me and movies and I'm scared of this happening again. Is this what is meant by 'fibro fog?' Do you lose things, even memories and then feel.. I can't think of a proper word for what I feel. Lost is all that keeps coming to mind. This is very scary to me. This is my mind, my memories. How can I lose two movies that I just watched recently? Insidious is fairly new. The other is older, but I watched it recently. I know I watched them like I know I'm sitting here typing this, but that even disturbs me because how can I not know a thing about either movie, even after watching parts, but be so certain that I did watch them? And I even remember being disappointed with Insidious. What is going on?

Hi pibblemom,

I've not experienced fibro fog like what you are describing. I do find myself not being able to remember words when talking with people or asking questions I've already asked and had answered. If I were you I'd give my doctor a call and see what he says. Make sure it isn't being caused by one of your meds. Sorry I can't help you more then that. Please let us know what you find out.

Dottie S

Thanks for responding, Dottie. I'll make that call this morning. I always have trouble finding the right word sometimes and people say they've told me something, but I don't remember it and just yesterday I caught myself about to tell my cousin something I'd already told her and of course we had a giggle over it. That's all annoying, but this thing with the movies is really scary for me.

At present, I'm not on any of the medications prescribed for fm because I am in the process of seeing doctors. My family doctor is the one who believes I have fm and immediately referred me to a rheumatologist. I will be seeing her this coming Tuesday, finally. It's taken a month to get in to see her. I initially started going to my doctor after a couple of years of agoraphobia, which I'm still fighting just to see doctors. In that time my pain has become unbearable, I've gained weight, can't tolerate hot water for my bath anymore. It literally hurts my skin. Sound hurts... a lot and too much of it at any level makes my anxiety go through the roof and my skin on my arms especially feels like it's on fire and being pricked with needles at the same time. I have been diagnosed with depression, PTSD and panic disorder for years now and have been on medication for that, then the agoraphobia followed. Pain started a few years ago and I had gotten to the point where I was thinking that if I were to ever not be in pain, then something was wrong. Stupid, I know. So right now I am just going on my family doctors opinion and research material he gave me, which describes me in every way. Even down to the menstrual problems and IBS. My gyno sent me for every test and ultrasound, etc., and even though it's excruciating, everything came back normal. X-rays are normal, for the most part, aside from a curvature in my spine and some bone spurs and DJD in my spine. But the pain is not localized to just my back. It's everywhere. I can't sleep for long because back, hip and leg pain (both hips and legs) wake me up consistently. Sometimes it's headaches and/or neck and jaw pain. If I bump into something, even lightly it's is like being jolted or shocked and pain shoots from the area I bumped and takes forever to dull down.

I don't want to have fibro. I'm really scared about my appointment, but I have to know what's wrong with me once and for all and that one thought is what's made me get through my agoraphobia enough to go to the doctor and hopefully more soon if I keep fighting it. As it is.. I have no life outside of my home and movies/books were my entertainment/escape and now even that is being affected. I'm only 38 years old. This should not be happening at my age.

I know exactly what you are going through, pibblemom. I first noticed it and realized what was happening after the fact while I was swimming out of the fog very slowly. When I was working my job consisted of constant multitasking and constant interruptions happening all the time. I was on the phone with a parent, trying to tell them where they could find their child’s report card online and our assoc. principal stopped in front of my desk and got my attention and said she needed 12 red binders in 2 days. I then got another call, putting someone on hold and finished my first call. I forgot to write down a note about binders AND kept someone on hold fir who knows how long! I never got back to it and realized I didn’t order binders until 3:00 am while I couldn’t sleep. Then it kept getting worse. I eventually realized it happened when I was overwhelmed by noise, smells, my thoughts get interrupted, little sleep and loads of pain. I can’t drive with musc on anymore, as that and the noise of traffic starts me doubting where I’m going! Or driving to work and I’m not working! My therapist says the brain has been overstimulated and can’t connect your thoughts to your actions, or does something different. Like you know all the movies and what they entail, but you can’t recall it like you always have.

I have kept notes in a pain diary of what I was doing or the environment prior to kind of get a feel if when it happens. On really painful days it is 10 x worse. Our central nervous system is on a fast train and some things shut down. I try to do deep breathing if I can, which settles me down, as I get so frustrated and upset when it happens which make it worse.

Last time it happened I was in a very noisy restaurant and we had to leave. I couldn’t form words and was afraid I was going to fall off the chair. It really sucks. With your PTSD, I’m sure that doesn’t help things. Being in 3 auto accidents, I am the worst passenger in the word! Even deep breathing doesn’t help when my husband is driving! I’m Wilma Flintstone trying to drag my feet to stop the car! I hurt so bad after I’m done with the ride and the stress that the fog is as thick as a blanket.

You’re not alone in this. I would definitely talk to your doctor about it, as you’ll want it noted in your records. They may have alternative methods of coping with it. If you find something that works, please share! hugs through the fog ~ Sandi :slight_smile:

I also love horror movies. My fog has gotten better after some sleep issues were resolved. Please post on the doctors call or if seen today. Do you see a neurologist ?

The fog is so scary at times. I forget names of long time clients. I forget to write down appts when I am busy away from my book then end up with several walking in at the same time. One day I was driving any came to a 4 way stop and very briefly didn’t know where I was even though I drive there all the time. Alot of the time it’s harmless and I can laugh about it but other times it makes me question my capabilities.

Thanks. I did a list just a few days ago and have been keeping a pain/emotion journal since seeing my family doctor. But, I do worry about that. About saying too much and looking like a hypochondriac or something. I mean, my list is extensive =/ I ended up having to write a note to my doctor when I first saw him again because I knew if I spoke, I'd break down and I am sick of breaking down. My doctor already knows about my agoraphobia and I'm sure he sent my chart to the rheumatologist because he did all the blood work and stuff, unless she wants to do it again. But yeah, that is about the long and short of it, what you said. When I talk about the pain and not being able to do things I want to do, I break down every time. Really embarrassing.

Hey Sandi. Everything you say is like you are talking about my life. I always used to work and mostly at animal ER. Now I am a full time Animal/Pit Bull advocate. My work is now online through networking and donations and education, but I miss being an 'activist.' My local shelters always need volunteers and I can't do anything anymore, but donate funds. Animals have always been my passion and I get really depressed when I think about the things that I could be doing for those animals if not for this constant pain and fear of being out of my house. The thought of having a panic attack almost makes me have one anyway, so I stay home where I won't get into a situation that I can't get out of fast enough. Noise and a lot of people are my triggers. I miss my music and I cannot have the TV on in here and that's hard because when my husband is home, he wants to watch TV and I can't stand the sound of a TV because whatever is on is just incoherent noise to me. Like people screaming. I want to be normal again so much.

I was making mistakes at work too. The worst was when I was refilling prescription for a dog with epilepsy and I gave the 20mg instead of the 60mg he had always taken. Thankfully his dad saw that the pills were different before leaving the clinic and I was able to fix my mistake, but if he hadn't, I could have caused that dog to have a seizure. :( I left the job not long after that happened.

Meds I take atm are Klonopin, Prozac and my doc put me on Mobic for my pain but it isn't touching it. I might as well be eating candy and that is weird for me because I've only taken pain pills when I had my wisdom teeth out and hated the way they made me feel, so I am very leery of pain meds and I have a very low tolerance as well. Most everything like that knocks me on my butt.

I'm looking forward to The Conjuring too. I am part of a really great group for horror fans on facebook. I had run out of things to watch until I joined there and found new, but older stuff I never saw. I love watching horror movies that were before my time. Black Sunday is one of my favorite oldies. I'm the same with music as well. I might not be able to tell you what day of the week it is but let a song come on that I haven't heard since the 80's and I can sing it word for word. Would love for you to join us at the horror group. We are such nerds. Just click here and look for Annabel Ghastly. That would be me. :) There is always someone around to add you.

Doc hasn't called me back so far. =/ No neuro... yet. Doc referred me straight to rheuma. I did my research and found that they are the number one go to for fibro and neuro being second. So, I don't know if she will be sending me on to neuro or not.

I totally get you and I know losing a couple of horror movies my seem trivial, but it scares me because it's my mind and to just lose something that I have always been so consistent in makes me wonder what else I may have forgotten. My phone is my sidekick. As soon as I'm told an appointment or anything that has to be done at a certain time, on a certain day I put it straight in my phone and set an alert for it, but I have forgotten to do that a few times when I was unable to do it immediately. I have several composition books for different things which I had to write in bold on the outside what each one if for and I have to write everything down, but still I will sometimes forget to even look at those. It really makes me feel like I'm losing it.

The only meds I am taking are the ones I've been on for several years now for depression and panic disorder. He did give me an anti-inflammatory because tests show that my inflammatory levels were really high. Those aren't having any effect at all. So they already have all my meds on file. As far any kind of pain med, nothing yet. I take over the counter ibuprophen. I hate having to have blood drawn because they can never find a good one in the crook of my elbow and always end up having to stick me in the back of the hand. Hurts right there and I've had them blow veins there too. The back of my hand stays blue and swollen for days after. Anyway, I carry all of my meds in my bag along with my composition book just so they have the proof, if they need it. Not like I take anything that can make you high or something lol. At least, I don't think so.

Hope you're feeling better today. I understand about facebook. I have a separate account myself that my family doesn't know about and that's what I use for the horror group and for my little zombie pets game. It's too cute. :)

I got a really easy one because I had tried my brothers iphone and wanted to smash it. I got the Nokia Lumia. It has big tiles and everything is very plain and simple. I don't think I will ever have another.

I do know wishy washy. I pretty much ran my mom off. I needed my house back so bad. Some peace. And she is so critical and loud that I finally snapped. So she is at my brothers now and I kind of don't know what to do with myself. =/

Right on, Sandi, you are exactly right. I've always had this problem ayway (ADHD? Who knows) BUT it's become so much worse this past year and noise does make it MUCH harder to concentrate. (And I absolutely CANNOT hear someone speaking to me when the TV is on anymore. Too much over-stimulation, I believe, just as your counselor pointed out, Sandi.)

Pibblemom, I forget books exactly like you forget movies, and my great pride and joy has been reading. So yes, I think that fibro might be causing your lack of memory. And try to note if you are busy or are interrupted or conversations are going on around you when you are asked again about a movie and can't recall it. Or maybe overly stressed or TIRED. Fatigue REALLLLLY messes with my mind. Makes an idiot out of me, in fact. So maybe you're doing too much and are overly tired. I honestly don't know but I agree that you should mention it to your doctor without over-emphasizing the depression element because as Sandi said, doctors just LOOOOOOOVE to blame anything on depression. I guess it's the fail-safe easy diagnosis for lazy doctors)

I honestly do suspect that your fibro is doing this to you. It can be EXTREMELY frustrating and even humiliating to have these sorts of things pop up regularly (for me it is forgetting an important word that I want to introduce into a sentence. Groping around, trying to remember the word makes me feel like an 80 year old. So yes, I do so much understand your pain and frustration over the situation. But do try to go easy on yourself. It's not your fault, it's more than likely this curse of an affliction.

Gentle hugs to you, with my forgotten book in my hand,


Kelly, yes, yes, and yes again! I misplace things CONSTANTLY (lost my cell phone and never have found it, had to replace it. All I did was put it down for a SECOND, and the fibro fog monster ate it!) And like you, I do weird things like grabbing a tube of hair dye conditioner instead of the toothpaste. Didn't use it, thankfully! I also put weird stuff in the refrig at times. And my son came for 2 months this summer so he could help me out at my job. He would do all of the hard stuff, like carrying the heavy meal bag and delivering the meals to the elderly, while I did the driving. Well, I got so exhausted that I CONSTANTLY drove past their addresses and tried to head to God knows where. Fortunately my son redirected me. It was due to fatigue!!! When I'm exhausted (driving for 3 hours was enough to do it to me) I make weird and stupid mistakes. Misspeaking, forgetting words, forgetting what I went to look for, forgetting what I wanted to say in a conversation, losing things...you name it. Fibro fog all the way.

How cute that sounds, zombie pets! And don't forget vampire pets that can enjoy eternity with their beloved owners!

Hi Petunia. I'm an avid reader as well and would hate to lose the knowledge I've gained through books. And I do have a lot of stress in my life lately and that's pretty bad when you are limited to your house aside from going to doctor. Some, I put myself in with my animal advocacy. I get so angry sometimes. Human beings can be so...inhuman. My girl (Roxy) is sick and on treatment right now and I am constantly worried about her and fussing over her because she has to be kept calm. She is my daughter in all ways. I may not have given birth to her, but I was there when she was born. One of my sons cut the end of his finger off and had to have surgery to file the bone down and close it up and he's not happy. My other son is nineteen and his talk of moving away makes me a nervous wreck. My husband works out of state Monday - Friday, so am left to depend on my mom more and that's where it gets really bad. She's loud, critical, and very judgmental. My husband gives her money to go to the grocery store with my sons and get groceries for the week, but it doesn't end there. She stays the whole week and she is also one of those people who constantly has to have to TV on. We struggled with that for a while before she finally gave up and leaves it off now because I was always telling her to turn it down. She bitches about everything and will even do it out loud to herself. She has no concept of quietly putting dishes away or gently closing doors. Maybe it's just me being hypersensitive to the noise, but it seems to me like she does everything as loud as she possibly can intentionally and she is forever criticizing me and my sons. Telling us what we should and shouldn't be doing. She tells me to "push past the pain" or "get up and walk" when she knows walking is the most excruciating thing for me, but she claims, "when I'm sore, I get up and walk it off and then I feel better." I tell her, this is not soreness.. it's full fledged, screaming, back breaking pain. She says things about my sleep pattern.. or lack there of, actually. Sometimes I can sleep and sometimes I can't, but regardless, most nights I am back up around 2am because my hips and legs and back wake me up and it takes a while for it ease up even a little after I get out of bed and of course because I'm not sleeping through the night, naps are necessary and she gives me hell over that. I don't even feel like I can go and have a good cry if I need to when things get to be too much because she's always here and I have no privacy. Ever. I can't cook and clean like I used too and when I try, it's not at a fast enough pace for her. I cannot stand in one place for very long so washing dishes is sometimes a three part job for me and even though I've told her this, she gets agitated and has to say something when I don't finish all of the dishes at once. I'm afraid I am going to "accidentally" choke her out one day lol. She is definitely one of the reasons I am fighting the agoraphobia to see doctors to get some kind of treatment going so that hopefully I can be independent again so that I don't need anyone's help anymore. I just want to be me again. I don't want to be like this. I want to be able to go to the grocery store on my own again, clean my house all at once and cook like I used too. I want to take a steaming hot shower again instead of a luke warm one because the heat hurts my skin. I better stop or I will just keep going on and on. I have no one to talk to about this stuff and I don't try because I feel like friends and family will just think I'm a hypochondriac or something. I'm glad to have found this site. It helps to let go and to see others posting about the same thing so I know I am not alone.

Haha. We do have little Vampires in the game. It is a fun little game. Here's the link for it if you want to check it out. https://www.facebook.com/zombiepetsgame?fref=ts