Frustration with memory and how to cope,,,
 

I have been having horrible memory problems. I forget what I say... I think I am saying one thing but I actually said another... I repeat myself over and over and over again and it gets my brother and family so mad and frustrated at me because its annoying. I have been trying so hard, and have no idea how to go about this situation. I have explained that my memory is not there... but it still aggravates them which just makes me sad and makes me cry because I know its my fault for causing the problem and tension and messing up the plans or what they wanted to do because of what I said or didnt say... anyone have anything?? Its hurting my heart so bad to see me frustrate so many people around me, and it makes me not want to go anywhere or hang out with anyone because I sound like an idiot talking. Help.

Hi Hannah,

I'm really sorry but I don't have any advice :(! I did want to say though that you are not alone, memory problems is a big side effect of RSD. I have it and it is really frustrating and gets me angry!

I'm studying for my big exams now (have one tomorrow, already got 2 down and have 3 more to go). One of the tasks I have to do to pass the exams is remember 16 poems that I may have to write about in an essay. My tutor has already gone through them LOTS of times but even now, I still can't remember them fully, or often get one poem confused with another! Soo frustrating and i'm scared that if I don't remember them, i'll not get a good grade :(!

My teacher thinks i'll do OK ... i've had good marks in my coursework which counts towards my exam so hopefully that should increase the marks.

I've had memory problems since getting RSD. Mentioned them to my doctor several times but he says theres nothing he can think of that could help :(! It's soo frustrating when I forget where i'm going, what days I have school / exams, when i'm meant to be seeing my boyfriend or friends etc. I just want to be normal :(

Really sorry I can't offer much help or advice. Just know you aren't alone and that I and many others know how you feel!

Alison xx

On another thread, you mention that you get high doses of ketamine. Did you have these same memory issues before the ketamine treatments? I remember when I had surgery years ago, the anesthesia screwed up my memory for quite a while. That was before I had RSD.

I did not start having the memory problems until I had RSD for a few years, unless they were related to medication. Topamax, baclofen, neurontin and most pain meds can cause memory problems.

My advice is to look at what your treatment medications are first. You might find your answer there.

Alison,

thank you. I felt so alone yesterday and this is always the place that I turn to and it makes me feel not alone in this world. my doctor said the exact same thing... it just one of the yuck parts that come with RSD. I just dont know how to handle it with the people that are getting so frustrated with me. It makes it hard when i try to explain it, and i repeat myself a thousand times and talk in circles. I used to just brush it all off but now im starting to get frustrated and mad at myself for acting like this and its not even my fault. sigh...

Daylilyfan: Yes it was happening all before my ketamine. I have zero bad side effects to ketamine... i dont get nauseated, i dont get bad dreams, It just makes me sleep like a baby and helps alot with my pain. i am very fortunate. before I had ketamine my mind was lost and now its just getting worse worse the longer that I have rsd.

Dear Hannah...

You described my memory to a T!!!!! If it were left up to me I'd feed the dog multiple times a night... Never stop asking the kids about their homework or find where I leave anything, and can not finish my own sentences... I've kinda given up on the importance of my mindless issue and admit that I have a terrible RSD mind.... Why just the other day, I called our dog a terrible name...and I don't even know where that word came from or why it came out of my mouth....just everyone in the room heard me, so I passed it off and laughed...poor puppy!!

many Hugz to all!!!!!!

kathy

kathy!!!

you too!!! ahhhhha we are all in the mindless catagory. oi ya yoi. i was just in tears crying all day yesterday because I was so frustrated with everything and my mind was making matters way worse. I wanted to just go in the bedroom and leave everyone out so I didnt have to deal with it anymore, but I knew that was the wrong thing to do... so i beared it out... but just broke down after when I got home. thank you so much for making me feel not alone...

Oh Hannah....

you are no way alone.... You on the other hand are very okay..very good ... No way not alone.... I try to keep my mindlessness as Part of my journey with my RSD... And it's okay.. Like RSD is okay, as Its a journey I am meant to travel.... God grant me the patience to control the obstacles I can in my life and God grant me the patience to live my life with the obstacles in my life that I can not control...I understand how frustrating it is but try not to be too hard on yourself...we know why it happens and if any thing....try to laugh it off.... Mister RSD stinks!!!! You have us!!!

Hugz, kathy

Hannah, I have the same problem with my memory. I've noticed it alot lately

Thanks....I so appreciate this post.

i am never sure what to blame my brain f*rts on - the Topamax, Clonodine, ketamine, or RSD. Or Fiorcet, when I take that. Ugh...it's truly awful. and I work, which makes it worse. There are days that I just try not to talk to too many people because I feel so stupid. and I used to be so smart.

Fresh air makes things a little better, or maybe just makes me feel better. When things get too rough for me I head outside for a while for a change of scenery.

Xoxo. Sandy

Short term memory is a real problem
 

When I finally remembered that I couldn't remember the things I forgot, that's when I took action and made some changes so I'd never miss an appointment, loose an address or forget anything else that I knew I'd need down the road. In 2002 I got my first Palm Pilot PDA (personal digital assistant) and have never looked back. Over the years I've constantly upgraded as tech got better and faster - and you know it works!

There are all sorts of wonderful devices we can store dates, people we know, grocery lists and just about everything else you can imagine in. My latest favorite is my Apple IPhone and the new IPad 2 that prove things just keep getting easier to use and with more capabilities than ever. There's always the first 3 to 6 months of learning and adjusting to this new way of keeping our little worlds organized, but I'll tell you it works. Even small simple organizers that cost less than $30 could probably make all the difference though the more capabilities your device has, the more you can enjoy not forgetting.

Short term memory loss is just part of RSD. It's darn hard to live with but there are ways to live with it. I know how much of a difference it's made for me this past 9 years and I'm betting it might help you too. Now go write this down so you don't forget it. I know I will.

The more stress I am feeling, the more I babble, repeat myself, and forget where I'm heading, what I'm doing or what I'm saying. So like my doc is continually telling me, lower my stress level, which translated to my life means say no more often, get the most and best rest I can, and laugh when I see that look on someone's face that says I've heard that before already. But I do appreciate when they tell me that I am forgetting the same thing all the time, so I can focus on remember it.

But laughing at myself is good medicine. Ask you family for some sort of high sign if you are going over old territory or repeating something, so before you get all the way through it for the third time, you know to redirect the conversation.

And Bob is right, if you aren't already a list maker, start now. And we live in the magical world of sticky notes, reminders that can follow us to every room. I've been known to write on my hand a time or two. I have an adress book just for my website passwords and user names. The less I require of my brain the more room I have for the important stuff. If I write things down in an organized way I don't have to fret about remembering
it.

Rest and simplicity,
A new learning curve,
To a less painful day,
pat e

I also feel for me I am very distracted and lack concentration. It is not always my memory is bad. It sometimes is that I will be thinking of my pain,worry,etc that I can't focus on what someone is saying. I would love one day to take a class but can't even imagine being able to focus. I lack patience and my mind is all over but seems to go back to the condition.

Memory
 

I loved my iPhone while I could afford the coverage. Now I have the free Safelink for a cell phone. When my iPhone contract was up, I used it as an iPod. I have MobileMe with Apple, so it would still wirelessly sync with my Mac for my calendar, contacts, podcasts, books on CD, podcasts.

My iPhone battery died, and it was one of the original ones. So could not get a new battery. Had to just throw it out, as they were giving people a new phone with two year contract instead. Could not afford that. I bought an iPad to use because it is hard for me to sit at a computer and type. I am using the iPad now. When I do use the Mac, I use a headset and dictation software called MacSpeech.

Then my Mac died after my battery backup/surge protector went bad and I did not know it. A storm fried it. I could not afford a new One, so I used just the iPad for months, and I really missed the iPhone that I was using as an iPod for podcasts and the calendar and notes. So, when I bought a new Mac, I got an iPod 4 also.

Now I am all "wired". It really helps. They all sync up to each other. All the notes, bookmarks, email, books, podcasts, photos, videos, etc. are the same. Every time I get near my wifi or join a hot spot, it syncs.

I keep my medication list and doctor info on there. Am in the process of scanning my MRI, CAT scans etc. And putting in PDF form to put on to. Also want to add to a thumb drive to add to my service dogs collar.

What really bothers me the most is that I have such trouble learning and concentrating. I used to love to read novels, and to learn new things. Reading is very hard for me mentally as well as physically now. Ebooks are a bit easier physically, all though the iPad gets heavy quickly. The iPod is lighter, but the screen is so small.

I used to love teaching myself about new things. Now I can't seem to learn anything. I signed up for to an online site to learn software like iPhoto. It is not college courses. I have done a lot of their classes five years ago, to learn photo correction in Photoshop, they also have some pretty detailed computer classes. I tried to do a couple easy ones a couple months ago, and really struggled. Very frustrating.

I have had RSD 11 years now. Pain meds have not helped. I do take Topamax and baclofen, and rarely get more than 3-4 hours sleep. I try to give myself a break, thinking that who could think straight in this much pain for this many years, on very little sleep, taking meds that are known to mess with thinking?
:eek::D

So you're hooked too!
 

You too have learned that one computer really doesn't meet all our needs. Instead we're now at a stage in technology where we use different devices for different situations and needs be it smart phones, tablet computers, Web TV, or assorted laptop and desktop varieties.

I too have my IPhone (battery won't hold a charge but I got an external battery for less than $4 that's helping with this problem till the new 5G comes out this fall), multiple notebook computers (various sizes and weights) and just picked up the IPad 2. Thanks to great programs like Evernote and even the Kindle reader (that works with my wife's Kindle e-book reader), it's never been easier to keep our world synced up so can do anything everywhere. Cloud computing just keeps making this better.

When you look at the way WI-FI frees us from cords, now we can do pretty much anything we want anywhere. Watching a TV show I have recorded on my satellite recorder or using Netflix is so handy with the IPad, along with catching up on news thanks to them weighing it at a whopping 1.33 pounds (less if you don't have the 3G connection capability). Notebooks now have all the power even high end desktop computers offer for those who are stupid enough like me to dig way down deep in my wife's wallet - oh and mine.

We've never lived in a greater time, especially for those of us who live in smaller worlds due to disabilities that have sort of forced us into down-sizing. We might not get to run around quite as much as we once did, but there's no reason for us to be disconnected from this amazing world. Enjoying our toys is rather addictive, but one I'd be lost without. It's so nice to read others who are enjoying tech as it too enriches your life. If only Apple didn't make such nice stuff, but as you well know - these guys are right now the real innovators. Bob.