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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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Junior Member
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I freaked after I recited grace at the table.My kids thought I had lost
my mind.I put it together but it missed some parts.They thought this was funny.I just went along with the kidding. Later the tears poored. You know kids if there is a crack to fill they fill it. ![]() siccy |
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#2 | |||
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I can't remember hardly anything when I have problems with RSD. I search for a word that I can't think of. I can't pay attention in school or do tests very well. My teachers are awesome though, and they totally understand when I can't do work.
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#3 | ||
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I think I have developed serious ADD- Word finding difficulties and memory problems
We joke about it but it is really frustrating! Debbie |
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#4 | |||
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My friend gave me a great little notebook for Christmas so that I could remember my days/ life!! It's called Me! A Personal Journal, from the Write It Down series. By www.JournalsUnlimited.com
Another good tool for the memory slippage is by DayTimers Inc. They've just created a calendar pak for Brain Injury recovery that looks so wonderful it made me drool!! I'm sure it would be terrific for people with memory and concentration decline. it has color coded tags and a helper pak too. |
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#5 | |||
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Junior Member
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Yes!
What was I saying LOL I walk into rooms and forget why I went there... I mix words up all the time and say up when I mean down and such. Also, I totally forget what I am saying. CRPS, what a wonderful thing! Rain ![]()
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#6 | |||
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Junior Member
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I honestly didnt know this whole memory thing was in correlation with my rsd!!
this thread may have honestly just saved my life!!!! i can't remember anything for the life of me. Nothing. And its frustrating and often times verrrry embarrasing. When i was younger (elementary/middle school) i had a mind like a steel trap. I never studied for anything because if the teacher mentioned it in notes i would just be able to remember it and could easily recall it on a test. Not so much anymore. I cant remember what the teacher says long enough to write it down in my notebook, let alone what she said two weeks ago! i also cant do math worth a darn. I used to be pretty good, i got all As in my math classes til the second semester of my sophmore year. Funnily enough, i didnt develop RSD till the second semester of my sophmore year. Crazy, eh? I wish i would have known about this being RSD related earlier because i ALWAYS got yelled at by my last math teacher because i honestly couldnt remember what he just talked about. He would show me a problem and i couldnt for the life of me tell him how he did it. Even if he had explained it less than a minute ago. I felt soooooo stupid. I can never remember anything anymore and it drives me crazy. Thankfully i passed the class (with a C-...) and now im done with math until college. yay! I lose chunks of my day too. I cant remember what i did saturday night. At all. I dont know if i went out, i dont know if i stayed in, i dont know where i was. Thats very scary. I find it kinda humorous though, because me being in High school, i know my fair share of partiers. They'll come to school Monday morning and ill hear the typical "Did i see you this weekend, i was soooooo trashed i cant remember where i was or who i was with!!!" And i laugh to myself because i have to say those same things, except i didnt have a drop of alcohol hahahah! I dont need to drink, i have rsd! i stutter a lot now too. my friend (with benefits i guess...) is always teasing because of it. And the fact that i cant ever remeber what we were just talking about. If there is any sort of pause in the conversation i cant recall what we were talking about. And finding the right words... oh wow. This is how i explained a toothbrush to someone yesterday. "its one of those things, you know, with the spikes, for your mouth, in the morning, with the spikes" i generally just get blank stares and a few "do you do a lot of pot?" i honestly thought i was the only person in the world with those problems im kinda happier now!!! anna
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"I learned that life isn't necessarily easy but it is always worth figuring it out. That, if nothing else, has had the most profound effect on me; learning that sometimes your circumstances suck, but life doesn't."
-Andrew McMahon |
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#7 | |||
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In Remembrance
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Hi Anna,
It's good to see that learning that some of your problems may be related to RSD; and you're not the first to wonder what is going on in your brain and whether you might be losing it. But that isn't the end of the story; at least I hope not. RSD will not be incurable forever: at the least, we can expect the future to bring better and longer periods of remission, perhaps a continuing series of treatments to be repeated as necessary so our lives can continue uninterrupted by symptoms. Meanwhile, you don't have to keep having major memory or speech problems. You can't do much against the RSD, but later onset stuttering is often easily overcome. My career in social work began at a rehab hospital that focused on brain injuries (trauma, stroke, etc), where speech, processing and memory were severely impaired, and I had the opportunity to see for myself how speech/inhalation therapy could help patients with moderately severe brain damage overcome stuttering. Your type of stuttering is mild in comparison and most likely easily treatable. You don't need barriers to social interaction compounding the social isolation imposed by physical limitations, and I hope you and your parents will start looking for a speech therapist who will help you solve this problem. The sooner the better: stuttering quickly becomes a habit, and habits are more easily broken sooner rather than later. Occupational therapy can help you find ways to improve your memory. Not many people can tell you what O/Ts do, and so may never consider the possibility that one could help them. I don't know exactly what they do or how they do it, but my patient's cognitive scores increased after seeing them, and that impressed the Hell out of me. I don't care if they dance around half-naked chanting ancient Hindu mantras, whatever they do helped brain injured patients remember things better (they helped in other areas too). You have a future, and that future will be much brighter if you do things now to overcome these two problem areas in your life. I hope you and your parents will look into what can be done today to make tomorrow better...Vic
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The great end of life is not knowldege but action. T. H. Huxley When in doubt, ask: What would Jimmy Buffett do? email: : . |
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#8 | |||
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Member
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Chronic pain and exhaustion is going to make people stutter, lose concentration etc - try getting someone that's just run a marathon to talk to you in a concentrated way - alll they can think of is finding somewhere to collapse - you will often see that they are repating the same things again and again and not taking in what you're saying. They may also mess up words and confuse ideas.
what we live with every day is a marathon and more - I am exhausted before I get out of bed, and so sore I can't think. Mornings for me are not for speaking, I can't get the words out. I am lucky that my mum, carers and some mates can tell my soup dragon communication and understand it. (It is amazing how much you can transmit through "mmm" "meeerr", facial expressions and eyes... Even when my brain has woken communication can still be hard, I miss words from sentences, mangle them together and get myself totally confused, I miss words when I'm re-reading or re-read the same sentence 10 times. Sometimes I just don't talk because I just get it all wrong and it can get really embarrasing... or when the words come out upside down. However, I have a diagnosis of dysphasia which I guess explains it all. For me it is worst in the morning and late at night... I think most of it is related to pain and dystonia. Sleep deprivation can also affect speech and concentration--> if you don't sleep you will have a poorer memory and isues with sleep. Look at new mothers... as they develop the insomnia generally related to babies they lose their ability to remeber information, tell people that they are foggy, confused, and that time just dissapears - like you Anna I find that I miss patches of the day - but I find mine are linked with pain. Interesting though..... Unfortunatly examiners don't give you extra consideration for having no memory! Rxxxxxxxxxxxxx
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It's always darkest just before dawn... but smile and the world smiles with you, cry and you cry alone |
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#9 | |||
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Junior Member
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I've had RSD for 8 years now, but and have definitely noticed some of the impairments you all describe. I do not seem to suffer as much, though - and I wonder whether that's due to the fact that I've been treated for severe ADD since I was 8.
When I don't take my ADD meds, I can't concentrate, hold a thought pattern, engage with people well...anything. I wonder now how much of that is my RSD and how much is my ADD! |
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#10 | |||
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Magnate
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I thought for the longest time that I might have ADD but the Drs. have said no to that one. IT apparently goes with the RSD.
Ada |
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