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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Old 07-01-2013, 09:33 PM #1
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Hi. I am 31 and have had crps for over 20 years. After a flare up a few years ago the crps spread and became worse. I have posted on here before about memory problems but in the last few months i have had some really bad episodes. I was just wondering if anyone else had these issues. Firstly i have the normal brain fog and forgetfulness but it is now at the point where i am worried about leaving the house on my own. A few days ago i came home from the shops when i emptied my handbag i found a few items in there i checked my recipt and they were not on there. I dont remember putting anything in my bag and would never intentionally steal something. Also i have put cups in the food pantry nearly taken something out of the oven without an oven glove. Hubby stopped me just in time. I am now at the point where i have to write everything down that i need to do or i completly forget about it.my main concern is that i often seem to put myself at risk but dont realise it or comprehend the danger. I was just wondering if anyone has had similar problems.
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Old 07-01-2013, 10:24 PM #2
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Hi Katie! So sorry you are dealing with this. I have had RSD for almost 22 1/2 years. I can relate to your cognitive issues 100%. My RSD has spread so much the last couple of years and with that, I noticed the "mind" problems. I am nothing like my former self. Just in the last week I picked up a hot pizza stone that I had just taken out of the oven, didn't even think about putting on an oven mitt. I put something in the toaster oven and forgot all about it, forgot to pay our cell phone bill (could've sworn I already did it). Husband doesn't want me using appliances when he is not home. I struggle with finding simple words to finish a sentence. I also have a hard time comprehending some of the simplest things.

The last day I worked was December 28, 2012. I was a financial & human resource manager. I was known for being so detailed and having a mind like a steel trap. I knew I was in trouble when I started making mistakes at work and forgetting to do time sensitive things.

This is so unlike me, and I have had a hard time with accepting it. While I am sorry that you are dealing with this too, I am glad to know I am not alone.

All the best,
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Old 07-02-2013, 01:00 AM #3
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Hi nanc. Thanks for your reply. I am sorry you are having these issues. But i am glad i am not alone. It is very frustrating i felt i knew and could handle everything crps threw at me but the cognitive issues were a real curveball. I am most scared of losing my independence.my friend suggested placing laminated instructions next to my appliances so i can hopefully avoid injury. The oven tray really scared me . I hope you get some improvment soon
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Old 07-02-2013, 03:20 AM #4
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I’ve had CRPS II for nearly 10 years. I can relate to you both. In the last year or so my short term memory is gone. I get lost in conversations with people. I search for words that I’m trying to say and spend time describing the word I can’t bring to my mouth. I can see in my mind’s eye the thing I’m trying to describe but can’t get the word out. This happens several times a day.

Also, several times a day I get to a room and I’m like “what the hell did I come in here for?” I know everyone has done that at one time or another, but for me it is several times daily. So much so that I get mad and start to talk to myself on my way so I won’t forget what I’m doing. I’ve had this happen while driving too.

I love to cook, or at least I use to. So I have tons of recipes in my head. I can no longer cook and talk to someone at the same time. Inevitably I will forget a step or an ingredient if I do not give this task my undivided attention.

Of all the things that CRPS brings, this really freaks me out. I’m not even sure of anything that can be done to improve on this problem.
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Old 07-02-2013, 04:04 AM #5
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I keep telling myself that it is all the meds I am taking. At least I am hoping so. I've lost simple words from my vocabulary. For instance, the word 'was.' There are others too. Usually 3-4 letter common words. I have to ask for a definition or look one up. Very humiliating.

Before I lost my ability to drive, I would get lost going from my building a few blocks to my husbands. I drove it every day. We carpooled. I didn't necessarily end up in a different place, it was that I didn't recognize the place I was in.

I stay out of the kitchen. I tell my husband it is his turn. I cooked for the first 25 years while the kids were home. June 28 was our 33 year anniversary. He has a way to go to catch up.
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Old 07-02-2013, 06:54 AM #6
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Hi. It is a huge relif to see I am not alone. I don't take medication so it can't be that for me. I have the same problems with speech, I speak very slowly to make sure I have the best chance of getting the words out, but most of the time I use the wrong word or the word I want to say is on the tip of my tounge but comes out in a jumble of sounds. I am seeing my Dr tomorrow and will discuss it with him again
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Old 07-02-2013, 08:36 AM #7
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Quote:
Originally Posted by katiek View Post
Hi. It is a huge relif to see I am not alone. I don't take medication so it can't be that for me. I have the same problems with speech, I speak very slowly to make sure I have the best chance of getting the words out, but most of the time I use the wrong word or the word I want to say is on the tip of my tounge but comes out in a jumble of sounds. I am seeing my Dr tomorrow and will discuss it with him again
I am with you Katie, I am not on any meds to blame this on I also experience that same thing with the word(s) right there on the tip of my tongue and just cannot get it out....frustrating!!

Let us know what your dr says about this!
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Old 07-02-2013, 09:35 AM #8
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I know I have it bad because I was sure I had posted in here 2 days ago but I can find nothing. Yes my brain is well and truely screwed
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Old 07-02-2013, 09:39 AM #9
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Took me ages to find what I'm about to post Kev!

Oh I hate this side of the condition.... I used to be pretty intelligent, but nowadays my brain is definitely leaking away! I posted this is another thread, hope you don't me recycling it

.....

The Date Fiasco - I book something for one day, and write in on the calendar. I then book something else for the same day that will clash. I talk about both things separately and quite confidently in conversation, without connecting the dots. The day comes near, i have that cold 'oh no' and have to let someone down. I come across as forgetful, disorganised and uncaring. Great. Ordinary folk don't forgive that kind of thing easily.

Word Fumbling - conversational hand-flapping combined with lots of "oh what's the word for that?!". I know what I mean, but the word just won't come. I hate it. I prefer typing lol, cos I can stop and think!

Name Shame - same as above, but names you know very well - family, friends, your doctor, that hunky actor from you-know-what, you know the one who was on that film about something with that girl from that thing on BBC2...

Top of the Stairs Confusion - you know, where you walk painfully upstairs for something, get to the top, and can't for the life of you remember what it was you came up for. Grr.

The Hallway Reluctance - going out, I often stand in the hall with my car keys, looking round because I'm convinced I've forgotten something I'm meant to take with me. Sometimes I have forgotten something, often I wasn't meant to take anything anyway. Omg the time I've spent just loitering...in pain...

Sudden Smack Self in Head Syndrome - when you are sat there quite happily watching TV, typing, on the phone etc.....and you suddenly think of something you should have done. Gets me every time. And I don't do rushing about very well now!
.....

Made me smile to write it anyway, that's got to be worth something

Bram
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Old 07-02-2013, 11:06 AM #10
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and words that make your sentence into an idiotic jumble but you have no idea that the word you said or typed wasn't the word you were thinking of
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