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 11-04-2015, 03:14 PM #11
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What I have noticed so far:

Easily agitated
Lowered comprehension
Inability to put thoughts to words - although I have always had a difficulty with that
Used to type 65-70 words per minute, now I find myself always looking at the keyboard, I know where the key is but my hands want to go somewhere else, I guess I would say that is procedural memory
Easy discouragement

I am sure I could come up with more but I am having a bit of a blank moment right now, just looking at the curser blink, which is so discouraging. Maybe they will come to me later.
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Old 11-05-2015, 01:48 AM #12
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Quote:
Originally Posted by PurpleFoot721 View Post
What I have noticed so far:

Easily agitated
Lowered comprehension
Inability to put thoughts to words - although I have always had a difficulty with that
Used to type 65-70 words per minute, now I find myself always looking at the keyboard, I know where the key is but my hands want to go somewhere else, I guess I would say that is procedural memory
Easy discouragement

I am sure I could come up with more but I am having a bit of a blank moment right now, just looking at the curser blink, which is so discouraging. Maybe they will come to me later.
Thank you for your Posts Russell and PurpleFoot721.

Here is an updated listing

Loss of Cognitive and Emotional Functions Due to CRPS

1. Planning
2. Organizing
3. Self-Awareness
4. Self-Regulation
5. Initiation of Action
6. Lexical Memory & Word Recall (Loss of Words in Brain, Forgetting how to Spell even Simple Words, Solving Cross Word Puzzles)
7. Conscious Memory of Events
8. Declarative Memory
9. Attention Deficit
10. Tactile Discrimination
11. Problems with Sleep
12. Depression
13. Irritability
14. Poor Judgement
15. Concentration Problems
16. Easily Agitated
17. Panic Attacks
18. Stuttering
19. Stammering
20. Brain Blanking Out
21. Inability to Verbally Express Thought
22. Directional Confusion (Right from Left, North from South)
23. Loss of Theme in Thought
24. Easily Discouraged
25. Lack of Comprehension
26. Loss of Cognitive Fidelity (Hindered in Musical Skills, Being Creative, Speaking Foreign
Languages, Playing Chess, Detailed at Work, Typing on a Keyboard Professionally etc.)

(List Provided by Patient Not a Medical Professional)
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Old 11-05-2015, 02:13 PM #13
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Okay I'm gonna jump in here and cause a little trouble . I hope ya'll don't mind.

I can't argue that CRPS affects cognitive and limbic/emotional function BUT many things can contribute to cognitive symptoms we have. We are affected by medications, lack of restorative sleep, general fatigue and chronic pain in general. I don't want to think all of it is the result of changes to my nervous system.

I know that I myself am sometimes fuzzy and have to think harder than in the past. My mood is affected by my pain, as is my sleep. But to be honest I was a little scatterbrained and forgetful before this. I find I am deeply enriched by still doing the things I used to, even if less effectively and also by trying new things.

I am fighting CRPS brain by taking piano, something I might not have done otherwise. I've had ten lessons now and it is fun. I may have to practice more than the average person, I don't know, but it gets me off thinking about my foot pain. I also go to a once a week Italian class for 8 weeks each semester. Everyone there knows I am still getting treatments for my foot. No one minds when I blank out or miss a day. I go when I can, which is sometimes erratic. Last week I went to the play Seven Wives for Dracula with my son. Since it was at the high school, it was easy parking and seating. It was hilarious, the students did an amazing job and it was only five dollars.

It is so easy to get swallowed by this disease. I am learning that throwing a line out to multiple things helps me stay afloat.

Try new things, keep those hobbies, adjust things as you need to make them work! For painful days I just got some coloring books for grown-ups. We gotta keep those non-pain synapses firing!

Sending gentle hugs,
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Old 11-06-2015, 06:17 AM #14
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Neurotin and lyrica interfere with brain synapses. ( I think in my case neurotin and pain have caused my slower brain-I hope to be off N by next year) https://painkills2.wordpress.com/201...rain-synapses/

All the meds, especially ones taken at higher doses have issues.

Please forgive me for asking this, but why stay on meds if they aren't helping and may be causing other issues? I noticed that some posters here are taking lots of drugs, but are not getting much relief. When I first posted I was upset that many had doctors willing to give so many meds, while my doctors gave me virtually nothing by comparison. And I have also noticed that no one asks why some of the posters take so many meds-including topicals if they aren't helping.

My parents lived to be 87 and 93. Despite having Parkinson's my mother was mentally sharp until the day she died and I believe it was because she took only one drug, supplements and probiotics. My father deteriorated mentally after taking too many meds IMO. When I was taking care of him I was not medically savvy. I accepted that he needed 2 giant pills dispensers and did not know about the negative effects of polypharmacy. Now that I do, I want to avoid becoming a member of the polypharmacy club.

A good workout for the brain is an app called elevate.
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Old 11-06-2015, 08:05 AM #15
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Quote:
Originally Posted by BioBased View Post
Neurotin and lyrica interfere with brain synapses. ( I think in my case neurotin and pain have caused my slower brain-I hope to be off N by next year) https://painkills2.wordpress.com/201...rain-synapses/

All the meds, especially ones taken at higher doses have issues.

Please forgive me for asking this, but why stay on meds if they aren't helping and may be causing other issues? I noticed that some posters here are taking lots of drugs, but are not getting much relief. When I first posted I was upset that many had doctors willing to give so many meds, while my doctors gave me virtually nothing by comparison. And I have also noticed that no one asks why some of the posters take so many meds-including topicals if they aren't helping.

My parents lived to be 87 and 93. Despite having Parkinson's my mother was mentally sharp until the day she died and I believe it was because she took only one drug, supplements and probiotics. My father deteriorated mentally after taking too many meds IMO. When I was taking care of him I was not medically savvy. I accepted that he needed 2 giant pills dispensers and did not know about the negative effects of polypharmacy. Now that I do, I want to avoid becoming a member of the polypharmacy club.

A good workout for the brain is an app called elevate.
I can only speak for my case. If I didn't have my meds, I'd go insane due to the excruciating pain. If I am unable to pick up my meds at the Pharmacy and miss my dosage, I immediately begin to cry out and sob, because it is unbearable. Now, if someone's meds are not working, and people take them anyway...? I can not speak to that, because I truly do not fit into that category.
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Old 11-06-2015, 02:18 PM #16
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Spike,

I am not pointing a finger or trying to be negative. I have done my share of screaming and crying in agonizing pain since this CRPS nightmare so I know what you are saying. In my case I got so little help I can count the drugs on one hand-tramadol did nothing, hydrocodone-helped a bit, but I could not take it at work and I did not like taking it, because it contained acetametaphin (no doctor would write a prescription for the pill without it,) neurotin-helps me with electrical pain and one other drug that I had a reaction to.

My sister was here with me, day after day, during the worst. It scared her, enough for her to discuss me with a therapist. Not only was I in pain, I looked insane and I could not function-I basically slept on an aero bed in our den, dragged myself to the bathroom, watched TV. I couldn't read, write a grocery list, comb my hair or change my own clothing. I screamed in the shower-not often, because I couldn't get upstairs, mostly I wiped myself down with baby wipes.

The deal with pain is you will do most anything to make it stop. What I do not understand is why continue taking meds that aren't stopping or dulling the pain?
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Old 11-06-2015, 06:08 PM #17
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Quote:
Originally Posted by BioBased View Post
Spike,

I am not pointing a finger or trying to be negative. I have done my share of screaming and crying in agonizing pain since this CRPS nightmare so I know what you are saying. In my case I got so little help I can count the drugs on one hand-tramadol did nothing, hydrocodone-helped a bit, but I could not take it at work and I did not like taking it, because it contained acetametaphin (no doctor would write a prescription for the pill without it,) neurotin-helps me with electrical pain and one other drug that I had a reaction to.

My sister was here with me, day after day, during the worst. It scared her, enough for her to discuss me with a therapist. Not only was I in pain, I looked insane and I could not function-I basically slept on an aero bed in our den, dragged myself to the bathroom, watched TV. I couldn't read, write a grocery list, comb my hair or change my own clothing. I screamed in the shower-not often, because I couldn't get upstairs, mostly I wiped myself down with baby wipes.

The deal with pain is you will do most anything to make it stop. What I do not understand is why continue taking meds that aren't stopping or dulling the pain?
Interesting, From what you are seeing posted here, do you think a lot of people are taking medication that is not helping to curb their CRPS pain? I've not been here very long, but I've not seen that too much yet. I know in my case, the medications that worked contrary to my care, we immediately stopped using them.
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Old 11-06-2015, 06:54 PM #18
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I'm gonna jump in here with my two cents.
Meds that work for me are not known until I stop. I elected to stop Cymbalta and my pain level went up. So my neurologist uped the dosage of Gabapentin and that did the trick. As long as I keep with the program it feels as if I don't need them. But if I vary, even slightly, I am quickly reminded that the meds are needed. Unfortunately...
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Old 11-06-2015, 07:22 PM #19
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Good point Russell,

I agree and like to be methodical about trying one thing at a time so I know what is working and what isn't. This also helps sort out side effects and dose changes.

After struggling with dizziness and decreasing dose, my nortriptyline is now so low I wondered if it did anything until I tried not taking it for a week! Wouldn't have thought it would do much but Wow! Not giving that up yet, even with ketamine infusions.
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Old 11-06-2015, 07:51 PM #20
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This site is worth checking out by members who are on one or more prescription meds; http://www.drugs.com/pro/ .

It is searchable for possible med side-effects as well as for possible interactions between different meds.

If you are experiencing what may be a side-effect or an interaction, this is worth discussing with your prescribing doctor
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