Loss of Normal Brain Function
 

There is a lot of information on the internet about the pain dimension involved with Complex Regional Pain Syndrome. Yet, the information about how CRPS robs patients of their normal cognitive and emotional function seems to be more fragmented. So, I pose this thread. In what areas of cognitive and emotional function are you aware of deficit due to the disease CRPS / RSD. I'll let others of you start the discussion.

-Spike-

Prior to CRPS I could do the NY Times Puzzle in pen without too much difficulty, now it seems too hard. I also could finish Cryptic Crossword puzzles in under 15 minutes, now it takes me longer. Sometimes I feel like my brain went into low power.

Hi Spike,
I always wonder the same thing.
My neurologist told me to expect problems with my emotional state and my RSD attorney also said it. And I have found it to be true. But there doesn't seem to be much on the subject.
I used to be calm under stressful circumstances but not anymore. After CRPS I easily flew off the handle at the littlest of things picking fights over dumb stuff with relatives. But I'm getting better at managing it.
Triggers still play havoc on me and thankfully I have an understanding wife. Some others not so much. It's hard to be in control and pain at the same time.
Like most circumstances in life, acceptance is a big part of the battle.
Be well...

I'm not that bad, but "what was the question?" lol This is a continuing statement that often frustrates others sometimes to the point they give up on getting an answer. Often times I think my answers makes sense to others because in my brain it all runs smoothly, but I often skip important words thinking I've already said them. I have noticed along with my family that when my pain is increased so goes my lack of communication. Concentrating on even reading a book becomes to frustrating as I remember I've just read that line six times when the connection seems to flow freely again.
If someone interrupts what I am saying often times I completely forget what I was talking about and won't be able to recall it for quite a while if at all.
I have a double whammy as my husband has a brain tumor w/seizures & also cognitive problems, so many times things can get pretty interesting or hair pulling. This can be very challenging in dealing with important things that need our full attention. Just going to the grocery store becomes a nightmare, for even with a list we will forget to get key items. Not having someone we can rely on to help just adds to the stress.
The doctors I use to see couldn't blame it on the medications for it's been ages since I've been on any.
I do take ginkgo & other memory herbs but so far can't remember if they work.:winky:

There's two things that go bad.
One thing is that your short term memory loss.
But I can't remember the other one... :thud:

Thank you Russell and AlaskanLady, I needed a laugh today. AlaskanLady could not have put it better. It's the concentration part that I have the hardest time with. I think it may be part of the whole short term memory thing, but I don't know. I can have a thought and two seconds later, I can't remember what it was and it can drive me crazy. If I am reading something, I too find that I have to read a line several times before it makes any sense to me and realize that I have just read it six times.

Here are the areas of cognitive and emotional loss that I have either read about in Medical Research Articles or personally experienced thus far:

1. Planning
2. Organizing
3. Self-Awareness
4. Self-Regulation
5. Initiation of Action
6. Word Recall
7. Lexical Memory
8. Conscious Memory of Events
9. Declarative Memory
10. Attention Deficit
11. Tactile Discrimination
12. Problems with Sleep
13. Depression
14. Irritability
15. Poor Judgement
16. Concentration Problems
17. Agitation
18. Panic Attacks
19. Stuttering
20. Stammering
21. Brain Blanking Out
22. Loss of Words in Brain
23. Inability to get the Thoughts From the Brain out through the Lips (Complete Silence)
24. Repetitive Reading of Printed Words without Retaining Understanding & Meaning

Although, I personally do not suffer from every one of these symptoms, it is no wonder why I suffer so terribly much of the time around the people that I am the closest to and in social settings, when prior to CRPS, I used to be such a people person!

Personally, I suffer in 22 of the areas listed above.


-Spike-

Russell, PurpleFoot721 & AlaskanLady,

How would you define your symptoms in just a few words, so we can add them to the list of my last post?

Well, as for me sometimes I think of something to say to my wife but by the time I wheel myself into the room that she's in I've forgot what I was going to say. Very frustrating.
Another one is that when typing I'll forget how to spell words that are easy to know. Makes me angry and feel dumb.
One last thing. I'm giving my driver/ wife directions and I'll be pointing left and say right. This one drives my wife crazy...
I could go on but I don't want to bore you...
Be safe...

Oh ya, one more thing. I used to play the piano but now I have trouble remembering some stuff. That really makes me crazy...

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)

Okay I'm gonna jump in here and cause a little trouble :D. 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. :rolleyes: 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, :hug:

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.

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.

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...

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! :eek: Wouldn't have thought it would do much but Wow! Not giving that up yet, even with ketamine infusions.

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

Spike,

I noticed when I was first lurking here that there were people who listed lots of drugs, but who were still in pain asking posters about other treatments. I wondered about the ineffectual polypharmacy. Maybe this jumped out at me, because I was treated like an addict and not given much. I mean really, one doctor said he might give me topical lidocaine-" maybe in a few weeks."

Deepak Chopra made a statement that two drugs used in the right combo equal four. Unfortunately, not all PM doctors understand CRPS the way he does.

I don't want to hijack this thread and get off topic, but I think we all need to be aware that polypharmacy may cause us other problems.

Nah, you aren't hijacking anything. Our disease is a very serious one, and so are the medications that doctors prescribe to us to take to help with our pain. Even super star athletes have gotten addicted to pain killers over the years. When I first was diagnosed with CRPS, I told my doctor that I did not want to take anything that would make me addicted to them. She did an excellent job of educating me on the difference between being dependent on a drug and being addicted to it. I learned a lot from her. The patients in the area of the country where I live, lost a great doctor, when she stepped away from her practice, because the paper work for SSI, Disability Insurance, and Medicare started to pill up in recent years. Not all doctors are great ones.

This is an interesting thread. I've found myself in the situation Russell explained, that if I stay right on track with my treatment plan I feel good enough I think I can deviate from it.
My mother in law who very strictly only uses homeopathic remedies and herbs has also had a huge influence on me. I grew up with a mother who developed a neurological disease. Her neck stayed completely distorted. Her chin laid on her left shoulder and her neck on her right. I was very judgemental of the handful of pills she would take daily to survive the pain. Although looking back I admire her because she remained a high school English teacher for over twenty years like that while students made terrible fun of her appearance. So when I began having symptoms of RSD years ago I refused all sorts of treatments. I decided to go the holistic and homeopathic route under my MIL's and Chiropractor's guidance. I did this for a very long time. Unfortunately I received little to no relief. I was so frustrated that I began going to Doctors. They would take one look at my red, discolored, swollen, wrist, then arm, then other arm, then left foot, then right foot (over time of course) they never had a diagnosis, but would just throw prescriptions at me. It was terribly frustrating because I thought it was borderline unethical (perhaps too strong of a word), but for instance because I would sit in my doctor's office at the Mayo clinic with outrageously high blood pressure from pain and pain so bad that would actually make me bleed rectally (yes I know, Too much information but later I found out that absolutely can occur with RSD) he would only treat me with Dilaudid 3x daily. I was so naive to that particular drug I tried it for two weeks and I felt like a zombie, yes I stopped the bleeding and my pain and blood pressure dropped significantly, but I could not function I was so constantly drugged. I should mention that I was prescribed other drugs while there for over 9 months, Tons, literally as in I know over 30 different medications (no I did not take even a third of the prescribed medicines), but I'd like to note that none of them were "pain" relievers except Dilaudid, but after researching Dilaudid, I thought it was insane that they STARTED out with such a strong "pain reliever." Then I just refused all of their treatments and they washed their hands of me. Because this was just the beginning of my RSD journey and I felt 8 Doctors at Mayo should have been able to give me a diagnosis, I just quit going to Doctors for a year and a half. That didn't work out so well for me either. I spent months in bed in horrible pain. Finally I decided to start back trying to get a diagnosis. I don't believe I could even count the Doctors I saw. Finally I was given a diagnosis of RSD and I began doing so much research on it that I became extremely methodical (as Little Paw said) about the way I would take my medicines to note their effectiveness and their side effects. It has been an extremely daunting process. Just when I was thinking something was working it would stop. For the time being I have hit on a combination of medicines that are working, but I realize that could change at any given moment, and like you mentioned Spike, my current Dr. has done an excellent job at teaching the difference between addiction and dependence. As a side note I was having cognitive issues for a year and a half without taking any medications, but as mentioned above severe pain and not sleeping properly can take a huge toll on our cognitive state. I certainly have big time, HUGE, troubles in that area, and my Dr. blames it all on RSD, but it is a valid question raised, could it be from the medicines and the many other factors also? Personally I've stopped all medicines more than once because I didn't think the trade off of such cognitive problems was worth it, then after a short period of time I'm convinced again that I will take these prescriptions because ANY amount of pain relief is worth the side effects. I've found it a very hard place to be.

My doctor took my blood pressure several times last week during a physical, because it is so low, but he was just fine with my heart rate, which is "normal." Well, it isn't, not for me, I have never been able to get my heart rate up, even when I exercised, but on this day I was in terrible pain and my heart rate clearly indicated it.

I don't understand why doctors do not use a computer algorithm to help them better diagnose patients. In my case a computer program would analyze my history, red flagging the elevated heart rate, which would support my pain complaint.

Sometimes I wonder if the medical profession contributes to our stress, because they don't avail themselves of the right tools to help us. I hate it when my husband tells me to call the doctor, because I know it is going to be a waste of my energy.

I agree Biobased. Meds have a HUGE impact on mental (and other) functions. When I was first diagnosed with CRPS over 10 years ago I felt like a guinea pig with all the meds I was on. Lyrica was one of the worst, making me feel "dumb and slow", when my husband pointed out that I was definitely not as intellectually there as usual, couldn't drive, could barely get off the couch, and had gained 30 pounds (husband didn't point the last 3 out), I really reconsidered all the meds.

You have to weigh the costs verses the benefits of all meds. I stopped Lyrica, and yes have some certain types of pain because of it, but it was one of the best medicine decisions I've ever made.

This may be difficult for some to understand, but you have to live with being in some pain if you live with having CRPS. If you are ever complexly pain free for anything more than short periods (unless you've received a special treatment), you are most likely taking too many meds (or you are very lucky!). I would rather live with some pain (sometimes a lot) and still be able to be "mentally with it" and just try and function the best I can. Some days, taking a shower is a victory. Other days I'm doing much better. On really bad days I may make a list that literally only says "take a shower", so after I complete the task, I can cross it off my list and feel as if I've accomplished something that day.

Megsmountain,

I haven't had a pain free day in over a year, even though I am more mobile I struggle with a certain amount of pain, weakness and fatigue. My weight has gone up just from being inactive, it would be horrible if I gained even more weight from medications.

The NSAIDs the doctors insisted I take, not that I took that many or in massive amounts, damaged my stomach, so now I have that distress to deal with.

I know what you mean about taking a shower being a victory-I praise myself for making my bed, crawling in the tub for an Epsom salt soak or getting a load of wash going. After yoga class, basically the only time I have been leaving my house lately, I am too tired to take my clothes off, I pass out and sleep until the next day.