[guitarguy]

Hi all, CRPS has taken my life. I feel more hopeless all the time.
Sorry, sometimes there is nobody to talk to and I feel isolated and alone.

My wife I know is going to end up leaving me. She said she can no longer communicate with me as I seem stupid, can't remember anything, don't follow through on things.

CRPS/RSD effects the limbic system which includes cognitive function and memory, especially short term memory. I will forget conversations with people a day later. I know I have had more trouble holding conversations in the last 8 years since this started, have trouble finding words, blank out, and other weird cognitive issues.

She also as a result is no longer attracted to me, no more feelings for me and thinks it will be over soon.

I would have to leave and go live with my parents till something changes or I die. I can no longer live this way. My life is slowly being stolen from me.

I read this is common that people with chronic disease often lose their spouses because they can't deal with the new changed person or falls out of love with the person after changes. Basically, I guess if I had cancer she would also leave me.

I am just getting so sick of people making me feel like I did this or am doing this to myself. I feel like I am to blame and have this huge burden of guilt over me. It is not fair. I never asked for this.

I could never so that to someone. I could never abandon someone I love.

One thing that is odd is that it seems I have stayed in stage one CRPS since 2007, unless certain aspects can advance while others remain the same.

I have an appointment at Penn in February and soon after at Drexel.

Kratom has helped me with pain and it seems at times, concentration and focus but can any strains help for memory I wonder?

This is what I found regarding cognitive function and kratom:
Nootropic (Cognition Enhancing) Effects
Nootropic substances are a relatively new field of interest, yet it shows much promise. Interestingly, due to strain differences, it has been used as a nootropic in several different areas, such as focus and memory.

Unlike traditional medications for focus, kratom doesn’t make your focus “stick” psychologically, rather it dampens psychological background noise, promoting natural focus ability.

Because strain differences can vary, there is typically no set dose for peak cognition boosting effects — though it typically ranges from low/medium to medium.

nootropicStrains
Green Malaysian (Focus)
Thai (Focus/Energy)
Maeng Da (Focus/Energy)

Thanks for listening.

Added this info:

CRPS/RSD is a chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals experience this condition in the United States, alone, in any given year.

CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale.

CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization.

The persistent pain and disability associated with CRPS/RSD require coordinated, interdisciplinary, patient-centered care to achieve pain reduction/cessation and better function.

It has been shown that early diagnosis is generally the key to better outcomes. However diagnosing CRPS/RSD is not a simple matter and many patients search for months or years for a definitive diagnosis.

It is important to know that research has proven that CRPS/RSD is a physical disorder. Unfortunately, it has not been unusual for medical professionals to suggest that people with CRPS/RSD exaggerate their pain for psychological reasons. Trust your body and continue to seek a diagnosis. If it’s CRPS/RSD, the pain is not in your mind!

The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.

CRPS can cause Depression, NOT the other way around.

CRPS causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patient's pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep, which makes the pain worse and so the cycle continues. Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like: what someone told you an hour ago, what you had for lunch yesterday, whether you took your pills this morning, what you were just talking about, etc., are quickly forgotten. You are NOT losing your mind. Loss of short-term memory is part and parcel of CRPS. Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patient's ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues to worsen, weeks and months on end building a sleep deficit you cannot seem to recover from.

Do these symptoms sound familiar to you? Do you also sometimes have an increase in your pain when your stress level is higher? Or the noise level is higher? Do you want to crawl into a hole by yourself and pull it in after you? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain? Do you sometimes have trouble finding a certain word? Do you sometimes completely lose track of what you are saying? If these symptoms sound familiar, know this; you are NOT crazy and you are NOT losing your mind. You are also not alone, not anymore.

FOUR Main Symptoms/Criteria for a diagnosis of CRPS:
Chronic burning pain - includes allodynia; extreme sensitivity to touch, sound, vibration, wind, and temperature.
Inflammation - this can affect the appearance of the skin; bruising, mottling, shiny appearance, blotchy or pale appearance, and tiny red dots are some examples.
Spasms - in blood vessels and muscles of the extremities, called vasoconstriction,
Insomnia/Emotional Disturbance - (including limbic system changes such as short-term memory problems, concentration difficulties, and irritability).

http://www.rsdhope.org/what-is-crps.html

[-Spike-]

Originally Posted by guitarguy

Hi all, CRPS has taken my ilfe. I feel more hopeless all the time.

My wife I know is going to end up leaving me.sme.she said she can no longer communicate with me as I seem stupid, can't remember anything, don't follow through on things.

CRPS/RSD effects the limbic system which includes cognitive function and memory, especially shirt term memory. I will forget conversations with people a day later.

She also as a result is no longer attracted to me, no more feelings for me and thinks it will be over soon.

I would have to leave and go live with my parents till something changes or I die. I can no longer live this way. My life is slowly being stolen from me.

I read this is common that people with chronic disease often lose their spouses because they can't deal with the new changed person or falls out of love with the person after changes. Basically, I guess if I had cancer she would also leave me.

I am just getting so sick of people making me feel like I did this or am doing this to myself. I feel like I am to blame and have this huge burden of guilt over me. It is not fair. I never asked for this.

I could never so that to someone. I could never abandon someone I love.

I have an appointment at Penn in February and soon after at Drexel.

Thanks for listening.

Thanks for posting this. All of us understand. This Monster puts a huge strain on relationships. I ended many of my friendships and close relationships with people, because of CRPS, knowing that I couldn't keep up any longer and knowing what a strain this disease puts on those relationships. I even resigned from the pastoral ministry because of CRPS. Do you have a professional counselor that you might be able to see, while this hardship is upon you-- a psychologist, psychiatrist, a pastor, or social worker? Having someone there to talk to may very well prove to be to your benefit. You are definitely in my prayers, kind Sir.

[zinnia]

Originally Posted by guitarguy

Hi all, CRPS has taken my ilfe. I feel more hopeless all the time.

My wife I know is going to end up leaving me.sme.she said she can no longer communicate with me as I seem stupid, can't remember anything, don't follow through on things.

CRPS/RSD effects the limbic system which includes cognitive function and memory, especially shirt term memory. I will forget conversations with people a day later.

She also as a result is no longer attracted to me, no more feelings for me and thinks it will be over soon.

I would have to leave and go live with my parents till something changes or I die. I can no longer live this way. My life is slowly being stolen from me.

I read this is common that people with chronic disease often lose their spouses because they can't deal with the new changed person or falls out of love with the person after changes. Basically, I guess if I had cancer she would also leave me.

I am just getting so sick of people making me feel like I did this or am doing this to myself. I feel like I am to blame and have this huge burden of guilt over me. It is not fair. I never asked for this.

I could never so that to someone. I could never abandon someone I love.

One thing that is odd is that it seems I have stayed in stage one CRPS since 2007, unless certain aspects can advance while others remain the same.

I have an appointment at Penn in February and soon after at Drexel.

Thanks for listening.

Thank you for sharing with us guitarguy. I do understand. I am glad that you reached out. You are not alone, we are here for you.

My adult children do not understand, I don't know of they are in denial, or just wrapped up in their own lives. My husband did go and read about CRPS, it has helped that he has some understanding. I have recently cut the morning dose of gabapentin in half, as the level of my pain is lower in the morning. It is helping me to have a clearer mind in the morning.

When I get really frustrated in my progress, I remind myself that I have made it from the bed, to the wheelchair, to the walker, to the cane, and am walking on my own. I have CRPS in my left foot. I try to walk a little farther each day. Sometimes it helps me to remember how far I have come.

One of the blessings in disguise I am finding is I am learning how to be calmer, be still, which helps with the level of the pain. There will always be stress, I can choose how I respond.

I will keep you and your wife in my thoughts and prayers.

zinnia

[guitarguy]

Thanks all,

I do see a psychologist - for about 2 years now.

I added some info to the first post for those who may not be as familiar with CRPS and that my wife and I had a good conversation tonight that was productive and she seems to be more understanding now.
It also helped for her to remember my poor test results on cognitive function, memory and nerve conduction that the doctors attribute to CRPS, not something I am doing purposefully or through laziness.

[Fiery1]

This beast is awful to fight....people really do not understand. Even physicians, who made me worse by three unnecessary leg surgeries.....despite the IL law legislated in 1987 or so, for Physicians to be made aware of CPRS/RSD..... I believe because there is no standard effective treatment nor cure, there's no monies in it, so they don't bother. I should have been diagnosed in childhood, was wrongly diagnosed most of my life and now diagnosed and it's full blown, too late. So, if our professional providers do not get it, how can our friends and family. I too, am a professional, hanging on by a thread of alternating disbelief and agony. I too have set aside people who disbelieve despite the physical evidence. Oh they of little faith. WE...must group together to hold each other up. This rough stuff can be paralyzingly frightening. I just joined. Thanks for being here. I hope I can be of help. Mercy on us all. Anyone from Illinois here?

[guitarguy]

I almost passed out today in a museum with my family.
Feels like molten lava flowing through my left arm.

I took 3x my dose of nucynts and 12 grams of kratom and I am thinking of going to the hospital. Maybe they can give me a shot for pain.

[Neurochic]

Originally Posted by guitarguy

I almost passed out today in a museum with my family.
Feels like molten lava flowing through my left arm.

I took 3x my dose of nucynts and 12 grams of kratom and I am thinking of going to the hospital. Maybe they can give me a shot for pain.

I'd just caution you that in the US chronic pain patients who present at ER facilities looking for help tend to rapidly be branded as drug seekers and this can make your life afterwards even more difficult. I'm not saying don't go, just that they may not treat you very sympathetically and it may work against you in future.

[tammy jo]

Originally Posted by Fiery1

This beast is awful to fight....people really do not understand. Even physicians, who made me worse by three unnecessary leg surgeries.....despite the IL law legislated in 1987 or so, for Physicians to be made aware of CPRS/RSD..... I believe because there is no standard effective treatment nor cure, there's no monies in it, so they don't bother. I should have been diagnosed in childhood, was wrongly diagnosed most of my life and now diagnosed and it's full blown, too late. So, if our professional providers do not get it, how can our friends and family. I too, am a professional, hanging on by a thread of alternating disbelief and agony. I too have set aside people who disbelieve despite the physical evidence. Oh they of little faith. WE...must group together to hold each other up. This rough stuff can be paralyzingly frightening. I just joined. Thanks for being here. I hope I can be of help. Mercy on us all. Anyone from Illinois here?

(((( I am from central illinois. I also have CRPS. I don't know anyone else with it in my community I could sure use a support group ))))

[Always_Believe]

Originally Posted by Neurochic

I'd just caution you that in the US chronic pain patients who present at ER facilities looking for help tend to rapidly be branded as drug seekers and this can make your life afterwards even more difficult. I'm not saying don't go, just that they may not treat you very sympathetically and it may work against you in future.

My PCP told me the other day that perhaps I need to go to the ER. Not going to happen. As a nurse, I know how chronic pain patients are treated.

[scubaforsythe]

Wow, it's like you crawled into my world and I'm sorry! It's an awful beast to deal with and all I can think of is (((hug))),

Sending love and prayers

Sent from my SM-N920V using Tapatalk