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 06-13-2014, 04:07 PM #1
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Lightbulb An Apology, and a List of Crap I Did to Cure RSD

Hey guys ---

I had RSD, and don't anymore. I feel guilty saying it here knowing what everyone goes through every day.

Been here for a while now - since last summer actually (just reading; hadn't registered).

The one thing I've learned is that EVERYONE IS DIFFERENT! (Well duh, right?) But because I miraculously found my way through the hell that is RSD through my own trial and error, forgoing doctors and procedures and therapists and prescription drugs, I figured I had all the answers for everyone else.

So I first want to apologize to everyone I've offended with my past insensitivity. I have been less than tactful in many of my posts here and I'm sincerely sorry for it.

Second, the reason I am here and will stay here is because I have been trying and trying to figure out how best to help.

Well, I realized that I was never alone in my search for a cure, because there is literally an infinite amount of information out there on the internet. I would just comb through site after site after article after article, take notes, and pick and choose the things that I thought would work best for me. I kept an open mind and would not dismiss even the most ridiculous information or claims without testing it myself. So I would test, reflect, modify, hypothesize, test, reflect, modify etc etc etc.

Rather than just continuing to make sniped comments to posts that I think or feel are relevant, I had the thought today - "Why don't you frickin' just put out the summary you already have on most of the things you did, and let the reader pick and choose from the information that's relevant to them!"

SO with that in mind, I've been keeping fairly detailed records, pictures, videos, and notes from before my diagnosis until now. The outline that follows is called "Dynamic Adjustment." It started with a couple of lines and grew slightly since then.

It's a general outline, tracking and sorting all the things I ever did that I feel were beneficial in the search to heal myself. All the stuff I tried that had a limited or negative impact have been removed. (It didn't post legibly when I cut and pasted it into the post, so it took several hours to clean up. And some of the bulletpoints still didn't make it through. I proofread it several times to ensure it was at least "followable" (made up a word there) but there are bound to be mistakes in it.) I also added a bit of commentary for this particular reading audience

It's a current snapshot in time, so while it lists just about everything I've ever done that I think is relevant to my improvement, it doesn't do a very good job of quantifying timeframes (i.e. some of the things I did were very important early on in my diagnosis, and less so after) or how important one item is relative to another.

With that in mind, I've bolded what I think are the most important bulletpoints, and denoted Two Stars (**) for things that are More Important, and Three Stars (***) for the things I think were absolutely instrumental.

I love you all and hope that maybe just one of these will help you in your own journey.


__________________________________________________ __________________________________________________ _______________________________
DYNAMIC ADJUSTMENT


PHYSICAL DIET: Primary focus on non-inflammatory food/drink intake. Alkaline foods.

o ***Eliminated artificial sweeteners (diet drinks etc) and processed food .***
 Processed food is frickin’ tough to take out of a modern diet! I just did as much as I could.
o **Went vegetarian.** (Ugh – this was way frickin’ tougher – steak was my favorite food.)
 organic fruits vegetables legumes and nuts
 organic dairy products
 cage free eggs
 fish/shellfish (not much though - not a big fan of seafood)
 “Whey Cool” protein supplementation 30g 30x daily
o Organic apple cider vinegar – 1 capful mixed with purified water 2x daily.
o Gradually reduced and eliminated all prescription drugs (narcotics, gabapentin).
o Supplementation: Glucosamine /Chondroitin, Vitamin C, Vitamin D, B12. Monitored impact of each individually and varied usage
o **N-Acetyl Cysteine 600mg 3x daily for 60 days.**
o **Berkey System water filter** (with fluoride-free filter).
o Brushed teeth with hydrogen peroxide & baking soda (non-flouride).
o Gargled with hydrogen peroxide daily (did not swallow LOL).
o Switched to non-aluminum deodorant.
o Switched to organic non-chemical shampoo.
o Switched to natural non-chemical laundry detergent.
o Switched to hemp-based soap.
o ***Eliminated tobacco usage*** (was a smoker and/or chewed tobacco for 10+ years)
o **Minimized alcohol.** (1-2 drinks a night every other night nowadays – used to be pretty ridiculous with alcohol in my younger days.)
o **Minimized caffeine.** (completely eliminated for several months once I recognized the immediate inflammatory effects.) Now that I’m better I have since gone back to a small cup of coffee pretty much every morning.
o ***Minimized sugar/all foods readily translated by the body into sugar.*** All carbohydrates from grains, fruits and vegetables.
o Intend to remove mercury fillings (have not done this yet but my research indicates this is very very important)

• PHYSICAL ENVIRONMENT

o Installed indoor fountain for constant water/nature sounds in background.
o Went out in sun as much as was tolerable (late morning and late afternoon best).
o Hugged my family and my dogs all frickin’ day.
o ***Went Barefoot as much as possible.***
 For Proprioception and Grounding
o Gradually changed all footwear to minimalist “barefoot style” shoes. I love Vivobarefoot shoes.
 After going back to work, I now go barefoot behind my desk
o Daily 15 minute bath with soothing music and deep breathing.
o Refrained completely from negative TV/media/internet.  Easier said than done. It’s like not looking at a car wreck on a highway drive-by
o Stopped reading websites and message boards insinuating that a cure is not possible.
o Taught myself to drive with my left foot. Drove to nearby places outdoors with panoramic views in nature.
o Motivational music – constantly played favorite songs that brought me joy.
***Stopped holding back and cried and screamed my face off (away from family).***
o Motivational movies/YouTube videos of people overcoming great odds.
o Sought out writings, personal accounts, and blogs of people who had cured themselves of various diseases/conditions beyond medical expectations. Sought out these people to interact and communicate with, and pieced together their commonalities and incorporated them into my own regimen.

ACTIVITY

o Physical

***Mirror Therapy.*** 5x daily (5-10 minutes self-directed)
***Massage.*** – self directed (10x daily)
• Massage – spouse (as tolerated)
***Applied DMSO 50/50 mixed with vegetable glycerin to affected area 3-5x daily for 90 days***
 Gait retraining – self directed. 15 min daily. Gait Guys (youtube) influence.
***Mild Aerobic Exercise (elliptical) 15-30 minutes @ 130-140 heart rate***
• Also Walking (as tolerated – gradually moved to walking outdoors for longer and longer distances)
 Focused on head posture and spinal alignment during movement.
 Trigger point release in effected limb (need for this went away after conversion to minimalist shoes)
 Fascial released with foam roller – improved thoracic and leg mobility
 Foam ball – constantly rolled barefoot bottom of foot while sitting.
Sex – spouse (as tolerated)
Sex – self directed (***parasympathetic activity***)
o Conscious abdominal breathing during all physical activity.

o Mental

***Research on central and peripheral nervous systems, human anatomy, fascia/anatomical trains, analogous conditions like fibromyalgia, MS, etc.***
***Dutch research on inflammation as primary cause of RSD***
•Jungian philosophy/Myers Briggs. Assessed my own personality strengths and weaknesses which enabled me to be more effective on the followthrough and tracking of my ideas.
**Mantras – Louise Hay “You Can Heal Your Life**
• Louise Hay Positive affirmations that got me through very dark times. They were all I hung on to, even when I didn’t believe them.
***These got me started on an amazing spiritual journey, once I realized the correlation between specific body parts affected by injury/disease, and the types of subconscious emotion associated with these body parts.***
• I no longer use Louise Hay healing mantras, but keep a spiritual mantra that guides me throughout the day.
Isochronic Brainwave Entrainment – Alpha, Theta, Delta, Gamma, Epsilon, & Lambda waves.
• Downloaded isochronic tones to iPhone, and would play healing Solfeggio frequencies as well.
 Got to know all of my cells every morning, from tips of my toes to hairs on my head.
• Would literally say to them, “What’s up guys; I’m here – you’re awesome. Let’s make today another good one. ”
***Record keeping – notes categorized on iPhone & Word docs***

o ***Spiritual***

Sought out commonalities between religious icons/scientists/prophets/mystics: Jesus/Buddha/Mohammed/Krishna/Lao Tsu/Osho/Einstein/Martinus/Hilarion/Truth Contest/Ike Newton/Lahiri/Openhandweb
***Developed a system of understanding spirituality from a scientific approach (the study of Cause and Effect)***
Learned about the nature of duality and Karmic Law.
***Accepted personal responsibility for everything that I experience.***
***Gratitude in all facets of life. ***
• Found things things I was grateful for every night
• Stayed as mindful as possible of everyday blessings as they happen
***Watched for Synchronicities:*** These are universal signs from my higher self guiding me down the right path.
**Numerology**
• Animal totems
• Hidden messages in music
• “Chance” meetings
***Prayer***
• For others in my position or worse to be healed
• For our Creator to guide me in the best possible way to help others
• For others’ RSD pain to be sent to me
• To know our Creator personally
• Meditated on The Lord’s Prayer (google “martinus.dk Lord’s Prayer”)
**Kept a nightly dream log**
• RSD does not exist in the dream state! Lucid dreaming
• Watched for clues to subconscious emotional and mental patterns
Sungazing – early morning. Breathed in sunlight through pineal gland.
***Creation therapy:***
Writing
• Guitar
• Piano

Identify, confront, and dissolve fears.
• Childhood
• Teenager
• Current
 Channelling Higher Self
• Automatic writing

***Meditation.*** Daily - preferably more, preferably morning & evening.
***Spinal breathing/Chakras***
***Kriya Yoga***

***Visualization imagery.*** Created vivid, active scenes with full health and joy and use of effected limb.
o Recreated childhood scenes, or created new ones.
o ***Directed healing white light to the RSD area.***
 -Eyes closed, with all the focus I could muster up, 3x daily.
 -Breathed white light INTO my solar plexus (power center) and then OUT through my hands and into to my RSD leg.
 -After a while I could literally FEEL it working in there! A soft warm liquid pulsing feeling. Could feel nerves untangling……. It was NUTS

__________________________________________________ __________________________________________________ _______________________________

If you made it all the frickin' way down here - thanks for reading
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Old 06-13-2014, 05:41 PM #2
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PS: to put things in context, this time last year I would have discounted the ENTIRE spiritual portion of the outline as complete and utter nonsense.
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Old 06-13-2014, 08:34 PM #3
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Congrats on your progress, healing and journey and thanlk for sharing all that you did. Hope you continue to enjoy it all forever!!!! :-)

Quote:
Originally Posted by visioniosiv View Post
Hey guys ---

I had RSD, and don't anymore. I feel guilty saying it here knowing what everyone goes through every day.

Been here for a while now - since last summer actually (just reading; hadn't registered).

The one thing I've learned is that EVERYONE IS DIFFERENT! (Well duh, right?) But because I miraculously found my way through the hell that is RSD through my own trial and error, forgoing doctors and procedures and therapists and prescription drugs, I figured I had all the answers for everyone else.

So I first want to apologize to everyone I've offended with my past insensitivity. I have been less than tactful in many of my posts here and I'm sincerely sorry for it.

Second, the reason I am here and will stay here is because I have been trying and trying to figure out how best to help.

Well, I realized that I was never alone in my search for a cure, because there is literally an infinite amount of information out there on the internet. I would just comb through site after site after article after article, take notes, and pick and choose the things that I thought would work best for me. I kept an open mind and would not dismiss even the most ridiculous information or claims without testing it myself. So I would test, reflect, modify, hypothesize, test, reflect, modify etc etc etc.

Rather than just continuing to make sniped comments to posts that I think or feel are relevant, I had the thought today - "Why don't you frickin' just put out the summary you already have on most of the things you did, and let the reader pick and choose from the information that's relevant to them!"

SO with that in mind, I've been keeping fairly detailed records, pictures, videos, and notes from before my diagnosis until now. The outline that follows is called "Dynamic Adjustment." It started with a couple of lines and grew slightly since then.

It's a general outline, tracking and sorting all the things I ever did that I feel were beneficial in the search to heal myself. All the stuff I tried that had a limited or negative impact have been removed. (It didn't post legibly when I cut and pasted it into the post, so it took several hours to clean up. And some of the bulletpoints still didn't make it through. I proofread it several times to ensure it was at least "followable" (made up a word there) but there are bound to be mistakes in it.) I also added a bit of commentary for this particular reading audience

It's a current snapshot in time, so while it lists just about everything I've ever done that I think is relevant to my improvement, it doesn't do a very good job of quantifying timeframes (i.e. some of the things I did were very important early on in my diagnosis, and less so after) or how important one item is relative to another.

With that in mind, I've bolded what I think are the most important bulletpoints, and denoted Two Stars (**) for things that are More Important, and Three Stars (***) for the things I think were absolutely instrumental.

I love you all and hope that maybe just one of these will help you in your own journey.


__________________________________________________ __________________________________________________ _______________________________
DYNAMIC ADJUSTMENT


PHYSICAL DIET: Primary focus on non-inflammatory food/drink intake. Alkaline foods.

o ***Eliminated artificial sweeteners (diet drinks etc) and processed food .***
 Processed food is frickin’ tough to take out of a modern diet! I just did as much as I could.
o **Went vegetarian.** (Ugh – this was way frickin’ tougher – steak was my favorite food.)
 organic fruits vegetables legumes and nuts
 organic dairy products
 cage free eggs
 fish/shellfish (not much though - not a big fan of seafood)
 “Whey Cool” protein supplementation 30g 30x daily
o Organic apple cider vinegar – 1 capful mixed with purified water 2x daily.
o Gradually reduced and eliminated all prescription drugs (narcotics, gabapentin).
o Supplementation: Glucosamine /Chondroitin, Vitamin C, Vitamin D, B12. Monitored impact of each individually and varied usage
o **N-Acetyl Cysteine 600mg 3x daily for 60 days.**
o **Berkey System water filter** (with fluoride-free filter).
o Brushed teeth with hydrogen peroxide & baking soda (non-flouride).
o Gargled with hydrogen peroxide daily (did not swallow LOL).
o Switched to non-aluminum deodorant.
o Switched to organic non-chemical shampoo.
o Switched to natural non-chemical laundry detergent.
o Switched to hemp-based soap.
o ***Eliminated tobacco usage*** (was a smoker and/or chewed tobacco for 10+ years)
o **Minimized alcohol.** (1-2 drinks a night every other night nowadays – used to be pretty ridiculous with alcohol in my younger days.)
o **Minimized caffeine.** (completely eliminated for several months once I recognized the immediate inflammatory effects.) Now that I’m better I have since gone back to a small cup of coffee pretty much every morning.
o ***Minimized sugar/all foods readily translated by the body into sugar.*** All carbohydrates from grains, fruits and vegetables.
o Intend to remove mercury fillings (have not done this yet but my research indicates this is very very important)

• PHYSICAL ENVIRONMENT

o Installed indoor fountain for constant water/nature sounds in background.
o Went out in sun as much as was tolerable (late morning and late afternoon best).
o Hugged my family and my dogs all frickin’ day.
o ***Went Barefoot as much as possible.***
 For Proprioception and Grounding
o Gradually changed all footwear to minimalist “barefoot style” shoes. I love Vivobarefoot shoes.
 After going back to work, I now go barefoot behind my desk
o Daily 15 minute bath with soothing music and deep breathing.
o Refrained completely from negative TV/media/internet.  Easier said than done. It’s like not looking at a car wreck on a highway drive-by
o Stopped reading websites and message boards insinuating that a cure is not possible.
o Taught myself to drive with my left foot. Drove to nearby places outdoors with panoramic views in nature.
o Motivational music – constantly played favorite songs that brought me joy.
***Stopped holding back and cried and screamed my face off (away from family).***
o Motivational movies/YouTube videos of people overcoming great odds.
o Sought out writings, personal accounts, and blogs of people who had cured themselves of various diseases/conditions beyond medical expectations. Sought out these people to interact and communicate with, and pieced together their commonalities and incorporated them into my own regimen.

ACTIVITY

o Physical

***Mirror Therapy.*** 5x daily (5-10 minutes self-directed)
***Massage.*** – self directed (10x daily)
• Massage – spouse (as tolerated)
***Applied DMSO 50/50 mixed with vegetable glycerin to affected area 3-5x daily for 90 days***
 Gait retraining – self directed. 15 min daily. Gait Guys (youtube) influence.
***Mild Aerobic Exercise (elliptical) 15-30 minutes @ 130-140 heart rate***
• Also Walking (as tolerated – gradually moved to walking outdoors for longer and longer distances)
 Focused on head posture and spinal alignment during movement.
 Trigger point release in effected limb (need for this went away after conversion to minimalist shoes)
 Fascial released with foam roller – improved thoracic and leg mobility
 Foam ball – constantly rolled barefoot bottom of foot while sitting.
Sex – spouse (as tolerated)
Sex – self directed (***parasympathetic activity***)
o Conscious abdominal breathing during all physical activity.

o Mental

***Research on central and peripheral nervous systems, human anatomy, fascia/anatomical trains, analogous conditions like fibromyalgia, MS, etc.***
***Dutch research on inflammation as primary cause of RSD***
•Jungian philosophy/Myers Briggs. Assessed my own personality strengths and weaknesses which enabled me to be more effective on the followthrough and tracking of my ideas.
**Mantras – Louise Hay “You Can Heal Your Life**
• Louise Hay Positive affirmations that got me through very dark times. They were all I hung on to, even when I didn’t believe them.
***These got me started on an amazing spiritual journey, once I realized the correlation between specific body parts affected by injury/disease, and the types of subconscious emotion associated with these body parts.***
• I no longer use Louise Hay healing mantras, but keep a spiritual mantra that guides me throughout the day.
Isochronic Brainwave Entrainment – Alpha, Theta, Delta, Gamma, Epsilon, & Lambda waves.
• Downloaded isochronic tones to iPhone, and would play healing Solfeggio frequencies as well.
 Got to know all of my cells every morning, from tips of my toes to hairs on my head.
• Would literally say to them, “What’s up guys; I’m here – you’re awesome. Let’s make today another good one. ”
***Record keeping – notes categorized on iPhone & Word docs***

o ***Spiritual***

Sought out commonalities between religious icons/scientists/prophets/mystics: Jesus/Buddha/Mohammed/Krishna/Lao Tsu/Osho/Einstein/Martinus/Hilarion/Truth Contest/Ike Newton/Lahiri/Openhandweb
***Developed a system of understanding spirituality from a scientific approach (the study of Cause and Effect)***
Learned about the nature of duality and Karmic Law.
***Accepted personal responsibility for everything that I experience.***
***Gratitude in all facets of life. ***
• Found things things I was grateful for every night
• Stayed as mindful as possible of everyday blessings as they happen
***Watched for Synchronicities:*** These are universal signs from my higher self guiding me down the right path.
**Numerology**
• Animal totems
• Hidden messages in music
• “Chance” meetings
***Prayer***
• For others in my position or worse to be healed
• For our Creator to guide me in the best possible way to help others
• For others’ RSD pain to be sent to me
• To know our Creator personally
• Meditated on The Lord’s Prayer (google “martinus.dk Lord’s Prayer”)
**Kept a nightly dream log**
• RSD does not exist in the dream state! Lucid dreaming
• Watched for clues to subconscious emotional and mental patterns
Sungazing – early morning. Breathed in sunlight through pineal gland.
***Creation therapy:***
Writing
• Guitar
• Piano

Identify, confront, and dissolve fears.
• Childhood
• Teenager
• Current
 Channelling Higher Self
• Automatic writing

***Meditation.*** Daily - preferably more, preferably morning & evening.
***Spinal breathing/Chakras***
***Kriya Yoga***

***Visualization imagery.*** Created vivid, active scenes with full health and joy and use of effected limb.
o Recreated childhood scenes, or created new ones.
o ***Directed healing white light to the RSD area.***
 -Eyes closed, with all the focus I could muster up, 3x daily.
 -Breathed white light INTO my solar plexus (power center) and then OUT through my hands and into to my RSD leg.
 -After a while I could literally FEEL it working in there! A soft warm liquid pulsing feeling. Could feel nerves untangling……. It was NUTS

__________________________________________________ __________________________________________________ _______________________________

If you made it all the frickin' way down here - thanks for reading
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Old 06-14-2014, 12:34 AM #4
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Interesting.....but your single experience of being "cured" is the unbelievable exception (never heard of anyone beating CRPS), not the rule!

Last edited by Dubious; 06-14-2014 at 12:49 AM.
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Old 06-14-2014, 02:21 AM #5
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Quote:
Originally Posted by Dubious View Post
Interesting.....but your single experience of being "cured" is the unbelievable exception (never heard of anyone beating CRPS), not the rule!
Agree - I haven't found many people who fully recovered from RSD either. On this site, the only ones I could find are a poster called Ness, and another person who had surgery to release an entrapped nerve that spontaneously resolved their pain after years of RSD. I've read a few personal accounts of similar cases like this on the net. Another gentleman had his symptoms suddenly disappear after 20 years, but could not pin down why.

I should probably change the word "cure" in the thread title to "fully recovered from." A cure implies some kind of magic bullet.
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Old 06-14-2014, 02:23 AM #6
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Quote:
Originally Posted by Burnbabyburn View Post
Congrats on your progress, healing and journey and thanlk for sharing all that you did. Hope you continue to enjoy it all forever!!!! :-)
Thanks B3! I hope the same for you.
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Old 06-14-2014, 02:48 AM #7
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That other person didn't have RSD they had a trapped nerve, that's why surgery resolved it.
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Old 06-14-2014, 03:53 AM #8
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Thanks vision. I appreciate what you're trying to do here!

Just as a cautionary note, the word cure is a hard, no nonsense kind of word. What you might have got to is a stage of remission with the disease, where your symptoms have gone, but you retain the potential to have symptoms return with a subsequent injury or illness.

I'm not trying to be a misery here, but this stuff has been documented, and while I admire hugely your positive attitude (that's the best way to beat it!), I just think that this is a more likely state of play. Remission can last for years, and I hope yours sets records!

Wishing you all the best matey, I know you are trying to help the folk here, and I really admire you for it

Bram x
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 06-14-2014, 06:31 AM #9
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Quote:
Originally Posted by Kevscar View Post
That other person didn't have RSD they had a trapped nerve, that's why surgery resolved it.
I hear you and good point. Yet the fact is that their symptoms mirrored RSD for many years. Any thoughts as to why?
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Old 06-14-2014, 06:49 AM #10
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Quote:
Originally Posted by Brambledog View Post
Thanks vision. I appreciate what you're trying to do here!

Just as a cautionary note, the word cure is a hard, no nonsense kind of word. What you might have got to is a stage of remission with the disease, where your symptoms have gone, but you retain the potential to have symptoms return with a subsequent injury or illness.

I'm not trying to be a misery here, but this stuff has been documented, and while I admire hugely your positive attitude (that's the best way to beat it!), I just think that this is a more likely state of play. Remission can last for years, and I hope yours sets records!

Wishing you all the best matey, I know you are trying to help the folk here, and I really admire you for it

Bram x
Agree on the word "cure;" however, anything (not just RSD) has the POTENTIAL to happen at any time.

I could say I was in "remission" from death - does that make me any less alive?
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