Originally Posted by picobill

visioniosiv, I'm with Bram on this and wish no offense to you. I feel you've a wonderful remission and if it helps you to call it a cure I'm good with that but I'd be happier if you'd not call it a cure here. To me the word Cure means it's over, done, finished and life may return to the course you choose not one that's chosen by the condition. I would give anything just for a remission and wish you all the best in yours whatever you call it!

Originally Posted by visioniosiv

Hi Jesika,

No flares for more than a year now. The pain and redness went away in the middle of the night last August. I woke up at 3am and took pictures of my feet. I'll PM pictures to you if you want to see some before and after of some (ugly) RSD free feet

When the pain got to unbearable levels for me, all I did was try to occupy my attention elsewhere in any way I could. But that didn't give me relief-it only got me through to the next day. What did help me when I was laying in bed, and it was just me and the pain, was to go back into my favorite childhood memories and relive them over and over in my mind as vividly as possible - images, feelings, smells, sounds, tastes.... everything. http://neurotalk.psychcentral.com/thread202210.html

At my lowest point, when I resigned myself to the fact that I was alone in this and terrified and faced my own helplessness... I just wanted someone to understand, to comfort me. I broke down and reached out to God for the first time in my life but heard nothing but blankness. I called my mom just to have someone to talk to and she didn't say much at all. No comfort, no "It's going to be OK," or "You'll get through this," no "I'm here for you," not anything like that.

She just listened to me, and told me that what helps her in a personal crisis is to think of others less fortunate than her, put herself in their shoes, and reach out to them and try to help them. I didn't know it then, but it was exactly what I needed to hear. A higher power was listening the whole time; I just wasn't paying attention.

Jesika You are already doing that here and We are all blessed for it. You do not know how many lives you've changed for the better. But you will. Until that moment please know that you've changed mine.

Originally Posted by eevo61

Thanks so much,you made my days so happy,is 324 am still wake but reading the postings and see I'm bless with all your kindness and friendship took my headache away and gave me so much peace and happiness,I don't experience often people telling I did something good,is really emotional but is the a happiest way know you care and you know ,I'm here ,always count with me

Originally Posted by visioniosiv

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

Originally Posted by LISAR624

I pray that you are cured. I know it can go in remission so just make sure if you get signs of RSD make sure you get it diagnosed immediately. 18 yrs ago is when it happened to me and parts of my body has gone in remission but I also have had it spread. Best of luck to you!! LISAR624

Originally Posted by visioniosiv

Hola Imahotep.

Just want to say I find your theory on a possible microbial link to be really intriguing. I am 100% positive that from a purely physical standpoint, we're looking at an autoimmue condition. So it would make sense that there could also be a primary microbial influence in some cases, as a result of an already compromised immune system. The fact that you noted improvement from antibiotics regimens in the past is strong anecdotal evidence of this.

And the vast majority of initial cases are related to specific physical trauma. Spread is a further example of this. These traumas aren't the direct cause; they're just physical "triggers."


For me personally, RSD was triggered by ankle surgery. Going into the surgery at the time I thought I was in great shape, doing all the right things. I know now for a fact that my immune system was already completely shot to h*ll well prior to the surgery.

I hope you are back to 2003 and beyond soon I'm no expert, but do believe that unraveling the ingrained pain "mapping" within the mind is the key for longer term sufferers. After all, you don't have RSD pain when you're dreaming...

Originally Posted by numb

Did you try any nerve blocks prior to your natural healing regiments?

Originally Posted by visioniosiv

I did not. I heavily considered it early on though. From what I read, they can provide temporary relief for some, cause more issues for others, or have a limited effect either way.