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:D

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.:hug:


__________________________________________________ __________________________________________________ _______________________________
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:D
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:eek: (***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:eek:

__________________________________________________ __________________________________________________ _______________________________

If you made it all the frickin' way down here - thanks for reading :D

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.

Congrats on your progress, healing and journey and thanlk for sharing all that you did. Hope you continue to enjoy it all forever!!!! :-)

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.

Thanks B3! I hope the same for you.:)

That other person didn't have RSD they had a trapped nerve, that's why surgery resolved it.

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

I hear you and good point. Yet the fact is that their symptoms mirrored RSD for many years. Any thoughts as to why?

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

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

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

Point taken, but with all due respect for your extremely positive input here
(it does offer up so much hope) HOW IN THE WORLD did you have time to do all of that? Was the "cure" gradual or did it happen suddenly after doing all those things for a time?

Thanks Di. Those are really good questions.

I didn't do all of these things at once. The regimen constantly evolved. It's the reason I called the outline "Dynamic Adjustment." Since it's a summary off ALL the things I did, I couldn't see a way to quantify what I did when, for how long, and how they overlapped. I could, however, specify what I think was most important now based on hindsight.

I was blessed by the fact that I had hundreds of sick days built up as a result of a 10+ year career at the same company. And a sympathetic boss. And a loving family that let me get as weird as I needed to be.

I will say that I was absolutely 100% obsessed with healing and it consumed the majority of my waking thoughts. It still does.

The most important "cure," ironically, did happen all at once. I woke up at 3:30am one morning to discover that my whole leg was "mine" again. The pain was completely gone and has never returned. Took a picture of it with the flash of my iPhone in the dark. I still had residual symptoms after that, but they were much less intense and resolved over the next 6 months.

I'd be more than happy and honored to go into more detail on any specifics on the Why and When and Where and How versus just the What. Absolutely anything I can do to help.

Just have to say...:D

No one can be 'in remission from death' lol, as no one has been dead and then not been dead! The point is that you had CRPS, but now your symptoms have resolved. My point is just that I believe 'cure' is a strong word. We are all searching for a cure, and your list, while very helpful and interesting, is the kind of list that any one of us with intense CRPS symptoms might try to follow and still not find the results you have...

I'm not saying its not useful - it definitely is - but a cure is a treatment/s for a condition that works on anyone with that condition. I suppose I'm trying to say that there's a lot of desperate folk hoping for a cure....

Wishing us all a cure one day :grouphug:

Bram.

When I was first diagnosed with rsd, I asked my pm dr if it was curable. He said yes. I was so happy to hear this! Then I went home and did some research on rsd to educate myself on it. I found nothing saying that rsd was curable. I only saw that it could go into remission. So I went back to my pm dr and asked why he said rsd was curable when everything I read said the contrary. He said that if someone has rsd and then goes into remission until they die, then it's the same thing as being cured. Needless to say, I don't see this pm dr anymore. I don't believe he was honest with me and I don't trust him because of this. If rsd goes into remission until I die, it does not mean it is cured. It means it went into remission until I died. To me there is a big difference and I just needed to express my point of view on this subject. I do appreciate you trying to help offer your point of view on this thread though vision. I know you're just trying to help. Thanks.

Hola Renee. :)

Point taken - we all have different perspectives and I totally respect that viewpoint.

For me at least, it was very important to make the distinction between remission and full recovery. For me, even the act of thinking about recovery in terms of "remission" rather than being fully cured carried with it a fear of future outcomes. In fact, to help train my subconscious, I carried about all day long with the mantra "I am already healed - act like it" in my head on repeat. Words - spoken and unspoken - are vibrations that have power whether we are aware of it or not.

But yeah - Obviously I'm still working on that awareness part! In particular, the word "cure" has a lot of loaded meaning relative to the context of this forum that I could've been more cognizant of. It would be nice to be able to change the title of this thread to "The Crap I Did to Fully Recover from RSD." Or just "Things I Did to Fully Recover from RSD." But keeping my sense of humor was one of the things that helped me personally, so CRAP it remains:)

Thanks for your input it always makes me think:)

Are you sure about that?:eek:

Anyways Bram you know how much I respect you and all the light you bring to the people here:) A discourse on the nature of life and death isn't my intention.:rolleyes:

Your post is spot on by the way, and I intended to address it in responding to Renee's post above.

Hi again Vision. I like the title of your thread. It made me laugh and a sense of humor is always good to have especially when one has something like rsd to have to live with every day. Thanks for your list of things that helped you. I will have to try some of them. It can't hurt. Take care my friend. From your friend, Renee.

Yes, I am! :winky: And good plan not to go down the discourse route lol...

Bram.

Yeah yeah you know me pretty well by now:D

At least dis-course was an appropriate word....

If all I can really do here is serve as a beacon of positivity and potential I'll accept that:)

You are so inspiring! Thank you so very much for taking the time to detail your therapy protocol. It is very helpful as I have done a lot of the same work, but have had some difficulty figuring out how much time to spend on different modalities and when to try to progress to new things. You've given me some motivation to retry some things in different ways.

You are the 3rd adult I know (of) who has cured themselves from CRPS. One person was bedridden for a year with disabling pain, so it can be done. I have had it for more than 2.5 years following a foot/ankle injury. About a year ago, I was back to sleeping with my left foot dangling uncovered off my bed and using a wheelchair to navigate the grocery store after the trauma of losing my leisure time activities, my job, my career and then my disability income.

I am now to the point where I can exercise standing for 45 minutes (it hurts, but I can deal with it), grocery shop without assistance and go for short walks with resting. I still have a long way to go because I want to go back to something closer to my old life. I still have a lot of areas where I get stuck, particularly with the anger with myself for letting this happen to me and not being able to pull myself out of it. I am still a work in progress...

Anyway, here are some other **programs that I have found most helpful that I have not seen highlighted so much-**

NOI Group: They have published a couple of books that are useful in explaining the brain's rewiring in chronic pain, neuroplasticity and graded motor imagery. ** They also describe mirror therapy as well.


Neuroplastix: Drs. Moskowitz and Golden believe they can cure all chronic pain and eventually taper people off all medications. ** They talk about flooding the brain with other sensations/experiences as it has been overtaken by the pain. They give courses for practitioners (I went this year) that are open to patients, but they don't occur that often. Their workbook of the same title seems overpriced and doesn't have as much practical information as the book I'll mention below. It is pretty new, however, and I suspect it will improve with further revisions. Reasonable purchase if you have unlimited resources.


The Dialectical Behavior Therapy Skills Workbook by McKay, Wood and Brantley. My understanding is that it was initially developed for people with borderline personality disorder, however, the program has many other applications. It is inexpensive and has many exercises/examples of how to cope with and distract from 'overwhelming experiences' (substitute pain here).

Safety of "pain exposure physical therapy" in CRPS Type I, PAIN 152 (2011) 1431–1438. Demonstrates the safety and improvement in pain that people can have with PT, although some people did flare early on. Personally, I did not taper off my meds while increasing my PT (I never stopped my PT after my injury), and would certainly use a good PT to help develop your program.**

Thanks for the thread. There are a few of those I haven't tried and am willing to.

I'm pretty sure this has to be kicked a little at a time starting with getting off the medication because I had it almost kicked once (40 to 60%).

Thanks Firewalker! That name is flat out awesome.:)

Really appreciate you sharing here. Ran into the same lack of linking privileges when I first joined as well. Think some language rules were broken as well. :eek:

Great links and they are still Googleable for anyone drawn to:) I read through the Neuroplastix site but haven't been through the other two yet. Although NOI group and McKay Wood & Brantley both ring a bell and I think I've come across their work before.

Forgive me for generalizing, but to me, the key is retraining the mind. A lot of the crap I listed is exactly that - CRAP - if the mind isn't on board. All of the stuff I did, I did in order to change how I thought.

The mind is what is creating the distortion which causes the pain. It doesn't mean the pain's not real. It doesn't mean "it's all in your head." Not in the way most people take it. But it's Grand Central Station up there above our necks...


"I have had it for more than 2.5 years following a foot/ankle injury. About a year ago, I was back to sleeping with my left foot dangling uncovered off my bed and using a wheelchair to navigate the grocery store after the trauma of losing my leisure time activities, my job, my career and then my disability income.

I am now to the point where I can exercise standing for 45 minutes (it hurts, but I can deal with it), grocery shop without assistance and go for short walks with resting. I still have a long way to go because I want to go back to something closer to my old life. I still have a lot of areas where I get stuck, particularly with the anger with myself for letting this happen to me and not being able to pull myself out of it. I am still a work in progress..."

Wow - it's obvious that you're really making big strides. Especially by your objective self-awareness of where you are within that "work in progress." It feels to me like you're becoming more and more an "observer" of not just the pain, but everything else:)

I totally empathize with the desire to go back to something closer to your old life. That's what I wanted too - I couldn't wait to do all the things I missed most. It was part of what drove me to heal. Now that I am actually better, my "old self" is totally gone. I have no idea who I am anymore. And that's totally cool by me:)

Agree on the PT aspect, especially on the potential for flares. The general consensus on this site, which I totally agree with, is that there is a very fine and highly individualized line between not doing and overdoing. In the early phases of reintroduction of basic movement, the additional bloodflow from anything beyond very mild exercise stimulates not only the healing process but also the flow of free radicals throughout the body. For this reason, I believe that low stress, repetitive, natural movement is crucial - with intensity, ROM, and frequency gradually increasing over time as tolerated.

I incorporated ALL of my initial PT with mirror therapy. Couldn't bear any weight on my leg initially, so I killed two birds with one stone and did all ROM exercises staring at my good leg in a mirror for 10 minutes every hour on the hour. Now that I think about it, there was actually a third dead bird in the form of self massage and desensitivisation (is that a word?) for 5 minutes after that. Same thing - looking in the mirror at my good leg while massaging the RSD one behind it. It was weird and a bit "clunky" at first mirroring the hands simultaneously but it really calmed my mind enough to let me make progress that I could not have otherwise.

Applying the DMSO solution is another good example of "consolidation" - I would massage it into the RSD area for several minutes while simultaneously visualizing healing white light reconnecting all the frayed nerves and bathing it in gentle warmth.

Keep walking your path Firewalker. You can unravel anything with enough of the right frequency:)

Oh yeah! -One thing I might add that isn't talked about as much specifically as a catalyst for healing - is service to others. That's why this place is special. It feels like people are here more to support others than themselves.

No; I wouldn't call it "inviting" either. That was simply the visualization of the healing process that I used intuitively, as a result of the negative connotations I had regarding ice and RSD. You could visualize "black darkness" and "coolness" if that is what you genuinely associate with healing. The focused repetitive intent is what matters.

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:hug: 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...

Question about choice to go off meds
 

[QUOTE=visioniosiv;1075620]

Hey Visioniosiv,

We seem to have a lot in common - namely that my instinct has always been that my body is capable of healing itself more than invasive procedures from docs (of which I've had plenty).

I'm currently at a crossroad - and I'd love a bit of insight based on your experience. I've been on Gabapentin for the last year, and quite frankly I'm not sure if it's doing anything. I got myself into remission last fall, then completely reflared and have been stuck cycling for awhile - so really what are the meds doing?

So now I have a choice. Either get myself off the damn chemicals affecting my brain, or attempt to add cymbalta while I'm currently on the gabapentin - since the combo can supposedly be helpful. I hate the idea of adding more meds, but a part of me thinks its logical to try the combo before completely giving up on medication.

Curious your reason for going off - and if you felt like they were actually stifling your body's own ability to heal.

Thanks!

-jamie

[QUOTE=jamiedavis83;1103433]Hi Jamie,

My overall reason for going off was because of the things I'd read and intuitively agreed with on long term use of narcotics and other drugs being detrimental to chronic pain sufferers. As far as drugs in general - yes - I wanted a clear head to monitor my progress without it being complicated by side effects. This is not to downplay the positive role they CAN play.

My intent for the drugs was to get me to a place where I could use windows of pain-reduced time for positive physical, mental, (and eventually spiritual) rehabilitation practices. I felt I was lucky for the opiates to have such a pain reducing effect, but also knew and directly experienced that it was temporary - I began to require more and more as my tolerance continued to build.

Besides that, I honestly just loved the high I got from opiates and could feel myself yearning for the next dosage. The pain was decreasing between dosages as a result of the healing regimen I was doing, so I gradually weaned off over about 2 weeks. Was not an easy decision to make or follow through on for me but I'm glad I did.

I was also on Gabapentin for just under a month. I never noticed any specific positive effects that I could attribute to it, and was already making significant improvement at that point with mirror therapy, massage, affirmations, and visualization imagery. But I wasn't sleeping at night, at all. I stopped the Gabapentin on a hunch and literally within 24 hours I was sleeping like a baby - no more insomnia. Who woulda thunk it - (apparently drowsiness is the typical side effect.) So that one was a simple decision for me:) Plus I had this weird unsettling vaguely "tight" feeling in my chest that I noticed immediately went away as soon as I went off as well.


As you know it's a very individual decision, and medications have drastically different effects on different people. Very much depends on where you are in your own recovery process. I do think our natural state is not to be dependent on synthesized chemicals; but again, quality of life needs to be taken into consideration also.

I do think this is your key sentence: "I hate the idea of adding more meds, but a part of me thinks its logical to try the combo before completely giving up on medication."

What caused your reflare and what is your overall condition like right now? Are you on anything else besides Gabapentin?

o Conscious abdominal breathing during all physical activity.

Did you mean "normal breating"?

More like the type you learn in meditation or yoga, I believe.

I surely hope you are cured....however, I must say, I have a skeleton in my closet. When I was 14 I had mysterious foot pain, swelling, etc after a surgery. I was studied by 17 drs in multiple hospitals they all concluded that desire my age I had RSD. I struggled well into my 20s. They'd try different treatments and meds.....at 18 I quit everythimg and was ****** cause nothing worked! When I was 23 it stopped....all of the pain and chaos gone. I have no idea why or what made it disappear. As I got older I became confident that I had been misdiagnosed....until this year. I am 38 and was diagnosed with a scaphoid non Union with avascular neurosis as a result of preizers disease. Post surgery the pain was unreal and haunting....here I sit with another RSD diagnosis. I would just be cautious as I don't believe it goes away forever. :(

It IS normal breathing - but most adults are high chest breathers due to various stresses and postural imbalances building on themselves over time - me being no exception to that. I had to consciously work to relearn and retrain what babies and children do naturally.

And yes the breath in yoga definitely starts in the dan tien area.

I hear ya HannaJane and I'm so sorry you're going through it again:( I did read through all your previous posts the other day before responding to you in another thread, so I knew you'd had it as a child, lost it for years, and had it resurface recently.

I'm on my phone and can't type enough to do it justice, but my belief is that from a purely physical standpoint, RSD is an autoimmune condition, so I do take related precautions after any trauma I experience. (Actually they'd be "postcautions" I guess.) I also do a lot of physical/mental/spiritual bodywork and monitoring.

Ugh I'm sure this all sounds pretty hokey. I know I would read this and think that.

Regardless thanks very much for your input! I really hope you find relief again soon. Would love to help you any way I can - maybe we could compare notes as to what may have caused your previous long term remission.

Cure or remission
 

My pain management Dr and I have this conversation when I go in for my Ketamine infusions...he says he has seen Pt's CRPS "burn out" after a few years. I ask him to clarify that meaning...do they get "cured" or do they going into remission. He finally answered with, they go into remission, hopefully permanent.

My physical medicine Dr does Neuroprolotherapy on Wounded Warriors after desensitization physical therapy which includes acupuncture in the ear, paraffin baths, hot sand baths,tactile desensitizing and much more...she put me in this program and after a high dose (500mg) 1 day Ketamine infusion then the PT program, my CRPS is doing really good!! So well I can now wear a shoe!( CRPS in my right foot/ankle) I will also be able to have the prolotherapy done next month( tiny needles injecting D5...5% dextrose around the nerves to my CRPS foot. Dextrose is basically sugar water...nerves, especially damaged nerves love sugar. It is a 4-8 week treatment). She has had great success with the prolotherapy and CRPS in the Wounded Warriors...in fact she has one guy who had CRPS in his foot/leg and after the above therapy, he is now back to running with no issues. She has NO problem saying it is a cure for some people and a remission for others. Each person's case/ disease is different.

Hope is out there...it may be in the military hospitals now, but it will be out there to all some day.

What is out there now, is the power of one's mind to push thru each painful day.

I like your vision!

Terri :)

I did remember reading all your postings about remission and I did get some parts and others where kind of confusing but at the end ,I know remission can be accomplished ,working hard and putting a lot of efforts.
Question , are you getting flares once in a while or nothing at all?
It had been weeks for me already not being able to control my flares and my scs works but is not enough , meditations, light yoga,music, nothing had work and even got a huge headaches ,not migraine ,also painsomnia ,stress is so much part of my life the last weeks and my body finally said no more,how can I get days of relief? Today's was one of my worse days ever ,I never recall a day so bad ,any way you can help me please?
Thanks so much :grouphug: from Jesika .

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.

thank you for your brave and generous post. I pray it helps inspire hope and helps bring healing to everyone who reads and needs it. I can't tell you how much I needed a post like this. thanks again and prayers for wellness for you and everyone here.

First if you did have RSD and are healthy now I am happy for you.
What does kind of confuse me is when I went through your old threads the first one was from around a year ago. The first post you ever made was that you were cured of RSD. Sorry but this strikes me as odd. Usually when a person comes on these boards and their first post is about being cured their is an underlying agenda trying to sell something whether it be a doctor or service.

Yes - I first came on here back in late 2013 with a very misguided intent to help people here. I was completely insensitive particularly within the context of this forum, and my posts were highly inflammatory to several good people - and anything inflammatory is the worst thing for RSD. Kept me up many nights thinking about what I'd done. I went off the board for awhile until I understood myself better and forgave myself for it. The title of this thread is in reference to that. Please read through anything I've ever written here if you still think I'm selling something.

I thought about this some more Daniella because you're right - everyone IS selling something whether they consciously acknowledge it or not. With the help of a certain "seasonal" poster I realized that what I'm trying to sell is an alternative to FEAR. It's the same reason we are all here - to support ourselves and to support each other through our darkest moments of aloneness and doubt and suffering. To know that we are not alone and to remind others of the same.

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!