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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)

An Apology, and a List of Crap I Did to Cure RSD

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Old 08-26-2016, 01:40 PM   #51
visioniosiv
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numb,

It took around 120 days for the primary 24/7 RSD burn to go away. You know that weird RSD "feel" that's a combo of feeling like the affected body part isn't yours somehow, plus that damn burning? I woke up in the middle of one night and realized that my leg was "mine" again, and the burning had essentially disappeared. Pain reduction was happening gradually before that, but I was still anywhere from a 1 to a 5 on the pain scale to that point. I still remember the recovery of my leg as "mine" again as clear as day.

The primary swelling and inflammation was fairly reduced by then; I'd say about 75% better. Still a lot of redness in the skin though, and it took at least another 6 months for that to clear up. And lots of other "lesser" symptoms like muscle weaknesses, migraines, heart palpitations, gastric reflux, muscle spasms, sweating, etc took 6-12 months to resolve too.

Since then I've stubbed my toe, gashed my skin, and had several deep bruises. Used to get stressed out and immediately apply DMSO, superdose Vitamin C, do visualization techniques, etc. Think about it less and less the more time goes by.

Things like sugar and alcohol and caffeine still set off a weird tingle if I overdo them. Also, and especially --- the act of thinking about it (right now for example) sets off a definite tingle. It is not painful; it's just a vague "nervy" feeling.
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BioBased (08-26-2016)
Old 08-26-2016, 02:20 PM   #52
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Maybe you're just one of those "lucky" people for whom RSD doesn't stick around. The rest of us aren't so lucky.

I have this for going on 21 years now and I am left with a disability because of it. So yes, people, please do take RSD/CRPS seriously.

It doesn't just "vanish" for most of us.

It took me almost 3 years to get diagnosed, and I think the doctors were onto it much sooner than they let on, and also thought it would clear up on its own, which is probably why none of those orthopedic specialists ever uttered a word about it. I mean were they blind?
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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-26-2016, 04:27 PM   #53
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Marleen,

It took an X-ray with patchy osteoporosis for me to be diagnosed and I was just damned lucky that the rheumatologist ordered it. I had a classic presentation of CRPS which none of the 10 or so doctors I saw seemed to notice for a year. NOW going into my 3rd year all the doctors suddenly are talking about the visible signs and the Budapest Criteria, now that most of the color has faded, the ligature mark is gone and the swelling is slight. Why didn't they mention the freakin' BC when I had every single sign?

The other day my right foot was a block of burning ice at my PT eval, so cold on a hot day, that the PT commented about it. I had to BEG her to note it in the report.
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Old 08-26-2016, 04:32 PM   #54
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You have described my journey. I am in the gastric, migraine, muscle spasms portion right now. I am very aware of my CRPS limb. It seems bigger, heavier and "nervy."

Quote:
Originally Posted by visioniosiv View Post
numb,

It took around 120 days for the primary 24/7 RSD burn to go away. You know that weird RSD "feel" that's a combo of feeling like the affected body part isn't yours somehow, plus that damn burning? I woke up in the middle of one night and realized that my leg was "mine" again, and the burning had essentially disappeared. Pain reduction was happening gradually before that, but I was still anywhere from a 1 to a 5 on the pain scale to that point. I still remember the recovery of my leg as "mine" again as clear as day.

The primary swelling and inflammation was fairly reduced by then; I'd say about 75% better. Still a lot of redness in the skin though, and it took at least another 6 months for that to clear up. And lots of other "lesser" symptoms like muscle weaknesses, migraines, heart palpitations, gastric reflux, muscle spasms, sweating, etc took 6-12 months to resolve too.

Since then I've stubbed my toe, gashed my skin, and had several deep bruises. Used to get stressed out and immediately apply DMSO, superdose Vitamin C, do visualization techniques, etc. Think about it less and less the more time goes by.

Things like sugar and alcohol and caffeine still set off a weird tingle if I overdo them. Also, and especially --- the act of thinking about it (right now for example) sets off a definite tingle. It is not painful; it's just a vague "nervy" feeling.
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Old 08-26-2016, 04:47 PM   #55
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Quote:
Originally Posted by BioBased View Post
Marleen,

It took an X-ray with patchy osteoporosis for me to be diagnosed and I was just damned lucky that the rheumatologist ordered it. I had a classic presentation of CRPS which none of the 10 or so doctors I saw seemed to notice for a year. NOW going into my 3rd year all the doctors suddenly are talking about the visible signs and the Budapest Criteria, now that most of the color has faded, the ligature mark is gone and the swelling is slight. Why didn't they mention the freakin' BC when I had every single sign?

The other day my right foot was a block of burning ice at my PT eval, so cold on a hot day, that the PT commented about it. I had to BEG her to note it in the report.
It took a neurologist and my GP/PM doctor to diagnose me. After that a rheumatologist continued my treatment (bisphosphonates for recalcitrant RSD/CRPS). I was going to orthopedic specialists ever since my car accident and apparently those weren't the right doctors to see. Orthopedists are *bad* at noticing this. I know that much by now.
__________________
All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 01-28-2018, 09:15 PM   #56
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Default Recovery from CRPS

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.
If you made it all the frickin' way down here - thanks for reading
I am at this point about 90% recovered which means that I returned to a full life, with certain conditions - of which see at the end of my post.

Long before CRPS I was very careful about what I eat. No junk food, mostly vegetarian, most of what I eat is cooked by me, so I know exactly what goes into my meals. It may have not been a decisive factor for me - but I would not know for sure.

Besides that, I did only the following from the visioniosiv's regiment:

Mental

***Research on central and peripheral nervous systems, human anatomy, fascia/anatomical trains, analogous conditions like fibromyalgia, MS, etc.***
•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.
• ***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.***

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
 ***Prayer***
• For others in my position or worse to be healed
• Meditated
• Watched for clues to subconscious emotional and mental patterns
Sungazing – early morning.
Identify, confront, and dissolve fears.
• Childhood
• Teenager
• Current
 Channelling Higher Self
• Automatic writing

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

I came to a firm conclusion that my CRPS (both hands and forearms affected, started spreading to feet and shoulders) was caused by severe insomnia of 20 years, stress, fears and life-long general anxiety syndrome that I always dismissed as manifestation of "wussiness" (I no longer view it that way - but it is a much longer story to describe). Identifying fears and learning how to handle them was one of the most important steps in my recovery.

Now about conditions to a full life that I mentioned before:

I watch my stress levels and anxiety levels like a hawk. I watch my sleep very carefully. I do not let myself slip into my old stressed out self. Those are conditions that I find to be the key to continue staying CRPS-free. People around me tell me that I look much happier than before, that my face is radiant - and I do feel much happier now than before I got CRPS.

I am writing about my experience and it may turn into a book. I am posting here for people to know that you can beat CRPS and live a normal life.
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BioBased (01-29-2018), visioniosiv (02-01-2018)
Old 02-01-2018, 03:02 PM   #57
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thg957,

It makes my YEAR to hear you've recovered 90%! I know where you are coming from on that last 10% having been there myself - and your current condition of monitoring stress levels like a hawk is completely understandable. I continue to watch myself to this day, just not quite so intensely.

Thank you for your post. I am so grateful you shared your success here.

It sounds like you're still in process of writing, but if you have a blog or anything to share I'd absolutely love to read it!
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Old 12-25-2018, 02:52 PM   #58
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Quote:
Originally Posted by visioniosiv View Post
thg957,

It makes my YEAR to hear you've recovered 90%! I know where you are coming from on that last 10% having been there myself - and your current condition of monitoring stress levels like a hawk is completely understandable. I continue to watch myself to this day, just not quite so intensely.

Thank you for your post. I am so grateful you shared your success here.

It sounds like you're still in process of writing, but if you have a blog or anything to share I'd absolutely love to read it!
visioniosiv, I finished my book. If you are interested, I can send it to you. It is still a rough draft, but I would be happy to share my experiences and get your feedback.
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Old 01-21-2019, 03:46 PM   #59
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visioniosiv, I finished my book. If you are interested, I can send it to you. It is still a rough draft, but I would be happy to share my experiences and get your feedback.
Hi THG - Just saw this. Would LOVE to read it. I'll message you my info. Thanks and Happy 2019!
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