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 01-03-2013, 10:26 AM #11
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Please check out MarksDailyApple.com

It made my journey so much easier and completely changed my concept about what's healthy to eat and what's not.
on my way there now thank you!
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Old 01-04-2013, 12:39 AM #12
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My RSD caused gastroparesis, which makes me vomit daily. Lack of circulation from rsd causes stomach to not contract like it should to digest food. May be worth looking into. Kind of common w rsd'ers. Hope u figure it out n feel better!!
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Old 01-04-2013, 09:22 AM #13
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My RSD caused gastroparesis, which makes me vomit daily. Lack of circulation from rsd causes stomach to not contract like it should to digest food. May be worth looking into. Kind of common w rsd'ers. Hope u figure it out n feel better!!
Thank you for this! Yikes, daily vomiting... ug! I am so sorry to hear that for both you and Becky (post above), and I hope that it doesn't come to that. Do you find that your rsd symptoms flare just before the act of being ill? That was the most crazy thing ever. The rsd got bad, then real bad, then I got sick and everything calmed way down... it was wild. and hours before it really did feel like my digestive system just stopped. My body almost feels pregnant, which I assure you I am not, but i've had the same kind of digestive issues. Thanks again and hope you're feeling better soon!
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Old 01-06-2013, 10:29 PM #14
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Thank you for this! Yikes, daily vomiting... ug! I am so sorry to hear that for both you and Becky (post above), and I hope that it doesn't come to that. Do you find that your rsd symptoms flare just before the act of being ill? That was the most crazy thing ever. The rsd got bad, then real bad, then I got sick and everything calmed way down... it was wild. and hours before it really did feel like my digestive system just stopped. My body almost feels pregnant, which I assure you I am not, but i've had the same kind of digestive issues. Thanks again and hope you're feeling better soon!
Vrae,

Iam with you...I have been having digestive issues for quite sometime. Almost three years now. I have had all the scans up to last friday I had my second endoscope.I feel my foox stick in my throat and chest too. With my major complaint of burning in my throat and tummy. All scans endoscopes have been normal and all antacids have not helped. Which makes sense with internal RSD it is nerve pain not acid typical pain.I have not vomitted. Yet due to thiz trouble but very close at times. Gastroproesis is very common for us RSDERS... just no answers on yummy issues..its awful painful as the rszt of our RSD affected areas. Im sorry I couldnt help you...take care Kathy..
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Old 01-07-2013, 08:32 AM #15
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Vrae -

So sorry, as I was stumbling to bed at an unholy hour, I decided on impulse to check NT and see there are a couple of threads going for which I've been remiss in not responding earlier. Yours is own of them

I'm aware of one new paper suggesting a direct link between gut-bacteria and CRPS, Establishing a Relationship between Bacteria in the Human Gut and Complex Regional Pain Syndrome, Reichenberger ER, Alexander GM, Perreault MJ, Russell JA, Schwartzman RJ, Hershberg U, Rosen G., Brain Behav Immun. 2012 Dec 18 [Epub ahead of print]:
Abstract

Complex Regional Pain Syndrome (CRPS) is a serious and painful condition involving the peripheral and central nervous systems. Full comprehension of the disorder's pathophysiology remains incomplete, but research implicates the immune system as a contributor to chronic pain. Because of the impact gastrointestinal bacteria have in the development and behavior of the immune system, this study compares the GI microbial communities of 16 participants with CRPS (5 of whom have intestinal discomforts) and 16 healthy controls using 454 sequencing technology. CRPS subjects were found to have significantly less diversity than their healthy counterparts. Statistical analysis of the phylogenetic classifications revealed significantly increased levels of Proteobacteria and decreased levels of Firmicutes in CRPS subjects. Clustering analysis showed significant separation between healthy controls and CRPS subjects. These results support the hypothesis that the GI microbial communities of CRPS participants differ from those of their healthy counterparts. These variations may hold the key to understanding how CRPS develops and provide information that could yield a potential treatment.
.
PMID: 23261776 [PubMed - as supplied by publisher]
That said, I'm intimately aware if a small pilot study that was done a few year ago at USC (wherein I was a study participant) that strongly supported a hypothesis that chronic opioid use plays havoc with gut fauna, revealed both through the spectroscopy of little Mylar balloons I inflated every 15 minutes over for hours, but also in the fact that patients - included myself - got remarkably better alter an unusually intense course of the anti-biotic Xifaxin, subject to relapsing, in my case, roughly a year later, whereupon I get another (and fairly expensive) round of Xifaxin. (Sadly, without matching industry money, the researchers were unable to secure NIH funding for the larger study they sought, and the work died on the vine.)

Which bring me back to the above-referenced study by Reichenberger et al. A friend was kind enough to send a copy of the full article to me, and I was dismayed to see that no effort was made on the part of the authors to control for opioid use among the CRPS study patients. Accordingly, I would be inclined to discount any sweeping statements arising from their study. That said, I've found that my prescribed extended course of Xifaxin (200 mg) [2 tablets 3/day for 10 days] worked remarkably well. And I would urge you to consider it, if and only if you have in fact been using opioids on an extended basis: and if need be , I'm know that one if not both of the principle researchers who ran the study I participated om are still at USC and would be happy to discuss this with your physician.

That said, there's a litany of information on gastroparesis and autonomic dysfunction, on account of which I pulled up 177 abstracts just running those terms on PubMed. See, e.g., The enteric nervous system and neurogastroenterology, Furness JB, Nat Rev Gastroenterol Hepatol, 2012 Mar 6;9(5):286-94:
[
Abstract

Neurogastroenterology is defined as neurology of the gastrointestinal tract, liver, gallbladder and pancreas and encompasses control of digestion through the enteric nervous system (ENS), the central nervous system (CNS) and integrative centers in sympathetic ganglia. This Review provides a broad overview of the field of neurogastroenterology, with a focus on the roles of the ENS in the control of the musculature of the gastrointestinal tract and transmucosal fluid movement. Digestion is controlled through the integration of multiple signals from the ENS and CNS; neural signals also pass between distinct gut regions to coordinate digestive activity. Moreover, neural and endocrine control of digestion is closely coordinated. Interestingly, the extent to which the ENS or CNS controls digestion differs considerably along the digestive tract. The importance of the ENS is emphasized by the life-threatening effects of certain ENS neuropathies, including Hirschsprung disease and Chagas disease. Other ENS disorders, such as esophageal achalasia and gastroparesis, cause varying degrees of dysfunction. The neurons in enteric reflex pathways use a wide range of chemical messengers that signal through an even wider range of receptors. These receptors provide many actual and potential targets for modifying digestive function.

PMID: 22392290 [PubMed - indexed for MEDLINE]

All of which is to say, it appears to be something of a general consensus among folks who have successfully used tDCS as a maintenance for any length of time has been in the remission of those symptoms most associated with sympathetic dysrythmia - at least when the signal is applied to the dominant motor cortex, rather than pain relief per se. (Although I've also heard of phenomenal relief from fixed dystonia.) And this is, of course, in addition to cognitive improvements that may had through the separate stimulation of the "dorsolateral prerfrontal cortex" . . .

Accordingly, in the untoward event that uncontrolled vomiting becomes more than a passing fancy, I can easily put you in touch with Dr. James E. Fugedy, a pain specialist initially trained in psychiatry nut is now perhaps the leading figure in the clinical use of tDSC. (You fly out on a Thursday, spend much of a Friday with him, and fly home that night or the next morning and thereafter maintain contact with him through phone and email, kinking your own treating physicians into you hopefully coordinated care along the way.) I mention this only for what it's worth, hopefully without "too much" of in way of hucksterism on my part.

Hope you're feeling better soon,

Mike
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Old 01-07-2013, 12:47 PM #16
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Part of my diet change was to stop drinking milk, and to start eating full fat high quality Greek yogurt.

Not to be gross, but here it goes: I used to have to use a tongue scrapper as part of my oral hygiene care. It happens rarely now that I get that white coating, and when I do I know I need to have a yogurt. Just letting a spoonful sit in my mouth for a minute dissolves it.

I do recognize that I have often stumbled upon what works for me by either trial and error, just getting lucky, or following tips from online sources like NT. Probably not the best approach always... My ways are imminently less scientific than some others.
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Old 01-09-2013, 12:29 AM #17
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Wow, so just when I think I have a grasp on my symptoms, I do not.

[a little history to get to my point] RSD started in right lower limb after discectomy L5 S1 (2004), eventually it moved to the left limb, followed by moving into my arms, hands and everywhere else you can think of. I also have felt signs of internal involvement as the lightning strikes inside places in my torso randomly too. So I know it’s everywhere.

For many months now I have been dealing with tummy issues. I have felt like I have had an issue with my gallbladder. Even had an ultrasound of my intestines / gallbladder and they tell me the gallbladder and all looks fine. But I continue to have bad indigestion, and lots of burping (sexy huh?), etc. So I have been taking antacids as needed and trying to eat well.

Now to my point. The strangest thing happened the other night. My tummy was not right, and I had eaten some soup and crackers. I felt like my digestive system had stopped after I ate and all the food was just sitting at my throat. I laid down. My RSD started a rampage. I began tremors like I wasn’t even on meds. My clothes were uncomfortable, my everything was uncomfortable. I was exhausted. My ears ringing so loud and yet I was trying to just sleep, when then I’m like “oh crap, I’m going to puke”, and so I did. The minute I was finished with this gross and violent act, it was amazing, ALL my rsd symptoms calmed WAY down. It’s like the nervous system KNEW I needed to get rid of whatever was inside me, and the closer it got to doing just that, the more severe my RSD was. This doesn’t sound like much, but I assure you it was the WILDEST (and most painful) thing ever.

The next morning and throughout the day I had bouts of diarrhea, extreme fatigue, but no more vomiting (thank God). For a moment I thought, maybe it was food poisoning or some sort of virus, but now I’m back to indigestion issues, and I am convinced one has something to do with the other.

My rsd has been seriously progressing for months now. All the joints on my right side (shoulder, hip, knee, ankle) are (what I feel) being attacked by rsd. My pain levels are increasing and it’s trying to immobilize me, and some days it succeeds.

So I am thinking maybe the rsd is causing this indigestion problem? Is it causing problems with my digestive system that I just can’t see?

On another note, in recent weeks, I have had a spot… one spot, about the size of a hand, in the lower left side shoulder blade that is like a “spot” of rsd that tingles, and gets numb, and worsens with rsd flares.

I know, without a doubt that I have full body rsd with some internal involvement; with the worst of my symptoms from the waist down.

The only med I take daily, like clockwork, is gabapentin. I take other drugs PRN.

Thoughts? Suggestions?? Thanks in advance!
Hi Vrae, I understand what you are saying about RSD and internal digestive problems. If you research RSD, you will discover that it is an autonomic condition. Research autonomic condition, sympathetic nervous system, parasympathetic nervous syste, vegas nerve. and you will find it is a disregulation of these areas. Then it makes sense that it affects our digestive systems, internal organs, etc.I have found that just looking up these names on the internet, like mayo clinic. wikipedia etc. if gives us a clearer view of what this disorder is all about. If you look up RSDRX.com and go under puzzles, it is from a Dr. retired now in Florida, that explains a lot of internal involvement. etc. Also RSDA.com is a national organization that is helpful. if you put in your zip code, they will give you closes local support group you can attend. This is a neurological condition caused by surgery, injury, etc. that is very difficult for people, including drs. to understand. But definitely, it can and does effect internal organs.
I hope you find comfort and educational information from the may friends here on this site. loretta
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Old 01-09-2013, 12:38 AM #18
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Originally Posted by Vrae View Post
Wow, so just when I think I have a grasp on my symptoms, I do not.

[a little history to get to my point] RSD started in right lower limb after discectomy L5 S1 (2004), eventually it moved to the left limb, followed by moving into my arms, hands and everywhere else you can think of. I also have felt signs of internal involvement as the lightning strikes inside places in my torso randomly too. So I know it’s everywhere.

For many months now I have been dealing with tummy issues. I have felt like I have had an issue with my gallbladder. Even had an ultrasound of my intestines / gallbladder and they tell me the gallbladder and all looks fine. But I continue to have bad indigestion, and lots of burping (sexy huh?), etc. So I have been taking antacids as needed and trying to eat well.

Now to my point. The strangest thing happened the other night. My tummy was not right, and I had eaten some soup and crackers. I felt like my digestive system had stopped after I ate and all the food was just sitting at my throat. I laid down. My RSD started a rampage. I began tremors like I wasn’t even on meds. My clothes were uncomfortable, my everything was uncomfortable. I was exhausted. My ears ringing so loud and yet I was trying to just sleep, when then I’m like “oh crap, I’m going to puke”, and so I did. The minute I was finished with this gross and violent act, it was amazing, ALL my rsd symptoms calmed WAY down. It’s like the nervous system KNEW I needed to get rid of whatever was inside me, and the closer it got to doing just that, the more severe my RSD was. This doesn’t sound like much, but I assure you it was the WILDEST (and most painful) thing ever.

The next morning and throughout the day I had bouts of diarrhea, extreme fatigue, but no more vomiting (thank God). For a moment I thought, maybe it was food poisoning or some sort of virus, but now I’m back to indigestion issues, and I am convinced one has something to do with the other.

My rsd has been seriously progressing for months now. All the joints on my right side (shoulder, hip, knee, ankle) are (what I feel) being attacked by rsd. My pain levels are increasing and it’s trying to immobilize me, and some days it succeeds.

So I am thinking maybe the rsd is causing this indigestion problem? Is it causing problems with my digestive system that I just can’t see?

On another note, in recent weeks, I have had a spot… one spot, about the size of a hand, in the lower left side shoulder blade that is like a “spot” of rsd that tingles, and gets numb, and worsens with rsd flares.

I know, without a doubt that I have full body rsd with some internal involvement; with the worst of my symptoms from the waist down.

The only med I take daily, like clockwork, is gabapentin. I take other drugs PRN.

Thoughts? Suggestions?? Thanks in advance!
Just an additional thought, if you look up sympathetic nervous system, para sympathetic nervous system, vegas nerve, rsd is a disregulation of these systems. this INCLUDES in digestive system. This explains the digestive problems and internal problems we face. Mayo clinic, wikipedia, etc are good sources to research these parts of our body. Hope this helps, loretta,
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Old 01-10-2013, 11:19 PM #19
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Quote:
Originally Posted by Vrae View Post
Wow, so just when I think I have a grasp on my symptoms, I do not.

[a little history to get to my point] RSD started in right lower limb after discectomy L5 S1 (2004), eventually it moved to the left limb, followed by moving into my arms, hands and everywhere else you can think of. I also have felt signs of internal involvement as the lightning strikes inside places in my torso randomly too. So I know it’s everywhere.

For many months now I have been dealing with tummy issues. I have felt like I have had an issue with my gallbladder. Even had an ultrasound of my intestines / gallbladder and they tell me the gallbladder and all looks fine. But I continue to have bad indigestion, and lots of burping (sexy huh?), etc. So I have been taking antacids as needed and trying to eat well.

Now to my point. The strangest thing happened the other night. My tummy was not right, and I had eaten some soup and crackers. I felt like my digestive system had stopped after I ate and all the food was just sitting at my throat. I laid down. My RSD started a rampage. I began tremors like I wasn’t even on meds. My clothes were uncomfortable, my everything was uncomfortable. I was exhausted. My ears ringing so loud and yet I was trying to just sleep, when then I’m like “oh crap, I’m going to puke”, and so I did. The minute I was finished with this gross and violent act, it was amazing, ALL my rsd symptoms calmed WAY down. It’s like the nervous system KNEW I needed to get rid of whatever was inside me, and the closer it got to doing just that, the more severe my RSD was. This doesn’t sound like much, but I assure you it was the WILDEST (and most painful) thing ever.

The next morning and throughout the day I had bouts of diarrhea, extreme fatigue, but no more vomiting (thank God). For a moment I thought, maybe it was food poisoning or some sort of virus, but now I’m back to indigestion issues, and I am convinced one has something to do with the other.

My rsd has been seriously progressing for months now. All the joints on my right side (shoulder, hip, knee, ankle) are (what I feel) being attacked by rsd. My pain levels are increasing and it’s trying to immobilize me, and some days it succeeds.

So I am thinking maybe the rsd is causing this indigestion problem? Is it causing problems with my digestive system that I just can’t see?

On another note, in recent weeks, I have had a spot… one spot, about the size of a hand, in the lower left side shoulder blade that is like a “spot” of rsd that tingles, and gets numb, and worsens with rsd flares.

I know, without a doubt that I have full body rsd with some internal involvement; with the worst of my symptoms from the waist down.

The only med I take daily, like clockwork, is gabapentin. I take other drugs PRN.

Thoughts? Suggestions?? Thanks in advance!


Hi VRAE, frustrating to hear your stomach is adding trouble to your RSD, it's not uncommon for your nerves to be hypersensitive from all the activity going on in your body. How is your stress level dealing with RSD, our stomach seems to receive a ton of stimulation whether we are conscious or not of our "coping with the pain". My friend who had MS, every time she would go to the ER, the ER doctor would assume it was "gallbladder" problems which it was not. A different female was battling stomach problems, "It's got to be the gallbladder" doctor and ER doctor thought until they found something totally different. In our overly communicated world, our stomach is under siege by all the stress and all the toxins in our environment. The gallbladder is the first part the doctors look at, even if your pointing at your belly button, why, I have no clue. Did you have a HIDA scan used to check the refraction rate of your gallbladder, another test served with the abdominal ultra-sounds test.

Some ancient stomach calming (My great-great grandma ideas) work like eating oatmeal for breakfast with good yogurt (little sugars asap), organic apple-cider vinegar to "balance your stomach pH level" daily, it's good for heartburn too. Can you change your cooking style to use extra-virgin olive oil, it's better on the liver and helps the gallbladder according to great-great granny and modern research as well. Great-great-granny was ahead of her time, life never slowed down in the mountains of Kentucky and Missouri, so those folks were always looking for "folk remedy's" to help their bodies.

Stomach pain is debilitating and wicked, it feels like your body has betrayed or revolted against you, so what are you doing to negotiate a peace treaty with it?
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Old 01-29-2013, 11:29 AM #20
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Smile Please try this

I've had rsd for 6 years,it really effects my stomache severely , I took all the different meds nexium and many others ,plus gull stones removed , gull bladder removed. Nothing helped. My stomache symtoms were severe cramps , gas pains , sweating ,bloating exc. my dr tried this drug called remeron.and let me tell you if u still have problems with your stomache and u have rsd .i think this can really help u as soon as u take it. The drug makes u tired ,so u take it at night . After u take the pill it makes u hungry ,the only time I really can eat without having pain or nausea .it is also a nuro med to I think. I would really recomend this to all of you.i think it will change your life, without sounding two dramatic.without this pill I'm bed riddin from the pain and cramping and cold sweats. I hope this helps you ?........"remeron"
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