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-   -   Stomach issue .... rsd? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/181787-stomach-issue-rsd.html)

Vrae 01-02-2013 04:19 PM

Stomach issue .... rsd?
 
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!

tos8 01-02-2013 05:04 PM

I know when my body is bringing on a super bad flair or if im in a flair, I cant eat. Because it makes me terribly sick. And so yeah if i try to vomit, its almost like its giving me "relief" but i think its because its just the pain is so bad that it causes you to get sick and of course you feel more relieved if you vomit. Do you think because your pain is higher its causing your stomich and what not to bother you? exspecially since you are on no meds. Or yeah of course the RSD can spread, have you talked to your dr about that?



Quote:

Originally Posted by Vrae (Post 943971)
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 clamed 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!


Abbie 01-02-2013 05:10 PM

I'm no doctor and have never experienced the symptoms you are talking about; however, the vomiting and diareah (sp?) sound very familiar.


HOPEFULLY IT'S ONLY A BUG!!!!

Have you had a colonoscopy? I'm not asking to frighten you but back in august while my mother was preparing for hers she vomited up all pf the the liquid and what passed through was diahreah. They did a CT scan first and a blockage. Then a colonoscopy revealed a tumor--- cancer. They got it all, no chemo or radiation needed.

Like I said before...I'm not a doctor but you may want to think about it.

I'll be thinking about you and praying it's only a bug!!!!

Gentle hugs!
Abbie

Vrae 01-02-2013 06:19 PM

Quote:

Originally Posted by tos8 (Post 943978)
Do you think because your pain is higher its causing your stomich and what not to bother you? exspecially since you are on no meds. Or yeah of course the RSD can spread, have you talked to your dr about that?

Thanks for the response. I know what you’re saying about pain levels being so high you feel nauseous , but that wasn’t it. This was really bizarre. The way it came on I thought it was maybe food poisoning or something. I wasn’t terribly nauseous until just before I got sick and afterwards I didn’t feel anymore nauseousness. So I know it wasn’t food. I don’t feel like I have a virus or anything. Just strange! I do have continued digestion issues in that I have acid that I am dealing with.
No I haven’t yet talked to a doc about this, other than when I had the ultrasound to rule out gallbladder.

Vrae 01-02-2013 06:29 PM

Quote:

Originally Posted by Abbie (Post 943980)
HOPEFULLY IT'S ONLY A BUG!!!! Have you had a colonoscopy? I'm not asking to frighten you but back in august while my mother was preparing for hers she vomited up all pf the the liquid and what passed through was diahreah. They did a CT scan first and a blockage. Then a colonoscopy revealed a tumor--- cancer. They got it all, no chemo or radiation needed.

Like I said before...I'm not a doctor but you may want to think about it.

I'll be thinking about you and praying it's only a bug!!!!

Gentle hugs!
Abbie

Thanks Abbie! I will be mindful of what you have said. I am trying to see if a change in diet will help. My rsd has been really bad lately and I just couldn’t help but wonder if it wasn’t internal rsd perhaps in my stomach or intestines or something. I try not to jump to an rsd conclusion, but it’s all been so weird that I have started to lean in that direction. I have not had a colonoscopy.

Ps.. no worries, I don’t freak out too easily. And if this keeps up, I will have to bit the bullet and start to pursue further with a doc.

Thanks again and your prayers are appreciated!

alaska49 01-02-2013 08:17 PM

I have RSd that affects my stomach, along with gastoritis. I get severe pain like someone is squeezing my stomach. They have detected issues with my gullbladder before with sludge going through it. My pain gets so bad that even my shirt touching my stomach hurts. I get horrible spasms and my digestion is very slow it takes my stomach nearly 3 days to digest the food I had eaten that day so it just gets backed up.

The meds I get for them is
Prilosec for the heart burn
Reglan for nausea
dycolosiclomine( not sure of the spelling) for the spasms

I have to eat very soft and easy to digest food and eat small meals every so often instead of a few big meals.

Sam

LIT LOVE 01-02-2013 09:02 PM

I dealt with this for years. Several random episodes per month. Rantindine (sp?) helped. It was very unpredictable and happened several times per month. There were periods where the only thing that didn't hurt to eat was ice cream. Ugh. Sparkling water also helped calm my tummy.

I've found that once I got serious about the 4 F's, while following a Paleo food plan, the issue resolved itself. It's been 2 years now since I've had this issue. If I start feeling like I'm getting the "flu" (and it's not flu, but very close) I get very strict with my diet (Paleo style, not regular dieting) and I can always head it off. Maybe I have gluten intolerance and the RSD exacerbates it, I dunno. It's worth checking out if food choices make a difference if this becomes an ongoing issue. With the holidays you probably were eating differently than normal.

And yes, it hurt for fabric to touch my stomach area as Alaska posted above. It felt like wearing skin tight jeans for 12 hours. Like my insides were bruised. And not just after vomiting, it went on for days or weeks at times. Then I'd feel fine, have no warning, and start throwing up again.

Vrae 01-02-2013 10:23 PM

Quote:

Originally Posted by alaska49 (Post 944011)
The meds I get for them is
Prilosec for the heart burn
Reglan for nausea
dycolosiclomine( not sure of the spelling) for the spasms

I have to eat very soft and easy to digest food and eat small meals every so often instead of a few big meals.

Sam

Thank you Sam! I am trying to give the small frequent soft easy to digest foods a go. Man that's hard for me, but trying nonetheless. Yeah I'm almost sure I am going to need some sort of meds to help me out. Thanks again!

Vrae 01-02-2013 10:39 PM

Quote:

Originally Posted by LIT LOVE (Post 944027)
I've found that once I got serious about the 4 F's, while following a Paleo food plan, the issue resolved itself.

It's worth checking out if food choices make a difference if this becomes an ongoing issue. With the holidays you probably were eating differently than normal.

Thank you Lit Love! Oh yes, a change in diet definitely makes a difference and yes, I am guilty of not eating the way I should. However, this is going to force me to make new choices in what I put in my mouth. After I was Dx with rsd I gave up on dieting and if I wanted a cookie…. I had a cookie, or whatever else. Any reasonable person KNOWS this is not good for you. I think the depression was severe and I was feeding more than my appetite. So guess what my New Years resolution is?? You guessed it! Yes, get my diet in order and start to try and eat more healthy. I think my body is screaming for me to do just that.

LIT LOVE 01-03-2013 01:37 AM

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. ;)

Vrae 01-03-2013 10:26 AM

Quote:

Originally Posted by LIT LOVE (Post 944083)
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!

firegirl 01-04-2013 12:39 AM

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!!

Vrae 01-04-2013 09:22 AM

Quote:

Originally Posted by firegirl (Post 944357)
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!

keep smilin 01-06-2013 10:29 PM

Quote:

Originally Posted by Vrae (Post 944410)
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..

fmichael 01-07-2013 08:32 AM

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

LIT LOVE 01-07-2013 12:47 PM

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.

loretta 01-09-2013 12:29 AM

Quote:

Originally Posted by Vrae (Post 943971)
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:)

loretta 01-09-2013 12:38 AM

Quote:

Originally Posted by Vrae (Post 943971)
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, :)

GarytheSnail 01-10-2013 11:19 PM

Quote:

Originally Posted by Vrae (Post 943971)
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?

89danboy 01-29-2013 11:29 AM

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"

Vrae 01-29-2013 07:35 PM

Thank you!!
 
Thank you all so very much for all of the comments, suggestions, and as always... for all of the support! I really do appreciate it and will be mindful of all that has been said as I move forward. :wink:

alt1268 12-18-2013 06:26 PM

Sorry to bring this up, but I have been having right upper quadrant pain for 8 weeks. So dr doubled nexium, performed an endoscopy and colonoscopy. Since then. Pain is worse, lots of gas also. Ended upin er last week and started on Zantac along with nexium. Ultrasound and hidda scan show gallbladder normal. So now dr is thinking ibs and started me on bentyl. Between us I stopped taking my neurontin I'm hopes I would loose weight and I've been doing really well with my foot.
With all this being said, last night I took my 1st dose of bentyl and also took 1200 neurontin, which helped. Haven't took any neurontin today and now pain coming back.
Do u guys think this is rsd?

birchlake 12-18-2013 06:59 PM

Quote:

Originally Posted by alt1268 (Post 1037980)
Between us I stopped taking my neurontin I'm hopes I would loose weight and I've been doing really well with my foot.
With all this being said, last night I took my 1st dose of bentyl and also took 1200 neurontin, which helped. Haven't took any neurontin today and now pain coming back.

Stay on the doctor prescribed gabapentin and see how things shake out in the near future.

I'd love to be off gabapentin too but I tried that once under doctor supervision and it wasn't very long until I found out that even though gabapentin has side effects, life is MUCH better on gabapentin than off of it. And it can help prevent spread in my opinion by keeping the nervous system in check.

Are you taking at least 500 mg of vitamin C daily? That has been shown to help prevent spread as well. I personally think everyone with CRPS should be taking vitamin C. 500 mg is far from a dangerous dosage, it's inexpensive and if your body doesn't need it, it is excreted very quickly; it doesn't stay in your body long.

Good luck to you! (and all of us.....)

moosey2me 12-18-2013 07:58 PM

issues
 
Quote:

Originally Posted by Vrae (Post 943971)
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!

I hear ya..My stomach goes crazy too..There for awhile I was on meloxicam..It helped in the beginning,but then I got terrible pains from it in my stomach..Had to stop..Now I drink gingerale and eat hard candy mints..They help a lot..I feel so bad for you...Maybe its the gab...it might be turning the other way on your stomach..You should talk to your doctor..I will pray for you..

alt1268 12-18-2013 08:18 PM

I appreciate the feedback. I am taking vitamin C. Only 1 tablet. Not sure at this moment what mg's. I hate this. But am so thankful for everyone here.

Quote:

Originally Posted by birchlake (Post 1037984)
Stay on the doctor prescribed gabapentin and see how things shake out in the near future.

I'd love to be off gabapentin too but I tried that once under doctor supervision and it wasn't very long until I found out that even though gabapentin has side effects, life is MUCH better on gabapentin than off of it. And it can help prevent spread in my opinion by keeping the nervous system in check.

Are you taking at least 500 mg of vitamin C daily? That has been shown to help prevent spread as well. I personally think everyone with CRPS should be taking vitamin C. 500 mg is far from a dangerous dosage, it's inexpensive and if your body doesn't need it, it is excreted very quickly; it doesn't stay in your body long.

Good luck to you! (and all of us.....)


alt1268 12-18-2013 08:20 PM

The bad thing about mints and candy is that they are a big no no for people with GERD and a hiatal hernia. So is carbination and straws. What a dilemina.

Quote:

Originally Posted by moosey2me (Post 1037992)
I hear ya..My stomach goes crazy too..There for awhile I was on meloxicam..It helped in the beginning,but then I got terrible pains from it in my stomach..Had to stop..Now I drink gingerale and eat hard candy mints..They help a lot..I feel so bad for you...Maybe its the gab...it might be turning the other way on your stomach..You should talk to your doctor..I will pray for you..


Vrae 12-19-2013 12:35 AM

Quote:

Originally Posted by birchlake (Post 1037984)
I'd love to be off gabapentin too but I tried that once under doctor supervision and it wasn't very long until I found out that even though gabapentin has side effects, life is MUCH better on gabapentin than off of it. .)

I'm with ya on the life is much better with it, otherwise I would never stop crying with constant electric shock and other CRPS pains. HOWEVER, I will ask the doc in Jan. if we can at least try something else for a minute and see what happens.

Vrae 12-19-2013 12:49 AM

hoping you're feeling better quick!
 
Quote:

Originally Posted by alt1268 (Post 1037980)
Sorry to bring this up, but I have been having right upper quadrant pain for 8 weeks. So dr doubled nexium, performed an endoscopy and colonoscopy. Since then. Pain is worse, lots of gas also. Ended upin er last week and started on Zantac along with nexium. Ultrasound and hidda scan show gallbladder normal. So now dr is thinking ibs and started me on bentyl. Between us I stopped taking my neurontin I'm hopes I would loose weight and I've been doing really well with my foot.
With all this being said, last night I took my 1st dose of bentyl and also took 1200 neurontin, which helped. Haven't took any neurontin today and now pain coming back.
Do u guys think this is rsd?

Hi Alt, it's good to hear from you! Don't be sorry for bringing this up. What's funny was that I had to re-read my original post and look at the date and I am saying to myself, wow, a year later and I am still dealing with these issues. As recently as getting sick like this (original post) while in San Francisco a few weeks ago. I still don't know if it's gabapentin, or crps attacking my insides. And I'm not sure hon if yours is rsd or not. This disease is soooooooooooo frustrating in that way.

I wish I had something more definitive and knowledgeable to offer. I sure hope your feeling better soon! Please let me know what happens, keep me/us posted.

AZ-Di 12-19-2013 09:22 AM

Hi Alt,
Sure wish I had a clue. I've had some of these symptoms too & thought it was due to extra Magnesium Dr. "prescribed". I never could tolerate neurontin anyway. Like most everyone here I too take at least 500 mg. vit. C daily.
So frustrating, wish I knew. :hug:

Nanc 12-19-2013 11:31 AM

Quote:

Originally Posted by alt1268 (Post 1037980)
Sorry to bring this up, but I have been having right upper quadrant pain for 8 weeks. So dr doubled nexium, performed an endoscopy and colonoscopy. Since then. Pain is worse, lots of gas also. Ended upin er last week and started on Zantac along with nexium. Ultrasound and hidda scan show gallbladder normal. So now dr is thinking ibs and started me on bentyl. Between us I stopped taking my neurontin I'm hopes I would loose weight and I've been doing really well with my foot.
With all this being said, last night I took my 1st dose of bentyl and also took 1200 neurontin, which helped. Haven't took any neurontin today and now pain coming back.
Do u guys think this is rsd?

Hi Alt! It is so nice to see you, but sorry for the reason! I really do not have much to offer. It is so hard to say if it is RSD or IBS. I know the doctors default to IBS when they cannot figure it out....been there! I would say if the nneurontin is helping your pain, then keep taking it. That is unless the side effects are too bad to deal with. I cannot take it or anything else like it to help my pain and I really wish I could as I need some relief.

I cannot take Vit C either. I was recently diagnosed with interstitial cystitis (IC) and supplements irritate my bladder, specifically vit C. From what I have read, IBS is common with IC. My PM dr thought it was RSD in my bladder, but it isn't. I also read that IC is common with RSD patients...all I know is that it is painful and another incurable condition in which I can't take the meds for it either :(

Sorry to go on about myself :rolleyes: I hope you can get some answers and relief soon!

Nanc
:hug:

Allanira 12-20-2013 08:02 AM

Since getting this "oh so wonderful disorder" I've gotten gastroenteritis, and have bad bouts of diarrhea, nausea, and vomiting. I don't know why it's effecting my stomach/digestive tracked when the disorder is in my legs, but it does. This is even when I'm not on any treatment I get the stomach thing going. Just out of the blue, and eating like normal I will have to run to the restroom and vomit, and have diarrhea. It got so bad I have a specific trash can in there for it. Isn't it just wonderful what this disorder does to us?

moosey2me 12-20-2013 10:22 AM

sick
 
Quote:

Originally Posted by Allanira (Post 1038376)
Since getting this "oh so wonderful disorder" I've gotten gastroenteritis, and have bad bouts of diarrhea, nausea, and vomiting. I don't know why it's effecting my stomach/digestive tracked when the disorder is in my legs, but it does. This is even when I'm not on any treatment I get the stomach thing going. Just out of the blue, and eating like normal I will have to run to the restroom and vomit, and have diarrhea. It got so bad I have a specific trash can in there for it. Isn't it just wonderful what this disorder does to us?

WE understand this very well..The pain overcomes us,which makes us sick..I usually drink small sips of gingerale and hard candy mints..Try it..I hope you feel better..Happy Holidays..

Allanira 12-20-2013 02:01 PM

This is a regular thing since getting CRPS. It doesn't matter what I do my stomach just out of the blue will start tearing up on me.

Brambledog 12-21-2013 07:58 AM

Hi Vrae and everyone :) don't know how I've missed this thread :rolleyes: I blame a brainless CRPS duh moment...

I have had some gastro problems for ages both before CRPS and after. I had my gallbladder removed not long after my second daughter was born (10 yrs ago eek), was diagnosed coeliac about 6 years ago, and have had various issues with meds affecting my stomach. Gabapentin was the worst and most dramatic - I was very ill twice on it, sickness, diarrhoea, cramping pain, dizzy etc and the doc thought it was a stomach bug first time, second time hit less than 2 weeks later - and no one else was getting ill, I wasn't eating anything weird or different to the family. I'd had to stop the Gaba while ill because I couldn't keep a thing down, and after the second time (thought I was going to die at one horrible point :( ) we decided to stop it and see. Well I got better so fast it wasn't even funny. Scares me to think what I might have gone through if he'd insisted I persevere...

I went onto a low dose of Lyrica and it's been much better, but the last two weeks I've had that upper left shoulder blade persistent ache/pain thing almost constantly, and it's worse a few minutes after I take my tablet... I'm so scared that I've started reacting to that too. It's not awful yet, but it's getting me down, especially so close to Christmas...:rolleyes:

I need to get tougher on my diet again as it has slipped a bit recently with so much going on and me having a bad flare, but this ache hasn't happened before. I did think at one point that it was part of the CRPS aches and pains, senstivity and weirdness I've got going on in my left arm, side, chest and shoulder...but the last few days I've wondered if it's actually more gastric in nature - and reading this thread it makes more sense.

Vrae, I hope you are feeling a little better and doing ok today. You've had rough trot recently and deserve a break....as do we all!

Take care all x

Bram.

alt1268 12-21-2013 11:42 AM

I am so frustrated. I have more pills to take then there are hours in a day. And nothing is touching the pain in my stomach. To give you an idea, within 15 min. of eating it is extremely painful in my stomach. (were my ribs split from each other) way up. Then my chest hurts, then my stomach cramps, then the nasuea, the the right side pain.

Had ultrasound, chest ct, and hidda scan. No gallbladder problems no aneruysm's. Yes had endoscopy which shows gerd and medium size hiatal hernia. This is not the same feeling as indegestion though. Had a colonoscopy, benign poyp in the cecum.

Having a stress test in January. (dr. is away for the holidays.) Pain dr. says he has not heard of abdominal rsd.
I almost went to hospital again last night. I got hungry today, ate, and now in tears from pain.l

wtf. sorry for the upset. But with my foot I could take pain meds and get some relief. I am not getting any relief with this. I need a new tummy for xmas please.:grouphug:

Brambledog 12-21-2013 01:50 PM

Alt that sounds so crazy :( I'm sorry things are so bad...

Just wanted to say hang in there, and I hope you get some kind of relief from the stomach pain soon. It's bad enough to watch every mouthful in normal times - at Christmas it is so mean. Hope you can have a few things that don't make you feel so bad.

Take care of yourself and try to enjoy Christmas as much as you can. I'll be thinking of you :)

Bram.

RSD ME 12-21-2013 02:17 PM

I've had stomach problems for a while. I think part of it is due to all the pills I take and part of it is due to the fact that I have gallstones and have had endometriosis. I rescheduled my appt with my endocrinologist (sp) for Jan 22nd to confirm. Maybe it's the meds you're taking or an ulcer. I would see a endo dr to see if they can find out. I hope you find out what it is and feel better soon.

alt1268 12-21-2013 03:41 PM

Thank you for the kind words. I am trying to enjoy the holiday's. Lord knows I love to eat. lol. I guess it is time for a diet.

Quote:

Originally Posted by Brambledog (Post 1038697)
Alt that sounds so crazy :( I'm sorry things are so bad...

Just wanted to say hang in there, and I hope you get some kind of relief from the stomach pain soon. It's bad enough to watch every mouthful in normal times - at Christmas it is so mean. Hope you can have a few things that don't make you feel so bad.

Take care of yourself and try to enjoy Christmas as much as you can. I'll be thinking of you :)

Bram.


NJPineyChick 12-21-2013 09:13 PM

Hope you feel better. I had something similar. It took 3 years but just dxed with celiac. No more tummy pain or rib pain as long as I am super careful with gluten.

murgir 12-22-2013 08:50 AM

Quote:

Originally Posted by Vrae (Post 943971)
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!

I read somewhere to take your antacid meds 2 hours after neurotin. Not sure where I found this but any pharmacist should be able to tell you for sure


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