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Old 02-28-2008, 02:46 PM   #1
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Anyone have it internally in your stomach/intestines?

Hey everyone,
Hope all is the best it can be! Just wanted to know if anyone has it in this area. It is in the arm/legs and now the stomach. Doc. says it is in the brain too. I cannot eat and I have pictures that look like I am 7-8 months pregnant due to the swelling. I am felling horrible and cannot eat. I eat for survival only and when I am done losing the excess lbs. from Methadone, Amitriptylene, Cymbalta, and maybe Ketamine then I am going to waste away. This is the one time I am glad I have some weight on, but it is coming off fast. If I continue to not eat and vomit like this I am going to have a whole different can of worms on top of this. You would think after 11-12 yrs. the surprises would be over, but no not at all.
Any help on how to get this managable would be appreciated.
Thanks, Nikki

 
Old 02-29-2008, 12:01 AM   #2
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Re: Anyone have it internally in your stomach/intestines?

Oh Nikki, I am so sorry. I was wondering how you were, since you had not been on for awhile, but I'm sad that your absence was because you were feeling so rotten. Can you be given Zofran? It is for nausea from chemo or surgery. My son took it when he had severe migraines. What does the doctor mean when he says it is in the brain? Are you having headaches, too?
Sending good thoughts and gentle hugs your way.
Sunny

 
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Old 02-29-2008, 05:33 AM   #3
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Re: Anyone have it internally in your stomach/intestines?

Nikki,
Wow, I am so sorry to hear that... Its weird that you posted this.. My other postings mentioned my daughters teacher who was wondering how pregnancy is with RSD.. She is having the same exact problem.. She vomits all the time.. It starts out of know where.. She get a little dizzy and shortly after she vomits.. This has been going for a while with her.. At first they felt it was her goal bladder.. So they removed it.. AFter all that, they are now telling her its from the RSD.. Her vision has changed.. She said that her weight goes up and down.. She'll lose 40lbs and then gain it back, then lose it again.. Anything she eats.. She will vomit.. She has alot of pain in the abdominal area along with pain in her chest area and down her one arm.. Her head feels very weird she said.. Last time I spoke to her She going to see the DR the following day..
I will email her and ask what her out come was from the office visit.. Maybe something will come out of it for you.. Right now, I know she's taking Lyrica and cymbalta..
I'll get back to you as soon as I hear from her...
What are the DRs telling you? Can they do anything for you?
Thinking of you,
Michelle

 
Old 02-29-2008, 02:56 PM   #4
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Re: Anyone have it internally in your stomach/intestines?

My daughter also developed abdominal RSD from taking too much medication for her ankle RSD. Finding help was next to impossible, as her doctor was much more apprehensive about epidurals, blocks, etc.; and she could not tolerate medications because of the side effects. She lost over 15 pounds and had to eat as many as 18 times a day, as she was only able to handle very small amounts at one time. She would take a few bites every 1/2 hour because she knew she had to in order to survive. The only thing that helped her was hyperbaric oxygen treatments. It took 22 high pressure treatments in a clinic to stop the pain, and she now uses a mild chamber in our home to keep her pain away. Best wishes in your search for help!!
Jeanne

 
Old 02-29-2008, 03:57 PM   #5
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Re: Anyone have it internally in your stomach/intestines?

Hi there,
I suffer from RSD in my stomach as well. my doctor has treated me with anti nausea medicines and it helps me a lot. I take it regularly (before bed and during the day) and I no longer am vomiting daily. I would ask your doctor about anti nausea medicines before giving up. I know where you're at, and it is no fun to be getting sick constantly but it is possible to stop it!
Hang in there! HUGS!
~Melanie

Last edited by melanie08; 02-29-2008 at 03:58 PM.

 
Old 02-29-2008, 03:59 PM   #6
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Re: Anyone have it internally in your stomach/intestines?

Thanks guys!
Went to the doctor today who sent me to the ER. My bloodwork was great- nothing looked abnormal. They gave me an Ultrasound and some Zofran, thanks Sunnycal- the ultrasound came back with nothing, they wanted to rule out any ovarian or other related problems. They found in my urine, 4 white blood cells, and 4 red blood cells which the dr. said was highly unusual. He wanted to do a C-scan, but I cannot even think of Barium without my stomach flipping. I am going to take a strong antibiotic and if it is not remarkably better in 2 days then I go back. I pray this is the opposite- something they blamed on rsd and it was an infection- if that is the case, I have had this infection for over 5-6 months
peace my head is splitting right now. Need to find that quiet place.
As far as it being in the brain, I have had the pleasure of meeting a semi-retired doc. who comes to the cape from CA. for 1/2 the year. He explained to my husband and I RSD like I had never known it before. He said with a great deal of certainty that it is in my head and stomach as well as the obvious hand, and legs. I have a lot of neck pain on my r side of the base of my head. To tell you the truth I would think something was wrong if a day went by when I felt great.
All we can do is have faith that this is happening because we are strong enough to handle it. I have no other explaination as to why this is happening.
So pray to whatever god you believe in and ask for some peace- that's what gets me through the day- the faith I have. These are the times you need it MOST!!!
Nik

 
Old 02-29-2008, 04:02 PM   #7
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Re: Anyone have it internally in your stomach/intestines?

Melanie,
How did they diagnois it? Do you have it anywhere else? How long have you had it in you stomach?
Thanks, Nik
Just read your last and believe me if I have not given up yet the chances are slim to none that I ever will. I have 2 babies and a terrific husband that need me. If not for anything else I do it for them.
I am not using my wheelchair 1/4 as much thanks to Lasix I only have to use it at home at the end of the day- other than that it is crutches and a cane...Now I figure out the stomach thing and how to deal and on to the next...

Last edited by jaxobean; 02-29-2008 at 04:08 PM.

 
Old 02-29-2008, 11:09 PM   #8
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Re: Anyone have it internally in your stomach/intestines?

Hi jaxobean,

I'm sorry to hear this. I know exactly what your talking about. I too was at the doctor's and today I found out that I have Cervical Spinal Stenosis Abstract I. On top of RSD. They believe now that from my car accident 12 years ago this is what might have caused all of this. Even though I thought I experienced this pain 3 years ago and diagnosed 2 years ago. I'm really confused. Anyways, I know they our gasping at all straws and noone knows how this starts or happens. Anyways, its a lot to deal with. I have many health problems but all of my doctors seem to think that this RSD is really taking its toll on my body. Our immune system really bites and we our acceptable to almost anything. Not only our we acceptable but it can attack us anywhere on our bodies. All we can do is stay away from sick people, don't overdo it, be careful, eat healthy, take our medication, think positive, REST and take care of ourselves as best as we can or know how too. I forgot to mention: smile.... I know the frustration we all go through it and today I think I hit a wall or something. I finally decided that I'm just going to think positive, take my drugs and live my life as good as I can with a lot or prayers. My prayers our with you. I hope you find relief and answers. If not answers at least peace of mind.

Sheila
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Sheila A.

 
Old 03-05-2008, 04:17 PM   #9
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Re: Anyone have it internally in your stomach/intestines?

Hey guys,
Oh no wait sorry for the scare, I do not have it in my stomach I have Irritable Bowel Syndrome, or so my primary who has not even been treating me ( a part-time doc. was from CA. and he is only here 1/2 the year). I am sooo done you guys have no idea. I am tired of being a guinea pig and I am not going to prove to them through my self torture that it is rsd. I have gone through 2 different surgeries and have done everything the doc said regardless of the pain and side effects caused. I am no longer going to do that. In my eyes that is how this thing has spread everywhere. I am going to be my own advocate. We all have to be. We have to be careful because what docs. do not know about RSD can ruin our entire lives.
Nikki

 
Old 03-05-2008, 07:34 PM   #10
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Re: Anyone have it internally in your stomach/intestines?

Hi,

I just signed up today and this is my first post. This thread caught my eye. I have had RSD a little over 13 years now. I have RSD, head to toe and inside and out.

I have been diagnosed with RSD in my intestines and in my bladder.

For my bladder, I have to catherize myself 3 times a day when it is really acting up.

For my intestines I was prescribed Go-Lytely to drink, once a week, for the rest of my life to keep my intestines moving.

I have been taking an anti-nausea medicine (Reglan) for the past 12 years.

As for the stomach/abdomen pain, I just have to rely on my pain meds to do their trick. It is scary when I get such intense pain that breaks through my pain meds.

I do have a warning for anyone with this problem. In 1998 I had intense pain that was so out of place that I knew something else was going on. I went to the ER and was told it was just my RSD. I had a nasty surgeon tell me he would do an ultra sound on my gall bladder just to put my mind at ease. It turned out that I had a huge gall stone that was blocking the entrance into my gall bladder and I was taken into emergency surgery.

We know our bodies better than anyone does and when you just know that something is out of place and not right, you have to be your own advocate and fight for your rights.

If anyone has any other questions for me, please let me know and I will be happy to give you any information I can.

 
Old 03-06-2008, 04:12 AM   #11
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Michelle94 HB User
Re: Anyone have it internally in your stomach/intestines?

RSDroe,

Welcome to the boards.. I am so sorry to hear what you are going through. You much be a strong person to have to attend to all of this.. My heart truly goes out to you..

I don't if you had read all the threads, but theres a teacher who I know. She has RSD and she was questioning about internal RSD plus pregnancy... She has alot of internal pain.. She's back forth to the drs.. I can't tell you how many drs she's been too.... I think just recently she had her gallbladder out also..

She's still con't with pain.. She vomits all the time for no reason..and they cannot find out what it is.. She was just sent down to Philly to see a gastro.. She swears it is the RSD.. I told her I would come one hear and ask anyone if they have internal rsd and if anyone has gone through a pregnancy while having rsd.. YOu may be a great help to her.. She doesn't belong to this board I can help out by asking some questions...

How did you know you have internal rsd? Did you have any vomiting?

Look forward to hearing from you,
Michelle

Last edited by moderator2; 03-06-2008 at 06:48 AM. Reason: off topic - it is neither necessary nor allowed to discuss the posting rules

 
Old 03-06-2008, 09:45 AM   #12
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Re: Anyone have it internally in your stomach/intestines?

RSDroe,
Hi, and thank you so much for responding to my question. I am glad you found the board. I have had it for almost 12 yrs. now and I know how beat you probably feel. My doc. just ****** me off so bad the other day. I am just getting out of a wheelchair after one very long depressing year. Around Nov. my legs were swelling so bad from 2 spinal cord stimulators that took it out of my hand and arm and zapped it right to the legs.
In Dec. we went to Disney with my 4&8 yr old cherubs. I think it must've been the plane ride or just the right combo of things that made it so bad I was 3x my size. My stomach was so swollen in the am that I looked 7 mos. pregnant. As I would move around it would dissipate and spread, but it was like overnight. When I returned the doc. put me on Lasix for the swelling and knock, knock, knock, the massive edema is under control. My stomach though is a mess. It is looking like a duck, walking, and talking like one too. I hate when these docs. do not listen to the patient. As I am sure you have done, I have been put through tourture. They tried everything the could. I even had Ketamine infusions. This is a monster. I think well know I ****** my doc. off because after she took 1/2 my blood and gave me a gynelogical ultra-sound she said no I do not think it is the rsd. I think it is Irritable Bowel Syndrome. I am getting off as much meds as I can because they are not working. I am done with the guinea pig route and I think that twisted her- NOT my problem. I am vomitting and I cannot eat. This has been going on for a long time too. Luckily, from being in the chair and gaining from Methadone I have extra weight but it is coming off fast. Soon I am not going to have any excess to lose. I mean I wanted to get down to my normal weight but I knew once I lowered the Methadone from 60mg to 20 that it would shed off. Well things that were tight 2 weeks ago are floating on my body.
The problem is roe is that docs. either blame everything on RSD, like you said with your gallbladder, or they test you until they are convinced of it. I am writing all my docs. and hospitals in the area. They know me well and I am going to give them my contact info for anyone they see who has rsd and needs to talk or some advice. I am not a doc but the truth is that I am going to listen to people with this disease coupled with my own intuition and that is going to guide me. No more dealing with doctors egos.
I wish you the best and thank you again. Nikki

 
Old 03-06-2008, 05:02 PM   #13
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Re: Anyone have it internally in your stomach/intestines?

Thank you {{{Michelle}}} and {{{Nikki}}} for the warm welcome. I know you both know what I am going through. I have been reading a lot of your posts and you both have been through a lot!

As to how I was diagnosed with internal RSD, I will have to go back many years and try to recall all of the steps I took. I do not know if everyone here has the same problem as I do but…I cannot remember things like I once used to be able to remember. It is very frustrating! It makes me feel downright stupid at times.

To tell my whole RSD story would take pages and pages. For right now, I will just address how I was diagnosed with internal RSD.

I was diagnosed with RSD back in 1995. In the fall of 1995, I had 3 discs herniate for no apparent reason. I had back surgery February 1996 and that is when my RSD went from just being in my hands and back to traveling everywhere possible in my body.

I had been on morphine for over a year before the horrible pains started in my intestines. I also started having severe constipation and constant vomiting and nausea. At first, the doctors thought everything was being caused by the morphine and I started eating lots of fiber and taking Citracel every day. I had a young gastro doctor that was not satisfied with the diagnosis of “chronic constipation” due to medications. He sent me to the top gastro doctor at a good Philadelphia teaching hospital. I went through every imaginable test they could think to do.

At this point, I was not moving my bowels, sometimes for up to 6 weeks. I was hospitalized 2 times for this problem.

The top doc at the Philly hospital got back bad results on all of my tests. Basically, he told me the RSD had shut down my intestines. At the same time, I was going to the top urologist at the same hospital.

The same thing started happening with my bladder. I could go all day drinking fluids and never have to urinate. Then, usually after midnight, I would have to go every 5 to 10 minutes for hours. Through testing, the doctor found out that I had a “Neurogenic Bladder” caused by the RSD. That was when I had to start catherizing myself 3 times a day. It turns out my bladder was not working and backing back up into my kidneys. Over the years, depending on whether I have a “flare” going on, dictates whether I need to catherize, so it has gotten better.

As for my intestines, I was sent to the Head of Surgery of the Gastro Department. His solution was to remove all of my intestines except for a small portion. He then wanted to connect the small piece of intestine to a colostomy bag. I wanted no part of this procedure. I was only 34 years old at this point.

My gastro then had me fly out to the Mayo Clinic for their input. They repeated many of the tests I already had done. Their solution was drinking the Go-Lytely, every Sunday for the rest of my life. There was no way I could manage this. Go-Lytely is what they use to clean you out before a colonoscopy and it completely depletes your system of all electrolytes. I tried doing this for one month and was completely exhausted.

Now days when things get bad and I cannot take the pain anymore, I will clean myself out with drinking a 64oz. bottle of Gatorade and mixing a bottle of Miralax with it.

This post is becoming so long but I will write more later. I have so many different stories to share and I am sure I will be able to share a lot with this group. I sure all of us are the same, many years with many war stories, and maybe some good stories to share also.

Thank you for welcoming me to the group.

Rosemary

 
Old 03-10-2008, 11:37 PM   #14
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Re: Anyone have it internally in your stomach/intestines?

Hi Nikki,

Sorry to hear your having increased cr** going on. Years ago I had major problems with the gas, bloat, diarreah & vomiting. I was on Zofran for 6 moths. Had to take it twice a day. After a year they tapered it & then when I started to feel nauseated I took one as needed.

Looks like alot of us are feeling the effects of long term RSD. I had a infection from a bug bit, stayed inflamed. MRI showed a drastic increase in the arthritis. Now I'm in a removable cast. I take it off to let my skin calm down . I can't take anti-inflamiitories because of the bruising.No second round of the steroids because of the osteoporosis. This disease always backs us into a corner.


Wishing you better days & sleep filled nights.

Judie

 
Old 03-11-2008, 05:50 PM   #15
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Re: Anyone have it internally in your stomach/intestines?

We too are considering hyperbaric for our daughter. What city and state did you find a HBOT facilility that worked for you?

 
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