Gastroparesis with severe symptoms!

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March – which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet – pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn’t move through – then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling – It seems to work by drinking just water /gator aid for at least a day. I just don’t know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn’t seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach – I never seem to have stomach pain – Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition – what are your symtoms and how are you managing? Thanks

@naturegirl53

Wow, I can't believe we all have this. I have diabetes also which causes gastroparesis so they say. I am always in pain from my head to my toes. Sever migraines, to my feet feeling like they are on fire. My stomach is on functioning at 25%. Im on a starvation diet practically. Crackers, yougurt, water, no sugars, milk, only water. What the heck..all my joints hurt. I have recently started to have new symptom of extreme onset of tiredness. I can fall asleep standing up. Tinninitus, vertigo, dizziness, nausea, confusion, forgetfulness, ( especially names of my grand babies and my own sons) . Feet, hands hurt badly. Stomach always feels full. We need to demand this investigated by CDC.

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Strangely, I have diabetes but really good A1Cs. I started feeling sick in May, and it has progressed from there. The Linzess has decreased the nausea but I can eat very little, an egg in the morning with yogurt, snacks of protein shakes, lunch of soups, a little fish, etc. They took me off my diabetes meds and said I could manage my sugars on my own. I have started having pins and needles in arms and while this improved after a shot of vitamin b12 (of which I was deficient), I am still have some effects. I was on Metforim and did not know that caused vitamin b 12 deficits and now am wondering if this is all a reflection of that. I saw my doc faithfully, took meds, watched what I ate, was active, but suddenly this came on. I can't sleep much though. Acupuncture is what works best, but it is costly. I am having an endoscopy, colonoscopy, and a gastric emptying test coming up. I am also meeting with a neurologist and a cardiologist. Each doctor is so narrow in his/her scope, which makes it hard. I want to go to the Cleveland Clinic if the diagnosis is confirmed, which the GIs here are leaning toward. Has anyone been? It seems like the most comprehensive for this disorder? I can manage any hand/leg pain, but the eating is tough. And if this is a complication of my diabetes, does it make sense to be off the meds? I am angry at myself. I should have done more. All I can do now is work to make it better. I worry about dying. I still have children at home. I am currently still trying to work but I wonder about it…

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@nikkig

Strangely, I have diabetes but really good A1Cs. I started feeling sick in May, and it has progressed from there. The Linzess has decreased the nausea but I can eat very little, an egg in the morning with yogurt, snacks of protein shakes, lunch of soups, a little fish, etc. They took me off my diabetes meds and said I could manage my sugars on my own. I have started having pins and needles in arms and while this improved after a shot of vitamin b12 (of which I was deficient), I am still have some effects. I was on Metforim and did not know that caused vitamin b 12 deficits and now am wondering if this is all a reflection of that. I saw my doc faithfully, took meds, watched what I ate, was active, but suddenly this came on. I can't sleep much though. Acupuncture is what works best, but it is costly. I am having an endoscopy, colonoscopy, and a gastric emptying test coming up. I am also meeting with a neurologist and a cardiologist. Each doctor is so narrow in his/her scope, which makes it hard. I want to go to the Cleveland Clinic if the diagnosis is confirmed, which the GIs here are leaning toward. Has anyone been? It seems like the most comprehensive for this disorder? I can manage any hand/leg pain, but the eating is tough. And if this is a complication of my diabetes, does it make sense to be off the meds? I am angry at myself. I should have done more. All I can do now is work to make it better. I worry about dying. I still have children at home. I am currently still trying to work but I wonder about it…

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@nikkig Do you have a local doctor you trust? If so, tell them you want to be tested for Amyloidosis, and that they can get the test names from Dr. Martha Grogan at Mayo-MN. You do not need to put up with doctors who are unwilling to run every test in the book until they have answers. Again, my paper which I listed above, has the list of tests you can start with. There is no money in this for me. Just the satisfaction of knowing I gave you some good info. My guess is that you have excessive mis-folded Proteins in our blood and urine. There is a test, SERUM FreeLiteChain (sFLC(c)) from The Bindings Site of Birmingham UK and Seattle which might help. It is a simple blood test, available almost anywhere, and it is sent to ARUP or Mayo-Quant, or Boston Amyloidosis for analysis. I think you need to begin looking at the stuff coming out of your liver and your kidneys. Also, you probably have mild enlargement of some of your organs, maybe 10% or less. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" Free, and in PDF or odt

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@oldkarl

@nikkig Do you have a local doctor you trust? If so, tell them you want to be tested for Amyloidosis, and that they can get the test names from Dr. Martha Grogan at Mayo-MN. You do not need to put up with doctors who are unwilling to run every test in the book until they have answers. Again, my paper which I listed above, has the list of tests you can start with. There is no money in this for me. Just the satisfaction of knowing I gave you some good info. My guess is that you have excessive mis-folded Proteins in our blood and urine. There is a test, SERUM FreeLiteChain (sFLC(c)) from The Bindings Site of Birmingham UK and Seattle which might help. It is a simple blood test, available almost anywhere, and it is sent to ARUP or Mayo-Quant, or Boston Amyloidosis for analysis. I think you need to begin looking at the stuff coming out of your liver and your kidneys. Also, you probably have mild enlargement of some of your organs, maybe 10% or less. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" Free, and in PDF or odt

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I will talk to my doc about it. Thank you!

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@sonyaparkey

My daughter was diagnosed and was put on erythromycin, but is having Dizzy Spells & Blurred/Double Vision. I took her to the hospital and they treated her for dehydration, not even looking in her ears. I took her to the PCP and they said she looked fine….but this article is scaring me!!! Could it be MS????

Medical Conditions That Cause Gastroparesis
Diabetes is the most common medical condition associated with the development of gastroparesis. Over time, high blood glucose levels damage the vagus nerve, which is responsible for sending signals to and from the brain and gut. Once this nerve becomes damaged, gastroparesis can result.
Diseases of the nervous system such as Parkinson’s and multiple sclerosis can cause gastroparesis. Delayed gastric emptying can also develop as a side effect from chemotherapy and radiation treatment. Thyroid disease has also been shown to be a contributing factor.

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Update: she is still miserable.The devastation of watching my 11 year old A honor roll student and all the extra activities widdle to NOTHING, have caused us health issues. As parents it is devastating when doctors refuse to take the pain "REAL"!!!!!!!!!!! We both started depression meds, high blood pressure meds, and he had a triple bypass he swears is due to this anxiety. Never a pill or problem in 50 years. A sick child and no doctor "ON OUR INSURANCE" will listen. We had a positive ANA Hepatitis and were referred to Scottish Rite who ONLY said she NOES NOT HAVE LUPUS. I travel 200+ miles every appointment. Insurance sucks. No specialists want to take us.

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@sonyaparkey

Update: she is still miserable.The devastation of watching my 11 year old A honor roll student and all the extra activities widdle to NOTHING, have caused us health issues. As parents it is devastating when doctors refuse to take the pain "REAL"!!!!!!!!!!! We both started depression meds, high blood pressure meds, and he had a triple bypass he swears is due to this anxiety. Never a pill or problem in 50 years. A sick child and no doctor "ON OUR INSURANCE" will listen. We had a positive ANA Hepatitis and were referred to Scottish Rite who ONLY said she NOES NOT HAVE LUPUS. I travel 200+ miles every appointment. Insurance sucks. No specialists want to take us.

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@sonyaparkey Sounds like Evans Syndrome ES to me. It is like Amyloidosis, but the protein in the blood shows up very late. ES hits kids any time from birth to 30. It shows positive for ANA, but will act like Lupus, often. Mayo and other top ones know about ES. But this may be a case for NIH Undiagnosed Diseases Program. NIH.ORG, I think. Some doc simple has to write a letter to them. You may need to call NIH to talk to them. But look on line first.

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Hello im new to this and im suffering from this to

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Hi everybody,

I'd like to invite you to view this recently published post on the Connect "Gastroenterology & GI Surgery” Page. Madelynn Strong, clinical dietitian at Mayo Clinic, recommends strategies and foods that might help relieve symptoms of gastroparesis, and speed up gastric emptying.
Gastroparesis Diet Guidelines https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/gastroparesis-diet-guidelines-1/

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boil anise seeds , 2 ts … :-)..

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I was just diagnosed with gastroparisis a few days ago. My symptoms include: chest pain/heaviness/tightness, shortness of breath, every scent causes a trigger (newer symptom) stomach pain, nausea, vomiting, off balance, fatigue, loss of appetite, diarrhea, constipation, bloating/gas, body aches, heartburn, lightheadedness, right side of neck and shoulder pain, and a feeling of choking. I have gone to many doctors (within 1 year and 8 months now). The breathing part is the most that’s bothering me. I’m extremely stressed, depressed, miserable, anxious, and scared. I don’t like these feelings, I have lost interest in most things in life. I don’t even wanna get out of bed in the morning. Does anyone have breathing problems with this?…I’m still figuring this out, my doctor thinks it’s acid reflux (chest problems). I sure could use some support. Thanks.

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@bekka93

I was just diagnosed with gastroparisis a few days ago. My symptoms include: chest pain/heaviness/tightness, shortness of breath, every scent causes a trigger (newer symptom) stomach pain, nausea, vomiting, off balance, fatigue, loss of appetite, diarrhea, constipation, bloating/gas, body aches, heartburn, lightheadedness, right side of neck and shoulder pain, and a feeling of choking. I have gone to many doctors (within 1 year and 8 months now). The breathing part is the most that’s bothering me. I’m extremely stressed, depressed, miserable, anxious, and scared. I don’t like these feelings, I have lost interest in most things in life. I don’t even wanna get out of bed in the morning. Does anyone have breathing problems with this?…I’m still figuring this out, my doctor thinks it’s acid reflux (chest problems). I sure could use some support. Thanks.

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See an allergy/asthma doctor for some medicine to help with the breathing problems. Then, make an appointment at the Mayo Clinic. They are #1 in gastroenterology. You might also want to try Phillips Milk of Magnesia for the constipation. My doctor said I could take as much as I want, and I use 4 T every 2d or 3rd day.

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I have mild gastroparesis and have a lot of pain across my stomach and back does anyone else have this I can't take erythromycin and will not take raglan I'm taking tramadol for the pain may suggestions

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Hi @cookiegnias I moved your post to this existing thread on Gastroparesis so you can read up on what others have said about living with this condition.

I wanted to tag fellow Connect members, @dorifg @kbelter @darlia @nanny23 @katmandoo @jlfisher56 @delicht @danybegood1 @robatk17 and @citygirlannie as well as @pdilly and @doodle75bug, as they have mentioned gastroparesis in the past and may have thoughts on medications.

Back to you @cookiegnias, you mentioned two medications that you are unable to take. Did you have adverse reactions to these medications? How long have you been living with this condition?

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