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Chronic Stomach and Chest Pain followed by numbness in face and body

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Chronic Pain
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Posted 2/26/2012 5:08 AM (GMT 0)
I am puzzled by my symptoms and am hoping someone can provide some suggestions or knows what I am going through. I am a 29 year old female and have been having a variety of symptoms on and off for three years. I have been diagnosed with Gluten intolerance (not celiac), Raynaud's Syndrome, GERD, Gastritis and Pancreatitis, but none of the medications seem to work and the diagnoses don't really explain all my symptoms. My blood work always comes back normal as well as several more invasive tests i have been subjected to. Currently I have stomach pains on the left side especially after eating or when hungry, chest pains, indigestion, abdominal cramping, numbness and tingling in my hands, numbness down the right side of my body and in my face, extremely dry and painful eyes, burning sensation in my feet, pins and needles feeling in my feet, joint pain, fatigue, swollen glands, headaches, bouts of diarrhea and constipation, feeling as if my stomach is swollen, nausea, and pain that runs up the front of my neck (It's very strange, not muscular). I have good days and bad days, but lately they have been mostly bad. I'm starting to worry that I might have an autoimmune disorder. My grandfather had sjogren's and I have a sister with RA and one with Chrohn's so I'm familiar with the difficulties of diagnosing and treating them. Please help because my doctors are not.
Posted 2/26/2012 5:36 AM (GMT 0)
Hi Puzzled w/ Pain,

Welcome.... I'm sorry you are having so many symptoms....especially when you don't have a "clear cut" diagnosis (or ones that you are comfortable with).

When I first got ill almost 9 years ago.... I went through a couple of years of the same type of things. Many, many symptoms.... so many tests - they thought I had everything from cancer to MS to a variety of super rare things - so I had bone marrow testing; biopsies of various organs, lol; and on down the line.

Over the years, I ended up getting concrete diagnoses.... including a couple of auto-immune disorders.

Many disorders fall under the "have to rule everything out first" category. And that's frustrating - because it can take time...

Your symptoms could be caused by so many different things that it's hard to say what's going on.... but w/ a family history of different things... and especially because you are not comfortable w/ your current diagnoses.... I would definitely say you need to press to find out what's going on.

Do you see just one doctor? What type of doctors have you been to? Have you had second opinions? My diagnoses came after going to a brand new doctor.... he was really intrigued by my symptoms and wanted to work to figure out what was going on w/ me. Sometimes, it takes a fresh set of eyes to figure things out.

Also - I would encourage you to really advocate for yourself. You know your body better than anyone else....including any doctor. If you're not satisfied w/ your current diagnoses - you need to let that be known and really push for more to be done....

I also spent a lot of time researching things on the web when I first got sick - so I think you did a great job coming here and asking for help. We may not have the all the answers.... but most of the members here have been through lots on their own health journeys... and are a wealth of information.

Again, welcome..... I really hope you get some answers to what's going on w/ you. --Tina
Posted 2/26/2012 6:06 AM (GMT 0)
Thanks for your encouraging words. I have been to three different GI specialists and two different Primary care doctors (mostly because my insurance switched). The first GI said I should see a psychologist because its probably just anxiety. Ironically, I am a psychologist so I decided I needed a new GI. My PC dr is very nice and tries very hard, but seems clueless. She just gave me a referral to an allergist to see if my symptoms are environmentally influenced. So I guess it won't hurt to try that.
Posted 2/26/2012 7:25 AM (GMT 0)
Hi Puzzled with Pain!

Welcome! Sorry you are dealing with so many things. It is so frustrating to not have answers as to what is wrong. After an accident I dealt with pain in my shoulder for two year before I found answers. During those two year I went threw 4 doctors and 1 surgery. After giving up on finding answer my friend told me to try her doctor and he was the one who gave me answers. So press forward and try as many doctors as you have to untill you find the one who find the correct reason for your symptoms.

Hope you find answers soon.


Take care and good luck,

Kaila

Posted 2/26/2012 8:26 AM (GMT 0)
Puzzled,

I had to laugh at the GI who told you it was "just" anxiety - and you happen to be a psychologist, lol. Ahhhhh.

Well, that's good that your PCP is trying hard and is very nice.... would she consider sending you to an internist? An internist is usually the one who handles the more complex, "puzzling" cases... and, in my case, was the type of doctor that got to the bottom of my own health issues.

Also - because of the autoimmune connection in your family... and also some of your symptoms (joint pain, fatigue, etc) - I think a consult w/ a rheumatologist would be reasonable too.

The only other thing I can think of is, depending on where you live (and your insurance, too, of course), a teaching hospital (like Mayo, Cleveland Clinic, on down the line) might be a consideration.

I'm sure that others here will have more thoughts.... Take good care --Tina
Posted 2/26/2012 2:15 PM (GMT 0)
I'm going to see if I can get a referral to a Rheumatologist/Internist, good suggestion. I am in NYC. My insurance is not great, but I know there has to be a teaching hospital here somewhere and it might be worth paying extra for.

-Rebecca
Posted 2/26/2012 3:28 PM (GMT 0)
Rebecca,

I'm cleaning out one of my bookshelves and I came across a book that really helped me when I was first sick.... it's called "What's Wrong with Me? - The Frustrated Patient's Guide to Getting an Accurate Diagnosis". I'd really encourage you to try to pick up a copy of it. It's one of the books that really helped me to become a strong advocate for myself.... and push until I got a diagnosis that I was completely sure of.

It's also talks about chronic pain throughout the book....

--Tina
Posted 2/26/2012 3:37 PM (GMT 0)
I will see if I can get a copy. Thank you!
Posted 2/26/2012 7:04 PM (GMT 0)
Hi Puzzled and welcome to the chronic pain forum. Sounds like you have a lot going on with various health issues. Its hard when dealing with more than one thing when it comes to drs. They want to concentrate on one thing at a time in most cases.

I see you mentioned pancreatitis as one of your issues. I have a neighbor that was constantly sick from this and cannot count the time an ambulance was called to take her to the hospital. This went on for years and finally she was able to get this under control by diet. She sticks to this diet and has zero problems, the minute she strays from it she is suddenly ill. Many of your symptoms mimic other health problems so that adds to the problem too. I think perhaps going to a teaching hospital may be the way to go since everything else has bombed out on you. As Tina mentioned, its pretty common these days to have to advocate for care.

Anyway, I wanted to pop on and tell you welcome aboard. Please take care....Susie
Posted 2/26/2012 7:48 PM (GMT 0)
Susie,
Any idea what your neighbor's diet is that is so helpful? I am off of gluten and dairy. I also take Creon (pancreatic enzyme) when I eat and that does help prevent the swollen stomach feeling I often get, but not the pain. I am confused about the pancreatitis diagnosis because from what I have read, I don't have many of the symptoms and/or any of the precursors to the illness.

-Rebecca
Posted 2/27/2012 5:01 AM (GMT 0)
Hi Rebecca,

Just popped in to say hello, and I hope you soon get this pain figured out. My sister has chronic pancreatitis and has to follow her diet like Susie says when she slips she is back in hospital. Her pain is constant she never has a break from it and as you mentioned is on a handful of medication including enzymes. I also have been suffering with some undiagnosed pain in my ruq and keep hoping to wake up one morning and the pain will be gone.
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