Discussions By Condition: I cannot get a diagnosis.

"IBS", joint/jaw pain, fatigue

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • April 20, 2009
  • 10:48 PM

About three years ago I started to have a lot of different symptoms: constant pain in jaw on both sides, a long with 24/7 headache. I feel fatigued, and usually feel crappy after eating.

I also have a lot of additional symptoms after eating a lot of different foods, like wheat, oats, corn, dairy, onions, tomatoes, and a lot of other fruits and vegtables; such as bloating, diarrhea, chest pains, bad acne, "mind fog"/hangover feeling, occasional swollen glands in neck. I originally started having all of these symptoms as well as the others above at the same time until I was able to attribute some symptoms to what I ate, and started removing things from my diet. I am able to avoid the symptoms in this paragraph by eating a very limited diet.

I've been to several general practitioners, gastroenteroligists and have been tested everything they could think of, and never gotten a diagnosis other than "IBS", depression or, "nothings wrong with you." All tests have been negative (except lyme diesese pretest that showed up as "two bars" or something, whatever that means, but doctor said it was nothing), endoscopy/colonoscopy show nothing except minor inflammation, and "reactive nodules near terminal ileum". I've been tested for celiac/allergies several times before anyone asks.

I've seen a couple dentists/oral surgeons for the jaw pain/headache, and been treated for "TMJ" with absolutely no improvement. In fact most of the stuff I've tried (consciencely keeping teeth apart, wearing mouth guard at night) seems to make the pain worse. No doctors seem to think the jaw pain could be related to the digestive problems, but they started at the same time.

In the past few months I've also started to get cracking/pain/stiffness in the joints in my hands like I have arthritis or something, but I haven't gone back to a doctor since. Seems like there are a lot of autoimmune/inflammatory diseases that could cause fatigue and both digestive/joint problems. Would anything like this not have shown up on standard bloodwork?

I would greatly appreciate any opinion/ideas on any of this.

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  • Lyme testing is a hard thing - not reliable and especially if not done at a good lab. My dr in 05 said my test - maybe 1 or 2 bands short of the "CDC positive criteria" said it was nothing - I am still sick now - very sick 4+ years later. It spread to my spine in 06 and now after back surgeries was almost like reactivated - neuro symptoms, arthritis, - - alot of symptoms you also have.See an infectious disease and an allergist. Have them check your tryptase and histamine levels to see if you possible have a mast cell disorder - I have that too which can cause bone pains, sudden reactions to foods or alcohol, MSG, tomatoes, -- -anything that raises histamine. Search for histamine raising foods on internet - see if you have reactions to those foods. Barely any dr knows about mast cells which we all have - but sometimes someone gets too many of them which can cause various symptoms. I cut my knee the other day and broke out in head to toe hives which is crazy. I would get the Lyme testing along with all autoimmune disorder tests and thyroid testing done - see a rheumo, allergist/immunoloigst to start - maybe a gastro ( I know fun fun doctors who don't listen and look at me like I am crazy! :eek::eek:)Have them check your ESR/SED rate to see if there is inflammation in the body and all other complete bloodwork - a blood culture wouldn't hurt.You could have a food allergy - Lyme seems less likely perhaps with you since the food is involved so much. I would see the allergist and gastro. Perhaps you are depleting enzyme reserves digesting foods and just need some enzymes or something - they can check amalyse and lipase, used in digestion. I would start there. Rheumo. conditions can start as smoldering conditions or even seronegative - this stuff is no fun - the harder to find, the worse it gets and the longer wait if ever to be treated but don't stop being your own advocate. We know our own bodies best and not the drs that don't listen - for every 1 that does not - one does - move on and find a new one. Go to the biggest hospital near you and see the best dr there. You can check castle connely for 09 best doctors - though a lot of that is politics, some are great. :pquote=stars;166463]About three years ago I started to have a lot of different symptoms: constant pain in jaw on both sides, a long with 24/7 headache. I feel fatigued, and usually feel crappy after eating...
    rainsky 28 Replies
    • November 24, 2009
    • 10:51 PM
    • 0
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