Undiagnosed, need advice.
 

Hey,

I'm new here and desperate for answers. I have had to quit my job and reduce my course load in school because the pain and fatigue is overwhelming my life. I need answers. I need a plan. If anyone can relate to my symptoms or point me in the right direction, it would be so appreciated.


I'm 21/f and have been experiencing pain and fatigue for the past three years. I have been diagnosed at one point with fibro and chronic fatigue by a questionably uninformed internist, but doubt this diagnosis because I do not have muscle/joint pain or tender spots. The last two doctors I saw (rheumys) agreed that it likely wasn't fibro but sounded neurological in nature. I have had so many blood tests done, an ultra-sound and chest xray, and everything has come back normal; my immune system is in perfect health. I am waiting for an appointment with a neurologist.


Here is a list of my symptoms:
-fatigue and brain fog. When my symptoms are bad, I cannot think straight or remember anything. Things I think, say and write come out as a jumble. I'm normally a very sharp person, but when I'm going through a flare I have the IQ of a toddler.
-chronic mouth sores (negative for herpes)
-Sharp shooting pains, stabbing pains, buzzing sensations, pinprick sensations (feels like I'm randomly being stabbed with a needle), tingling and numbness, burning sensations on my skin, ticking sensations, patches of my body randomly feels tight like someone is grabbing me, crawling sensations, very sharp and thin shooting pains that feel like a pinched nerve. All of these pains happen randomly all over my body, and last no more than a few seconds. They are constantly moving around and can cause a great deal of pain and discomfort.
-Deep, tight, crushing ache in my torso, right below my rib cage where my diaphragm is. Sometimes it happens on my back, and sometimes wraps around my whole torso and radiates down my arms and legs. It gets worse when I stand/walk/run. (I've had my chest X-rayed and had an ultra-sound - came back normal.)
-Heartburn every time I eat or drink.
-Muscle tightness and weakness
-weak baldder
-lower back pain and stiffness
-My legs feel like bricks, and because of this I have a very stiff gait.
-Dry eyes/mouth
-Overall weakness

If anyone has any ideas or can relate, please let me know.

Thanks

I would be checking out celiac disease or gluten intolerance....good luck

Thanks Pabb.

I have been checked for celiacs disease and the results came back negative so I can rule that out.

1) there is ~ a 20% false negative rate on celiac testing.
2) they might not have run all tests
3) You can convert to positive at any time, it is something you are born with
the propensity towards, not the disease itself (usually)
4) Get copies of all lab work (not just celiac) and keep track of trends
if there is something on your celiac blood work that confuses you post
it here in the celiac/gluten sensitivty forum, and the gluten sensitivy is
something that would not show up in celiac blood work.

good luck

Thanks again Pabb.

I actually tried a strict gluten free diet for over a year, but to no use. In the process I did discover a mild soy and lactose intolerance, and since a lot of my digestive issues have lessened. Gluten doesn't seem to cause me any problems, though.

Have you been checked for Lyme?

Possible sjogren's syndrome
 

Just a thought, maybe worth a look.

Hope you get some answers soon, the worst part is the not knowing,

Take care, lindyloo.

Have you tried looking into Postural Orthostaic Tachycardia Syndrome?