Undiagnosed going on 1 year

[stephanyah]

First I'll list my symptoms then what I've been tested for already.  At the start I had extreme pain in the upper right side of my stomach under my ribs.  I also started burping every couple of minutes all day, even if I hadn't eaten or drunk anything.  I went on a GF diet and it helped some, but it turned into pain on the exact opposite side of my body, same localized point that is now a muscle trigger point.  The pain spreads UP, sometimes down into my floating ribs and back around toward the front again.  It is not like DOMS pain - it's like when the dentist hits a root nerve, only it's in my back, and it's constant.  I get really bad knots in the muscles in my back and sometimes it's difficult to even hold a glass of water without crying from the pain (and I'm no wuss).  I have also have depression that has worsened greatly with the chronic pain.  I occasionally have tremors (though I've always been a little tremor-y), lifelong constipation issues.  The pain increases a lot during my period.  Walking greatly increases the pain.
Other weird symptoms that are occasional:
Temperature usually low, sometimes 95, rarely up to 99.
Shortness of breath not caused by pain I just can't seem to breathe
Suddenly uncoordinated when walking
Nausea
Gluten sensitivity (seems to have mostly gone away now, prior caused extreme pain to eat)
General aches and pains in upper body (arms, wrists, neck)
Night sweats
Increased anxiety, "stomach drops" feeling like you forgot something really important about once a day
High resting heart rate, heart rate increases quickly (though this is typical for me)
Butterflies in stomach with no cause (no thoughts, no stimulus that would cause this), preceded the onset of any pain, this one is weird for me.

Doctors I've been to:
GP
Internal medicine
Allergist
GI specialist
Orthopedic surgeon

I have had these tests, all negative for anything unusual except bile found in stomach at peak of GI issues:
Celiac panel
H-pylori biopsy
Upper scope
CT scan
MRI
Extensive blood work including vitamin/mineral deficiencies (none found)
Food and environmental allergy testing (no food allergies, allergies to grasses and trees and dust mites)
BP, HR and other vitals all good, BP usually perfect, around 110/70
And TSH levels are 2.1

My discs in my back are PERFECT, but chiropractor and physical therapist have seen greatly reduced flexibility in my spine.  I cannot wear a bra because it hurts severely to do so.

Which is these is probably:
Costochodrotitis (seems long for this diagnosis and doesn't seem to explain GI or neurological issues)
Vagus nerve damage
Nerve damage or other neurological disease (hopefully not ALS)
Myofascial pain disorder or fibromyalgia (but these are not really explanations, just symdromes that encompass many of my symptoms)
Hypothyroidism (conflicting information online on whether the TSH level test rules this out or not)
Weird anxiety disorder manifestation (only one panic attack, first one ever last year during MRI.  I am apparently very claustrophobic)


I've tried various drugs to help with pain like gabapentin and even tramadol and soma /various muscle relaxers and they do not help much. I get worked on by physical therapist once a week plus go to the chiropractor.  If I get too stressed, fatigued, or depressed, my symptoms get worse (I have "flares").  I can't seem to lose weight which preceeded the onset of my illness even when I ate as little as 800 calories/day.  I have not been on any diet except gluten free since I've gotten sick and I cannot identify any food or supplement or drug that I have been continually taking since the onset.  I've moved homes since the onset, so the only environmental things it could be are crazy things like pesticides or the water which seems unlikely.  I am sedentary and was for a couple months leading up to the illness.  I sit for work (but standing feels worse).

I went to the ER once after I was writhing in pain for three days straight in bed last August.  The morphine they gave did NOTHING for the pain (first time I've had morphine or been to an ER, felt crazy during the injection).  I felt a little loopy, but literally didn't help with the pain.  The muscle spasm/knot that I believe caused the majority of the pain finally released after several months of 6-8 level constant pain after taking a muscle relaxer called Lorzone, but it has not gone away entirely.  I have been having 6 level pain everyday for the past three weeks.  I find it difficult to bathe, dress myself, make food, or do any chores of any kind.  I am highly educated and have published many scientific articles, and this is greatly impeding my ability to run my lab, teach classes, etc.  I have to sit during lectures on some days.  I've done a lot with my life in a short amount of time so this is atypical for me.

I am 31, F, 155lbs and have no hope.  I am scheduled to see a neurologist next but am not expecting much.  I believe I will schedule an appt with a rheumatologist also.

[stephanyah]

Thanks for the help and validation - I haven't done the rheumatologist yet but that might be the next step after neurologist if I can stand to get more tests done.  It's so hard to keep going back over and over for painful traumatic tests and have them keep shrugging and saying it's in my head like you said.

[Kim2770]

I re-read your post and have a little more. Definitely sounds like you need the rheumatologist. Also, problems standing makes me think autonomic nervous system issues. Mention that to the neurologist. Don't say panic attack because they will agree with you and stop looking for anything else. My opinion, problems with MRIs are completely normal and don't qualify as a panic attack. Many people have to be medicated to go in closed MRIs. I think you also mentioned weight gain. That can be an autonomic nervous system problem. I'm going through it now. It is tied to my fainting when I  stand up and nausea. I ended up with an electro-cardiologist and pure autonomic failure. Suffice it to say I'm a mess but finally on the right track. Don't give up. Good luck.

[Kim2770]

Shot in the dark, but have you had anyone run rheumatology bloodwork? Specifically, is your ANA positive? What is your SED rate? I had a bunch of things happen to me and was diagnosed with what I call 'hysterical female syndrome'. Eventually someone ran rheumatology panels on me and I had a couple of autoimmune diseases. No fun, but better than being told it is all in your head. I was put on meds and am more functional now. It won't be a good diagnosis, but it might be an answer or rule more stuff out. Good luck.