If anyone, anyone at all for the love of God, out there has ideas or input, read this story and feel free to help in whatever way you can. I am a 35 year old white male who is desperately seeking even the small relief that can be provided just by knowing what to call whatever it is that I have. In advance of your reading this long winded history of mine, thank you for your time. And might I suggest you have coffee handy, I don't want to leave out too much. Take frequent breaks to avoid eye strain. Nutritious snacks wouldn't be a bad idea either. Keep them close at hand. Pace yourself.
My story begins June 06. I started having chronic LLQ adominal pain which has remained to this day. It waxes and wanes in severity but it is always there. Nausea is present the more severe the pain is. Due to previous history of erosive gastropathy, I was sent to a GI specialist who pronounced it IBS, although atypical IBS as my main presenting symptom is pain. No meds have proven effective in treating this.
Rather suddenly in Jan 07, everything changed. The LLQ pain was still there, but more problems piled on. Following 4 days of 101 degree temps (the only temps above low grade fever I have ever had this whole time), there was the sudden onset of tachycardic episodes and shortness of breath. EKG's normal. Walking across my living room became a chore and using the stairs nearly impossible.
After a week of that, suddenly joint pain + immense muscular weakness. The joint pain affects me symmetrically in my wrists, elbows, shoulders, hips, knees, and ankles, and as of today, my neck and lower back as well. I needed help just to get out of bed.
By mid Jan, I had to be hospitalized for a week. My diagnosis at discharge was IBS, probable fibromyalgia by the hospital's rheumatologist, and probable Postural Orthostatic Tachycardia Syndrome(POTS) by the staff neuro team. A month after hospitalization, the symptoms had only mildly lessened, if at all. Nothing seems to help. I was sent to DC to be hospitalized again the last week of Feb 07. When I left there, they said that I had dysautonomia (not POTS), postviral arthralgia (not Fibromyalgia), and IBS.
I then saw a Rheumatologist who said if it was Fibromyalgia that it would be an atypical presentation. He believes that I instead have some arthritic disorder and has ordered more tests.
I am overwhelmed by the elusiveness of any concrete diagnosis. Many docs have concurred that I have IBS. Okay with that. Whether it is POTS or dysautonomia, fine with that as well since they have given me no indication that enough is known about either to project if or when it will ever improve.
In the case of the joint pain, the jury is still out. No swelling is noted. When the pain flares badly, my hands and feet tingle painfully, akin to the sensation of the limbs falling asleep, only more painful. Muscular strength is present, but no stamina or endurance. Even light exercise or physical therapy requires days to recover fully. Loss of dexterity is worse when the pain flares significantly. Also, there is a curious loss of sensation in my arms from the elbows to fingers, in my legs from the knees down. When cold or sharp metal instrument is applied at the knee and elbow, I can tell they are cold and sharp. However, the farther down they go, the sensation lessens though I can still tell they are cold or sharp.
Until hospitalization in Feb, no labs showed anything out of the ordinary. Nothing even pushed the boundaries of above lab normal ref ranges. Neg for lyme or any infectious disease, Neg for neuro disorders, Neg for just about anything they could think of. No rashes. Nothing in any imaging studies. Nothing notable anywhere. During both hospital stays, the attending docs joked that I was like a House episode. The only tests that have shown anything at all are the following:
Lumbar puncture-slight abnormality noted in CSF
ALT + AST- above lab normal ref range at 81 and 38 respectively
Vitamin D level- pronounced severely vit d deficient at 11, although they cannot point to any cause for it. I have been told that the IBS may prevent me from properly absorbing it, or that the New England winter may prevent me from venturing out in to the winter sun to allow my body to sufficiently convert it.
Passive tilt table test- 30 to 40 bpm jump consistent with POTS
Until those test results, they kept trying to tell me it was all in my head. The only other consistent thing I have heard during all this since Jan is that no one doctor agrees with any other on anything besides IBS.
Please offer some opinion or insight if you can. In place of that, comfort or prayer would be acceptable. Sorry to drone on and on. Please forgive me, I did not intend to write this much. My apologies. Thanks again.