2.5 Years in Bed—Looking for Help

Hi, everyone!

It’s been a while since I last posted about my health condition and my doctors and I are still looking for more specific insight as to the source and treatment of my debilitating pain—maybe you can help?

SYMPTOMS

Constant, debilitating mid-, low-back, and upper abdominal pain and spasms.

HISTORY

I caught my family’s stomach flu and threw up violently in NOVEMBER 2017. While throwing up, I felt a sudden, excruciating pain in my upper left abdomen (just below the ribs) that was painful enough to put me in bed for 3 days.

I was initially treated for an abdominal strain/tear with modified movements, opioid painkillers, and muscle relaxants—none of which alleviated the pain (but I felt all the nauseating, drowsy effects from the meds).

In MARCH 2018, I reached with my left arm and instantly the pain in my upper left abdomen doubled in intensity and over months, gradually spread across my abdomen and toward my kidneys. Sitting up, driving, standing, walking, bending, showering, and getting dressed became incredibly painful and sometimes impossible.

In JUNE 2018, the pain subsided enough that I could walk and stand for longer periods, and even enjoy a water park with my family (though still with great difficulty).

In JULY 2018, the pain spread to my back and nearly incapacitated me. I pushed through as best I could, using a cane to help me through each day, until SEPTEMBER 2018, when the pain became so unbearable that I became bed bound, where I’ve been for the last 2.5 years.

TREATMENT/CARE

As of MARCH 2021, I have:

-met with 53 medical professionals (including GPs, gastroenterologists, physical therapists, rehabilitation specialists, functional medicine practitioners, chiropractors, rheumatologists, naturopaths, neurologists, spine specialists, abdominal surgeons, pain management specialists, neurosurgeons, allergists, immunologists, and sleep specialists)

-undertaken multiple blood and urine tests

-undertaken extensive imaging (including x-rays, CTs, ultrasounds, endoscopies, colonoscopies, full-body MRIs, EKGs, and EEGs)

-been prescribed more than 30 medications (including NSAIDs, painkillers, muscle relaxants, dopamine promoters, anti inflammatories, antihistamines, tonic water, nonergot dopamine agonists, ACE inhibitors, anti-epileptics, phenothiazines, triptans, sedatives, antidepressants, corticosteroids, Lyrica, Bactrim, SSNRIs, chemotherapies, immunosuppressants, and medical cannabis)

-undertaken dozens of treatments and procedures (including multiple steroid injections, rf nerve ablations, and sympathetic blocks, celiac plexus blocks, physical therapy, rehabilitation therapy, chiropractic care, bodywork, body care, pool therapy, acupuncture, micro frequency therapy, diagnostic injections)

-undertaken home therapies and treatments (exercises/movements, ice/heat, TENS unit, body pillow, supplementation, icy hot, essential oils, meditation, massage, back brace, cbd oil, medical cannabis edibles/sprays/cartridges, breathing exercises, extended water fasts, intermittent fasting, autoimmune protocol diet, low carb/high fat diet, time-restricted eating, one meal a day)

-been denied acceptance by the Mayo Clinic, Undiagnosed Diseases Network, Johns Hopkins University, UCLA, and other facilities

DIAGNOSES

Rheumatoid Arthritis (later redacted by rheumatologist’s NP)Mild sacroiliitis, spinal inflammation, transient synovitis, spondylosis, radiculitis, multiple broad-based disc bulges“Atypical presentation of something rheumatological” (rheumatologist)Possible fibromyalgia Possible AMPS (Amplified Musculoskeletal Pain Syndrome)Possible Mixed Connective Tissue DiseaseMild, widespread, generalized nerve painMild splenomegalyMild nonalcoholic Fatty Liver2.5 years of “bed head”

SUMMARY

I’m currently meeting regularly with a team of doctors, exploring dosing of new medications, eating a healthy diet, taking daily vitamins and supplements, engaged in weekly physical therapy, exploring the boundaries of my pain and range of motion, researching potential doctors/diagnoses/treatments, engaged in regular communication with online groups and individuals with or related to similar conditions, and continuing home treatments. 

The pain is constant and severe and is exacerbated by movement. Additionally, it can be difficult to think, work, and concentrate through the pain. I’m doing all I can to improve my health for myself and for my family. I’m anxious to be a more-involved husband, father, friend, and member of the community. I want to get outside and walk, hike, bike, swim, and travel. My faith, family, and friends sustain me, and I’m hopeful of improving my health. 

I don’t expect anyone to have the answers I’m seeking, but I think it’s worth asking about.

Thanks for any and all help you can offer!