SpineUniverse Community Advice
Get help and share your story with others who know what you're going through.
Please register or log in to join the discussions!

Jumping in ... Or hobbling forward

Started by cwillylast0 on 03/28/2016 11:23pm

Hi! I just joined this forum; I found it looking for a correlation between pain and thoracic hemangioma. (I have a moderate one at T7.) My issues: large cervical osteophyte at c6-c7. Disc herniations from c4-c5 down, Some lower level herniations in T-spine, L-spine hasn't been spared at any level, but L4 &5, S-1 are a mess. Of course benn dx with stenosis and degenerative disc disease and peripheral neuropathy.
Other musculoskeletal issues: 2 full thickness rotator cuff tears with bicep tendonosis (debrided and repaired, but pain returning) right shoulder instability, right knee surgery , carpal tunnel surgery (failed,) left elbow injury with chronic pain, shin splint-type pain, plantar fasciitis and heel Spurs both feet, synovial repair on r thumb. Constant pain and stiffness in both hands, but any body part can decide to join in at will. Had a dx for RA at age 21, but rheumatologist wasn't seeing any malformation in the joints, so his last "guess" was palindromic rheumatism. I took massive amounts of NSAIDS for over 20 years to stay off the opiates. I finally caved about 10 years ago, but have been on pain mgmt for about 8 years now. The NSAIDS contributed to GERD, and a GI bleed in 2010 took me off them, although with the recent punitive pain mgmt professional climate, I still take them as a last resort.
I've seen several rheumatologists in the last 4 years, yet the 68 ESRs and positive ANA results haven't yielded any real dx. The latest one is clearly thinking sjogrens, but won't even prescribe eye drops for my painfully dry eyes (I want to tear them out at times.) The GI bleed, hiatal hernia is still looming with further surgery. I have post cholecystectomy syndrome and long acting opiates set off gallstone level colic episodes. I spent years going to chiropractor, acupuncture, 4 days a week at the gym, natural solid nutritional therapies, psychotherapy, all out of pocket. A divorce cost me the ability to pay for those "luxury" treatments. I am on permanent disability and fighting to pay for glasses - eyes are pretty bad and wearing glasses from 2001 since contacts and newer pair of glasses disappeared in October while moving.
My crowns are falling out, teeth chipping, and have frequent shingle-type episodes. All since January of 2014. I was doing my thing, taking care of myself within a limited income, happy at pain management had gained a healthy weight, ran up the stairs, had artwork displayed locally and was starting to write again. Then the medical industry in the OC decided that poor people on pain pills needed to be treated like drug addicts. My healthcare case manager begged me to change plans because "they" were going to do something awful.
Ha ! What the ... I mean really what on earth could she mean? But it took from December of '13 to March of '14 for a change to kick in. It took just 2 hours to figure out the something terrible: my new pain management doc on January 4, 2014 prescribed the fentanyl patch. I had taken an oxy that morning, and two hours after applying the patch, I was crying and running out of Walmart in excruciating pain. The docs instructions to let him know of any problems probably had his office in stitches, laughing at how they fixed those low life drug addicts by giving them 1/4 of the usual dose that was laced with naltrexone, which puts one into intolerable withdrawals. My long-time pharmacist advised me to change docs. Haha. I got labeled a drug seeker since the fentanyl had me in the ER with gallstone level pain (plus I am allergic to ultram, but told them to prescribe it, in case my allergic reaction before Was caused by sitting on the stoop talking to my then-doc , since he gave me the samples and I took them while we chatted. .
I developed the plantar fasciitis combo almost overnight and gained 20 lbs in almost the same time. Eventually, making my way back to the original pain doc(I only left him because of the long commute in a stick shift.) He put me back on my melds that worked, lower dose, but hey I always had some left at the end of the month and didn't have to refill like clockwork. When he couldn't justify more than the 8 spinal epidural injections I had received, I was passed to a PA who first wanted me to start the whole what-doesn't-work therapies, once more. She finally gave me 5 extra pills for my monthly so I didn't have to struggle through the already under treatment 5 days . That was her parting gift to me, plus she finally took the copies of all my carefully documented, supportive imaging I collected for years. I had brought them in a notebook for months and she wouldn't give me the courtesy of taking them.
So, second visit to new, replacement PA. First visit, sweet as pie. Last week, told me she was reducing my dosage and criticized me for turning down all her once again, been-there, done that suggestions. Yeah, I will go into convulsions before I take anymore poisonous gabapentin that makes me pee my bed and swells my ankles. Another GI bleed could kill me instead of coming close if I take NSAIDS. I have ENT and ophthalmologist to see, and mammogram and chest X-rays to have done, and no car. I've had a headache for 4 months solid, and could be linked to a traumatic brain injury from 1990. I've been weaning myself off of CNS drugs since something wasn't mixing with the TBI. Oh, and I'm trying to research and write a book about surviving the measles and encephalitis at age 30 with all the outbreaks on the rise.
But this woman, who is under a restricted license for lying about, or to be fair, failure to disclose a DUI she got, when applying to practice in California. Now seriously, what can I do other than file a complaint? Her ears are deaf and her ego intact. She can send me back to February 2014 when I finally got why some people commit suicide when chronic, untreated pain overshadows the joy of living. Surgery is not an option. Primary doc is trying to get me into the gym and the orthopedic or neurologist, cuz, heck, my arm is going numb and feels like the rotator cuff is failing, but I have nothing else going on but appease someone with time wasting and dangerous or therapies I cannot afford.
Anyone out there with real suggestions on who or how to make this right? 2nd opinion will take months, I'm told!

Best Responses
There are no responses to this discussion.
Do you find this discussion helpful?