Need help safely developing/maintaining spinal strength while body diseased
This is a long-winded post. I am concerned about my safety since I am suffering from a neurological disease and cannot maintain the best of form when using my body but I still want to maintain strength to prevent atrophy and permanent neurological damage. I am thinking the safety squat bar might be helpful since I have extreme difficulty racking a standard barbell unloaded, but I want some advice. I can squat with my bw, it's just painful and hard after several repetitions. I have substantially low bone density on my spine and I am trying to rebuild it and prevent further loss.
So it's been years since I've been on here. 5 years to be exact. During that time, I peaked in my physical fitness after dropping cardio completely at the advice of forum members here (thank you if you're still here). This was around 3 years ago in 2016, with my bw floating around 165 lbs, even my job had a decent amount of cardio. I went to a routine of 405 lbs. on the barbell for deadlifts for triples for 8 sets. My numbers got lost on an old phone, I've stopped lifting and have been unable to lift anymore so I forgot my last exact weight. My squats were above 320 lbs. for 5x5 and they were ATG, low bar, with no belt. My bench finally got to 225 lbs. for my 5x5 routine but this was very inconsistent compared to the other lifts as was my press (I could not maintain SS weight add-ons and some workouts had to descend and climb back up again). The general public thought I was a "bodybuilder" or on steroids, as they do with most people who do the right lifts with a loaded barbell. I attempted the SS method around 2013 at the advice of a friend after developing stress fractures doing running for a US Naval Special Warfare enlistment program. I planned on USAPL competitions by the advice of multiple competing friends once I got to five plates working sets on DL and four plates on squats and also oncce I started maxing out on a regular basis (I was using the gym as more of injury-prevention program than as a sport, doing PL competitions would require a lot more maxing sessions and max focus). I was working on applying to several police departments to live a more active lifestyle to prepare for a possible military career in 2016 when I started coming down with basically whole-body neuropathy.
It started with stinging forearm pain after workouts and calf cramps that were waking me up on a routine basis, extreme charlie horses that would bring me into 10/10 pain out of my sleep. My upper body strength was generally lagging behind, my press was a hard battle to get to 135 lbs. 5x5. Then it turned into vague numbness in my hands in fingers, then burning in my feet, then weakness in my upper body on my presses, then horrible back pains, then horrible non-stop 24/7 burning and numbness all over my body, horrible choking and swallowing problems, visual changes, waking up choking in my sleep every couple of hours. Of course my primary care doctor was clueless and sent me to a neurology specialist who couldn't come up with anything more than my psychology was responsible for my symptoms, yes they dismissed me for psychiatric evaluation. Further investigation found average entrapments in the thoracic outlet, which after several physicians and tests, I had surgery on both sides which did not relieve my bilateral brachial plexus neuropathy. During this time I saw several neurologists, most disregarded my symptoms since I looked very healthy and am in my 20s so I did not fit any particular risk category for disease or neuropathy (this is typically an "old person's disease" or gets treated as such). Within four months of having an accident while doing decline barbell accessory work (I dropped it on my head and almost died, lacerated head so bad you could visibly see my skull), I could not physically return to the gym anywhere near normal. I could not physically rack the barbell in a squat position (arms would literally go numb and weak, cramp into 10/10 pain, trapezius and back muscles would spasm). I would drop the barbell as a result despite forcing myself through the worst of pain and cramps. Even when I was able to force myself to squat, my legs would turn into jelly, feet would be on fire, back would feel like I herniated a disc at every level. The press even with a unloaded barbell became near impossible and I developed dysautonomia and nearly passed out with the bar at full extension, similarly this happened after doing deep squats and deadlifts and cause a lot of dizziness and inability to recover properly. It was like reality was turned upside down, like something horrible was brewing in my nervous system.
While I previously went to several surgeons for my upper-body symptoms, I eventually I saw a prominent spine surgeon who guilt-tripped me once he learned about my workout history and was convinced I had wrecked my back from my five years in the gym with squatting and deadlifting while complaining of sciatica, this was before any MRIs were done and he was nearly determined what the problem was and prepped me for the strong possibility of invasive spine surgery to fix this. When the regular lumbar MRI came back clean, even going as far as to say my spine looked very healthy by the reading radiologist, he was even more interested, as he could physically replicate the severe pain I was having in my back by a single finger, almost exactly like the symptoms his patients with MRI/surgically-proven herniated discs have. I toiled around with him and other specialists and they proposed more somewhat futile surgeries and invasive procedures. Finally, I found a world-famous radiologist who does primarily MRI and nerve imaging close by my hometown in Texas after I started taking healthcare into my hands and deciding to call the shots of who I would see (self-refer) and what tests I would request, etc. etc. I made the right choice; this doctor immediately discovered with advanced MRI technology that focuses on peripheral nerves that my spinal nerves looked like cancerous tumors, were grossly swollen, and I was in need of an extensive neurological work-up with a wide differential ranging from Charcot-Marie-Tooth disease, perineuriomas, lymphomatosis, CIDP, and vasculitis just to name a few things. Several admissions to the hospital later, new scans, bloodwork, a final diagnosis was not found, but they did know my nerves were swollen (all of them, brachial, lumbar plexus, thoracic, cranial nerves, everything, like basically this was the shit I was looking to find for years) and it was a neurogenic problem a neuropathy basically.
I made a valiant pursuit. I traveled to three other teaching hospitals including Mayo, in desperate search of what I had. I researched everywhere online, talked to people with similar diseases online. Biopsies were taken of everything but the large fiber nerves (nerve conduction studies were inconsistent, so no one knew what nerve to take and the ones that did find problems didn't have surgeons that did these complicated biopsies close to the spine). I pursued my old GI history, other specialist departments, contacted neurosurgeons, cancer specialists, neurological specialists, ophthalmological specialists, just about everyone for any system that likely had manifestations of this disease.
I had discovered I had a gluten allergy during a serial investigation of possible celiac disease causing my current disease. I most likely have NCGS and I have apparently the "genes for celiac" but never had any tests show celiac antibodies and had x2 endoscope biopsies come back negative for celiac. This was likely holding me back when I was younger as it was keeping my bodyweight around 165 lbs. during my late adolescence and adulthood and keeping me from growing in the gym. I would have daily diarrhea attacks since I could walk as a child. Further allergy testing yielded a ton of possible food allergens usually with mild-to-moderate skin prick reactions that proved effective in practice with changing my diet, unfortunately cow's milk being on the spectrum. Yet all of this stuff did mild improvements for my body and pretty much turned into jack shit for fixing my status quo problem. I brought this up because maybe some of you out there have mysterious GI issues that have not abated with reasonable dietary changes and this could be holding you back from growing in the gym or potentially leading you to a horrible disease like CD or CD neuropathy.
It become obvious to my current treating specialists that my nerve abnormalities may be due to an inflammatory-mediated condition, so they started high-dose corticosteroid treatment. I requested a DEXA and they found I have a t-score in lumbar spine at -4.0. Everything else was less than 10%. I am thinking the primary reason I am here is to try to see if there is something I can do as close as I can to SS loads to increase bone density in the spine, no matter how "babied" it is. I lost all of my equipment and barbells, I abandoned my power rack and weights as I physically couldn't keep up with them when I moved. I am considering trying to acquire a safety squat bar or find a gym that to try to do squats, but I still have a lot of pain squatting and I don't think I can't safely maintain thoracic extension and deadlift form with this disease because it has jacked with my nerves so much. Has anyone encountered someone or rehabilitated someone with CIDP or full-body neuropathy and been able to help them maintain bone density and at least some strength to where they could recover substantially if the illness went into remission? Thank you. Doing nothing is just not acceptable, even if I am horrific pain as the muscles are just going to denervate and get weaker and lead to permanent, irreparable damage. The "management" approach as everyone here probably knows is just pain drugs and sitting around 24/7 rotting waiting all day long while the people that make $ decide what they want to do.