The name of my monster

I’ll try to keep this brief and would appreciate any input from people, especially those with similar symptoms who perhaps found a diagnosis somewhere down the line.

Background on me: I just turned 24, I’m a final year med student and I’m set to graduate may-june of 2016 (God Willing). I used to be pretty active, take very long walks, go kart-racing and loved any sort of vigorous activity.

About 18 months ago, I started having recurring lower back pain on exertion. Things like doing dishes, picking things up and putting them away, walking for 15-20 mins etc. It wasn’t regular pain like the sort you get from a muscle strain, it was of a very different character. It started off sharp and then tapered into a very dull gnawing ache in my lumbo-sacral region but it would be relieved by rest.

About a year ago, this pain was no longer “recurring” but rather a constant ache that I classified as either “tolerable” or “intolerable”. I had trouble doing the simplest things and i couldn’t walk or stand or even sit for too long. 6-7 months ago this was followed by tingling, numbness and heaviness of my right lower limb along with very obvious weakness.

Today, my pain is always at a level 6-7/10 on the severity scale (hence it has now become the new 1-2/10 for me since my scale doesn’t have a ‘no pain’ number), I can stand/walk about 7-8 minutes before the pain becomes severe and I get a limp within 15 minutes which becomes more and more pronounced the more i have to walk/stand. Along with this, my leg also gets numb and heavy and eventually, becomes nothing more than dead weight that I have to drag along.

Seeing as how I’m in the medical field, I diagnosed myself with having a prolapsed disc or some other sort of lumbosacral pathology with nerve impingement leading to sciatica. The pain was unrelenting so I got an LS and pelvis MRI and it showed a very mild annular tear with broad disc protrusion and some very minor degenerative changes in L5-S1. We were told by multiple doctors that we consulted that these changes were quite insignificant and didn’t at all explain my symptoms.

This last week, I went to an excellent ortho who noticed that my clinical examination signs and description of symptoms warranted another MRI, this time for brain and full spine to rule out multiple sclerosis. My sister is a doctor and I myself knew this was highly unlikely and the doctor was just being thorough by admitting me and seeking a neuro consult. The neuro also believed it was highly unlikely but wanted to rule it out anyway. I was excited because I thought that even though i was sure it wasn’t MS, this MRI would show us what it actually was and the mystery would be solved. But I wasn’t that lucky.

The MRI came back unremarkable. I should’ve been happy like my family was, but I wasn’t. The neuro told me that it was “nothing” and I knew she meant there was nothing neurological but the tone in which she said it made me think that now I had lost credulity with professionals because they couldn’t find a clear medical explanation. I often given this analogy that “if there is a monster in my house that i can’t get rid of, I’d rather know where it is at least”, which means that since i do have pain and it’s not going anywhere, I’d at least like to have a diagnosis or give a name to the monster.

It’s very hard for me to get narcotics because no one wants to give a 24 year old narcs and if I hear one more doctor tell me to take an NSAID and “not jump to heavy pain meds”, I will tear my hair out. It takes about 120mg codeine for my pain to be influenced at all. Even morphine shots don’t take the pain away entirely anymore. The last time I remember being pain-free was the first time I got a morphine shot a few months ago and those magical 40 minutes showed me what a pain-free existence was like because I had forgotten. There are people out there, majority of people actually, who live in that bliss almost everyday! and they don’t know how blessed they are!!

My previous semester at med school was awful because I had to be sent home or had to go to the er multiple times from pain exacerbation. Ward rounds became torture to me because by the second bed we’d go to, my body was done and I can’t even begin describing how difficult clinical examinations were. I was almost not allowed to give my exams because of my attendance (even though the days i missed were mostly times I was sent home by doctors because of how pathetic I looked dragging myself along, using the wall for support with pain-glazed eyes). Thankfully I gave my exams and got through the semester and now I’m on to my last one which is going to be brutal and mostly on my feet, and I have no idea how the hell to do this. I can barely shower without needing to take rest afterwards and little things like combing are now an ordeal.

I want this monster gone.

4 thoughts on “The name of my monster”

  1. Hi Sam!

    Wow that sounds familiar. I have had this kind of back pain since I was 14 or so (I’m 21 now), and completely understand your frustration with the diagnoses (or lack thereof). The amount of doctors who have told me that based on the MRI’s and x-rays and CTs, I “shouldn’t be in this much pain”. The kind of cant sit/stand/lay for more than 3 minutes without breaking down, cant bend over, serious leg pain, etc etc thing that it seems like you have been experiencing too.

    I have attempted every sort of injection/nerve block that you can imagine. I have dealt with the utter bullshit of being told I just need to “try PT again” at least six times– the last PT person I saw told me “Wow your core and back muscles are insanely strong! Have you done this before?” Thanks buddy. I’ve gone from person to person with no hope.

    I also have head and neck problems, unrelated to my back issues. But, since I’ve dealt with these since around 14 as well, I have learned to push through my pain to allow me to exercise a bit still. This has obviously been unsustainable and probably highly detrimental to my body, but I go insane otherwise. Recently, I became very grateful for this. Perhaps two years ago, I had a bad crash at hockey. I was in so much pain afterward I could barely move. I could not put on my own clothes or bend at all. I gave it a little time, and it was slightly more manageable within a few weeks. But, my pain continued for the previous two years worse than it had ever been. Back to the doc, and I was put back in a new PT place that made my pain significantly worse.

    Enough was enough. I went to a new doctor that my dad’s back doctor had highly recommended. Updated MRIs and a Xrays and it turns out my back was significantly fractured since the last MRIs and the disc herniation was much worse. I WAS SO HAPPY! A real diagnoses. Something tangible! Im getting a fusion surgery and disc replacement soon and I am just praying it works. Hopefully will be at Med School myself in the next few years and would love to not be dealing with this anymore.

    There is a doctor out there who WILL take you seriously, I know it. Im sending you all the best wishes I have. Thanks for sharing your story.

  2. Your story reminds me of my journey….I too worked in the medical field, but I am older than you. My biggest mistake was listening to the surgeon who talked me into a three level cervical fusion that ended my career and disabled me for life. But I too had some of the same back issues as you and after going to numerous doctors, I was blessed to see two of the top neurologists at UCSF and they did an extensive work up and also a long three hour interview. After all the tests, X-rays, MRI’s, came back including ruling out MS I was diagnoised with peripheral neuropathy and small fiber neuropathy. I highly recommend you go to the neuropathy association website and research there. Their are over 100 different types of neuropathy and one in three people have some type of neuropathy in their life. Your symptoms are very similar to mine and although you are much younger I have met many young people that are afflicted with this chronic disease. Good luck and keep us informed.

  3. After reading your story, I found a sense of relief that I am not the only young person going through this. I am 21 and I swear every person I talk to is in there 40’s and up and is in a completely different place in their lives than I am. Anyways I had scoliosis since I was 13 and last May my surgean convinced me to have a spinal fusion surgery to correct it. For a year and two months now I have been in unbearable chronic pain. Just like you I can’t walk or stand for long periods of time. After showers I have to lay down because my lower back starts spasming. I commend you for finishing school in that much pain because I know how difficult it is. I tried going back to Penn State for my junior year and went home after 3 days because I was on the floor in tears from the pain and didn’t know what to do. I have literally tried EVERYTHING. I’ve had X-rays , MRIS, cat- scans etc. and all the doctors say my surgery looks remarkable… It makes me go insane. Clearly it’s not remarkable if I am in this much pain. I’ve been to probably over 40 doctors at this point ( I lost count). I’ve tried trigger point injections, acupuncture, massages, prolotherapy, manipulating the muscles, physcial therapy, Aqua therapy and more and nothing has had any long lasting effects. I have lost hope and I am beyond frustrated and upset. I try going out with my friends and wind up sitting in a corner because I can’t stand up to dance or enjoy because of the pain. I can’t drive more then 20 minutes. It’s breaking my family to watch me go through this. I am going back to school in 3 weeks because I am not missing my senior year but I honestly don’t know how I am going to handle it. I am going to see a doctor that does Botox injections to see if maybe he can help stop the spasms in my back. Trust me I know what you are going through and I am so sorry. No one deserves to live in constant pain especially so young. Keep in contact and let me know how you are feeling or if any treatment helps. I am looking for any kind of answer and I am sure you are as well. Also I wouldn’t stop searching for a doctor until you find one that can help you! please give me some advice on how you are able to get through your work in pain. I start my work and usually end up rushing through it because I can’t sit any longer. I am also a protectionist which doesn’t help things. Hope to hear from anyone soon.

  4. I can solve your problem. I know you don’t believe me and think I am selling something. I am not selling anything. Just listen to what I have to say. I am a 36 year old lawyer. At 24 I developed pain in my upper back that would not go away. It was manageable. Pain fluxes between 2 to 8 out of 10 at all times. This lasted till I was 32. Then all hell broke lose. Something happened to my low back and pelvis (posterior torsion right in right they called it). I found that good osteopaths could fix it but then it would ‘click’ back out of place next day. Pain was 10 out if 10. I could not walk for 8 months. Was seeing surgeons. Then…. I was always active before injury but had stopped being active at 32 because of injury. I couldn’t walk or sleep… How could I be active?!? I tried Pilates, seeing personal trainers… Nothing worked. Then I met a trainer who changed everything. This guy was a prick but he taught me how to pump iron properly for my injury. You are not a chick… Pilates will not help. You need to pump iron properly three times a week!! You also probably need to change your diet. I just went for a 5 km run this morning. Three years ago my wife was helping me from the bed to the bathroom.

    Unless you have a clear bulging disc problem on Mri do not go to surgery!!!! Surgery usually only works on clear obvious problem. Strengthen your muscles properly and the joints are supported. You have been slaving away over a desk for med school for 20 years and that blew out your back, hip or whatever (where pain represents is often not the source of the problem). Mental pressure also incredible in med school. Find a trainer who puts your lower back in stable position and then ask yourself why you can pump 200 but not walk to the bathroom. One final point… Being a doctor puts you at a disadvantage…. You are going to have to forget what you think you know and explore less conventional (non drug) options.

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