Severe chronic back pain

yeah, I just said to the neurologist I saw for 17 years: "well, okay, if you can't do any more for me, I'll go home and just take the opioids. That was when he sent me to the Orthopedic surgeon. (I had been to so many p.t., and doctors you wouldn't believe), when I walked into my saviors office, he didn't even need to finish the opening salvo. He said "you need surgery and you need it quickly" I said "do it." I was in surgery in about months. They did everything at L3, 4, 5 . He could have done more but I was working and needed the mobility. I've had several more surgeries before and after - I just take them in stride. The point is when you keep plugging away you can uncover the best surgeons and have the best chance at the best recovery. They all take months and take your earnest commitment. There is no free pass.

I am sorry that you are having such terrible chronic back pain. It is so frustrating going to the doctor and they don’t seem to know exactly what is causing the pain & really offer no answers or relief of the pain. I had to change doctors & this last doctor had an mri, ct scan, all kinds of tests & they all appeared pretty normal. My pain was in my lower back & hip area plus I would have terrible aching in my legs & arms at night & could not sleep, then I started noticing my memory was not good anymore & then I started having aphasia (speech problems) & it was difficult to keep focus & I have had chronic migraines for 20+ years. It was so bad I thought I was getting dementia. My husband & family all could tell my brain function was not where it should be. I had to keep advocating for myself & doing lots & lots of research online in desperation to find out why I felt so bad all of the time. I could closely relate my pains to my mother who is in her 70’s & I am in my 40’s. I was desperate as I had been having issues for several years already & felt like I just kept getting worse. This was totally affecting my job that I have had for 25 years & I need to make it another 2 years for full retirement. In my research, I found that my symptoms matched fibromyalgia or long covid or both. My PCP had ruled out all other causes of my symptoms. I made an appointment with a rheumatologist who looked at all of my tests & ran a few more & he said he believes I have fibromyalgia as well as spondyloarthritis which he thinks is exacerbating my back pain. Since there is no test currently for fibro, it was basically ruling everything else out. & then I had to keep talking to my neurologist as the speech & memory issues were causing me so much anxiety with work & that my PCP recommended I have the neurologist do a fairly invasive test for early onset Alzheimer's. I kept being told by my PCP to see the neurologist then when I got there they told me no go back to your PCP. Thankfully my neurologist recommended I have a neuropsych test instead. It was a long 4 hour testing session to determine once & for all what the cause was. I finally got in to the 1 doctor in my city that does this type of test & her results showed I had functional neurological disorder including speech issues. Once I had the diagnosis for fibro, I was put on celebrex then also had lyrica added & though I am nowhere near being back to normal, it is so much better than before. I have been on several different meds for migraine. Currently on qulipta for the migraines & doing well on it. I also have to take tramadol & cyclobenzaprine daily. If I skip it or just try to use when I felt I had to, the pain got too bad. I don’t mean to make such a long post but I have had to go through A LOT to get where I am & feel like I have some kind of answers. Unfortunately this long post attests to the long journey & my frustration & desperation through the last few years & I just wanted to share it with you in case any of it could help you. I am now working with my doctor to get work accommodations for extra breaks, seating where I can be as far away from loud noise & chaos as possible because my workplace has loud music, yelling, bells ringing….it is a lot of times full-on chaos which causes me more cognitive issues. & my workplace has not been very helpful in making things better for me until i filed for accommodations. These conditions not only causes pain & cognitive difficulties, but it can cause severe depression & anxiety. I have felt many times that i was getting nowhere & that I wasn’t being taken seriously. If your current doctor isnt helping you find answers, find another doctor that will listen to what you are going through & will advocate for you. & do what you have to for taking care of your mental health. I sincerely wish you the best.

My back pain is mostly in that area-the very top of my right buttock. My rheumatologist feels it is ankylosing spondylitis. He had me get my blood tested & there is an HLA-B27 marker that can be an indicator along with your symptoms. I am constantly having to sit with a heating pad at work & alternate sitting & standing at my desk. I do currently take tramadol & cyclobenzaprine as well as lyrica & celebrex since i have fibromyalgia. Its better but definitely not gone. Hopefully your doctor can get you on something to better handle the pain. In my experience, these meds have definitely helped me & i have to take tramadol & cyclobenzaprine daily to keep it at least mostly manageable. But if I do too much standing or bending, like with household chores, it can flare up bad. I have found that i have to sit & rest a good amount of time in between chores to make it manageable. & i cant do almost all in one or two days like I used to. I get done what I can. Thankfully my 19 yo daughter is still at home at least for now & helps with a lot of sweeping & mopping for me. She will start school soon though so I will provably have to find a cleaning service or some other solution.

Please comment on how well the SCSs worked, how long they worked and did you have them removed. SCS is my last resort to pain relief from failed laminectomies and fusions from C-3 thru T-1 and T-8 thru S-1. Also Modic Type 1 in T-2 thru T-8. Thank you for your reply.

@howardbern55
Thank you. I, too, just found out I have a generic marker that can cause .y proble. I am waiting to get an MRI.

@suzfuse46 I have had 2 SCS implanted. In 2009 I got the St Jude model. Amazing company and reps were fabulous to work with. However no amount of re-programming hit the area I needed. It was also not MRI compatible. Had it removed in 2013. Went back to annual MRIs, always taking opioids, doing PT, the usual. I learned there was a SCS that was MRI compatible so in 2021 I had that implanted. It’s Medtronic. I use it pretty much every day (unless I forget to charge the battery). The SCS only “distracts” your brain from the pain. It doesn’t block the pain. It’s also really only for nerve related problems, it never helps with muscular pain. I think that’s a misconception. It’s like a TENS unit but inside. My peripheral neuropathy is horrible. My SCS distracts my brain from that constant pain because the nerves are “buzzing”….if that makes any sense at all. Both surgeries for the implanting of the SCS called for a laminectomy in order to fit the paddle lead in my spine. Both times, it was pretty painful. However, nothing touches the peripheral neuropathy so I am grateful for my SCS. I’m also glad I can still have MRIs with the Medtronic unit. I have great Reps that will meet me at my pain management appointments if I need any reprogramming. Both companies (St. Jude & Medtronic) are great. My SCS is now 4 years old so I’m sure technology has greatly improved. My issues are mostly at L4-5, S1. I have lordosis and kyphosis and disc degeneration, spondylothesis, and 16 tumors (benign) with nerves growing through them. Now I have drop foot on both left and right feet. I use 2 AFOs and cane, sometimes a rollator and occasionally a wheelchair. Best of luck to you. I hope some of this info is helpful.

@loriesco

You are brave and informative. I am going to pt and even in the same establishment, I have had to change the physical therapist. On Monday I begin acupuncture for lower back--arthritis resulting from ankle weights placed on me by a physical therapist who should not be in that business! After that I will go to my primary care doctor who is a rheumatologist--he may able to help me as I also have a pulled glute muscle. You seem dedicated to recovery and I hope it happens for you.

@frenchie218
Thank you so much for your reply. It's good to hear that SCS really worked for you and that you would have a second one implanted. I seem to not respond to EPIs so I hope the Pain Clinic doctors will let me try the SCS. May you continue to have good relief and be able to do as well as you do dealing with so many difficulties.

@suzfuse46 thank you for the kind words. I saw your post about your SCS. I do feel that Drs push this device on too many patients, especially ones that really DON’T need it (IMO/a good friend had this happen to her) I do occasionally have pain in the battery area, it’s sometimes because of clothing, but not always. My advice to others, don’t let anyone talk you into a surgery you aren’t comfortable with and definitely do your research. I have peripheral neuropathy as well as radiculopathy with so many symptoms (drop foot, burning, numbness, tingling, etc). I think the SCS does a good job distracting my brain from some of these symptoms. Clearly you’ve been through a lot. I wish you all the best and again thank you for your kind words.

Hi, I have severe lower back pain because of collapse of my lower spine, scoliosis and osteopenia, L4 & 5
discs for 2 years after lifting a very heavy table. I went off all pain medications, started Pilates at age 79. I
believe the Pilates and the lifting of weights has helped me strengthen my abdominal and back muscles.
I have returned playing back to tennis which was my goal. Try new avenues, one may work. Never give up.