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How is your daily life? How areyou doing now?

How do you cope every day? What are you doing? What can't you do?
I am 3 1/2 years post L5-S1 laminoforaminotomy. Chronic back/left glute pain 4 1/2 years.
With the exception of 6 weeks off after surgery, I've been able to work the entire time. I am an RN in a hospital setting. I have no trouble with working. I am finding my way back to consistent daily exercise, but it's a work in progress. On bad days, I just walk.
Activity always makes me feel better. My biggest challenge is sitting for any length of time. I have declined invitations because of this.
My pain is always worst toward the end of the day, which is when I turn to meds if needed.
I have spent the last few years looking for, and expecting, a "cure" and an end to the pain. I know now that's not realistic and frankly, it stinks.
I know we are all at different points in our journey, and started this thread as a sort of check-in.
How's everyone doing?


  • dilaurodilauro ConnecticutPosts: 9,865
    it is something that stays with you forever. Now , that doesnt mean in a bad way that , it just means we know we had it, have it and will have it.

    Our best defense is the smarter offense. There are so many modules that can be put together to help promote a manageable pain control program.

    Take a look at The Blend This works for thousands. Not exactly as outlined, but the overall concept. I just always say that if you are going to take up any of those items, discuss it with your doctor first.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Everyday is a battle with multiple pathologies and chronic pain. I hate to be a Debbie Downer, but that's the truth. As of recently, my medication only lasts an hour, if I'm lucky. So change is in the works, but as of right now I'm not doing too well.
  • Michelle99MMichelle99 Posts: 57
    edited 10/21/2015 - 9:48 AM
    Same, l5/s1 dicectomy and laminectmoy. Second surgery was in May this year. I too can't sit for more than 15-20 mins without chronic pain. Constant nerve pain especially in my right butt cheek and down right thigh, some days going down to my foot too. Sitting is a huge issue for me. I am back at work 50% and gradually moving my hours up. Walking is my best thing and I can walk up to an hour and a half in one go, up hills down hills with a few steps thrown in. I walk to keep fit and because my PT says it's good for me. Every step is painful though and sometimes I want to head straight back home, but I stick it out.

    I start pain management clinic next week, so hoping for some comforting words of wisdom. I know there are no miraculous cures and that this is probably as good as it gets. However, I find work good, it distracts me. Some days though I just want to be pain free and not have this constant reminder that I'm no longer in the 'normal' category. Although, some may say, what's normal? I would just like a day or two pain free, just to remind me of how it used to be.

    I wish you all well with your struggles.
  • The fact that you're a RN is very commendable with this kind of pain.

    Im 4 year post 2 surgeries, l4-l5 and disc herniation l3-l4 with a root block done last week. Im a medical student but I have not been able to start my residency because I am unable to sit for more than 30 min or stand for more than 20. Like most of us, I can walk unto an hour but have not been able to stay off my meds. It's affected my life a lot, derailing my path by about 4 years but I think it's made me a more empathic doctor. While Im unhappy that I have this pain, I think one day it won't go away but I will be able to conquer it and lead an active, full lifestyle without asking people if there is back support at the event :D

  • Sheri76Sheri76 Michigan Posts: 497
    I'm seven months post op from L4-5 laminectomy with fusion. I no longer have the excruciating sciatic pain in right leg/buttock.....So thankful!

    As time goes on, my recovery (mobility) doesn't seem to be improving enough for me to return to the custodial work I had been doing prior to surgery, and possibly indicating that's not a doable thing for me any longer. Time will tell where it will all go from here.

    So, physically, there has been improvement from prior to surgery, even though it may not seem that way to some, and even to myself some days, but over all, life is good. Mentally, emotionally, I think my post surgery bouts of depression are adjusting to a better frame of mind, and I'm feeling much better in generally most ways. I think I've struggled for many years with the whole aging process, so learning to adapt to some more physical changes is something I've been learning for some time, and know it's a continuing process of life.

    All you kind, compassionate, empathetic people here have made my life changes more tolerable in some darkened times.... I thank you all for being here and there.

  • I've been living with pain since my 20s but never looked for help until my 40s. My MRIs have confirmed herniations in cervical spine my lumbar...I have DDD spinal stenosis and tarlov cysts. I've done PT and more injections than I can count. No surgery yet, I'm trying to avoid. With all of this upwards of 7 pain, my worse pain is my thoracic at a 9 with no diagnosis yet. I have a desk job which is agony. I take pain meds and use a heating pad 24 /7 . I alternate seated and standing with heat and ice. Many days seated is worse.

    I'm not sure I've helped or answered questions. What I can say is I'm not on disability but the most painful thing I can do is sit at a desk, and that's my job. It's quite painful to live this way.

  • Kelz I'm so sorry. Sitting is my major issue but I'm lucky to have a job that keeps me on my feet. It's awful to be unable to sit. I have missed many events that require prolonged sitting. I have no answers. I wonder what research is being done? Chronic pain keeps so many people from being productive.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    My pain started when I was 8 years old. Now I'm 49. I've been on disability since 1992. I cannot even start to add up all the issues that keep me in pain. Walking, sitting, standing, everything hurts BUT, I feel like I'm living a valuable life. I get to do a LOT of things like learn new subjects, volunteer at new places, meet new people, all because sometimes I NEED to sit no matter who I have to sit with. Other times I need to just walk, or get up and stand.

    Until I started going to pain management in 2014 I was miserable most of the time no matter how positive I tried to be. Still, medications and different therapies can only alleviate about 50% of the pain but that is a blessing. After taking my meds then comes the nausea- and meds for that. But again, it used to be worse.

    I thought I had plans for my "life" but it didn't go that way. I'm not sure there are any people who say, "I'm exactly where I wanted to be!" I am hoping for continuing small improvements with treatments or therapies. I'm going to hang in there.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Today I saw my Pain doc. I really like him but as I found out last month, he's moving on in February. THAT terrifies me! It tells me how much I'm afraid of the pain because this guy, I tell him he's a child!, has made a world of difference in helping me suffer less. Although I am a patient in a large pain clinic I'm so afraid the other docs will not be as understanding!

    As I went to check in at the reception area today there was a situation. A man stood with his ear piece of his cell phone in one ear, his cell phone in his ear, his other hand gesturing wildly and his "wife?" sitting in the chairs right there. I tried not to listen but the words "Out of network" kept coming up. Apparently he was on the phone with the insurance company who was saying one thing, the Pain Clinic had been told another, and this man and his wife were not going to leave until they could be seen. There was a security guard in the back I could see. And I could feel the twist in my own gut. It could easily be me being told that my insurance didn't want to pay for me to not be in pain any more. I heard things like, "50 miles away from Massachusetts", and "Providers' network..." and I had thoughts of unremitting pain.

    My brain, of course, circles back to my own what-ifs. What if the docs who take on the patients of my current doctor choose to treat my pain in a different way? I have been compliant and done PT, meds, injections, had 2 surgeries..... I'm terrified of hearing, "Yes. We think you can just live with it." Mornings when I oversleep and the pain wakens me- I cannot get out of bed. But once I'm medicated I'm okay..... but what if I have to deal with that pain for hours on end?

    My meditative mind tells me that right at this moment all is well. My emotional brain is screaming- Have a PLAN!
    I seldom complain outright about my pain but if I had to live a few days with it again, not live, exist. If I had to lose all that I gained in the last year. I can feel hot salty tears welling up in my eyes. I could not survive living day to day in that pain again. I couldn't do it.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • First, I had a spinal fusion L4 L5, and I got MRSA. I was in bed a year, on lots of IV antibiotics and still ended up with osteomylitis in my spine. In 1 year I had 6 surgeries, the last one being a year ago. They finally fused me from L2 down and even screwed my spine to my pelvis for added support. The MRSA ate through my L4 and L5, so all that was removed. In 1 year, I took myself off Fentanyl and Dulaudid. I now take gabipentin, which I have almost cut in half, from 3200 mg a day to 1800. I take Soma 3 times a day as well as the gabipentin, and naproxin sodium.
    I am constantly in pain, but not as bad as it was, I am tired all the time, and really don't do much. I know I am anemic, and that may be a factor. I know in order to live my life to the fullest I need the narcotics, but I have been to two PM clinics, and I just can't deal. I won't be treated like a criminal by peeing in a cup and being questioned like I am a drug addict, and because of the MRSA nothing invasive can be done, but you can't tell them that. So I give up on doctors and hospitals. Thank goodness my son is a massage therapist. I would be living in bed if it weren't for him
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