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Feeling at my wits end with Chronic Pain and Fibromyalgia

Fibromyalgia | Last Active: Apr 8 10:59am | Replies (315)

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@jmweissler

Hi. I am a 62-year-old male living on Long Island, NY. I suffered a fracture & spondylolisthesis @ L5/S1 in 1998 & had fusion in 1999. After the surgery the pain never went away & at times was worse. I started pain management in 2001. They gave me different meds that didn't work until I was on the maximum dose of both Oxycontin & Oxycodone. When that wasn't helping, they added Fentanyl patches until I was maxed out on that. Lived like that until 2008. In 2006 I had a spinal cord stimulator (SCS) implanted. I lived this way until 2008 when my family decided I couldn't live like this anymore. Went to The Hospital for Special Surgery (HSS) in June 2008. They did an exploratory. They discovered that the fusion failed, even though numerous surgeons told me all was fine. My exploratory turned into a 6-hour PLIF. Ten days later I had ALIF. They also removed the SCS. It was discovered that I suffer from a severe case of osteoporosis (-3.2). Rehab was tough. Felt better but not great. Was still on all the meds. I retired from my job on disability as I could no longer work. In April 2011, I started having severe pain. Back to HSS. A MRI was done and the diagnosis was a fracture @ L4/L5. Back in the OR & another fusion. In November 2011, the pain was worse. It was discovered that the fusion failed so I had a revision. Fifteen days later I experienced the worst pain so far. It was a cyst @ L4/L5. Emergency surgery. In January 2013, it was discovered the fusion @ L4/L5 failed again. Another revision. Did relatively well but still lots of pain until November 2014 when L3/L4 went. Had a good 2015 but in February 2016 L1/L2/L3 went. They fused T12 to L3. In December 2016, guess what, L1/L2 failed and another revision. Moving on to September 2018 when C3 to C7 went. Had 4 level Anterior Cervical Discectomy (ACDF). Please don't question my surgeon's abilities as he is one of the top spinal surgeons dealing with diseased spines and IT IS HSS! I have had 2nd, 3rd, 4th and even 5th opinions from some of the top spine surgeons in the US including The Mayo Clinic. This brings me to the present day. I have been having in pain in my lower lumbar and hips for months and it has escalated to the point I can’t walk my dog. Had an X ray taken and sent to my doc. He said my Sacroiliac (SI) Joints and right hip are completely shot. I did an Epidural Steroid Injection (ESI) & then RF nerve ablation. Followed by (after the proper waiting time) a series of 3 more ESI’s over 6 weeks as I need a week in between to go back on my blood thinners. The shots did not help at all. help. My surgeon has asked me to come in for a chat this week. We all know that when a surgeon calls you in, he’s gonna tell you that you need surgery! In addition, I have had 2 heart attacks and a mini stroke which is why I need to be able to walk every day. I have a Service Dog (yes, a real 1) to help pick up the numerous things I drop (due to cervical fractures), retrieve things and the best part, he keeps me smiling. As this disease eats my bones, I will eventually need a bigger dog to help with my balance & then later down the road, to pull me in a wheelchair.
My advice to all in pain:
1) Pain is here forever
2) Opioids will rarely help the pain
3) Go to the best surgeon even if you need to travel
4) Get a 2nd & 3rd opinion as this surgery will affect your life
5) Do any and everything possible not to have a fusion unless it is a must
6) If nothing helps, try marijuana (in legal states) as I have found that this is my best pain relief
7) Most of all, find happiness in anything.
Thanks for reading. I feel better already.
I am reading lots of posts and can’t believe how many people are hurting. Thanks Mayo for making it possible. If anyone has had SI Joint surgery, please let me know about the surgery, postop & if it helped. Thanks. 😊

PS – I got off all of meds at the end 2017 when I fell & broke my nose.

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Replies to "Hi. I am a 62-year-old male living on Long Island, NY. I suffered a fracture &..."

I'm so sorry to hear of your pain. You have certainly been through alot. I wish you well.

Hi Jeff @jmweissler -- I received your private message and thought I would answer it here so that others may also be able to share their experience if they have one. You were trying to located information on the recovery of open bilateral SIJ fusion surgery and were looking for other folk who have had the surgery. Hopefully other members will be able to share their experience. Here is what I found:

Sacroiliac Joint Fusion Recovery
-- https://www.spine-health.com/treatment/spinal-fusion/sacroiliac-joint-fusion-recovery

@jmweissler, Good morning. I just reread your post and want to thank you for including the medical document which requires a second or even third reading. When I concentrated on the elements of your advice, I felt that this was a "cut to the chase", "net it out" approach to treatment solutions. You gave kudos to medical cannabis. I have chosen not to use pain medications and only use medical cannabis. My pain is manageable most of the time and my zest for finding out what tomorrow will bring is present most of the time.

Would you be comfortable sharing your medical cannabis journey of discovery, experimentation, and acceptance? That would be helpful to many members who are curious or just plain ready to try it and are seeking information. It is not like just picking up a new RX.

My other inquiry is about your exercise program. There is a great video on the internet with a dog and its owner doing the same poses. Is your body able to handle very gentle yoga stretches? Do you use props of any kind? Do you check your spine alignment?

May you grab some joy today. Chris

Hi. I am impressed with your journey and your end truths about opioids. My question is did you have any mental issues after you came off the opioids? I had a horrible time.

After reading what hell you've been thru i'll never complain about pain i get ever again.

Wow - you have been through so very much for a very long time. I want you to know how much I appreciate your honesty. I have back and leg pain and do, at times, feel helpless. But what I am enduring is nowhere near what you have been through. I cannot take any kind of opiod meds because they make me violently ill so perhaps that is a blessing. I've had physical therapy twice, shots in my back three different times, and some meds. I've been advised to do so many different things and have to admit, I am really afraid to have any type of surgery on my back. Several friends have told me the fusion surgeries they've had have been very helpful. But I'm still at the point where I don't want to do anything drastic.

Anyway, I just want you to know how much your advice has meant to me. And I truly am influenced by your upbeat attitude. I am very grateful for your honesty. I hope you and your family (that includes your sweet service dog) have a most beautiful Christmas holiday.