Feeling at my wits end with Chronic Pain and Fibromyalgia

@sueinmn you are parsing on semantics here. GF sensitivity is definitely helpful for FM patients, but so is not eating sugar and simple carbs because they also cause inflammation. So, it’s diagnosed over time. It took me a year to be diagnosed after 10 different specialists. A true FM syndrome would remain even if you are on a low carb, no sugar, no gluten diet. It would probably not be as painful, but it would be underlying. I mentioned misdiagnosis because doctors know very little about it, and are quick to give up and just say idiopathic pain, Fibromyalgia. A catch all.

@jeannesf1 I’m so sorry! STUPID doctors don’t know a darn thing about how to wean off psychotropics like Lyrica and Cymbalta! It only take less than a month for these drugs to REWIRE your brain. So going off them cold turkey or too quickly has SIGNIFICANT and sometimes SEVERE side effects which may or may not eventually resolve! I was in a Cymbalta Facebook group 10 years ago where people warned me about it and gave detailed instructions how to carefully titrate off it. It took me an entire YEAR to safely get off Cymbalta and another year to get off Lyrica. Well worth it. My brain came back to life and I could remember my best friend’s name again. These drugs are not meant for long term use. They work for a time then it isn’t as effective. By then, your brain is oatmeal. I take Tramadol and Prozac. If you get off those drugs, Google gradual detox for them!

@fmcfs I feel so damaged. I’m so upset . You made something very clear that I couldn’t manage to figure out or research on my own. If you look at my phone under notes, and texts created for different subjects so I could remember everything. I still get scared from cognitive things I should know and struggle to remember or have to learn how to do again. Throughout this fibromyalgia journey I had 2 different insurances. I had many many doctors. Of course neither of those were specifically or close to being trained on fibromyalgia meds. NOT ONE DOCTOR EVER cared to know how long I was on these meds and just kept prescribing them. Never suggesting I could or should get off. And I was only taken off Cymbalta because I REQUESTED IT and was given instructions for getting off in 2 weeks. Thank you for your enlightenment it means a lot. It’s not just brain fog, it’s these drugs too being administered without a care for the patients brain. Will I ever regain what I’ve lost? I feel like my IQ was cut in half.

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.

@sandytoes14 I am so sorry to her about the pain you are in. Obviously the pain meds you are on are not helping if you are not able to eat or sleep. What type of doctor do you see? What I mean is he/she a neurologist, rheumatoligist, primary care? Have you been on Gabapentin or any of the meds for nerve diseases? Have you had water therapy? Would you be interested in medical marijuana and would your doctor be with you on it? I am putting things out there. I don't know, but pain kills our desire and our ability to live or love life and there has to be something that helps.

Someone mentioned Gabapentin! I imagine it may help some people. However, I had an extremely horrible experience with it, as well as did a couple of my friends who fell and injured their selves while taking it.
My surgeon prescribed it along with a couple other pain medicines after rotator cuff surgery. Originally, I didn't take it because I was on so many meds, I had to write down every pill I took so that I would not OD. Later, I was still experiencing a lot of pain and read up on the Gabapentin. It sounded great! Started taking it for about a week. I am an older lady, and my memory is not what it used to be. But I started having frequent, severe memory loss problems. I would forget words while I was talking and couldn't complete my thoughts. It was scary! This went on for a few days. When I started investigating possible reasons for the memory loss, it became clear that adding the Gabapentin was the only thing different. Sure enough, memory loss was a potential side effect with it. Stopped taking the Gabapentin, and almost immediately, my memory returned to normal. Since then, I have become vigilant about reading up on ALL new medicines suggested by my care team. I only read info on the internet posted by the Mayo Clinic and Cleveland Clinic. It is ridiculous how many horrid medicines they are suggesting and getting mad at me for refusing to take them.
My care team prescribed Norco back in 2000 for severe pain. Have used it on and off since then. During my best times, I only took 5 mg, twice a day. It took the edge off the pain, allowing me to function with daily responsibilities. Last year, I voluntarily quit and went back to work. When I got injured on the job, through no fault of my own, my care team refused to prescribe Norco for my almost constant pain. I have several reasons for the pain, and it is only getting worse since I am now 75 years old. Mind you, I had absolutely no side effects from the Norco and functioned very well and knew how to manage my pain when I over did it physically. Now my care team offered Buprenorphine patches, and I am trying them. Am on the second week. They slowly adjust it until they find the right dose. I have had absolutely no pain relief, and more upsetting is the fairly low-grade headache, almost daily with no relief. It wouldn't be a problem except I have been in constant almost unbearable pain since this last January. I certainly sympathize with all of you out there. Most of you have worse problems than I do. Back to the whole point of this post! Be careful with Gabapentin!