Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Volunteer Mentor @sandytoes14, Mon, Aug 19 2:56pm

Usually I am not one to share much of my personal story but here goes…I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing…I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.

@rwinney

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

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Thanks. Open bilateral SIJ fusion scheduled for 10/4. Need to heat from Mohs & repair surgeries.

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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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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

Liked by Parus

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@johnbishop

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

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Hi.No problem. That article relates to minimally invasive. I'm looking for bilateral OPEN joint fusion. Very difficult to find as it is out of the mainstream these days, but due to my entire lumbar being fused, my surgeon wants to do open & both sides at the same time. Says it will be best for me structurally not necessarily pain wise or post-op rehab though.

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As a result of an accident my L5 was out of the stack by about a 1/3… In 1995, in Oklahoma City, a wonderful spine surgeon took about 8 hours to fuse L4,L5,S1.. using 2 plates and 6 screws…(they are still there)… the bone for the graf was from my hip.. I was in the Hospital 5 days.. back to work in Academia within a month and really have had very little problem since.. I am now 82 years old and can get around so much better than most of my peers… The surgeon cleaned up a bunch of arthritis and such while he was pulling that L5 back into the stack… Structural stabilization is the Key…

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@jmweissler

Hi.No problem. That article relates to minimally invasive. I'm looking for bilateral OPEN joint fusion. Very difficult to find as it is out of the mainstream these days, but due to my entire lumbar being fused, my surgeon wants to do open & both sides at the same time. Says it will be best for me structurally not necessarily pain wise or post-op rehab though.

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@jmweissler I think this is the one you are looking. I had focused on recovery in your question so I missed the open part.

Traditional "Open" Surgery for SI Joint Fusion
https://si-bone.com/si-joint-pain-treatment/traditional-open-surgery

I'm tagging @jenniferhunter to see if she has any experience or information she can share with you.

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Hi, Jen, I’m so sorry for the pain you are experiencing. You have been so encouraging to me and to others so I wanted to reach out to you. With regards to the opioids you’re taking I wouldn’t worry about becoming addicted, especially if you have taken them before and successfully stopped. They do help some people with chronic pain, myself included. I hope your pain becomes better, and I hope your husband has success with his spinal cord stimulator if he has surgery for it. Sending you prayers and good thoughts. 🙏

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@patrick17 Thank you for your kind response. Your message means so much to me. It's good to know I am helping you and others on Connect. 😊

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@ken82

I had an accident where L-5 was pushed about a third out of the stack…1995…a spinal fusion with 2 plates and 6 screws… pulled every thing back in place…harfware was left in place..bone from hip packed around vertebrae… I'm now 82 and have had really no walking or getting around problems since that surgery in OKC..they cleaned up around the fusion… really good spine surgeon.. I only took pain meds for a couple days after getting out of hospital…

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@ken82 I'm so glad to hear that your surgeries were successful and that as you age you are not having problems due to the fusion. There does not seem to be many people on here who share long term success. May your blessings continue!

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@lioness

@sandytoes14 I'm so sorry to hear the pain your in. I can only take Tramadol for my pain. Just recently I had horrible popping in my back still don't know what it is waiting for an MRI. Dr. gave me Percocet/oxycodone but didn't do a thing for me . I'm in back pain I take Meloxican for my arthritis did you ever try it. Its not fair to have all this pain is it. One thing that helps me is Qigong and Tai Chi have you tried any of this . Its on u tube . A hot shower helps when I hurt that bad. Ginger turmeric tea I have had 2 cups a day right now with back pain.

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@lioness I know I replied to you but gosh darn if I know what happened to it. Because I had gastric bypass in 2007 for weight loss, Meloxican and other NSAIDS are not on my approved list. It is said they cause ulcers in the pouch that has been created to hold a small amount of food. Trader Joe's Ginger Turmeric tea is good and I have been drinking two cups daily. Did you have the MRI yet?

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@sandytoes14

@ken82 I'm so glad to hear that your surgeries were successful and that as you age you are not having problems due to the fusion. There does not seem to be many people on here who share long term success. May your blessings continue!

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The spine surgeon (Dr. Odor in OKC)was brilliant in my estimation…How he stabilized the spine with those 2 plates and 6 screws as he pulled the dislocated vertebrae back into place was the key… Then a few years after that surgery I had pain problems from my neck down one arm… so I returned to him to see what to do… He gave me an epidural … and after a few days asked if that epidural helped with the pain… IT HAD NOT Helped…. so he said… You have "Cubital Tunnel Syndrome..". that means your "crazy bone" nerve is causing the problem… but He did not do surgery on Arms… (The nerve in the elbow stretched, when I bent my arm … and the nerve was caught up on something that triggered the pain…) (My words…not his)….So I went to any "arm surgeon"… and told him what I had… Cubital Tunnel Syndrome …. the arm surgeon sent me through a couple tests… and then pronounced that I had "cubital Tunnel Syndrome…"… that surgery opened up the elbow of the arm and moved that "crazy" nerve so when I bent my elbow it no longer stretched that nerve… Problem solved…. Been great in that area since that surgery 20 years ago… Ah the Luck continues… Really smart and capable surgeons fixed the structural situations …

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@sandytoes14

@lioness I know I replied to you but gosh darn if I know what happened to it. Because I had gastric bypass in 2007 for weight loss, Meloxican and other NSAIDS are not on my approved list. It is said they cause ulcers in the pouch that has been created to hold a small amount of food. Trader Joe's Ginger Turmeric tea is good and I have been drinking two cups daily. Did you have the MRI yet?

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@sandytoes14 Hi Jen yes I had the MRI and have a fracture L4 so that's 2 I'm not trying for a 3rd. Going to see my pain Dr. on 9th in meantime Dr.. said they treat this symptomatically rest,ice,heat, Tens unit so that's what I'm doing . I do wear a brace when out and about. Have a wonderful Labor Day.

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@rwinney

Hello Jen. We all deserve a comfortable place to let it out and im glad you did. I'm wondering if you or your Dr are farmiliar with intravenous lidocaine infusions? They are another way of masking pain and are used for chronic pain ,fibromyalgia, neuropathy, etc… I am going on my 11th week of infusions and have finally found a dose that I am beginning to benefit from. I am also on opiods (hydrocodone), not by preference obviously, and am trying to reduce my intake by finding other options such as the lidocaine infusions. Have yet to try CBD. I understand the mind struggle of taking all these meds (also on Lyrica CR (controlled release) and Cymbalta). But, I finally came to terms that I am not an addict and never will be one because I am accountable to myself first and foremost, and it is for pain relief only. Of course it would be our goal to never need these drugs in our life but pain has no mercy. I send you well wishes and continued hope in persevering. I too think of the sound of the ocean, sand between my toes and the warmth of the sun on my face as I take calming deep breaths. May you find a calmness for your pain as soon as possible.
~Rachel

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I really liked your comments about pain. I myself never experienced real bad pain, even though I had 4 children, 2 c-sectioned, in 8 years and some backpack, but the real pain came
now in the last 10 years. Now I know, what it does to you. I withdraw from social functions, have no pleasure in life, and try to get off opioids, because they do help, but I do not like the dependency, which comes with it. But the pain is there almost 24 hours, and I have become more housebound and now even in bed more hours. I have arthritis in my spine, headaches ,
had an AVM operated with open brain surgery, and other bone problems.
Tried to cut down on the Opioids, but it is hard, after several years. I am 73 yrs old, and thought my hubby and I had some good years left.
Now the depression has started. Any suggestions?

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@edda

I really liked your comments about pain. I myself never experienced real bad pain, even though I had 4 children, 2 c-sectioned, in 8 years and some backpack, but the real pain came
now in the last 10 years. Now I know, what it does to you. I withdraw from social functions, have no pleasure in life, and try to get off opioids, because they do help, but I do not like the dependency, which comes with it. But the pain is there almost 24 hours, and I have become more housebound and now even in bed more hours. I have arthritis in my spine, headaches ,
had an AVM operated with open brain surgery, and other bone problems.
Tried to cut down on the Opioids, but it is hard, after several years. I am 73 yrs old, and thought my hubby and I had some good years left.
Now the depression has started. Any suggestions?

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@edda…..you asked a simple yet very complex question. "Any suggestions?" Pain is so unique in intensity and duration for everyone. However, the pains of aging seem to finally get to all of us. I am 77 and my suggestions would be the following:

1. Explore the practice of gentle yoga and mindful meditation. Study your pain and learn from it. Learn what works and what doesn't. This daily practice is my salvation.

2. Find a type of treatment e.g. massage, acupuncture, walking exercise, infusions, that makes your body feel better and enhances your coping skills.

3. Find a type of medication that works where and when you need it to. And as an adult, you know about the opioid dependency. I have chosen a non-opioid option, medical cannabis. The journey has taken me years and now that the cannabis industry is more regulated in adult-use states, we can be sure that the product meets the industry regulations when we purchase it from a legal dispensary.

4. Give back…..find a way where giving back to a charitable cause is a real game-changer for you. Do you feel like you are becoming unworthy with nothing to share? That happens to many of us after retirement. We used to be sought after for our talents and contributions…..now look what happens. We are replaced and our accomplishments become a faded memory. In case you haven't guessed, Mayo Connect is my "give back" and it matters to me to be totally there for you and other members. I am comfortable at home and my pain is manageable at a mid-range level most of the time.

Would it be possible for you to send us some shining moments in your life that you can share? Be free of suffering today. Chris

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@artscaping

@edda…..you asked a simple yet very complex question. "Any suggestions?" Pain is so unique in intensity and duration for everyone. However, the pains of aging seem to finally get to all of us. I am 77 and my suggestions would be the following:

1. Explore the practice of gentle yoga and mindful meditation. Study your pain and learn from it. Learn what works and what doesn't. This daily practice is my salvation.

2. Find a type of treatment e.g. massage, acupuncture, walking exercise, infusions, that makes your body feel better and enhances your coping skills.

3. Find a type of medication that works where and when you need it to. And as an adult, you know about the opioid dependency. I have chosen a non-opioid option, medical cannabis. The journey has taken me years and now that the cannabis industry is more regulated in adult-use states, we can be sure that the product meets the industry regulations when we purchase it from a legal dispensary.

4. Give back…..find a way where giving back to a charitable cause is a real game-changer for you. Do you feel like you are becoming unworthy with nothing to share? That happens to many of us after retirement. We used to be sought after for our talents and contributions…..now look what happens. We are replaced and our accomplishments become a faded memory. In case you haven't guessed, Mayo Connect is my "give back" and it matters to me to be totally there for you and other members. I am comfortable at home and my pain is manageable at a mid-range level most of the time.

Would it be possible for you to send us some shining moments in your life that you can share? Be free of suffering today. Chris

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Chris, eloquently said. I admire and appreciate your positivity. I may only be 49 but, I feel retired and aged and can relate.
Thank you for being a bright light to many.
~Rachel

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@edda

I really liked your comments about pain. I myself never experienced real bad pain, even though I had 4 children, 2 c-sectioned, in 8 years and some backpack, but the real pain came
now in the last 10 years. Now I know, what it does to you. I withdraw from social functions, have no pleasure in life, and try to get off opioids, because they do help, but I do not like the dependency, which comes with it. But the pain is there almost 24 hours, and I have become more housebound and now even in bed more hours. I have arthritis in my spine, headaches ,
had an AVM operated with open brain surgery, and other bone problems.
Tried to cut down on the Opioids, but it is hard, after several years. I am 73 yrs old, and thought my hubby and I had some good years left.
Now the depression has started. Any suggestions?

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Hello Edda
Nice to hear from you.

When I was 8, my Mom had a motorcycle accident which broke both of her legs multiple places. From that day forward I began observing my mother's massive life changes, challenges and chronic pain. 1978 meant less advancements in medicine… 4 months on her back in traction, one year bound to a wheel chair and on crutches, countless drugs, operations, infections, therapists, hospitals, doctors etc… As a matter of fact my mom was one of the first in NY state to be hooked up to the brand new technology of a tens unit for electric stim! The day of mom's accident, her Dr. wanted to amputate but Dad refused to let him because she was only 28 years old with a little girl to raise (yours truly). Fast forward 41 years later… who knows if that was the right decision. The Dr saved her legs but with repercussions. She has been through hell along the way and I have been along her side.

Before I began this post I was texting with my mom who is now 69 and really wearing down from all she's been through. She has always been THE MOST powerful, strong, stubborn and determined person I know. Her words to me just were… "Alot of times one feels the fight is gone. I am trying to stay positive."

Now, here I am with chronic pain of my own, on opiods after watching her need them for decades, trying to stay positive for her as well as myself and feeling bad for many folks on this forum. The one thing I have learned throughout it all is that none of us are truly alone in our misery and no matter the challenge… support, love and a sympathetic yet encouraging ear can be the best medicine ever!

Thank you for reading my story. I hope it occupied your mind and took away from your pain, even for a bit. Wishing you peace and comfort. Don't be a stranger. We can all help each other.
~Rachel

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