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.

@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.

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@sandytoes14 Have you tried visualization, or meditation, or acupuncture? What are you able to do that moves your focus away from the acknowledgement of pain? My heart goes out to you.
Ginger

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@sandytoes14 I'm so sorry to hear about your pain. I live with it everyday, so I guess I'm a fellow traveler.

@summertime4 wrote: "pain kills our desire and our ability to live or love life…" Wow isn't that the truth. I'm not sure I've posted here but I've been in chronic pain for a year. I had a total knee replacement a year ago which has failed and will have to be redone (by a different surgeon, in Boston!). Pain! Every day! I also have excruciating back pain from herniated discs and I've tried almost everything: PT, cortisone injections, MMJ, chiropractic. Tomorrow I'm seeing a spine surgeon – also in Boston. I'll talk to him about what he things should be done first: back surgery or the knee revision. I'm one of the furious who truly benefits from opioids and am denied them. I have no addictive tendencies (was on Oxy for 2 months post knee op and weaned with incident). If someone like me — 8-9 constant pain — doesn't qualify for effective drugs. who does?!

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@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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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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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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Correction.. hardware left in place…

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@sandytoes14 Pain is discouraging and getting enthused is a challenge. Sorry to hear about your being discouraged but understand at some level. We all experience pain differently. Appreciate your sharing with honesty.

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@summertime4

@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.

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@summertime4 I see a wonderful pain management doctor who specializes in fibromyalgia. I will see him later today and just pray that he can do something to help. @babette The DEA has such limits now on what can be prescribed and how much, at least in FL. The people that are literally suffering from their limits are true documented chronic pain patients like so many of us. Gabapentin gave me horrid side effects, falls and memory loss. Lyrica helps some. Medical marijuana is on my mind. I don't qualify for surgery–I've seen neurosurgeons around the country that all say the same diagnosis. Only a 50% chance of helping my C Spine.My husband had 2 fusion surgeries last year. He is going to try the pain stimulator. Just now going through the insurance approvals.I appreciate your responses and understanding.

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@gingerw

@sandytoes14 Have you tried visualization, or meditation, or acupuncture? What are you able to do that moves your focus away from the acknowledgement of pain? My heart goes out to you.
Ginger

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@gingerw Hi Ginger, I'm not sure its visualization but when the pain is a 10 (and I'm too stubborn to go to the hospital, partly in fear of being labled) I can look at a picture of the ocean and imagine I'm sitting there. I try to feel the sun and hear the ocean. There is an app on my phone CALM and I play the ocean sound. That helps bring the pain down a point or two.At least its not stabbing me anymore. I had acupuncture and it helped some. Maybe I'll look into that in my area. Thank you.

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@parus

@sandytoes14 Pain is discouraging and getting enthused is a challenge. Sorry to hear about your being discouraged but understand at some level. We all experience pain differently. Appreciate your sharing with honesty.

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@parus Thank you. I try never to complain but I had to share, if not for myself, but for others to know they are not alone. I appreciate your support.

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@sandytoes14

@gingerw Hi Ginger, I'm not sure its visualization but when the pain is a 10 (and I'm too stubborn to go to the hospital, partly in fear of being labled) I can look at a picture of the ocean and imagine I'm sitting there. I try to feel the sun and hear the ocean. There is an app on my phone CALM and I play the ocean sound. That helps bring the pain down a point or two.At least its not stabbing me anymore. I had acupuncture and it helped some. Maybe I'll look into that in my area. Thank you.

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@sandytoes14 As @parus said, we each experience pain differently, and process it in our minds in various wys. I recall someone telling me "well, it lets you know you are alive". "Yeah, yeah, I know I'm alive, don't need more pain to tell me that" was my response! For me, getting my focus onto something else [visualization, Zentangle, crochet or quilting] helps. CBD oil helps. Will look in to medical marijuana if need be. I am glad you chose to share, and I honor everyone in pain and discomfort.
Ginger

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@sandytoes14 We all need the support from time to time. You have done so many times for others. The only time I mention thus is to others here. Seems best this way. You have my support and caring. So hoping things will improve for you. I also have DDD of the cervical and it is brutal at times. Once I get through the BCG treatments I am going to schedule for a rhizotomy with the pain specialist. We are all in this together!!

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

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