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.

@lioness

@rwinney Those are beautiful Love Freezia,s that is what they are ,aren't they? If you don't mind I'm going to send them to @cindee60

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Thanks! You go right ahead and share. Enjoy! I believe they are freesia.

Liked by Parus

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@lioness

@cindee60 How are you doing? Tried to share a flower picture but didn't work they where yellow and white freesia,

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I'm hanging in there. Some days harder than others, as you know. I have used the fibro cream you suggested, on my legs and it buys me a little time of relief. I hope you are as well as well can be.
Rachel

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@rwinney

I'm hanging in there. Some days harder than others, as you know. I have used the fibro cream you suggested, on my legs and it buys me a little time of relief. I hope you are as well as well can be.
Rachel

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Oops! I replied and you were speaking to @cindee60, not me. HAHAHAHAHA!
I'm sorry. The least I can do is attach the flowers again for her. Hoping she reads this thread. ☺

20191026_132101

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@corina60 Love these flowers @rwinney got them from her Dad but thought you would enjoy them also ,so she said I could share them with you ,hope it brightens your day alittle and hubby,s

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@rwinney

I'm hanging in there. Some days harder than others, as you know. I have used the fibro cream you suggested, on my legs and it buys me a little time of relief. I hope you are as well as well can be.
Rachel

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@rwinney Glad it helps and yes it gives some relief for awhile anyhow. Not sure what is going on but my legs are so weak been like this for a couple of days now.

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My Dad took a break from flowers and brought me this beautiful peace lilly plant.
How could I not share and wish my fellow pain sufferers a "peace"ful day. 😊

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@rwinney

My Dad took a break from flowers and brought me this beautiful peace lilly plant.
How could I not share and wish my fellow pain sufferers a "peace"ful day. 😊

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@rwinney So beautiful just looking at it gave me a peaceful feeling. thanks

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@lioness

@rwinney So beautiful just looking at it gave me a peaceful feeling. thanks

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You're welcome.

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@rwinney

My Dad took a break from flowers and brought me this beautiful peace lilly plant.
How could I not share and wish my fellow pain sufferers a "peace"ful day. 😊

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@rwinney Thank you for including us! And, please thank your dad. Let him know how much sunshine he has brought not only to your day, but to the day of us here on Mayo Connect, please.
Ginger

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@gingerw

@rwinney Thank you for including us! And, please thank your dad. Let him know how much sunshine he has brought not only to your day, but to the day of us here on Mayo Connect, please.
Ginger

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Indeed I will Ginger! I mentioned it before and he was so pleased to hear. He's a good man and instilled a giving spirit in me, along with my mom too. Sometimes it's nice to see and read pleasantries as a break from the heavy topics we discuss. Have a wonderful day.

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@rwinney

Indeed I will Ginger! I mentioned it before and he was so pleased to hear. He's a good man and instilled a giving spirit in me, along with my mom too. Sometimes it's nice to see and read pleasantries as a break from the heavy topics we discuss. Have a wonderful day.

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Rachel, @rwinney, This is the first time I have seen a mention of the need to pull the shade on suffering every once in a while. I, too, need a break or just need to mix up the day sometimes to avoid the overwhelming impact of so many folks in need of support because of chronic pain. May you have peace and ease today. Chris

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@artscaping

Rachel, @rwinney, This is the first time I have seen a mention of the need to pull the shade on suffering every once in a while. I, too, need a break or just need to mix up the day sometimes to avoid the overwhelming impact of so many folks in need of support because of chronic pain. May you have peace and ease today. Chris

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Not always easy to do but, when the spirit moves me I've got to go for it!!! 👍🏼

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

Liked by lioness

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I am so sorry to hear about the pain you are suffering through. I too suffer with fibromyalgia and chronic pain as well as other symptoms that they don't seem to be able to get a handle on a diagnosis as of yet (frustrating). The best thing I ever did for myself, my family, my co-workers, and everyone around me was to attend the 3-week course in the Pain Rehabilitation Center at Mayo Clinic in Rochester, MN. It is an intense program that lasts three weeks and are full days five days a week during that time, but it is so worth it. You have physical therapy; occupational therapy; group sessions to discuss stress management, time management, etc.; a morning stretch of some type to start your day; and a relaxation technique of some sort to end your day. I would definitely check it out! I am no longer on pain meds at all. I can't say the pain is gone but I can say that I handle it differently. Best of luck and happiest of holidays to you and yours!

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@karihammel

I am so sorry to hear about the pain you are suffering through. I too suffer with fibromyalgia and chronic pain as well as other symptoms that they don't seem to be able to get a handle on a diagnosis as of yet (frustrating). The best thing I ever did for myself, my family, my co-workers, and everyone around me was to attend the 3-week course in the Pain Rehabilitation Center at Mayo Clinic in Rochester, MN. It is an intense program that lasts three weeks and are full days five days a week during that time, but it is so worth it. You have physical therapy; occupational therapy; group sessions to discuss stress management, time management, etc.; a morning stretch of some type to start your day; and a relaxation technique of some sort to end your day. I would definitely check it out! I am no longer on pain meds at all. I can't say the pain is gone but I can say that I handle it differently. Best of luck and happiest of holidays to you and yours!

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I was approved for this program and then I broke my foot. They said I would need to be able to do about 20 minutes of exercise daily. My foot is no longer broken, but now I have chronic pain which significantly limits the time I am on my feet at a time. I am still working and getting through my day without pain meds, but I don’t know if I could do the exercise portion of the program. I am wondering what your input on this would be, if possible? Thx for considering. Stay well.

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