Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Alumna Mentor @sandytoes14, Aug 19, 2019

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.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@trishj46

Don't know if I can post here----its my first time. I have had pudental neuralga for 8 years now and an always in excruciating burning pain, neuropathy every where. I have been & done eveything and nothing really works or is tolerated. I am pretty much home bound now. The worst is recral & vaginal non-stop burning pain. Use ice pack 24/7--I am ready to give up. I trust in God but ask him daily to take me home! I pray for all of you I have read about.

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@trishj46 Welcome to Mayo Connect. We are a diverse group of patients, family members and caregivers who lend our support and experiences to others. That's a long time to be suffering with pain. I see there is a discussion on pudendal nerve discussion and perhaps you can find some information there:
https://connect.mayoclinic.org/discussion/pudendal-nerve-entrapmentneuropathydamage/?pg=10#chv4-comment-stream-header
Has your medical team been able to offer any treatment that worked for relief?
Ginger

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@gingerw

@trishj46 Welcome to Mayo Connect. We are a diverse group of patients, family members and caregivers who lend our support and experiences to others. That's a long time to be suffering with pain. I see there is a discussion on pudendal nerve discussion and perhaps you can find some information there:
https://connect.mayoclinic.org/discussion/pudendal-nerve-entrapmentneuropathydamage/?pg=10#chv4-comment-stream-header
Has your medical team been able to offer any treatment that worked for relief?
Ginger

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My care team have worked so hard, God bless them! There are no moire options they tell me!
Thank you for sending me the right link. Its another night here to get through with no sleep!

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@trishj46

Don't know if I can post here----its my first time. I have had pudental neuralga for 8 years now and an always in excruciating burning pain, neuropathy every where. I have been & done eveything and nothing really works or is tolerated. I am pretty much home bound now. The worst is recral & vaginal non-stop burning pain. Use ice pack 24/7--I am ready to give up. I trust in God but ask him daily to take me home! I pray for all of you I have read about.

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I’m So sorry I have put in the neuropathy as well I was just saying those 13 months ago but I’ve been going through the pain for going on two years. I’ve tried everything injections radio frequency ablation and nothing I take Alleviates the pain ! I have to use ice packs all the time to sit on when I drive in my car or go out to eat or anything like that I can’t travel too far away gr home . Have you thought about the surgery

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@vklittle61

I’m So sorry I have put in the neuropathy as well I was just saying those 13 months ago but I’ve been going through the pain for going on two years. I’ve tried everything injections radio frequency ablation and nothing I take Alleviates the pain ! I have to use ice packs all the time to sit on when I drive in my car or go out to eat or anything like that I can’t travel too far away gr home . Have you thought about the surgery

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The stimulator failed, do not want surgery because of spinal cord problem. Have been looking at new DRG pain pump but still afraid from spinal cord. I feel hopeless with eight years of non-stop pain. I have tried every drug---on percocet and 1800mg gabepentin that do nothing. Thanks!

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@parus

Currently at wits end as the fibro has reared it's fiery head in protest of the rhizotomy. It will settle back down!!!

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@parus I’m so sorry you have to deal with that.

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@sandytoes14 Hi Jen. Feeling better today and know that flares are a part of life. Not a happy camper when they arrive, but get through it!!! This is the important thing... 🙂

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@gingerw

@parus Ouch! What helps the flare settle down? Are there exercises you can do that will relieve the pain?
Ginger

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@gingerw Today is better. Flares calm down when I allow myself to take it easy. Pamper myself. Are you back to wrmer temps indoors yet??

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@parus

@gingerw Today is better. Flares calm down when I allow myself to take it easy. Pamper myself. Are you back to wrmer temps indoors yet??

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@parus Nope, warmer temps inside won't happen until late next week. Glad to hear flare is calming down for you.
Ginger

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I wasn't able to tolerate either Cymbalta or Lyrica which were prescribed by the pain management doctors at a huge medical center. I told my internist and she suggested a protocol that has been used for many years for chronic pain. It is a combination of Norco, gabapentin and Neurontin. I think that's right but truthfully I am visiting family and didn't bring the bottles with me. This has worked well for me for 14 years.

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@corinnemcg

I wasn't able to tolerate either Cymbalta or Lyrica which were prescribed by the pain management doctors at a huge medical center. I told my internist and she suggested a protocol that has been used for many years for chronic pain. It is a combination of Norco, gabapentin and Neurontin. I think that's right but truthfully I am visiting family and didn't bring the bottles with me. This has worked well for me for 14 years.

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I am on gabepenten ( same as neurointin ) 1800mg but not much help. I take percocet but its really not good for nerve pain but does help with other problems from spinal cord. Glad the combination is helping yiou.

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