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.

Rachel, Volunteer Mentor | @rwinney | Apr 8, 2023

In reply to @finny4606 "It’s so hard to get an appointment at Mayo, I’ve been denied twice.😩" + (show)

I was denied once. But that was applying to be seen by Specialists. Apparently they felt they could not do more for me than my present doctors were already doing. It was then that I found Mayo Clinic Connect and figured I'd try to touch base with other people going through what I was going through and maybe that would help give me direction. In the end I took it upon myself to go to pain rehab and it paid off in the sense of giving me a plan and direction to be able to manage stress and chronic pain. I decided to stick around Connect to pay it forward and hopefully help others through sharing my experiences and knowledge.

How do you feel about being denied twice by Mayo? Do you think they were incorrect in their denial?

finny4606 | @finny4606 | Apr 8, 2023

In reply to @rwinney "I was denied once. But that was applying to be seen by Specialists. Apparently they felt..." + (show)

Yes, I think I have a good case. I’m looking for a diagnosis; I want to find out what I have that has been causing my total leg pain for the past 4 years. My original diagnosis was CRPS, but recently learned that was a misdiagnosis. I’m scheduled to see a a neurologist at a nerve clinic in Marrero, LA next week. Maybe it’s nerve damage as in “post surgical inflammatory neuropathy brought on by 2 unsuccessful knee replacements, in the same leg.

srdodla | @srdodla | Apr 9, 2023

In reply to @rwinney "I was denied once. But that was applying to be seen by Specialists. Apparently they felt..." + (show)

@rwinney
Rachel
Is it ok if I can PM you ?

Rachel, Volunteer Mentor | @rwinney | Apr 9, 2023

In reply to @srdodla "@rwinney Rachel Is it ok if I can PM you ?" + (show)

Sure

Rachel, Volunteer Mentor | @rwinney | Apr 10, 2023

In reply to @finny4606 "Yes, I think I have a good case. I’m looking for a diagnosis; I want to..." + (show)

Ah, yes, you may be on to something. It's tough when doctors struggle to properly diagnose. I hope your visit to the nerve clinic in LA proves to be beneficial. While you're there, maybe bring up Central Sensitization and see what the neurologist thinks. CSS is not always recognized by doctors, but can be what's left when all else gets ruled out. Also, if you have any large teaching hospitals or universities nearby, it may be another option. Good luck at your appointment! Will you check back with Connect and let us know how all goes?

finny4606 | @finny4606 | Apr 10, 2023

In reply to @rwinney "Ah, yes, you may be on to something. It's tough when doctors struggle to properly diagnose...." + (show)

Thank you! Can you tell me what Central Sensitization is? Do you have experience with that? My appointment at the Nerve Clinic is in a week. Depending on what I learn there, I’ll be seeking an appointment at one of the teaching hospitals in Houston. Please keep in touch!😁

Rachel, Volunteer Mentor | @rwinney | Apr 11, 2023

In reply to @finny4606 "Thank you! Can you tell me what Central Sensitization is? Do you have experience with that?..." + (show)

Hi there @finny4606 - Central Sensitization Syndrome, or CSS, begins in the central nervous system whereas a louder message is received in the brain. Like a loud speak or amplified signal.
Some examples I learned from Mayo Pain Rehab are:
1. it takes less to hurt
2. more things cause hurt
3. hurt lasts longer
4. fewer things help the hurt

Dr. Sletten from Jacksonville Mayo Clinic explains CSS and the science behind it in the following video:

- https://youtu.be/vJNhdnSK3WQ

I have CSS, and learned by ruling out a lot of other diagnoses that I was struggling with, but doctors could not pin point or provide answers to. For me, CSS is a chronic pain umbrella to a plethora of physical and sensory symptoms. People with fibromyalgia, neuropathies, migraines, IBS, etc... experience central sensitization. Sort of like when acute problems get fixed, but pain still lingers and docs can't figure out why or treatments become less effective.

Hope this helped answer your question about central sensitization. Please let me know if you have any other questions.

Rachel, Volunteer Mentor | @rwinney | Apr 11, 2023

In reply to @srdodla "@rwinney Rachel Is it ok if I can PM you ?" + (show)

Hello @srdodla - thank you for your private message. I think answering you here might be helpful for other members, too. You asked what my chronic pain issue was. The short answer is CSS. Since I don't discuss my pain, because that is considered a "pain behavior" which the Mayo PRC (pain rehab center) taught, it's best to share my "pre-PRC" neuropathy story of when I first came to Connect, then my "post-PRC" Connect Spotlight.

Get your popcorn ready 🍿, it's a long read!

Member Neuropathy Journey Stories: What's Yours:

- https://connect.mayoclinic.org/comment/310343/

- https://connect.mayoclinic.org/comment/310349/

Mayo Connect Spotlight:

- https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/where-theres-a-winney-theres-a-way-meet-rwinney/

Please let me know if you have any specific questions or concerns about your current health situation that my experiences may be able to help with. Are you concerned about permanent disability? Have you considered a pain rehabilitation program like Mayo Clinic's PRC?