Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Volunteer 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.

@artscaping

@lioness…so how far outside Pittsburgh. I lived in Coraopolis…..

Jump to this post

@artscaping Hi Chris.Yes I know where Coraopolis. I lived near Greensburg the county seat of Westmoreland Co. I say it is about 45 min. from there . Funny how you forget the little towns around there cant remember any now. Have a good day Linda

REPLY
@trishj46

Jen—–thanks for sharing!—-I was on most of same meds, but insurance company stopped them. They are in the process now of wanting to stop percocet. Where do you live? I am in PA and they want people off opiods! It is so cruel and more & more people committing suicide. Do not know what I will do if stop this. take good care.

Jump to this post

I know we with not Tolerable pain seem to be the ones suffering with the opioid crisis.
It’s a sad thing but I feel they need to fight it differently.

REPLY
@trishj46

I get DR.Leonards catalog! Is the brace covering upper and lower back? Can do nothing with neurogenic bowel or bladder—-damage from spinal cord surgery! Thanks!@

Jump to this post

@trishj46 caps off now . Yes the brace goes over shoulders you can adjust the tightness of it It covers both upper and lower back I would suggest putting the closer belt over panties..

REPLY
@lioness

@trishj46 caps off now . Yes the brace goes over shoulders you can adjust the tightness of it It covers both upper and lower back I would suggest putting the closer belt over panties..

Jump to this post

Thanks—I am checking it out—–cream too! sending you Hugs!

Liked by cocodab

REPLY
@trishj46

Thanks—I am checking it out—–cream too! sending you Hugs!

Jump to this post

@trishj46 Glad to hear it .We are all in this pain joirney together You,ll find we all suggest what works for us in hopes it will for you also 😊 Connect is a caring community Let me know if it helps you I love the cream put it on before bed and during day 😁

Liked by lioness, cocodab

REPLY

Sorry to hear ,about your long experience withe pain ,we have a lot in common . My suffering started long ago ,
I well sure my full experience ASAP , once I can get the abilaty to write it .
My very best

REPLY
@trishj46

Jen—–thanks for sharing!—-I was on most of same meds, but insurance company stopped them. They are in the process now of wanting to stop percocet. Where do you live? I am in PA and they want people off opiods! It is so cruel and more & more people committing suicide. Do not know what I will do if stop this. take good care.

Jump to this post

People will turn to street drugs

REPLY
@trishj46

Lioness—–I go crazy with pudental neuralgia! It never lets up any more. The flair is like being like on fire alive—The worst isv the most sensitive parts of my body. The spinalcord causes such neuropathy. Yes, I know vwhat you mean about your back. I can';t get relief any where.
I am on percocet 10mg 3-4 times a day, gabepentin 1800mg a day, soma, I don't feel anything is much help. I am so tired from being awake all night. I can't walk much or far with spinal and broken hip not healing well. My doctor tells me there are not many options left since I have tried everything. I hope you feel better? Thanks for caring! Hugs!

Jump to this post

Have u tried pelvic floor therapy? Have you tried radio frequency ablation?

REPLY
@trishj46

its 3am here and I could scream with excruciating pain everywhere—the pn nerve pain does not let up internally or externally. The spinal pain in every mucle & bone in my body. I cannot stay still but cannot walk around either—-there is no med to help any thing–My feet are like cement
from neuropathy, since fx of hip I got more spinal damage and its going every where—I try listening to hynotic cd for chronic pain but no help now–so disgusted of 8 years of this I think I am going to lose my sanity. Where did this evil disease come from–me? What did I do? God forgive me.

Jump to this post

Yes it’s awful and I feel the same way!!!

REPLY
@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.

Jump to this post

Wow – you have been through so very much for a very long time. I want you to know how much I appreciate your honesty. I have back and leg pain and do, at times, feel helpless. But what I am enduring is nowhere near what you have been through. I cannot take any kind of opiod meds because they make me violently ill so perhaps that is a blessing. I've had physical therapy twice, shots in my back three different times, and some meds. I've been advised to do so many different things and have to admit, I am really afraid to have any type of surgery on my back. Several friends have told me the fusion surgeries they've had have been very helpful. But I'm still at the point where I don't want to do anything drastic.

Anyway, I just want you to know how much your advice has meant to me. And I truly am influenced by your upbeat attitude. I am very grateful for your honesty. I hope you and your family (that includes your sweet service dog) have a most beautiful Christmas holiday.

REPLY
@trishj46

Colleen—-it seems like when ever I get some where to posts its by roaming around, I don't feel I know what I am doing. If I get a post from someone, I reply and get onto a page. I know I am not explaining this right! Thanks for help! Do I have to go thru google to get to web site?

Jump to this post

Colleen I don’t get everything because my phone is putting much of it it spam. Getting better but it is a safety factor.

REPLY
@vklittle61

Have u tried pelvic floor therapy? Have you tried radio frequency ablation?

Jump to this post

Yes I have done the radio frequency ablation but not pelvic floor therapy
I’m in the process of changing insurance companies so I have to wait till
January 1.

REPLY

Pelvic floor thereapy made me so much worse! I know a lot of people benifit. Good Luck!

REPLY

Hello there fibro friends. Seems the pain never tires. Then, there was some intestinal bug that has been brutal. On the up side-it seems to be subsiding and the bowels are calming. The relief now is not being a slave to the porcelain. Even missed my little grandson's Christmas program. Now that is pain I can't describe.

REPLY
@parus

Hello there fibro friends. Seems the pain never tires. Then, there was some intestinal bug that has been brutal. On the up side-it seems to be subsiding and the bowels are calming. The relief now is not being a slave to the porcelain. Even missed my little grandson's Christmas program. Now that is pain I can't describe.

Jump to this post

Parus—–Know what your feeling—–so sorry your not up to par! Better days ahead, I hope!

REPLY
Please login or register to post a reply.