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.

@rwinney

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.

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Been there. Done that and have the bill vials and scars to prove it. Chronic pain is a tough row to hoe with very little help. Read where the Brits are developing a botox derivative as an alternate medication to treat pain, except it is just in the animal testing phase of research.

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@rwinney

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.

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Rachel - what's the difference between FM and CSS from a treatment perspective? Thanks!

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@rjjacobsen

Rachel - what's the difference between FM and CSS from a treatment perspective? Thanks!

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From my knowledge and what I learned at the pain rehab center it's the same treatment plan. Fibromyalgia is actually a form of central sensitization . It's the same concept of hypersensitivity. Treatment plans exist of exercise, cognitive behavioral therapy, occupational therapy ,Stress Management, healthy diet, sleep hygiene , mindfulness and meditation, balancing rest with activity to avoid push crash. The PRC advocates for as little medicine as possible especially the addictive kind and treat chronic conditions from more of a holistic point of view where the patient is an active participant in their care hence shifting from placing responsibility on Doctor's medicine procedures treatments that just end up not working or becoming less effective. Some medications do help like nerve medications but the recommendation is to use as minimal as possible. I hope this helps I apologize for punctuation mishaps, I am voice texting as it's easier for me in the moment.

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@rwinney

From my knowledge and what I learned at the pain rehab center it's the same treatment plan. Fibromyalgia is actually a form of central sensitization . It's the same concept of hypersensitivity. Treatment plans exist of exercise, cognitive behavioral therapy, occupational therapy ,Stress Management, healthy diet, sleep hygiene , mindfulness and meditation, balancing rest with activity to avoid push crash. The PRC advocates for as little medicine as possible especially the addictive kind and treat chronic conditions from more of a holistic point of view where the patient is an active participant in their care hence shifting from placing responsibility on Doctor's medicine procedures treatments that just end up not working or becoming less effective. Some medications do help like nerve medications but the recommendation is to use as minimal as possible. I hope this helps I apologize for punctuation mishaps, I am voice texting as it's easier for me in the moment.

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Thanks!

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Hello there, I totally understand and empathize with your pain management challenges. I’ve been dealing with very serious and debilitating cases of CFS, FIBROMYALGIA and CHIARI MALFORMATION for 32 years. I fist started taking opiates at age 36 because they were the only medications strong enough to be of any assistance. Note, they didn’t get rid of all my pain but at least made it somewhat manageable or better at times, worse at others. I’ve done a lot of research about “opioids” and have found plenty of evidence to dispel most of the “unwarranted fear,” misinformation, disinformation and the misinformed which only serves to cloudy the facts and real issues at hand. “OPIOIDS” have a very important place in pain management for those patients who simply do not respond to other medications effectively enough. Most importantly, when your pain is more than moderate to severe and occurs on a daily or mostly continual basis……..you require “EFFECTIVE PAIN MANAGEMENT!”
The strongest dosages are not always the best, However, it needs to be strong enough and the best type of opioid for you to be the most effective.
Try several or more of them to find the dose that works best for you. Also realize that this may change over time. Lastly…. And also extremely important. There is very little evidence that patients with “LEGITIMATE and AUTHENTIC” long term chronic and or chronic accuse pain challenges ever develop
any kind of “Addiction” problems. The fact is, there’s barely enough efficacy for the pain meds to effectively deal with the singular or multiple pain factors at best. As a result, there is nothing left to get “High” on or receive some kind of “Buzz!” At best you will feel somewhat relaxed and sufficiently relived of the pain to naturally feel better! I’ve gone on and off of my pain meds on occasions for various reasons and have never experienced any kind of “Addiction” problems. I tell people who don’t understand the entire subject matter and the unfortunate, misplaced controversies around it. If you take several aspirin to get rid of a headache, do you take more aspirin when the headache pain is gone? Well of course not, there’s no reason too. Me and most opioid patients have found the same thing to be true for us. The opioids are only going to be as effective as they can be. Although all of your pain may not go away, you don’t take more opioids because they won’t get rid of any more pain. You get whatever amount of relief you get and taking more will not benefit you. I have rarely if ever experienced any kind of so called “High” on my pain meds. Thankfully, when they work most effectively, my pain or multiple pain issues are sufficiently dealt with and I can relax. It’s predominantly the people who do not really have any authentic chronic pain issues who stupidly take opioids to get high that end up having problems or becoming addicted. Unfortunately, these kinds of people and “Drug Abusers” give legitimate patients snd their caring doctors a bad name and reputation which is totally undeserved. Best wishes on your search for the right type, dosage and combination of opioids that will bring you the efficacy, pain relief and humanity you deserve.
GOD SPEED

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Thank you for posting this. This is one of the best explanations for the use of opioids I have ever read. I unfortunately have been suffering from horrible chronic pain for years after five spinal fusions and shoulder replacements that did not go well.. I don’t know where I would beif I did not have access to the drugs that my doctors provide for me. If used responsibly opioids are not addictive. Thank you so much .

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So sorry , you would think that there should be something to relieve the pain with all this technology these days. Wish you luck with everything ! I got this pain in my lower back and there's a vibration at times going down to my heals not fun!. Wish you all the best.

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I’m thinking you desperately need a pain management dr to oversee your progress( or lack of) with these strong meds
I believe the oxycodone you are on is rather strong.. is it possible you have built up a tolerance to it?
Keep me posted
Good luck n remember you aren’t alone in this journey

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@philipsnowdon

Hello there, I totally understand and empathize with your pain management challenges. I’ve been dealing with very serious and debilitating cases of CFS, FIBROMYALGIA and CHIARI MALFORMATION for 32 years. I fist started taking opiates at age 36 because they were the only medications strong enough to be of any assistance. Note, they didn’t get rid of all my pain but at least made it somewhat manageable or better at times, worse at others. I’ve done a lot of research about “opioids” and have found plenty of evidence to dispel most of the “unwarranted fear,” misinformation, disinformation and the misinformed which only serves to cloudy the facts and real issues at hand. “OPIOIDS” have a very important place in pain management for those patients who simply do not respond to other medications effectively enough. Most importantly, when your pain is more than moderate to severe and occurs on a daily or mostly continual basis……..you require “EFFECTIVE PAIN MANAGEMENT!”
The strongest dosages are not always the best, However, it needs to be strong enough and the best type of opioid for you to be the most effective.
Try several or more of them to find the dose that works best for you. Also realize that this may change over time. Lastly…. And also extremely important. There is very little evidence that patients with “LEGITIMATE and AUTHENTIC” long term chronic and or chronic accuse pain challenges ever develop
any kind of “Addiction” problems. The fact is, there’s barely enough efficacy for the pain meds to effectively deal with the singular or multiple pain factors at best. As a result, there is nothing left to get “High” on or receive some kind of “Buzz!” At best you will feel somewhat relaxed and sufficiently relived of the pain to naturally feel better! I’ve gone on and off of my pain meds on occasions for various reasons and have never experienced any kind of “Addiction” problems. I tell people who don’t understand the entire subject matter and the unfortunate, misplaced controversies around it. If you take several aspirin to get rid of a headache, do you take more aspirin when the headache pain is gone? Well of course not, there’s no reason too. Me and most opioid patients have found the same thing to be true for us. The opioids are only going to be as effective as they can be. Although all of your pain may not go away, you don’t take more opioids because they won’t get rid of any more pain. You get whatever amount of relief you get and taking more will not benefit you. I have rarely if ever experienced any kind of so called “High” on my pain meds. Thankfully, when they work most effectively, my pain or multiple pain issues are sufficiently dealt with and I can relax. It’s predominantly the people who do not really have any authentic chronic pain issues who stupidly take opioids to get high that end up having problems or becoming addicted. Unfortunately, these kinds of people and “Drug Abusers” give legitimate patients snd their caring doctors a bad name and reputation which is totally undeserved. Best wishes on your search for the right type, dosage and combination of opioids that will bring you the efficacy, pain relief and humanity you deserve.
GOD SPEED

Jump to this post

Great explanation of your experiences… however, i do believe there are many many folks who start out after an operation (for example) needing opioids for a short time for pain relief.. but their bodies seem to require them to keep taking the meds even after no longer needed for pain… and then they become accustomed to that dosage and must keep increasing it .. that’s an “ addictive personality” most possibly though..
I too take a small dosage of Vicodin when pain is too strong for me from fibromyalgia / Chronic fatigue syndrome ..
i could easily slide down that “ slippery slope” of adding more Vicodin as i do notice a “ high” comes with it at times ! BUT I’m aware of this and choose not to go down that slope ..
But not everyone may be as diligent or as “ respectful “ of its bad potential as I am…
Everyone is different I’ve learned
Chronic pain is depressing and changes our entire life n lifestyle -
My dr now has me in large amounts of vit C with an infusion .. and a small amount of Adderall for energy n focus
It’s truly trial n error for each person
Good luck on this rough journey
You are NOT alone

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I wanted to share my experience with opioids in case it may be of help.
I have used Tramadol, Norco, Vicodin, Percocet and Belbuca. I had a laminectomy (L2-5) and was prescribed a large amount of Percocet, but only for two weeks. I have healed from the surgery and I now deal with chronic pain.
I currently take Tramadol and acetaminophen four times a day. I also take 5 or 10 mg of THC in the evening in the form of an edible. On good days that is enough. When my pain is more than usual I take Percocet (3 times a day) instead of Tramadol. That happens about once a week or less. And when the pain at it’s worst I take the Percocet and Belbuca. This happens about one a month or less. My pain doctor told me I could take Belbuca along with my other meds because the Belbuca is released at a steady rate. Belbuca is taken every 12 hours in the form of a patch that you place inside your cheek. I don’t like Belbuca because it can harm your teeth, it keeps me awake at night, and it’s expensive. So I only use it when the pain is at it’s worst. But I take the marijuana edible (THC) every night and I recommend it. For me it has been a lifesaver.

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