Chronic Pain members - Welcome, please introduce yourself

Hi there esperanza22, I am a bit tardy with my response and realized I hadn't connected with you recently. Duloxetine: here's the deal. I was not taking anything in the morning for my SFN (small fiber neuropathy). I was taking Nortriptyline at night for sleeping. After a neuropsychological study, it was found that my pain in the day was being increased by anxiety and depression. A sorry state of affairs, I can assure you. In addition, I had constipation from it.

So....even though it worked for sleep, I tapered off the night-time Nortriptyline in several months. Then I began very slowly to begin and then add to the Duloxetine in the morning. Duloxetine is a much newer medication than Nortriptyline even though it worked as prescribed. Duloxetine is both an anti-anxiety as well as an anti-depressive. Therefore, it helps me get through the day quite well. I have more energy with less pain and a clearer mind. I'll take that.

So what do I do for sleeping? I moved my Gabapentin to the evening also. Helps with pain and my medical cannabis does the rest. I rarely have a bad night, except of course when I have the Neuropathic Itch. And then it is more like a nightmare.

It seems like we all have to create our own paths through this journey of pain, depression, and anxiety. I know that next year things may be different. Right now...I am pleased with the changes and the duloxetine.

May you be free of suffering and the causes of suffering.
Chris

My name is Renee and I have severe chronic nerve pain from Complex Regional Pain Syndrome. I was diagnosed in February of 2019 after searching for answers from over nine different specialists and providers and numerous MRIs, CT Scans, x-rays, nerve studies, and spinal injections for pain. I was informed by these providers that I had scoliosis, post-surgical inflammation, arthritis, rehab illness, sensitivity to pain and work, and “nothing at all except psychosomatic symptoms.”

I developed severe weakness and pain in my right ankle, side of lower leg, upper leg, and lower back following a right knee replacement in June of 2017 which progressively grew worse and developed into ankle and foot allodynia and foot drop.

After visiting an orthopedic hand-foot specialist nearly 600 miles from my home who immediately referred me to an orthopedic spinal and back specialist, abnormalities were detected and I was referred to a neurologist. I spent seven hours and went $7000 into debt due to insurance refusal to pay for pre-authorized testing at this doctor’s office but he determined that I had major nerve damage to my lumbar-sacral plexus from the knee surgery and most likely Complex Regional Pain Syndrome. He referred me to a chronic pain specialist for further treatment and study.
It was there that I discovered I definitely had CRPS and at the implantation my DRG Spinal Cord Stimulator, the diagnosis was refined to Type 2, progressive with nerve damage and little chance of remission.
Since that day in December 2019, I have lost a 23 year career as a pharmacist, of which I was a manager in the last 6 months, a career as a multi-published Christian author although I do try to write and blog, and an avid outdoorswoman and Hunter, but as you can see, where there is a will, there is an way!
I can’t stand, sit, or lay flat for longer than 15 minutes. I can’t walk farther than 50 yards, lift over 5 lbs, or play my guitar.

I can advocate for those in my position, suffering my pain, and have no other pain relief covers but OPIOIDS. I’m allergic or can’t take any other meds making opioids and my SCS the only relief available to me and my disabled husband (post-surgical traumatic arthritis - 39 surgeries). I also know for a FACT that the CDC Opioid Guidelines do not apply to us.
Thank you and Remember God gives us strength to face the day. Ask Him for it!

In Christ Always,
Renee

Thank you for taking the time to answer me. I had a nerve test the other day and am seeing a neurologist. They gave me Meloxicam, but that did not take away the pain. I called and they said they would sent another prescription for me. If that does not work, I might go back to try Duloxetine. I was hoping it would help with my back. Just curious does it prevent you from sleeping; is that why you take Gabapentin also? Sorry to bother you. I wish you good health.

@faithwalker007

Hi Renee. I'm 70, and have been dealing with sfpn since the beginning of 2013. Doctors have prescribed one medication after another. A few gave limited relief for a limited time. Others have had no effect, while others have had minor to severe side effects. Early on, I was prescribed morphine sulfate contin, 30mg tid, and it's the only medication that's helped long term. I still have significant pain but mscontin takes the edge off.

A few years ago I wanted to see how much it was helping, so I slowly tapered off it, and after 2 or 3 weeks, it was clearly treating my pain. So I tapered back on it, but found that 15mg tid was adequate. Big mistake! Shortly after that, my pcp told me that he would NOT increase it. I really do need to get back to the 30mg tid, but he says that I'd just be needing more because I've built tolerance. I also take 1mg of Clonazepam for anxiety, and it has done its job for 14 years. But now it's a crime to take an opioid and benzodiazepines together. So, now I have to apply for prior authorization through my doctor. Did that in September, and it's only good until the end of the year.

My pain started in the balls of my feet and now it's hurting all of my feet and has moved up to my ankles.

If I stay busy, I'm distracted from the pain, but the pain is 5-7. When I sit down, stand still, or lie down, it ramps up to8-9. And that's how it feels taking mscontin. If I'm not hurting too much, I only take one in the morning and one at bedtime. If my feet and ankles hurt too much (9), I take the 3rd one at bedtime, and taking 30mg at one time makes a difference. After an hour, the pain is down enough to go to sleep.

Two weeks ago I had surgery for severe spinal stenosis at L3-L4, and L4-L5, hoping that releasing the pressure on the nerves will reduce the pain enough to allow the SCS to be adjusted and help with pain control the way it did 2 years ago.

I retired at 55 on Social Security disability because depression, anxiety and PTSD had left me unable to function in my job as a pastor. With the help of some good doctors and therapists and medications, those things are pretty much under control, though not completely gone.

Pain is a factor in the mental health challenges that I face. When it's a level 9, my mood is definitely affected. I need to communicate that to my pcp somehow. I've been talking about this with the therapist, figuring out how he can advocate for me. I do advocate for myself as much as I can, but I know it's not enough. The opioid legal information you mentioned is exactly what's going on here in Oregon. The decision makers are out of touch with a realistic view of the pain relief needs of those with chronic intractable pain, and whose pain is relieved only by opioid pain meds. And mental health seems to be totally off the radar. So what if the benzodiazepine is keeping anxiety under control. It doesn't seem to matter.

Well, by the end of November I'll be pushing my prescription drug providers to get the process of prior authorization approval started, in time to get it cleared before I run out of mscontin. I really hope that this won't be a quarterly hassle. It is certainly having a negative effect on my anxiety level.

I should have taken my meds an hour ago, so I need to quit writing and get ready for bed. I hope and pray with you that some of these issues will be resolved without having all of the collateral damage to those of us who need pain medications and take them responsibly.

Jim

That muley was a gift from God! We went out on a day hunt, scouting really because I was cooped up and wanted some fresh air.
I bought my hunting license, my hubby drove to the area, and we caught this guy grazing on his own! Twenty minutes later we were on our way home and several days from then, our freezers were full (hubby had shot a whitetail a couple of weeks prior).
Pain stayed at a minimum and I only had to walk about fifteen yards before and after!
God is good and so is my guy. Lol

Hello, Jim. I agree wholeheartedly and your story almost mirrors my own except I’m in OxyContin and my doctor will not let me take it 3 times a day. My pain is at a 8-9 level most of the time and I was on Dilaudid to deal with it. It worked but I had no life. I voluntarily took myself down to Percocet 10 qid which escalated my pain flares but I’m determined not to be a zombie.
My suggestion to you if you can do it? Join or create your own Disability Advocacy Task Force. Check Oregon Independent Living. We have Wyoming Independent Living and it’s funded through a national program for the disabled. They help find funding for electric wheelchairs, scooters, and advocate for the disabled in Wyoming.
I’m a member of WYDPAC - Wyoming Disabilities Peer Advocacy Committee - and our platform contains travel, healthcare, Opioid legislation, and many others.
We need to step up for ourselves because nobody will do it for us.

Thank you for taking the time to answer me. I had a nerve test the other day and am seeing a neurologist. They gave me Meloxicam, but that did not take away the pain. I called and they said they would sent another prescription for me. If that does not work, I might go back to try Duloxetine. I was hoping it would help with my back. Just curious does it prevent you from sleeping; is that why you take Gabapentin also? Sorry to bother you. I wish you good health.

@faithwalker007
Hi Renee, I'm Hank and I noticed this post of yours as I was poking around Connect this morning. I also went and read some of your previous posts from 2019. I'm sorry for your painful condition of CRPS. Also sorry about the hassles you are having getting the meds you need to give you a little bit of comfort. I noticed you and Lori @lorirenee1 talked back in 2019. If you look through your old posts you'll find your conversation with her. I have some questions:

Did you ever get around to trying kratom? If so, results?
Did you ever look into the Calmere (scrambler) therapy? If so, results?
How is your DRG stimulator working for you at this point and are you happy with it?

Lori had a DRG installed about 3 months ago or so and so far it seems it has not worked as well as hoped. Maybe you guys can compare notes. I love all of your pictures. Love your great dog! It's a shame such a seemingly idyllic life that you were living had to be so badly messed up by something as seemingly innocuous as knee surgery. I'll tell you, with all the people getting things such as CRPS and neuropathy from surgery these days it is making me very reticent to have surgery ever!

Best to you, Hank

@faithwalker007

Browsing the web this evening, I found an article, "Fighting Chronic Pain", by Peter Jaret, in the April 2013 issue of AARP magazine. It's pretty well buried, but I persisted by searching with the keyword "opioid". I arrived at the AARP website via federal seniors with disabilities searches.

Anyway, if you want to get your BP up a notch, read the silly things he reported as options for pain relief. Not all silly, but to anyone with chronic intractable pain, is massage a viable long term solution? Or acupuncture (who can afford either one, since Medicare doesn't cover them - that in itself ought to call into question the effectiveness of the many alternative therapies)?

I read the article and the comments by people who live in the real world, and have severe chronic pain. I'm going to outline a comment of my own and post it.

I haven't yet found a committee in Oregon that is addressing this issue. Unfortunately, Oregon has set the 90mg limit on opioids. Yes, marijuana is legal here, but that's meaningless to someone like me who can't afford the doctor who prescribes, the fee to the state (both around $250, annually), or the expensive product. On top of that, my doctor said that if I used any cannabis, he would stop prescribing any pain meds.

I know from experience that morphine gives me 50% pain relief, if I take my full prescribed amount, which I don't because I'm afraid of running out or being denied, and if I could get a therapeutic dose, it would be even higher. Jaret reported that opioids give only 20-30% relief. I have to wonder if he spoke with anyone who is in tears or suicidal because of the terrible pain. If he or someone he cared about were in that position, I wonder if he'd write the same (in my opinion) nonsense.

End of vent.

Jim