Chronic Pain members - Welcome, please introduce yourself

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

@faithwalker007 Welcome to connect You are one brave women to go through all you did And still get a 4point buck you showed perserverance Congrats on your tenacity. I was an archer hunter back on the days I got a 8 or buck dressed out at 200 lbs my husband came home from the Mts with a 90 lb b uck he didn't live that down

@faithwalker007 what are the CDC Opiod Guidelines? Sorry to hear how awfully the medical system failed you.

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

Hi @jerid could you post a link to this product? I do not find it on Amazon. A direct web link would be helpful. Thanks!

Chris Trout
In your post, you mentioned medical cannabis and sleep. I have a sleep disorder that sleep medicine does not know how to treat. It is called epic (non-rem) dreaming and I have suffered with it most of my life. I have mentioned trying cannabis but they don't seem to want to try it. Plus they do not know anything about it. What type, strength, smoke, extract, etc. I am tired of taking antidepressants like a lab rat. Can you tell me anything about how cannabis might affect dreaming?

https://www.amazon.com/LaserTRX-Relief-Laser-Therapy-Device/dp/B07HQTB77T
This has the best price of $985. and is the one we got. It comes with safety glasses. We did not realize that and ordered a purple pair, but the included ones fit my head the best. I have to use it on my forehead and scalp. I will tell you the first few times using it it seemed to rile up my nerve, but after the 3rd time I really am doing better throughout my day. I use it 2x a day like in the instructions. Hope you find it helpful. Would love to hear back if you do purchase it and use it.

I have been smoking 50 years and there isn't a moment I regret. First place marijuana does not kill pain. It relaxes you and helps you deal with it a lot better. It calms you as it makes you hear better taste better feel better and the best part about it it could make you smile. I'm a chronic pain individual who takes Miles opioids because I've given up and everything else as far as trying to dilute my pain. Cannabis is just an additive that makes the whole thing work together and makes life a little easier to deal with our discomfort. When I take a puff and it's just a puff and if you have quality cannabis in a few minutes your taste buds increase, music sounds fabulous, and this best it greates euphoria of calm.
If you live in a state that it's legal go to those people & up for it and they will guide you on what is best and what to choose from for the different types of a feeling that you want to create azerrz different strains for different feelings. It's worth it that's all I can say and best of luck to you.

The CDC Opioid Guidelines - maximum of 90 MME of opioids prescribed by general physicians, nurse practitioners, physician assistants, etc. to acute care, short-term pain patients in the regular capacity of their practice. It does not apply to pain care specialists, oncologists, dentists, or other specialists who treat chronic pain patients, neurological pain patients, specialists dealing with end-stage disease, and cancer.
They are also just GUIDELINES, not rigid statutes meant for the medical world. The DEA has overstepped their bounds as a law enforcement agency (not a medical practice entity and authority).
They are threatening doctors and pharmacists to withhold care, treatment, and comfort from chronic pain patients who deserve to live quality lives not tortured ones.
New Hampshire passed legislation to keep this from happening. It’s time every state stepped up to the plate and did the same thing.

My name is Renee and I have Complex Regional Pain Syndrome. I live in Wyoming. I developed this disease after my knee replacement in 2017 and have been fighting for a diagnosis, medical treatment for the pain, and a continual search for quality and hope in life. As most know, in today’s paranoid, narrow-minded view of pain and its treatment, it’s becoming harder if not impossible to do so.
Life though isn’t about pain, it’s about joy. It’s not about control and manipulation but strength and courage. And most of all, love. I’ve learned I’m never in this alone because even if I don’t have friends or even family by my side during the hardest, most unbearable days of my life, I always have the One Person who has never left my side and remains beside me today— my Friend, Jesus.