Chronic Pain members - Welcome, please introduce yourself

@mrmacabre . I know exactly what you mean. I almost laugh when I see my pain doc's after visit summary. Even though I fill out the requisite forms with "Pain level now:" and I always put 8/10, he will describe me with glowing terms..."pleasant, no major issues, on such and such drugs". It''s as if you have to be writhing on the floor, crying out in pain to be believed.

As you continue to read the various comments from fellow pain sufferers, it should become evident that not all PN patients have pain, even after years. I guess they are the lucky ones. My PN started about a year ago. I had lower back and buttock pain from a bad fall ten years ago. I had the pain under decent control for a while with the help of some drugs and a SCS. Four years ago the pain came roaring back. In 2023 I had a pain pump implanted. It has not yet given me any relief. I am in the process of having it amped up slowly. I had just one day when all the pain in my feet and back of my legs disappeared. It was magical. Then it came back the next day. Will continue ramping it up until I can get that relief again.
Is your pain bad enough to warrant a pain pump trial. In my trial the pain dropped from an 8 to a 2. I wish you well on your journey.

I had relief of my upper back stiffness with baclofen in the pump but developed new low/mid back pain. Initial work up by the pain group (minimal, just plain X-rays) was unrevealing. I had to, over multiple visits and multiple visits insist on having the pump removed. I just had a gut feeling something was wrong.

They finally took it out and didn’t say it but implied they were done with me, no more pain pills.

Work up by a spine surgeon found arachnoiditis, inflammation of the lining of the spine in response to the pump. It was not on my release to have the pump. It is rare but becoming more common as more spine procedures are done.

If you are not getting relief, your risk / benefit ratio favors getting it removed. There is no treatment for arachnoiditis and it is progressive, ie. it gets worse as time goes on. For me, the only on who advocated for me was me. Not my PCP, neurologist, physical therapist, and definitely not the pain doctor.

I tried seeing a pain specialist a few years ago, and it didn't make even the slightest bit of improvement, even after a nerve block injection in my back.
A waste of time and money IMO.

Pain docs are well trained in medicine treatment of pain. Ironic and distasteful (imho) that they seem to never prescribe them. Certainly procedures pay better than medication management. I think the studies show, correct me if I am wrong) that only 5% of pain patients misuse their meds . Far different from the recreation user crowd. But somehow wanting adequate pain relief has come to be seen as close to criminal

I thought I had introduces myself, Sorry.
My name is Wendy and from having RLS since the 1970s, and then this Neuropathy began in 2016, but was not diagnosed until 2025. I'm an Australian and we don't have a great health system like USA, thus I have joined your support group, and already I've learnt things I didn't know. I'm well into pain now. As people just don't understand I need to talk and listen to people who know what it is all about. Thank You @wenner

@wenner I’m so sorry to hear you have neuropathy.

I do too. Polyneuropathy is just annoying for me.
I never heard of Grades for neuropathy.

There is no cure for neuropathy. I suspect that if you have it, the nerves are damaged already so there is nothing anyone can do now. Maybe that’s why the doctors basically brushed you off.

@laura1970 I know. In 2019 I had one of the most painful surgeries, a total knee replacement.
I was not given pain relievers to take at all. They did fill the knee with a fluid for pain for only 3 days.

Had lower back surgery in 2022 with a rod, then this year feb. 2025 left total hip replacement, and in July this yr. Right total hip replacement. Just since this past weekend I have had severe pain in lower side and lower back. I was told by the Dr b I have arthritis al l through my back. Anyone going through this?

Christina 62 years old
I have had Neuropathy for over five years with no pain relief. I was even prescribed Hydrocodone and that does not help me. It only constipates.

I have a Spinal Cord Stimulator on the left side in my back. No relief. My husband and I have been asking for help with my scs and also, everytime I have to go in for pain medication, my insurance is charged around $350 to $460 per month. That’s after my yearly deductible.

Does anyone have suggestions on what might help or what helps them?