Arachnoiditis: Looking to talk with others

Hi—Archie here- don’t you love the phrase „just arachnoiditis“? It speaks loudly of their misunderstanding and impotence. If you’re surviving on 5 mg Oxy b.i.d. And 5 mg Xanax tos, it would seem you are significantly under-medicated. Are you sure you’re not forgetting something or leaving a med out? Again, I’m reacting only from what you have told me, not from examination, but good Lord, I don’t understand how you can manage severe, constant pain with these meds at this level. A serious question I have no privilege to know- but is there anything else at work here. Do you have a history that requires providers to limit controlled scripts? Please don’t answer me, but if this is the case then you need to address this head-on with Pain Mgt Drs, and get everything on the table. Honestly, it won’t make things worse. Part of the solution is to keep a JOURNAL that tracks your pain levels and med use, and anything else that is germane. In other words, unwrap the puzzle for them, don’t make them work for it or make suppositions. This is a large part of being your own best advocate.
Be well, Archie

Hi,I was diagnosed with Arachnoiditis when I was in my 50s now I'm 71.Just this last yr a dr miss diagnosed me saying that I have a tumor inside my spinal cord. They operated and it was Arachnoiditis. They put a patch on the spinal cord to give room for the nerves all sticking together.Im not on pain meds.I take an ibuprofen when I need to.I feel lucky so for.

U are lucky. Every case is so different. I dodged the bullet for awhile. But now have severe, unrelenting pain. Can't sit up, or get out of bed too much. Your details are harrowing, being misdiagnosed that way. Hope you continue to be pain free. I am at the point, that i need to go to ER for large dose of Dilaudid ER's here, are so over crowded & back pain is not considered an emergency, so you go to the end of the line & sit in waiting room for 6 hours, before getting seen

My pain wasn't too severe, for a long time. I do not have any history of addiction, or abuse. Just distaste or narcotics, as they give me horrible constipation issues. I am now on Oxycodone 5 mg three times a day. & was given patches of Buprenorphine 7.5 mg . However, the patches gave me severe gas pains & more constipation. tried twice, but gave up. I now have such severe pain, i can't sit up. I am unable to function. I am supposed to get a right shoulder ablation next week & need to talk to someone in pain management, as i feel like i am being knifed in low back, sacral area. Pain management telling me i can't see NP, same day i get ablation. Tried telling them, that i can't get out of bed, let alone, additional appointments. They R telling me that this is Medicare dictating the rules. Do u know what the DEA allows PM docs to prescribe? I am allergic to Morphine, but Dilaudid works. How many months of agonizing pain, does it take, before i can get adequate pain relief?? Ridiculous that we have to go to the ER. ER doctor, last time, said i was drug seeking!! Severe, constant pain, started about 6 weeks ago. Before this, i only had episodes of horrible pain, which made me go to the ER for 2 to 3 days, on large doses of Fentanyl My AA pain moves around. Don't think most NP, even in pain management, know much about Arachnoiditis. This isn't pain compatible with living. See new pain doc, on the 9th, about pain pump