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

I have been diagnosed with AA and trying to learn what I can about the condition as my attending physicians know little more than I presently do. It seems I have all the typical symptoms and have been put on pain management. The last couple months my hands, especially my two index finger’s, have been hurting and constantly sore feeling. My neurologist feels that this can’t be caused from AA since the diagnosed area is around 3rd and 4th lumbar vertebrae and she doesn’t feel it can travel up the spine and out to upper limbs. Curious if anyone has experienced similar issues.

Hi USWPRes1– Archie here—

You ask some interesting questions, and the answers can be as unique as each patient. You didn’t mention what symptoms you do have (and where) and this would help immensely in trying to help answer your questions. Welcome to the group—if you’re here we all know why, but please help us know you. A review of earlier messages will help you understand what others in the group are experiencing.. Look forward to hearing back soon.
Best, Archie

My symptoms are constant pain in my lower back, burning sensation down both legs especially prevalent in feet. My feet sometimes feel like they’re going to break with every step. I have stabbing feeling in thigh muscles especially my left side along with burning, aching in buttocks again more so on left side. The hands issue started a couple months ago. MRI was done on my cervical spine last week and I meet with neurologist next month for follow up and nerve conduction test. She obviously wants to rule out neck issue. Again she doesn’t feel AA can travel up spine and out to upper extremities. Five months ago when first diagnosed I was put on pain management consisting of gabapentine, duloxitine, Tizanadine, Baclofin and, last month, Tramadol. Still in constant pain.

Hi— Archie here-your msg was very interesting. Constipation is a serious issue at one time or another for us all. Especially if you are taking oral opioids. A simple solution can be Metamucil taken as directed. Another solution (RX only) for patients with more severe problems is a liquid called LACTULOSE. 30-60 ml/ day and the results are a return to natural function and can be marvelous. This is a daily dosage. It is a well-known solution among gastroenterologists, so now you know.
Re “What can PainMed Dr’s prescribe,” this surely varies by state, but in intrathecal pumps, for example, Dilaudid is often n preferred. Morphine can have more side effects like flushing, itching, stomach upset and so is not as satisfactory for many. Really there is no “medication” that PM folks cannot prescribe, but the patient and symptoms must fit the profile. Hence my recommendation that you keep a DIARY— make it obvious that you need help, and at what level. The choice of meds will vary, but the goal is always the comfort of the patient within the law and ethical practice of medicine. Also, please remember, often in the PM world, meds of the benzodiazepine class MUST BE PRESCRIBED BY A PSYCHIATRIST.Hope this helps Be well, Archie

Archie I do have constipation from opioids. But now i seem to having bowel incontinence (not all the time) My spine DR said it's not from my hardware or back , but he said it must be my arachnoiditis. So now i am going to look into this issue. Certainly, not dinner table conversation, but it cab make any social life almost impossible