Any one else have Arachnoiditis & intractable pain?
Been on here before. I have severe Adhesive Arachnoiditis Had condition for 20 plus years. But now my pain is unbearable. Numerous attempts to get any doctor for help. Former RN & health degree too. Live suburb Phoenix, young senior. But have a New Pain doc (PA or NP) She's upped my OXY to 10 mg 4 times a day. Worked for 2 weeks?? Nothing stays the same with me. Now , pain is sooo severe, i can't get out of bed, or only for about 1 hour. She just increased my dose, & i tried to tell her diplomatically, but she didn't hear me. I live in retirement community over 19 years (cheapest place in Mesa. I started video, telehealth counseling. She's great, but i am EXTREMELY sleep deprived, fell asleep in front of my computer & slept thru an appointment & my mind is so foggy, I cannot think straight I am fused C3 thru my sacrum, Two thoracic levels, not fused. obviously, have very limited mobility, have caregiver 20 hours a week. But pain & spasms so severe, i want to chuck the whole thing. Former RN, But no one willing to manage pain from Arachnoiditis, due to opioid crisis. Brought in Dr Tennant's materials, as usual, they couldn't care less. She didn't even know i had this diagnosis & when asked, she didn't seem to care. But she got me some Relistor for opioid constipation & gets things done. I get only 5 minutes, at most (my caregiver times this) I am pretty broke by now. I only get Medicare & Medicaid. And not much in savings, as i was totally paralyzed with Mersa & and was hospitalized for 13 months, including rehab, before the Mersa Think I've been on oral meds, on& off over 25 years, and resistant to them. Now the 1 pill of 10Mg Oxy, holds me for an hour, sometimes up to 4 hours. I have Xtra pills, I can't drive, take taxis The extreme pain follows my upper thru bottom of my but, it follows my lower hardware, & even includes my neck too. Help! What do i do. This is not my first pain management, every Doc in the Phoenix area, won't do appropriate pain management for Arachnoiditis... I no it's from the opioid crisis, as they tell me so. I can't even walk to our dining room any more. They deliver, but I'm so isolated & pain so severe... My life is wasted, I'm so lonely & managed to piss off, my best friend, partly due to severity of my pain & anxiety etc... Regular people don't understand. I really need some pain friends & will offer real support. I know, other residents here don't understand, or care, everyone has problems. I am now so depressed & i doubt my pain will get better. Used to go to few hospitals here, when i was despairte, & get hooked up to Delaudid, or Fentynl for a few days. But now, seriously doubt that's doable right now, i can't sit up, or spell think i have dementia Message me or anything please...i now have bad bowel incontinence, makes it difficult to go out or to dining room.
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@carolynhughes75 They can't due to severity of my kidney's... Was totally paralyzed with MRSA, left me with permanent suprapubic catheter, drug resistant UTIS (tons of those) Plus i have pretty bad, BOWEL incontinence, sometimes 8 times a day etc...I'm fused C3 thru Sacrum & nobody want's to t treat me & i don't blame them. Last time i was in Scottsdale hospital, they told me That my UTI & DX were too difficult to treat together.. I was appalled, all they did was rescind my order for IV Dilaudid & This went back & forth. Was only a temporary situation, but i only ended up with 1 dose of .5 MG, before it was taken away for good
@laurenseavertson789
So sorry. You are in a really tough situation. I would be looking at other options with Dr Tenant's protocols. Best wishes to you !!!
@gsr4863
Do you struggle with awful pain in your butt near your anus ? That is a pain from arachnoiditis that just drives me crazy. So thankful for having Indomethacin which helps.
@carolynhughes75 my kidney's bad & can't take it. Poor kidney function & no doctor will support this drug. I am old (young 75) But can't take most drugs, due to this factor
@laurenseavertson789 I am getting a pain pump Trial is set for the 25th I am hoping that i will get some relief. I am fused from C3 thru my sacrum. I also have pain in my neck & both legs. often have bilateral severe leg & foot pain, sciatica etc. If the pump doesn't help, i will be screwed. My pain doctor thinks he's well versed on Arachnoiditis. Of course, he isn't, but he's willing to try the pump & experiment with different drugs. I'm allergic to morphine, so i guess it will be dilaudid. have you ever considered the pump? Oral drugs, not working that great.
@laurenseavertson789 I was in another trauma hospital for drug resistant UTI's & they gave me dilaudid with no problem Guess it just depends on hospital & doctor's involved. Right now i get 10mg Oxy four times a day. Think my current pain doc would increase this, if i asked. But i think the pump will be a better alternative. I do have a psychologist, & she's willing to deal with my situation. However, i have a hard time socially. When men see my walker, they flee & it's just very hard to have this DX, in a world where everyone wants to hike, be real active etc.. But i do go to senior fitness classes & do the best i can
I have severe pain but fight using pain medication because of the stigma. I hurt my hip and went to er. I was admitted. Ortho misread reports and misdiagnosed a need for replacement. And best of all he didn’t believe or know about arachnoiditis so he put in my record that I had ms. I went to physical therapy rehab and they ignored me saying I had arachnoiditis and treated me as having ms. They suggested carrying my records everywhere so I could “prove” my disease