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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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HI there, so sorry for your pain. I have tarlov cysts and AA too, though a milder form. Though I use all natural supplements with only a few pharmaceuticals. Have you visited The Tennant Foundation website, arachnoiditishope.com? Dr. Tennant is a retired pain medicine specialist that offers comprehensive protocols for treating AA. There are many great Facebook groups also for AA where members can offer things to try and resources. You can also email Dr. Tennant directly and he'll respond with suggestions. tennant@arachnoiditishope.com
Hope you can find some relief and understanding. Hugs.
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3 ReactionsLauren, Hi I also have arachnoiditis and the pain from it is bad. Please get your doctor to put you on Indomethacin. It actually helps my arachnoiditis, especially the pain in my butt, especially around anus. Who would ever think that your anus could hurt so bad. I also am a disabled/retired RN. Surely you can find a doctor that will prescribe it, since it isn't a narcotic. Be sure to always take it with food. I take 50 mg PRN up to 3X per day. Best wishes to you.
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1 ReactionPrayers for you! I saw someone suggested Indomethacin which might really be helpful along with a narcotic. It is a strong anti inflammatory and may help. I was diagnosed with RA in my twenties and then the DX changed to spinal inflammatory arthritis later and given that drug for both. It was helpful. May helpers and good doctors show up for you. Sounds like you need a change if at all possible.
Hi @laurenseavertson,
I'd like to invite @scouillard, @pdabbott, @bolake, @sophie46 @gsr4863 and @cgreenle to this discussion as they have had experience with adhesive arachnoiditis and may be able to share their experiences with you.
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2 ReactionsI had an Arachnoid cist removed. After a Puncture during a epidural. Three failed blood patches. Chronic Arachnoiditis. My feet are on fire 24-7. I take 800mg Gabapentin 4 times daily.
Arachnoiditis SUCKS
I need help
@carolynhughes75 I also get the pain in the butt. I had no idea it was from the Adhesive Arachnoiditis. I put a Anusol suppository into my anus and the pain immediately goes away.
@JustinMcClanahan Would love that, but since i can't hold my head up etc....Will be challenging When will it be exactly? Feel like I'm going to pass out, from most severe pain, that I've ever had. Just got a great therapist, free for me She has PHD & doing on computer. I can't function, due to pain, all my hardware, can't drive, etc.....feel like I'm on Mars or some other weird place. Dilaudid, IV is good. But no one cares, or will risk their licenses for any narcotics. I've had severe pain from Arachnoiditis, but this is basically my entire spine & it's hopeless. My spine surgeon, got me out of 6 yrs in a wheelchair, but now i feel like I'm in Hell... No family, have a sister 16 miles away...says i'm doing all this for attention, making it all up! Since i was totally paralyzed from MRSA, etc....just one crisis after another. I get 5 minutes, or less with my pain Doc.. I asked her if she was familiar with A, & she didn't know what it was etc...She's not my first pain doc,,, I think i need a neurological inpatient rehab. I can't stand up long enough to take a taxi, etc, for out patient rehab. I also have severe pain in both arms too ( my spine tethered C, 5 6 & sacral area. ) It all sounds crazy & not sure, if i can make it..i might go crazy from severity of pain ETC... Live in Mesa AZ, Help, i can't sit up to type this, pretty much, not able to function Have severe Bowel Incontinence...going as much as 8 times a day & much difficulty in cleaning up, cuz my spine is so rigid, no water therapy, cuz of permanent suprapubic catheter & i'm multi drug resistant ..Require IV antibiotics for 5 thu 7 days. due to resistance... Is this a nightmare??? Can't exercise much ( used to work out 6 days a week etc) I'm basically 'i"m vegetable, can't hold book, magazine, Go to the Dining Room, can no longer take senior fitness classes, on & on... Plus, i may have to move to another apartment in this Retirement facility...read all Dr Tennant's stuff, but i can't do most of it. So stiff, i can hardly move....fell on my back & head weeks ago. hospitals here, so over crowded, & they just dump u ...Wish i could get help from Dr Tennant, but i'm very severe pain, trying to write this even Can't put together all my shit. I wouldn't believe it, if someone told me all this.. would think i'm crazy!! i need relief fast. Any advice.??
@tkdesign Can't go on Facebook, due to suspicious activity 2021. No one has been able to get me on...would have to change my phone number & everything else Not making any of this up...My nightmare life goes on & on from Arachnoiditis. No more boyfriends, friends give up, cuz i can't do anything.. I need Dr Tenant, badly. But i can't get it together, no sleep etc sorry for my mess
@joycelen They won't give it to me, due to bad kidneys... I'm a young 75, but kidney's ruined from more than 6 months on vancomycin etc.. I've had several bouts of MRSA cellulitis, & they barely had anything to treat me with. Thanks for the response, i appreciate it. I need major help from DR Tennant, but would need someone to do the write up...i can't use my arms, hands neck, spine etc......due to severity of pain & amount of disability Lauren Seavertson
@laurenseavertson789
Maybe your caregiver can email Dr. Tennant on your behalf to ask for suggestions. I was diagnosed in 2008 and was in a bad state when I discovered Dr. Tennant. His protocol has allowed me to better control my pain as opioids don’t help me at all. I’m not cured or pain free but I’m doing something positive to help myself, which gives me hope. Maybe he can help you too.