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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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I am so sorry to read that you have been suffering for so many years and your Nurse had never heard of the disease. I wonder why she didn't research A.A? Methadone allows me to live a reasonable life. It does give me constipation, but I take two full doses of Restoralax in water, when I get up in the morning. In U.S.A. it is called Miralax. I went to a Pain Department in a large hospital, where I was interviewed by a Pain Specialist and she recommended that I take Methadone. This has allowed me to keep my sanity. It is a devastating disease.
@laurenseavertson789 oxycondone or oxycontin?
@carolynhughes75 i have same pain same location, I can't take that drug, My kidneys aren't good enough. I am a senior citizen and my kidneys are no too great. I have been suffering from this condition for over 25 years. I now take Dilaudid pills. 2mg every 4 hours It's almost as strong as Fentanyl Only problem is it makes u very constipated Between u & me i never thought i would get that from my pain doctor. It's a surprise I thought for awhile, i might be suicidal from this pain, It was unbearable Since my entire spine is metal, titanium, i can't sit up, can't hold my head up. I spend about 22 to 23 hrs a day, laying, flat on my back. I have such severe neuropathy, sciatica and horrible nerve pain. Even dilaudid doesn't work, at times
@sophie46 I changed doctors to get the Dilaudid I guess a lot of these providers think pain, is pain & it doesn't matter. I've been to several pain specialists over these years. My opinion of pain doctors, isn't that good. I think it's a big money making rip off ( most of the time) My caregiver goes with me & has been timing how long my visits were. None went over 5 minutes & most of the time, 3 to 4 minutes & out the door! What other type of specialist could get away with less than 5 minutes a visit? A lot of pain management places, are just mills & rarely are willing to go to bat for their clients. I told my last nurse practioner that Arachnoiditis pain, is not just pain. it's agonizing. She acted like she never heard me. I went into my new doc & she immediately told me i must be suffering greatly & asked me, what i wanted? I switched docs right away. I'm tired of the BS ! I'm still suffering, but at least i can get off my bed for an hour or two, once in awhile
@conchgirl Think they took oxycontin off the market But they do have another long acting drug that's a substitute for it. Unfortunately, i develop tolerance to most drugs, very quickly. Increase in amount & frequency didn't help. I love Dilaudid ( i get it IV when i go to the hospital) Or i get Fentanyl. U have to develop a thick skin with this situation. U can't let them get to u. It takes awhile to do this, but my life has been total shit for over 25 years I've earned the Dilaudid Told my last doc, she should try living with this amount of pain I finally got pissed & politely told her she should know something about the disease. At first, i thought all hell was going to break loose, but i told her being a former RN for 40 plus years, gave me the right to to be honest etc. I told her that this pain isn't compatible with living & gave her some details, that i doubt she wanted to hear.... My life has been ruined. I have so many problems, that i can't leave my apartment & that it all sucks!
@sophie46 I have gotten all mixed up with emails etc I am now on Dilaudid pills 2mg 1 pill every 4 hours I hate to say this, but the Dilaudid doesn't work on 90% of my nerve pain. I can't believe it. I've been writhing in horrific nerve pain, bilateral, from groin down both legs & feet and every toe. I even took them every 3 hours for awhile. I give up. None of the nerve medications work either. I took Neurontin in escalating doses & became close to comatose. I would sit at lunch with my friends & couldn't follow the simplest of conversations etc. Took lyrica too, with severe problems. What the hell?? To say that i am frustrated, would be an understatement. The neuropathic pain i have is horrific. I can't get out of bed when it attacks. I give up Arachnoiditis is ridiculous...never know when i will be totally non functional. U can't even get an appointment with any neuro for 6 months around here. Last time (7 years ago) i had all the DX tests & neurologist said i had polyneuropathy, peripheral neuropathy & basically told me my nerves were a wreck ( the he left the room) Things are much worse now & i don't even know how to describe what happens...my legs jerk, fly thru the air & do some excruciating stuff. Sorry for being so negative, but my life sucks, big time, im broke, frequently in agony etc... I wonder what i've done to deserve all this. The trial of the pump was iffy, as most of my pain is in my legs & arms. I really don't have too much back pain. but i would prefer it, to this horrible frequent nerve pain. I can't go to Mayo, cuz i medicare & Medicaid & can't work, etc
@laurenseavertson789 I do understand how you feel, as I was like this before I went on Methadone. Sadly this does not help the nerve pain I get in my feet, legs, and arms when I am in bed. I also take Amitriptyline every night. It is so sad that your life has become so painful, through no fault of your own. Surely there has to be a compassionate doctor somewhere out there.