Arachnoiditis: Looking to talk with others

Yes. It's legal in VA . But needing to get a medical card just in case bc you can walk into any stores here to purchase it but I don't trust I'm not going to end up getting fentyal and die . I'd rather have what a Dr would prescribe to be on safe side. I have tried gummies and yes they help . I live in VA but went to Dr which TN and VA are just on opposite sides of streets ( no joke. Walk on one side it's VA cross the street it's TN) I went to pain management on TN side and test w slight amount of thc on my screen , Dr was so interested in that , he didn't look at MRI ( in April 24 ) to see radiologist had flagged it and didn't tell me of arachnoiditis. I went to my primary and told her I was seeking home help and needed a diagnosis so she seen the arachnoiditis and this was last month. Nov, and asked why the Dr who ordered mri wasn't upfront about this serious condition needless to say she was furious I had suffered so long wo knowing , I haven't used gummies marj etc since the Dr said it's legal in VA but not TN so I quit to get help , I went back knowing in 7 months there should have no trace of thc in my system . Well guess what? Got to return again ..... it's a drain your insurance racket .
She also said the meds I'm on is too much and if ( big if ) she changed it then she would put me on slow release ( acting) meds .... been there. It doesn't work. I have used morphine , fenyal patches, oxycoton , etc only w so much vomiting I wasn't able to care for my preteen son
I had to go back to lower meds just to be able to get him to school back from school to after school activities etc wo killing someone so I suffers til I returned home at night to get my meds and start all over next day .

Today I used my first cath to finish draining my bladder. I was so proud of myself , I know it may sound small but I hadn't been taught but I learned having taken nursing classes in my past , I was happy I was able to do this .

As far as bowel issues I have had gastro Dr tell me I have hardly any spincter muscles left but I still try my best to try to go , only it comes out as gas , after usually 3- 4 days I will take a laxative 2 if it goes over 5 days but yes it's humiliating not to make it to bathroom and wear a mess. I cry but I know atleast it's out and I can relax for another few days. I try not to eat certain things bc it does build gas and I try to eat healthy but when you can't stand for long it's hard to cook 3 course meals.

I miss my gummies but if when I return to pain management if they refuse to help I'm done w them and will stay w my primary care who seems to know about this disease and is willing to help me.

I actually was so proud of using that cath I walked from my bathroom to my living room wo my walker wo thinking. I started to get up and asked my cleaner where my walker was , needless to say I was shocked and happy I had done this.

I pray for you all. Try to be happy even w the smallest things you gave to be grateful for. The Lird blesses me each day to still get up out of bed , I have a bed , a roof over my head , and running water , I'm just praying I'm approved of this young lady helping me w cleaning and daily things , if not I suppose I will have to pay her out of pocket for few days a week.

I hope this long winded message helps someone but I am also fearing total loss of my bowels.
Thank you for understanding
Sherry.

Also, i have total numbness in groin area. I can't feel much of anything. Also, now most of my feet are numb & having numbness & tingling in both arms, as well as my legs. Saddle anesthesia? Guess i need new nerve conduction studies. Call my neurologist & see if i can get in

Guess i am bugging you again. But what medications are u receiving for pain & and what all are u taking, for pain & nerve issues? Asking, because i was hospitalized for severe pain & received Dilauded which worked. When i went back to pain mgt, she wouldn't give me good stuff, & prescribed pain patches of Buprenorphine Pardon my typos. This is in addition to oxycodone 5 mg three times a day ( only been taking two of oxycodone, due to constipation issues) I took second patch off, as i developed severe gas pain. Could not pass gas & i couldn't go to the bathroom. Don't mean to be gross, but i have pooped in my pants & couldn't even feel it. No one knows much about Arachnoiditis, but my neurologist, who prescribed Medrol dose pacs & Diazepam. Woke up today & i can barely feel my feet, they are almost totally numb. Need new nerve conduction studies, but my neurologist too busy. Impossible to get appointments with specialists, due to shortage & snowbirds here, in AZ

No one wants to treat, if they even know what the condition is. Congratulations on self cath. Guess I'm glad to have permanent suprapubic catheter? This, in spite of drug resistant UTI's. My last pain doc said to take the weed. Now there is a totally new doctor in this pain practice. I just assumed it was okay to use. Now the total numbness of groin. It's hard not to feel severe anxiety, as my biggest fear, is to be back in my wheelchair. Asking, because pain doc, refused me anything stronger for the pain. When they see the combination of narcotics & pain meds, they go crazy. rarely take the valium, for fear of running out. Saw that someone was on big narcotics & wondered how they got them? Rather have the pain, than total numbness If u want to email laurenseavertson@q.com My friends think i am crazy, so i am not going to say anything, anymore. It keeps getting worse & i don't know what to do at this point lauren

as far as the weed, go to a legal dispensary, if u have these. In AZ, weed is only sold at these dispensaries, & u don't need a medical card (it's a rip off, as i had one) It is legal in AZ, for both medical & recreational. No fear of getting illegal fentanyl. But it can be expensive, if u need to take it all day. I use it to help me sleep. It does not stop the pain, just makes me unable to think & worry too much. Wish i could go on Facebook, since i now have saddle anesthesia

U sound like a wonderful, caring, special guy. I have had Arachnoiditis for 25 years? it didn't get really bad until my spine surgeon put all my hardware in. I'm fused from C3 thru my sacrum. I never know what i can do, until i wake up every morning. Can't plan on anything, i'm single & have no life. I was in a wheelchair for 6 years & my biggest fear is ending up, back in a chair. I was paralyzed from neck down with MRSA. spent 15 months in the hospital, rehab & then cervical fusion. Hate to be bearer of bad news, but really no treatment except steroids. I always hear, that i look so nice...couldn't have anything wrong with me. I work out with 5 lb weights & do squats, to strengthen my glutes & quads. Have worked out & been active my whole life. During flare, i couldn't do anything. Hospital situation in Maricopa county, sucks, big time I was an RN for 40 years, & got a master's in Health care admin. Had to quit work after my paralysis. I live in cheapest retirement community in all Phoenix area. however, they are raising rent 8 % a year. I am on section 8, but i will be running out of money in 3 or 4 more years. I get most of my meals here & i know i couldn't function in a regular setting. There is next to no housing for disabled here. I called the housing authority & asked what do i do, when i can no longer pay the rent? Basically, was told, that i'm not alone. & nowhere to go. When the pain gets unmanageable, i end up in ER, begging for Dilaudid. It often takes 6 months, to get an appointment with a specialist & snowbirds make it that much worse. I haven't found any practioner willing to read Dr Tennant's information. They just dismiss it all. This is a terrible condition. bad enough to suffer, but the ignorance, is inexcusable. I was asked to evaluate my last hospitalization.... told them it sucked!! My spinal nerves are a mess. I already have a permanent suprapubic catheter, from my paralysis, now i am having bowel incontinence ( some of the time). I have severe brain fog & severe insomnia. The DEA, prevents pain docs from being able to prescribe decent meds, for pain control. Has anyone gotten an intrathecal pain pump for Arachnoiditis? If so, did it help? My spinal cord is tethered at C6 & sacrum This makes me have pain, down both arms, as well as lower body. Don't know if they can help, since i need pain control from my cervical region, down... it's very hard to be positive, I have told a couple of ER docs that they suck! Wanted to say a lot more...so tired of begging for enough Dilaudid.... Now my current neurologist no longer prescribing controlled substances. I need diazepam &some decent help for sleeping. I am only able to sleep 3 to 4 hours a night & my cognitive skills have gone down by 50 %?? Anyone else having sleep issues. I am feeling sorry for myself, but at this point, have no energy to fight the system here in Phoenix area. No university or research hospitals around here Sorry for the bitching. I held high level jobs in the past, but now, i am reduced to begging for help If u want to email, laurenseavertson@q.com

May i inquire why U are detoxing from your pump? I have an evaluation on the 9th, to see if i would be a candidate for the pump. As a retired RN, i know DEA prevents us from getting any decent pain meds. Not sure there's any alternative for me Know Dr Tennant has closed his practice. Do u know if it's still possible to contact him?? I am desperate laurenseavertson@q.com

Great to hear back from you Arxhie , I've been having a few bad days here. But have had you on my mind. We need to do the pm messaging. I'm going to try to figure it out. Have a good day if possible. Will get back to you soon.

Thanks so much for the support. I really do appreciate it. Can i ask, do u take any Benzos? I started with my 5th PCP yesterday & of course, he's concerned with possible consequences. Dr Tennant recommends Diazepam. but, no clue who's going to prescribe? I wouldn't mind managing all these symptoms, but i need the Valium. Doctor's don't seem to understand the pain, or need for effective pain management. He started me on 30mg of Cymbalta. I have some pretty severe arm pain as well as the lower half. Will see what new pain doctor has up his sleeve. Start counseling this Thursday, but i really need some hands on support. I am kind of despondent, as about all i can do, is some very basic grooming. Seems like i lose functionally daily Used some edible weed last night & at least i was able to get few Xta hours. May we all a good new years

Archie do you and Laurean have issues with temperature issues ? At night? Or day? I wake up at night and my feet are OK but my torso feels like I'm on fire. Please help and let me know if you have these problems. Or anyone else??