Adhesive Arachnoiditis & the Effects on Walking

Amen. Wish and pray for more Dr's to study this and research it bc it's a disease that makes you feel crazy describing it and also living it. There aren't many who have even heard of it. My primary was the 1 who read this and went you are my 2nd case. She said she had studied this and now understands more about why I feel the way I do.

I was shocked until I went home and googled this then I cried but I was so grateful for a diagnosis FINALLY. Archie speaking w you makes me feel good bc you can relate. Thank you so much. Sherry.

I have that fear also of being back in the wheelchair. I've noticed I can't get my back bone near my butt to relax at night to sleep , any suggestions ? I also have been waking up to have to lift my left leg with my hands to get it out of bed while sitting til I get circulation back in it to get up. It's like lifting a dead weight. These new symptoms are worrying me bc I remember these from before I had surgery . If any one knows of ways to relieve the pain in this area to sleep , even lying on my sides isn't relieving it , it would be greatly appreciated. Thank you Sherry.

I am having huge sleep disturbances, waking up every night at 130 am & can't go back to sleep. Something is often numb & don't know if it's my anxiety, fear of no longer walking with my walker or? Seems my overall anxiety just increases, as i never know how bad things will be day to day. It's a bizarre condition. Guess some people are stationary, while other's progress. I am so tired i am a virtual zombie. Not much good going on. How can u plan if u don't know if u can walk?

Hi Lauren—Archie here. I feel your anxiety. Sometimes I think anxiety and AA go hand in hand. As you know I have had AA since 1978 and anxiety started in the mid-1990‘s The answer for me was/is alprazolam (Xanax). I have needed as much as 1mg 5 times a day, but now do just fine with 1 mg 2 times a day. Early on I had full blown panic attacks- thought I was going to die… the whole 9 yards. It has been a lifesaver for me.
Be aware that thereis some thought among pain management docs that benzodiazepines (like Xanax) don’t play well with opioid drugs. I’m here to say “horse pellets”! Been doing it for over 30 years and have pain and anxiety pretty much under control. A good sleep med, Zolpidem (Ambien) is also a benzodiazepine, so here in Florida I had to find and go to a Psychiatrist who could confirm the anxiety /sleep issues problem , and write scripts for each. Also had to write a letter for file to my Pain Management guy.
This is too long, so I’ll write about your” I’m not gonna walk” anxiety later. Best, Archie

current neurologist has been giving me valium, which really helps. I was informed, that his office no longer doing controlled substances. Docs here are paranoid to prescribe any downers, since i am on low dose narcotics. Once this happens, where do i get valium or xanax?? I don't have any one who will give any controlled substances. Xanax, really helps me. Combination, doesn't affect me at all. Im going to have to buy from India, or black market. I am so bad now, that i pretty numb from upper waist down. I can barely sit up, as so weak. Going down hill, rapidly. Went to ER & doctors here are so ignorant & nasty. Had a doc tell me that it was impossible for me to end up back in a wheelchair. Guess he's telling me i am stupid. He said there was nothing he can do for me. Situation in AZ, is terrible with snow birds & having to wait 5 to 6 hours to get seen. I think i am going to be flat on my back, unable to care for myself. Can't even sit up to use my computer. I do not have money to buy from India. Costs a small Fortin. New PCP on 30th, fourth one in 2 years I am despondent, no help available. Not sure if i could even reach Dr Tennant in Calif. My current pain person is brand new with company & she's paranoid that i take valium. Thanks for responding. I think i will end my life, before becoming totally flat on my back. Any advice??

current neurologist has been giving me valium, which really helps. I was informed, that his office no longer doing controlled substances. Docs here are paranoid to prescribe any downers, since i am on low dose narcotics. Once this happens, where do i get valium or xanax?? I don't have any one who will give any controlled substances. Xanax, really helps me. Combination, doesn't affect me at all. Im going to have to buy from India, or black market. I am so bad now, that i pretty numb from upper waist down. I can barely sit up, as so weak. Going down hill, rapidly. Went to ER & doctors here are so ignorant & nasty. Had a doc tell me that it was impossible for me to end up back in a wheelchair. Guess he's telling me i am stupid. He said there was nothing he can do for me. Situation in AZ, is terrible with snow birds & having to wait 5 to 6 hours to get seen. I think i am going to be flat on my back, unable to care for myself. Can't even sit up to use my computer. I do not have money to buy from India. Costs a small Fortin. New PCP on 30th, fourth one in 2 years I am despondent, no help available. Not sure if i could even reach Dr Tennant in Calif. My current pain person is brand new with company & she's paranoid that i take valium. Thanks for responding. I think i will end my life, before becoming totally flat on my back. Any advice??

current neurologist has been giving me valium, which really helps. I was informed, that his office no longer doing controlled substances. Docs here are paranoid to prescribe any downers, since i am on low dose narcotics. Once this happens, where do i get valium or xanax?? I don't have any one who will give any controlled substances. Xanax, really helps me. Combination, doesn't affect me at all. Im going to have to buy from India, or black market. I am so bad now, that i pretty numb from upper waist down. I can barely sit up, as so weak. Going down hill, rapidly. Went to ER & doctors here are so ignorant & nasty. Had a doc tell me that it was impossible for me to end up back in a wheelchair. Guess he's telling me i am stupid. He said there was nothing he can do for me. Situation in AZ, is terrible with snow birds & having to wait 5 to 6 hours to get seen. I think i am going to be flat on my back, unable to care for myself. Can't even sit up to use my computer. I do not have money to buy from India. Costs a small Fortin. New PCP on 30th, fourth one in 2 years I am despondent, no help available. Not sure if i could even reach Dr Tennant in Calif. My current pain person is brand new with company & she's paranoid that i take valium. Thanks for responding. I think i will end my life, before becoming totally flat on my back. Any advice??

current neurologist has been giving me valium, which really helps. I was informed, that his office no longer doing controlled substances. Docs here are paranoid to prescribe any downers, since i am on low dose narcotics. Once this happens, where do i get valium or xanax?? I don't have any one who will give any controlled substances. Xanax, really helps me. Combination, doesn't affect me at all. Im going to have to buy from India, or black market. I am so bad now, that i pretty numb from upper waist down. I can barely sit up, as so weak. Going down hill, rapidly. Went to ER & doctors here are so ignorant & nasty. Had a doc tell me that it was impossible for me to end up back in a wheelchair. Guess he's telling me i am stupid. He said there was nothing he can do for me. Situation in AZ, is terrible with snow birds & having to wait 5 to 6 hours to get seen. I think i am going to be flat on my back, unable to care for myself. Can't even sit up to use my computer. I do not have money to buy from India. Costs a small Fortin. New PCP on 30th, fourth one in 2 years I am despondent, no help available. Not sure if i could even reach Dr Tennant in Calif. My current pain person is brand new with company & she's paranoid that i take valium. Thanks for responding. I think i will end my life, before becoming totally flat on my back. Any advice??

Dr Lakin not taking any new patients, but thanks for your help. I will have a counselor, after the Jan 2. I was paralyzed from MRSA chest down & spent over 15 months, recovering from this, plus prolonged rehab, then neck fusion. Can hardly sit up & marked weakness in upper body as i have AA in every part of my spine. Since i am Medicare & Medicaid, end up in the worst state funded institutions. Now living in independent living, but money running low. On section 8. I want to live like a human being, & am so tired of the ignorance, regarding this diagnosis. Lost all my savings, after 15 months in the hospital. Sleeping no more than 4 hrs a night, every night & it's it's difficult to even think straight. I am tired of begging for pain medication, & my BP is high from the pain, & probably lack of sleep. Thanks for your kind words

I understand completely what you and Lauren are talking about. I've had a good few days along w bad days. I understand your pain , and anxiety. I recently had to teach myself to cath by reading instructions bc I couldn't get an appointment before April. I felt so miserable retaining so much fluid I finally took it on myself to learn to do it myself.

Archie and Lauren I believe we are in the same boat . We are frustrated by no help , Dr's thinking your just drug seeking , I wouldn't wish our pain /anxiety on them. I take pain meds but I've taken more stronger and that Dr closed his office , then finally found another Dr, after almost a year but is very strict on writing pain meds. Also I see a pyschiatrist to get my nerve meds because if I didn't have them and my pain meds I don't know what I would do.
I was denied help from our local social service office which I am going to appeal , I am grateful for a young girl who comes to clean and do things for me , she's young and strong. But I can't pay her everyday ( school and plays ball) so she can only come for a few hours when she does come ,

Lauren please do not think of that way out. I pray God gives you a Dr who can help.you. I'm here if you ever need to talk. Sherry. Archie your also welcome to call.
I wake up some months to lift my left leg w my hands but I notice new symptoms, I'm dragging both feet w my walker , I am almost terrified when I shower. I can no longer hold head back so I have to use my kitchen sink and hold myself up to wash my hair , the shower is slippery when your using soap shampoo etc. But I do it , I don't know if you all notice I can apply lotion drink bottles of water etc but I have dry skin , even after using lotion etc ,

Lauren please reach out for help , I told my Dr that I understand why people go that route but I've also seen my father commit suicide and I would never want to put anyone thru that , When it gets to that point please seek help. We are here for you if you ever want to talk.
I'm grateful for this way of letting out what we feel bc it helps.
I know you are experiencing the same pain and symptoms
I send prays for you all , I understand the sleep issues , I sleep an hour or maybe 2 but never an entire night , I can't remember a whole night of sleep , positioning in bed is crazy , waking up to bladder pressure , pain. , especially when you know it's worn off.

Idk if any of you have taken meds for pain ethics is suppose to be Tim Dr released but I have tried it only it didn't work as well as the instant release. Any opinions ? Bc that is shat pain management want to change me over to , I've been on alot stronger meds which I couldn't tolerate , and went back to meds that did work .
I'd rather be civil and ask for what I know works , I'm not a risk I just want to live as good a life as I can bc we all know what we are facing. This is daily and doesn't get better. Thanks for letting me rant etc . Sherry