Arachnoiditis: Looking to talk with others

Hi don, I know how you feel, same thing has been going on for along time. AA so complexed it seems they can't be bothered. I bought Tennant's book $ 20.00. It's informative but shy's away from putting the blame on doctors. He's very passionate for AA Patients. He has a interesting background.

Today I saw my Pain Management dr. he added more Hydromorphone in my pump and the time I can use the a remote that gives me an extra does if needed. I mentioned how much my hands to elbows wake me, he told me it's coming nerves are coming from my neck! All I could say was "oh no!" I decided to contact a neurologist to see if the nerve damge could be stopped from spreading. I sent my history to a Neurologist and was so surprised when they told me the dr. read my information, to does not take cases like mine so I was referred group called, Aggressive Neurology. I was so happy that a dr. cared enough to contact me. I was like a little kid. Reason I'm telling you maybe you could look into it also and anyone who is reading this.

Don't remember if I told you I looked into the mat and looking forward to you opinion! Wishing you a good evening

Go see Dr. Todd Rozen at Mayo in Jacksonville as he is the best neurologist in the country. It would be tough to get an appointment but it's worth it as he's been treating me with my neck and pain nerve issue and he gives a nerve block that works. I hope it works for you and the mat seems to be helping. Have a great evening and sleep tight.

Thanks Don, I couldn't travel now, hard to stand, sit, walk, bend I wrote the Dr's name down. I hope the added medication will allow me to get out mode. I take good care of myself as if I were going out, hair ETC. Sleep well too, SMILE

Don I really feel for you. 10 years out is a long time!! I remember sitting waiting for Radiation treatment I would speak with others like yourself. Can you get new teeth? What due you tale to replace Sylvia? You have so much to deal with, do you live with someone to help you through all this? Any pets? Oh how I could find the words to make better for you. What do me you mean a dr. on borderline? You can read here so many asking for help for AA. I would like to know how to go to Washington, protest the total lake of interest from dr's and everywhere you turn. I can't put my mind around it. Are there any dental care or I mean care for patients who have lost teeth to radiation and free of charge, sliding scale that is out there?

I received from someone a rude answer to a question I had about Narcism/ passive aggressive male. driving home I was in a lot of pain I can't sit for long the flat back syndrome, lumbar I can't express how bad the pain sitting still is difficult, the drive home a long one from a dr. Asked my husband to please go faster, not o break the speed limit, 50. he was driving very slow and stayed that way. well the reply, why should he bow down to you! That was not why I asked the question. Maybe someone has gone through the same. PTSD kicked in. Not sure if I should leave this site. She told me what I was thinking. Funny how things remind us of other difficult things especially with PTSD. A lesson learned hut a lot.

😪

Us your CBD coming g from the hemp plant or the marajuana plant?

I have given up. The pain is too much and dealing with people takes energy. My two cats ask none thing of me. I actually even share them too with my sons because everything takes energy and sleeping is number one on my list.
I realize when people look at me they can’t see it but I don’t care well I think that bothers me some but refuse to complain anymore. I do what I can if I can. I guess it is what it is. Not happy but...I do read everything looking hoping for something new. 😨

Keep reading. That's a good sign. I'm sorry for your pain.

Coco, I know that this is the hardest thing to go through. You are right, it is what it is. I have found some comfort in prayer. I don't know what your faith is but I believe when we suffer the most, we are closer to God than ever. I will pray for you!
💕Amy

Thank you Amy. So good to have this group. Unfortunately we understand each other. ❤️