Arachnoiditis - spinal caudal clumping

I have had arachnoiditis for 50 years, but after the original diagnosis way back, then I thought the issue was resolved. So for the next 30 years, I handled the symptoms with yoga, swimming, over-the-counter drugs and a transcutaneous nerve stimulator which kept me moving for a while. Found a chiropractor about 20 years ago, who did wonders for me for a while with stretching. I also tried an inversion chair, which would give some relief at times. 10 years ago, I got a spinal cord stimulator implant, and maybe three years ago I got a pain pump which delivers me morphine. These two implants take care of most of my pain unless I have a really bad flare, which has only happened once. I have found that symptoms and relief are just so individual that you try what you can and stick with what works. Good luck.

I have arachnoiditis as well. No pain lying down or slowly walking but unable to sit comfortably for more than 10 minutes and unable to sit at all for more than 30 minutes. Opioids, muscle relaxants, PT, anti inflammatories, herbal remedies absolutely no help. Mild short term relief with prednisone but too many side effects to take long term.

I never released how not being able to sit can really affect ones life.

laura1970: I'm so sorry that you are experiencing this. I totally understand what you are experiencing. I have had Adhesive Aracnoiditis since 1997. As you know, it is a very rare condition and it's progressive and without any current or even recent clinical trials. So, the only thing that I can offer you that has helped me to find ways to embrace all if the positive people and things in my daily life is to start each day and end each day with what I call "An Attitude of Gratitude ." As I start my day, or during the night when I can't sleep, due to my 24/7 intense pain along all 3 levels of my spine, I think about who I'd like to contact as the day unfolds and I think of what I'd like to doing the coming day. Then at the end of each day, I go over the day in my mind and in my heart to give thanks for the people I interacted with that day, what I've done in that day, plus giving thanks for our cat and for Mother Nature and all of the various birds, squirrels, chipmunks, and a host of other animals the fish in the Koi Pond that I can visit with the help of my wheelchair. While I am not negating the 24/7 effects of my Adhesive Arachnoiditis, I am not letting it close out my being able to enjoy so many positive people, and things in my life. I hope that this is something I hope that this will be helpful in your day to day life too.
I will pray for you each day laura1970.
With peace-filled wishes,
mmata

A very healthy attitude you embrace. I will do my best to emulate yours. Thank you for taking the time to share! Laura

Really good advice Laura. It’s very difficult when there are no real answers except “you’ll just have to live with it “. I do find that Gabapentin helps a lot with the leg nerve pain at night. Also have had some success with pt (Mackenzie Method). Best wishes to all. Jeanne

I I am fairly new to this condition as well. I had three discs replaced and after surgery my right leg is so bad I can hardly walk most of the time. Before the surgery, I was 45 years old and fairly good health with decent pain but manageable. I too, am not excited about that responses that I received about pain management. Certainly there has to be more studies out there than what I have found or specialists. But definitely on the active search for a specialist or treatment options besides just eating pills. Trying out meditation and mindfulness as well but going to have to take pain medication to sleep.