Arachnoiditis: How do you manage the nerve pain?

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 recently underwent two cervical disc replacements and one lumbar disc replacement and the issue I was having in my leg, went from one in every 15 or 20 days to 24 hours a day and super severe. In diagnosing a Dura leak from the surgery and the consequential MRIs and CT’s they mentioned arachnoiditis, and we have looked into it in my lower back and I have pretty severe arachnids in my lower back. I am very new to this and prior to the surgery was a fairly healthy 45-year-old married guy. The results of their disc replacement surgery are good other than it seemed to have set off arachnoiditis in my leg and made things 10 times worse with the leg. All I can seem to find is pain management solutions and lifestyle coaching. Has anyone had any luck with Neuro hormones or any treatments that didn’t simply involve more pain medication. I realize I’m at the beginning of this road the many of you’ve been on for a lifetime. Let me know if there’s any physicians or facilities specialize in this or treatments that are available. I’m currently I have trouble walking if it’s over a significant distance and sometimes can’t hardly move the leg at all.

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.

https://arachnoiditishope.us14.list-manage.com/track/click?u=e586727f2de750e7b3e61784c&id=63794ab868&e=f26f7440fb
I have found good help here. My doctors basically gave very poor advice which if taken would have caused worsening arachnoiditis. I chose gentle exercise, hormone treatment (what I could get) and faithfully taking 1.8 g MSM 2X day. In my research I discovered injections and that disk implant for pain would make it worse. I chose to do no treatments that invaded my spine. The website has extension information. I discovered everything that caused arachnoiditis I had had done. I am 84 and had failed back surgery at 24. Had discography with petroleum oil, had several spinal injections later on to try and get control of pain and immobility issues. I haven't had time to find a support group nor would there be one in person near me. I do spend a lot of time in prayer, mostly for others, and Bible study. At my age medications are not good for cognitive health so seldom do I take a muscle relaxer or narcotic pain pill though I have rx for such but very limited. The website is very extensive.

Research Dr Forrest Tenant. He has extensively studied Arachnoiditis. He has articles on the internet and books to purchase. My doctor put me on Indomethacin from Dr Tenant's protocol. That drug absolutely has to be taken with food. It is the only drug that helps my Arachnoiditis.

Thanks so much for the information!