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.

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.

Thanks so much for the information!

I have found this website helpful. Dr forest tenant has also written books available on Amazon and has videos on YouTube
https://arachnoiditishope.com/

There is a new drug, Ziconotide, but must be administered via intrathecal catheter. I’m not putt anything back into my spine, that’s what caused all the problems in the first place.

Lyrica helps the pain, but it makes me “stupid” I can’t remember words, can’t find my words when I talk. I hate it. I can relieve pain, but behave like I have dementia, or endure the pain, and still struggle to communicate because you’re hurting.
I have issues with terrible cramping in my legs, feet and toes. I can’t explain how painful a “Charlie horse” of your toes actually is! I wake out of a sleep, tears streaming, trying to put my balled up foot down flat on the floor.

My PCP recommended tonic water. It did help some, but I would drink so much before bed, I was up several times to potty. Then I discovered quinine melt away tablets. Feel a cramp coming on? Take 3 tablets and let them dissolve under your tongue, do not chew. Before they are 100% desolved, your cramp will be gone. This has been such a game changer for me. I used to wake every night with some form of cramping, often several times a night. Now, I take this once if I feel a cramp, and can usually sleep the night.

It is called Hyland’s leg cramps and you can buy it on Amazon very reasonably. If I remember correctly, I only had to repeat the dose twice for one very bad episode. I promise, I am in no way involved with this product other than a very grateful, satisfied customer. They have me on enough questionable medications, this is OTC and has been a God-send.