Arachnoiditis and suffer from severe pain

Hi Jon
I have never heard of this condition before but it rings similar to my symptoms that have perplexed my doctors for ten years. I have no idea what's wrong with me still but I do know what being in constant pain is like. I am sorry to hear you've endured this for so long and had so many things happen in your lifetime that your profile lists.
I have found that the more allow myself to focus on the pain and bad stuff the worse I personally feel. So, I am working on mindfulness of the good things ( some days are harder than others to do that though)
This forum is a good resource for encouragement and support. Look on the events and support group tabs and look for zoom meetings you may be able to listen in on. Sometimes just knowing you're not alone in your suffering can uplift your feelings as well. (At least that was my experience when I attended codependency meetings through coda.org)
I hope today is a less painful day for you. Take some big cleansing breaths and try to focus on something positive today. Even if just for a few minutes throughout the day. I don't know if you're a person of faith but I am reminded of The Healing at the Pool: “Then Jesus said to him, “Get up! Pick up your mat and walk.” At once the man was cured; he picked up his mat and walked." John‬ ‭5‬:‭8‬ NIV‬‬
I remind myself daily that one day I won't suffer anymore. Until that time I will pick up my mat and walk...slowly and in pain but I will walk. 🥹 Be blessed!

American Syringomyelia &
Chiari Alliance Project at asap.org if you find the forum there you con converse with others with same situation and get support and ideas for pain control from them. They also have yearly conferences and at ones I have attended have always had pain management physician give a talk and you can ask questions

Oh yeah I'm in chronic pain.
Good to see another recovering on here too. I need figure out where to find initial disorders or whatever were going through, where to see my 1st symptoms posted? I'm a newbie

Who, reading this, has this horrible, debilitating disease and what are you doing about it? Is there any new medicine, treatment or hope you can give me for any comfort or relief? It seems that there is little understanding about this illness except for those who have it.

I had adheasive arachnoiditis gor 13 years failed back surgery it’s getting worse pain wise as o get older walking is very difficult trying to remain independent it’s most important to me feel best when lying down

I have arachnoiditis. I have been to three large medical centers, including John’s Hopkins and have yet to find a doctor with any experience.

The writings by dr tenant are very useful
https://www.acmcrn.org/dr-tennant-materials