Chronic Pain members - Welcome, please introduce yourself

It's been awhile since I posted anything. I have however followed other postings on Adhesive Arachnoiditis. I was 1st diagnosed in 2006 by my neurosurgeon at the time and confirmed via numerous other neurosurgeon and neurologists and pain mgt doctors. I've had 9 back surgeries and have an implanted spinal cord stimulator that was replaced 2 x. The spinal cord stimulator/battery are MRI compatible. I no longer turn my SCS however because as my Adhesive Arachnoiditis has progressed, my SCS use increases my pain quite a bit. Several drs , of various disappoints, have advised me to not use it for that reason. They also agree with each other that I should not have my SCS removed, as to do so could put me at high risk of becoming paralyzed if any of the nerve clumps from my advanced Adhesive Arachnoiditis were knicked or even minimally damaged. My 24/7 severe pain has spread from just my lumbar spine to now also being pretty advanced in my Thoracic and my Cervical spine also. The 24/7 severe pain has spread to my arms/hands/ legs/ hips...
My fingers lock several times a day as do my toes. My feet are never numb - and I can't feel the ground. But despite the very advanced numbness in my feet, they very often feel like they are on fire and I also experience very sharp and hot jabs of intense pain in various locations of my feet. Jn my Cervical spine, I can no longer straighten my head up at all. It tips downward my left shoulder and I also can't tip my head back at all. I can not lay down at all because of the severe pain & as a result- I can't go to bed at all. I literally live in my recliner chair that I can raise my legs on , but that I can not tip the back of the chair backwards at all due to increased pain. I pretty much am only able to cat-nap from 15-22 minutes a couple times each day because of my 24/7 severe pain. My pain is so severe that I have what the drs all call "severe pain episodes " where my severe pain spikes very suddenly, & intensly that it causes me to so much that it causes me to thrash around and yell out & then ultimately pass out from the high level of pain during these severe pain episodes 14-54 times each day. I can no longer take any pain medication at all as I have developed Hypercapnia & have had to be hospitalized 4 different times as I became unconscious & unresponsive from my shallow breathing (which I've had since I was a child). These 4 times, I almost gave God a big hug & a kiss... Every doctor, clinic, hospital... all say they are sorry - but there is nothing that can be done to help me with the pain and progression of my Adhesive Arachnoiditis... They all wish me well, but they tell me that since Adhesive Arachnoiditis is so rare, not only in the US but also throughout the world, there is no treatment known that could help me. I have reached out to so many drs and hospital and clinic - but I'm told the same thing again & again. I'm also told that no research or clinical trials are happening because of the rarity of Adhesive Arachnoiditis- and to the degree that I have it. I would appreciate feedback about others experiences with Adhesive Arachnoiditis. Thank you for taking the time to read this and in sharing yiur experience & thoughts. God bless you all. mmata

Hi MMATA: I have written elsewhere, but need to say “Hello Mate”! I was diagnosed with AA IN 1978– now almost 50 years ago, and I’m still here, hanging on like a tick on a dog. It’s been hard, I’ve experienced many of the problems you have, but giving up is not an option. I was diagnosed at Rochester Mayo—can still remember the chief of neurological service walking into my room with a book in his hand and saying, “I think I’ve discovered your problem!” In my case there were the multiple surgeries, etc., but back then no MRIs or CT Scans. Contrasting diagnostic imaging was done by Myelogram where a fluid called Pantopaque was injected into your spinal cord and the image taken. The fluid was OIL-BASED, I was ALLERGIC TO OIL BASED PANTOPAQUE FLUID. This caused the scaring in the subarachnoid space, and the process is Progressive. I believe and hope that I can understand and respond to any issue you may wish to share. I’m here— there are not a lot of us— but I’m willing to help where I can. Please contact me if you feel the need. This offer is general—all are welcome. I won’t/ can’t offer medical advice, although I am a doctor, but patient to patient, I’m here to help.

Sorry archie2, as I was writing my response to your posting - my hand jacked and what I was entering disappeared. Things that make you say " hummmm" Sorry. But, I really do appreciate your offer to try to be available to myself and others with AA. That's very kind of you archie2. Did yiu know that today happens to be "World Kindness Day" ? It really does make a difference to be kind to others. We never really know what others are experiencing at any given moment or any given day. Maybe saying a simple "hi " to someone we encounter, or to give someone a smile really could be helpful to that person. I try to keep an "attitude of gratitude" each day. As I see the new day starting, outside my living room window, I try to name in my mind, and in my heart the various people and things that are a blessing to me. I repeat this at the end of each day too. I know that acknowledging the difficult things in our life is important too, but I try to not allow those dufficult things to overwhelmed me. Trying to maintain an "attitude of gratitude" is like taking a big - deep breath , at least it us for me. I hope that this suggestion is helpful to someone else as they deal with various issues.
Thank yiu again archie2. I hope that you have a blest day in a variety of ways. With peace-filled wishes - mata

Hi- I’m glad that you have cognitive ways to deal with your pain, but honestly, such approaches have never worked for me. Is there a cognitive/ emotional component to pain? No doubt, but understanding this has never been much help for me.
The doctors at Mayo tell me that pain pump does NOT reduce AA pain- it is for radicular pain only—a Spinal Cord Stimulator may be better. At this point, treatment alternatives are empirical only- does it help?? Yes/no… if Yes, then let’s do it big time.*** Over time, since te 1970’s I have been a lab rat for every new drug/combo/method that has come along. I remember elavil- Prolixin combo-/ and sitting in my front yard and thinking “if I have to live like this it’s just not worth it.” Neurontin (Gabapentin) is another drug that totally messed with cognition and personality.
What am I saying? Be your best advocate-you seem very articulate. Remain positive about possibilities, KEEP A JOURNAL- more helpful than you can imagine. Be open for change— the JOURNAL will help you know where you have been. Always take a friend/spouse into meetings. Set goals for yourself and be brutal when reviewing results. We’re in this together— God bless you.
***I am getting an SCS - Boston Scientific, in a few weeks, just increased my Medtronic intrathecal pump output 15%, and increased the number of bolus deliveries 30%.

So, have you gotten any pain relief from your pain pump? 've had one for a year and a half with no relief. I've had it's output increased more times than I can remember. I stopped having it increased when it started giving me bad side effects. Now, I am having it dialed back, with the intent of having it removed. I had the first trial with morphine. No relef. The second trial was with hydromorphone. Pain dropped from an 8 to a 2. I was certain that I was going to have this amazing relief...but no go. Pain is daily at a 7-8, except when I try to do ANY exercising. Then, it ramps up to 8-9.
I tried to get a trial of a different, updated SCS, but the scar tissue would not allow the paddle leads to be placed in the sweet spot. Whar drug iin your pain pump currently. Hope you have success with your SCS trial. Keep us updated.

My name is Dani. I'm 30 years old and was diagnosed with cervical radiculopathy this summer. In September, I had a C5-6 diskectomy, mesial facetectomy, and laminectomy. I am back at work, but am still struggling with nerve pain from the back of my head and right cheek, down my neck, into my right arm, and into my fingers. I've also lost strength in this arm and it's my dominant arm. I'm on Gabapentin 300mg every 8 hours (900mg/day) and Cymbalta. I'm also taking ibuprofen and Tylenol around the clock, but I'm tired of having to track that too. I started some physical therapy, but that aggravated my symptoms. My mental health is not awesome and I'm starting therapy. Just looking for some support groups in the Rochester area. Thanks and take care.

Hi
I’m Mery and I suffer from chronic pain due to a degenerative disease in my joints. My neck and back are the most affected but my hands, feet and hips are starting to hurt as well. I don’t have a lot of hope about cures or even effective treatments at this point as every doctor has a different opinion about what is causing it. I’ve tried lots of things and try to stay away from the heavy duty pain medication because it helps but I think we all know where that leads and I don’t want to go there. I usually try everything that is suggested although I drew the line with the doctor who wanted to give me chemotherapy. No thanks!

Finding help for complicated pain can be very challenging, indeed. I agree that surgery is too often prescribed without further examination. Many times the surgery does not help and may even create more problems. Has any of your doctors mentioned a spinal cord stimulator? It has worked for me. The good thing is that you can do a minimally invasive trial to see if it will give you any relief. Worth a look. Wish you well.

I am 66 years old and have been dealing with systemic chronic pain and fatigue for decades. It takes so much time and energy to try to manage them and the people around me can’t understand my struggles. I look forward to being a part of a group of like minded (and bodied), people! Thank you for providing this platform for sharing.