Advice from an Experienced ArachWarrior: Improving Control of the Symptoms of Arachnoiditis
- Lori Verton
- 1 day ago
- 8 min read
By By Lori Verton
Arachnoiditis and Chronic Meningitis Collaborative Research Network (ACMCRN).
_________________________________
Who this advice is for: This is a crucial primer for those newly diagnosed with Arachnoiditis. It will also provide significant benefit and a fresh action plan for those who have lived with the condition longer but feel stuck, plateaued, or are not seeing the improvement they need.
__________________________^_______
As you navigate life with Arachnoiditis, I know you're looking for solutions, and many people are relying on the protocols suggested by Dr. Tennant.
While we wholeheartedly embrace the hope and potential benefit that Dr. Tennant’s protocols offer, we must acknowledge that not everyone sees benefit and may be searching to add something more to their current regimen. That said, these protocols often provide an excellent starting framework. As part of the Patient Registry, the next ACMCRN study will be looking into this to gather data, which will help us better understand what parts are truly effective and how to make them even better.
In my experience, gaining more control of the myriad of symptoms of Arachnoiditis takes much more than just medication and supplements.
I have over 20 years of experience living with Arachnoiditis, and I’ve written extensively about these topics on my blog and in the discussion forum on www.acmcrn.org.
Over the eight years we've been curating resources for the ACMCRN Public Information Group on Facebook, I've compiled these basic steps to work on mastering.
They are the keys to gaining more control of your life.
The Basic Steps to Gaining Control
Master Your Pain Tracking and Pacing
1. (The PAIN App Method)
You need to understand your body's specific limitations. Start by committing to a two-week period of rigorous tracking.
Journaling: Use a pain app or paper journal to record your pain levels, mood, fatigue, and activities every three hours throughout the day.
Identify Triggers: Make a digital or paper output of this data and use an analytical tool like AI (or simply a spreadsheet) to find the activities that cause you the most pain, in descending order. These are your "triggers."
Eliminate/Change Top Triggers:
You must eliminate or significantly change the top three activities. For example, my top two triggers were driving a car and sitting in a car as a passenger for more than 15 minutes. My solution was to stop driving and severely limit longer car rides.
Learn Pacing:
Continue to input data for another month, then ask yourself or an AI to analyze the data for pacing recommendations. Over time, you will learn your own pacing needs. For instance, for a car ride of more than three hours, I rest and sleep the entire day before, take one-hour breaks during the trip, and stay at a hotel overnight for any driving over five hours in one day. Afterward, I usually need to sleep for most of the first day back and rest for another day before doing important meetings or traveling again.
The Other Stages
(I will cover these stages in more detail in a series of upcoming blog posts on www.acmcrn.org.)
2. Seek Specialized Assistance: Get professional help from an Occupational Therapist (OT) with neurological experience. They can provide information and tools that can help decrease pain or manage fatigue. Try to get one who is associated with a university hospital OT program. Check with local MS, Parkinson's etc groups for recommendations. The quality of the OT matters.
3. Consult a Pain Specialist: Bring your pain journal/app output and take someone with you to attest to your credibility. Work with them to get your pain level in the range of 3 or 4 out of ten. Accept that a level 1 is often impossible without incorporating tools other than pain medication. Stay away from Epidural Steroid Injections (ESI) once you have received an Arachnoiditis diagnosis. If you must sccept, insist on one with guided flouroscopy or other real time imaging.
4. Control Your Environment: Loud noises, bright lights, and other sensory overloads keep us in an aroused (or stressed) state. Create a calm, meditative space you can retreat to, as stress dramatically increases the perception of pain.
YouTube has guided meditation, meditative music (especially Soffiago scales and bineural beats in different therapeutic wavelengths.
5. Stay Connected to the Community: You are likely to pick up invaluable tips, resources, and emotional support from others who truly understand. One excellent resource is the ACMCRN Public Information Group on Facebook (see resource link below).
6. Participate in Peer Support Events: We provide free weekly support meetings with different topics. These include hands-on workshops and professional presentations.
Join us for Tich's Pain2Power interactive presentations and join Rida Viljoen, Certified LifeCoach, as she helps us navigate the emotional and psychological landscape of Arachnoiditis.
You can see the events, sign up, and join the discussion afterward at www.acmcrn.org/event-list.
7. Utilize Behavioral Hacks: Neuroscience and functional MRIs (fMRI) are proving that practices once questioned—such as mindfulness, meditation, and other specific behaviors (like tapping or overwhelming the senses as taught by pain psychologists)—actually do decrease the attention your brain gives to pain signals.
With these behavioral hacks, you can trick your brain to focus elsewhere and literally be too busy to report all the pajn.
See the works of Lorimer Moseley for more information. Also, consider joining our weekly Hack your Brain Hack your Pain Series held every Friday at 7 pm EDT/EST.
Ready to Gain More Control?
More to say... lots more! The key is that adding one tool upon another adds up significantly. You absolutely can learn to feel less pain, have more fun, and get your life back (albeit a much different life than the one you had before).
Next up in this series: Seeking Professional Resources and Helpful Consultants
Suggested Resource
ACMCRN Public Information Group on Facebook: https://www.facebook.com/share/g/1MY5Br61Gd/
Listen to Introducing Why Pain Matters With Professor Lorimer Moseley by The Lorimer Moseley Podcast: Pain Matters on Audible. https://www.audible.ca/pd/B0CJ68H2TV?source_code=ASSOR150021921000O
Arachnoiditis and Chronic Meningitis Collaborative Research Network (ACMCRN).
__________________________________________
Who this advice is for: This is a crucial primer for those newly diagnosed with Arachnoiditis. It will also provide significant benefit and a fresh action plan for those who have lived with the condition longer but feel stuck, plateaued, or are not seeing the improvement they need.
___________________________________________
As you navigate life with Arachnoiditis, I know you're looking for solutions, and many people are relying on the protocols suggested by Dr. Tennant.
While we wholeheartedly embrace the hope and potential benefit that Dr. Tennant’s protocols offer, we must acknowledge that not everyone sees benefit and may be searching to add something more to their current regimen. That said, these protocols often provide an excellent starting framework. As part of the Patient Registry, the next ACMCRN study will be looking into this to gather data, which will help us better understand what parts are truly effective and how to make them even better.
In my experience, gaining more control of the myriad of symptoms of Arachnoiditis takes much more than just medication and supplements.
I have over 20 years of experience living with Arachnoiditis, and I’ve written extensively about these topics on my blog and in the discussion forum on www.acmcrn.org.
Over the eight years we've been curating resources for the ACMCRN Public Information Group on Facebook, I've compiled these basic steps to work on mastering.
They are the keys to gaining more control of your life.
The Basic Steps to Gaining Control
Master Your Pain Tracking and Pacing
1. (The PAIN App Method)
You need to understand your body's specific limitations. Start by committing to a two-week period of rigorous tracking.
Journaling: Use a pain app or paper journal to record your pain levels, mood, fatigue, and activities every three hours throughout the day.
Identify Triggers: Make a digital or paper output of this data and use an analytical tool like AI (or simply a spreadsheet) to find the activities that cause you the most pain, in descending order. These are your "triggers."
Eliminate/Change Top Triggers:
You must eliminate or significantly change the top three activities. For example, my top two triggers were driving a car and sitting in a car as a passenger for more than 15 minutes. My solution was to stop driving and severely limit longer car rides.
Learn Pacing:
Continue to input data for another month, then ask yourself or an AI to analyze the data for pacing recommendations. Over time, you will learn your own pacing needs. For instance, for a car ride of more than three hours, I rest and sleep the entire day before, take one-hour breaks during the trip, and stay at a hotel overnight for any driving over five hours in one day. Afterward, I usually need to sleep for most of the first day back and rest for another day before doing important meetings or traveling again.
The Other Stages
(I will cover these stages in more detail in a series of upcoming blog posts on www.acmcrn.org.)
2. Seek Specialized Assistance: Get professional help from an Occupational Therapist (OT) with neurological experience. They can provide information and tools that can help decrease pain or manage fatigue. Try to get one who is associated with a university hospital OT program. Check with local MS, Parkinson's etc groups for recommendations. The quality of the OT matters.
3. Consult a Pain Specialist: Bring your pain journal/app output and take someone with you to attest to your credibility. Work with them to get your pain level in the range of 3 or 4 out of ten. Accept that a level 1 is often impossible without incorporating tools other than pain medication. Stay away from Epidural Steroid Injections (ESI) once you have received an Arachnoiditis diagnosis. If you must sccept, insist on one with guided flouroscopy or other real time imaging.
4. Control Your Environment: Loud noises, bright lights, and other sensory overloads keep us in an aroused (or stressed) state. Create a calm, meditative space you can retreat to, as stress dramatically increases the perception of pain.
YouTube has guided meditation, meditative music (especially Soffiago scales and bineural beats in different therapeutic wavelengths.
5. Stay Connected to the Community: You are likely to pick up invaluable tips, resources, and emotional support from others who truly understand. One excellent resource is the ACMCRN Public Information Group on Facebook (see resource link below).
6. Participate in Peer Support Events: We provide free weekly support meetings with different topics. These include hands-on workshops and professional presentations.
Join us for Tich's Pain2Power interactive presentations and join Rida Viljoen, Certified LifeCoach, as she helps us navigate the emotional and psychological landscape of Arachnoiditis.
You can see the events, sign up, and join the discussion afterward at www.acmcrn.org/event-list.
7. Utilize Behavioral Hacks: Neuroscience and functional MRIs (fMRI) are proving that practices once questioned—such as mindfulness, meditation, and other specific behaviors (like tapping or overwhelming the senses as taught by pain psychologists)—actually do decrease the attention your brain gives to pain signals.
With these behavioral hacks, you can trick your brain to focus elsewhere and literally be too busy to report all the pajn.
See the works of Lorimer Moseley for more information. Also, consider joining our weekly Hack your Brain Hack your Pain Series held every Friday at 7 pm EDT/EST.
Ready to Gain More Control?
More to say... lots more! The key is that adding one tool upon another adds up significantly. You absolutely can learn to feel less pain, have more fun, and get your life back (albeit a much different life than the one you had before).
Next up in this series: Seeking Professional Resources and Helpful Consultants
Suggested Resource
ACMCRN Public Information Group on Facebook: https://www.facebook.com/share/g/1MY5Br61Gd/
Listen to Introducing Why Pain Matters With Professor Lorimer Moseley by The Lorimer Moseley Podcast: Pain Matters on Audible. https://www.audible.ca/pd/B0CJ68H2TV?source_code=ASSOR150021921000O
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