Living with Arachnoiditis. How to live with Arachnoiditis?

Name: Living with Arachnoiditis. How to live with Arachnoiditis?
Creator: DiseaseMaps Editorial Team
Published: 2016-11-18UTC11:29:51.0000000

Living with Arachnoiditis: how patients cope day to day and stay positive - real experiences and practical tips.

Living with Arachnoiditis requires a multidisciplinary approach that balances medical management, such as the 3-component treatment protocol, with robust psychological self-care to navigate chronic pain and neurological symptoms. While Arachnoiditis presents significant physical challenges, building a supportive network and utilizing adaptive coping strategies can help maintain quality of life and emotional well-being.

How does Arachnoiditis impact mental health?

The chronic pain associated with Arachnoiditis—often described as electric shocks or the sensation of insects crawling—can lead to profound feelings of isolation, anxiety, and depression. Because Arachnoiditis is a complex, often invisible condition, patients frequently struggle with the emotional weight of being misunderstood by peers or medical providers. Recognizing that your pain is valid is the first step toward psychological resilience.

What are effective strategies for living with Arachnoiditis?

Managing the daily reality of Arachnoiditis involves pacing your activities to prevent "pain flares" and finding joy in modified versions of your favorite hobbies. Many in our community find that small, consistent shifts in daily habits make a significant difference in managing the nervous system's response to pain:

Mindfulness-Based Stress Reduction (MBSR): Techniques to help detach from the intensity of neuropathic pain.

Pacing: Breaking tasks into small intervals to avoid triggering muscle spasms or weakness.

Acceptance and Commitment Therapy (ACT): Focusing on values-based living despite persistent physical symptoms.

Peer Connection: Engaging with the 423 members of the Arachnoiditis community on DiseaseMaps.org to share lived experiences.

When should I seek professional mental health support?

You should consider speaking with a therapist—ideally one specializing in chronic illness—if you notice that Arachnoiditis is causing persistent feelings of hopelessness, significant changes in sleep or appetite, or if you find yourself withdrawing from all social interactions. A professional can provide tools to process the grief of a changed lifestyle while helping you focus on achievable goals.

Next steps

Consult a neurologist or neurosurgeon experienced in Arachnoiditis to discuss current inflammatory management protocols.

Join the Arachnoiditis community at DiseaseMaps.org to connect with others who truly understand your daily challenges.

Work with a pain psychologist to develop a personalized cognitive-behavioral plan for chronic pain management.

Medical disclaimer: This content is for informational purposes only and does not constitute medical advice; always consult with your healthcare provider for diagnosis and treatment.

References

NIH Genetic and Rare Diseases Information Center (GARD): Arachnoiditis

Orphanet: Adhesive Arachnoiditis

DiseaseMaps.org: Community insights and patient-reported outcomes for Arachnoiditis

Author: DiseaseMaps Editorial Team

Reviewed against authoritative medical sources (NIH GARD, Orphanet, OMIM)

Last updated: 2026-05-08

Sources cited: NIH Genetic and Rare Diseases Information Center (GARD): Arachnoiditis · Orphanet: Adhesive Arachnoiditis · DiseaseMaps.org: Community insights and patient-reported outcomes for Arachnoiditis · WHO

Medical disclaimer: This information does not substitute professional medical advice. Always consult your doctor before making health decisions.

Source: DiseaseMaps.org

Living with AA is incredibly difficult but not impossible. Having a strong support network is key. Your significant other or caregiver needs to be well educated with AA as well as everyone you are in regular contact with. It's hard living with severe chronic pain and being an invisible disease people will accuse of being a drug seeker or a faker. This on top of the constant suffering is extremely hard to bare . AA effects every aspect of the victims life and with proper treatment i.e. Support groups iv ketamine pain management. Some quality of life is possible medical marijuana as well as kratom have also been successful with multiple patients
AA patients require more sleep and more downtime.

Posted Apr 5, 2017 by Josh 2600

You can be happy living with Arachnoiditis, but it all depends on you. Your lifestyle is DEFINITELY going to change. You won't be able to do many of the physical things you used to do, including housework, shopping, even personal care in some cases. You need to be aware of your limitations, don't overextend yourself, and ASK FOR HELP if you need it. You also need to find other activities you enjoy that are less taxing on the body, or find ways to do the activities that don't hurt you. For example, use a motorized cart or walker when shopping. Coach sports instead of playing them. If you enjoy travel, take shorter trips. Ask for assistance at the airport. Develop new, less strenuous hobbies and activities. If you want to work, try part-time or work from home. Get help with the housework or personal hygiene from family, friends, or agencies (there are many out there). Rest when you need to.

The main thing is, HAVE A POSITIVE ATTITUDE. You're just disabled, not dead. Don't have an eternal pity party. There are still people in this world who have it worse than you. Your life can still go on. It's just a new chapter.

Posted Apr 7, 2017 by Barbara 1000

The mind is a powerful thing and it helps me a lot not to think about it. I think of myself as a healthy person, not as a sick or injured person. I refuse to sit back and let life pass me by, so I do most of what I want to do until a day or several comes by that prevents it. I also am thankful for every good thing in my life and I focus on that rather than the negative.

Posted Apr 11, 2017 by Kelly 5450

Find support groups. Family, friends. Reach out to people when feeli g down. Stay as active as possible

Posted May 18, 2019 by nancy 2500

I have just recently got Arachnoiditis from having the wrong thing inserted into my spine. I am trying to have the best attitude but some days it just gets you down. Did any of you get breathing problems, short of breathe or blood clots with yours?

Posted Oct 6, 2019 by CindySmall 100

This is difficult question
Each person is different but I would say that someone with this condition. Should have a great medical and mental health team to support them.
Find solutions that work for the person with the condition.

Posted Jan 5, 2020 by Jcrandall72 2500

Make sure you get a nice sturdy cane to help with your balance. Take up all the figs in your house to keep from tripping on them. If you travel stop frequently to stretch. Also keep your meds in a bag close to you so you can take when needed. Wear loose clothing because sometimes when you flare it hurts when the band of your pants touch your scar. Make sure your doctor is up to date on how to treat Arachnoiditis.

Posted Jan 5, 2020 by Deerut1963 2400

You can be happy living with Arachnoiditis, but it all depends on you. Your lifestyle is DEFINITELY going to change. You won't be able to do many of the physical things you used to do, including housework, shopping, even personal care in some cases. You need to be aware of your limitations, don't overextend yourself, and ASK FOR HELP if you need it. You also need to find other activities you enjoy that are less taxing on the body, or find ways to do the activities that don't hurt you. For example, use a motorized cart or walker when shopping. Coach sports instead of playing them. If you enjoy travel, take shorter trips. Ask for assistance at the airport. Develop new, less strenuous hobbies and activities. If you want to work, try part-time or work from home. Get help with the housework or personal hygiene from family, friends, or agencies (there are many out there). Rest when you need to.

The main thing is, HAVE A POSITIVE ATTITUDE. You're just disabled, not dead. Don't have an eternal pity party. There are still people in this world who have it worse than you. Your life can still go on. It's just a new chapter.

Posted Jan 7, 2020 by Staplehurst17 4050

It is important that you invite family members as well as yourself to Facebook groups so that they will understand the pain that you’re dealing with and what you can do to help yourself.

Posted Jan 8, 2020 by Rhonda 1600

Difficult to answer

Posted May 1, 2020 by KenNwv 500

The hardest is to accept the fact you will never be that person you once were. Happiness is difficult but not impossible. Share with those that don’t understand tell them it’s like MS and Motor Neuron Disease that the short-term lifespan most people understand those two conditions explain you have limitations and every day is a mystery but invite them to come along on your mystery tour could be fun

Posted Jul 9, 2020 by Derek 3000

Hard to be happy, when your healthcare system (the VA for me), refuses to discuss the issue...even though seven non-VA doctors have clearly diagnosed AA. I give much thanks to the Tennant Foundation, for their incredible research, and help in evaluating the facts of your case. My PCP told me today she doesn’t believe in the condition, and said my pain is just from wear and tear while in the military; that thought process, is much more dangerous than the actual disease. Luckily, I do have very supportive friends and family, to help on those days when I don’t think I’ll make it through at all.

Daniel

Posted Jan 5, 2021 by ARCingOUT 150

You just do. You find all the coping methods possible. You promise yourself you won’t become one of the many with this condition that take their own lives because they can’t cope with the amount of pain they’re in. I had a child, and now I will survive for him.

Posted Mar 20, 2021 by Anna 2300

It's not an easy life, had to change job, don't have a social life anymore.
Try to keep the neuroinflammation down with medrol or ketorolac.
Stress and overdoing things can lead to a flare.

Posted Jul 22, 2021 by Vincent 3420

Join a support group!
See us at https://www.facebook.com/groups/ACMCRN/
www.acmcrn.org

Read the books!

Handbook to Live Well with Adhesive Arachnoiditis by Dr Forest Tennant

https://www.amazon.com/dp/195593407X/ref=cm_sw_r_awdo_navT_g_HB8NNMCTN1FYJGYYHZWC

Posted Nov 15, 2021 by ACMCRN 2200

I’m still learning and struggling. Find things to help occupy your mind so that you don’t stay focused on your pain. And a strong support system is a priority.

Posted Nov 16, 2021 by [email protected] 700

Pray for help, accept the answer. Do the best you can and accept help only when you need it. Try to focus on things you enjoy. I know this list is short because of the severe chronic pain. It is hard not to complain to all your friends, family, and associates, but the truth is no one likes to hear how bad you feel all the time. No one understands unless they life with it. And those who are living with struggles do not want to hear ours. Try your best to be positive around them when you can be, vent your negative emotions and energy when you are alone. We need social interaction. God designed us this way.

Posted Jan 7, 2022 by Machinetoolmkr 5550