Which advice would you give to someone who has just been diagnosed with Arachnoiditis?

See some advice from people with experience in Arachnoiditis to people who have just been diagnosed with Arachnoiditis


Receiving a diagnosis of Arachnoiditis can be overwhelming and may leave you with many questions and concerns. It is important to remember that you are not alone in this journey, and there are steps you can take to manage your condition and improve your quality of life. Here are some pieces of advice to consider:



1. Educate Yourself


Take the time to learn about Arachnoiditis, its symptoms, causes, and available treatments. Understanding your condition will empower you to make informed decisions about your healthcare and treatment options. Consult reputable medical sources, connect with patient support groups, and consider seeking a second opinion if necessary.



2. Build a Support Network


Reach out to friends, family, and loved ones for emotional support. Sharing your diagnosis with them can help alleviate the burden and provide a strong support network. Additionally, consider joining local or online support groups specifically for individuals with Arachnoiditis. Connecting with others who share similar experiences can provide valuable insights, advice, and emotional support.



3. Communicate with Your Healthcare Team


Establish open and honest communication with your healthcare providers. Share your concerns, symptoms, and treatment preferences. Collaborate with them to develop a comprehensive treatment plan tailored to your specific needs. Regularly follow up with your healthcare team to monitor your progress and address any changes or new symptoms that may arise.



4. Manage Pain Effectively


Arachnoiditis often causes chronic pain, which can significantly impact your daily life. Work closely with your healthcare team to develop a pain management plan that combines various strategies. This may include medications, physical therapy, alternative therapies (such as acupuncture or meditation), and lifestyle modifications. It is crucial to find a balance that helps alleviate pain while minimizing potential side effects.



5. Prioritize Self-Care


Take care of your physical and mental well-being. Engage in activities that bring you joy and relaxation. Practice stress management techniques, such as deep breathing exercises, mindfulness, or engaging in hobbies. Ensure you get enough restful sleep, maintain a healthy diet, and engage in regular physical activity within your limitations. Prioritizing self-care can positively impact your overall well-being.



6. Seek Emotional Support


Living with a chronic condition like Arachnoiditis can take an emotional toll. Consider seeking professional help from a therapist or counselor who specializes in chronic pain or chronic illness. They can provide you with coping strategies, emotional support, and help you navigate the challenges that may arise.



7. Stay Positive and Seek Silver Linings


While Arachnoiditis can be challenging, maintaining a positive mindset can make a significant difference in your overall well-being. Focus on the aspects of your life that bring you joy and fulfillment. Seek out activities or hobbies that you can still enjoy despite your condition. Surround yourself with positive influences and practice gratitude for the things you can still do.



Remember, everyone's experience with Arachnoiditis is unique, and what works for one person may not work for another. It is essential to listen to your body, advocate for yourself, and make choices that align with your values and goals. With the right support, self-care, and management strategies, it is possible to live a fulfilling life despite the challenges posed by Arachnoiditis.


by Diseasemaps

There is ALWAYS HOPE! There are new treatment options available now, and there is more research being done on this disease. One day I pray there will be a cure, but until then we must keep education, learning, and sharing our knowledge to help others.

5/9/19 by ASAP Arachnoiditis society for awareness and Prevention

No more invasive surgical procedures i.e. Spinal cord stimulater, pain pumps, epidurals. Pain management I've ketamine and water therapys are good as well as medical marijuana and kratom with lots of rest and a good support system as well as support groups

4/5/17 by Josh 2600

EDUCATE YOURSELF. Learn as much as you can about Arachnoiditis, Adhesive Arachnoiditis, its causes, progression, and associated conditions. BE A STRONG ADVOCATE FOR YOURSELF. Keep track of your symptoms and progression. Educate your medical professionals and those around you. Many medical professionals will need it. And you'll need to stand up for yourself. SPREAD THE WORD. Let others know about Arachnoiditis, what causes it, and how they can make sure they don't get it.

4/7/17 by Barbara 1000

Although it is devastating news, It is not the end of the world. There are lots of people and resources to help you cope. Become your own personal health ambassador by doing research and implementing the things you learn from others. Watch your diet, take supplements that reduce inflammation, get a good pain management doctor, take care of your back, go to all efforts not to fall down, and live your life by doing the things you enjoy.

4/11/17 by Kelly 5450

Fi d a good support group. A good provider

5/18/19 by nancy 2500

Processing the diagnosis, find a great medical team, research the condition & network with others that have this condition, find a counsellor to talk things out if needed & try to educate your family and friends I don’t know what I would do differently .. it happened & I did what I needed too

1/5/20 by Jcrandall72 2500

Make sure your doctor knows how to treat arachnoiditis because some don’t. You will have flares. If your having a good day reserve your pills but don’t not take them. Maybe just take one less. Stretch I can not stress this enough stretching is your friend. Find a support group online. And don’t be afraid to find a psychiatrist and a psychologist that treat chronic pain.

1/5/20 by Deerut1963 2400

EDUCATE YOURSELF. Learn as much as you can about Arachnoiditis, Adhesive Arachnoiditis, its causes, progression, and associated conditions. BE A STRONG ADVOCATE FOR YOURSELF. Keep track of your symptoms and progression. Educate your medical professionals and those around you. Many medical professionals will need it. And you'll need to stand up for yourself. SPREAD THE WORD. Let others know about Arachnoiditis, what causes it, and how they can make sure they don't get it.

1/7/20 by Staplehurst17 4050

Try to find a medical provider who will treat you by following Dr. Forrest Tennant’s protocol. Make sure you join a Facebook group concerning arachnoiditis and check the files and read them once you get accepted into a group.

1/8/20 by Rhonda 1600

Learn as much as you can join a related support group. Don’t leave it too long after being diagnosed you need to understand your future speak to those like l with 40 years experience

7/9/20 by Derek 3000

Look up Dr Forrest Tennant’s emergency treatment protocol, and DO IT ASAP. The curable window for this disease is less than a year, and then it is permanent. Incurable. But before a year, a steroid protocol could save you from a miserable life.

3/20/21 by Anna 2300

Search for dr Forest Tennant and follow his advice. Search for facebook groups so you can get in contact with fellow sufferers. Don't get discouraged if your doctor is not willing to prescribe the needed medication. Choose your own medical team to help you.

7/22/21 by Vincent 3420

Begin the #Emergency #StartingProtocol from www.arachnoiditishope.com Also here: https://www.facebook.com/groups/ACMCRN/permalink/305389196534501/

11/15/21 by ACMCRN 2200

Learn as much about your condition as you can. Live your best life after you found out how it may turn out. Start getting your affairs in order as far as the clutter in your life. Take care of yourself. And your Family. Listen to your body and stop doing the things that increase your pain. It will get worse much worse.

1/7/22 by Machinetoolmkr 5550

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