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Living with Syringomyelia. How to live with Syringomyelia?

Can you be happy living with Syringomyelia? What do you have to do to be happy with Syringomyelia? Living with Syringomyelia can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Syringomyelia

Living with Syringomyelia

Living with Syringomyelia


Syringomyelia is a rare neurological condition characterized by the formation of a fluid-filled cyst, called a syrinx, within the spinal cord. This can lead to a range of symptoms and challenges for individuals living with the condition. While there is no cure for syringomyelia, there are various strategies and lifestyle adjustments that can help improve quality of life and manage the symptoms.



Medical Management


It is crucial for individuals with syringomyelia to work closely with their healthcare team, which may include neurologists, neurosurgeons, and pain specialists. The medical management of syringomyelia typically involves:



  • Regular check-ups: Frequent monitoring of the condition is essential to track any changes in symptoms or the progression of the syrinx.

  • Medications: Depending on the symptoms experienced, medications such as pain relievers, muscle relaxants, and anti-inflammatory drugs may be prescribed to manage pain and discomfort.

  • Physical therapy: A physical therapist can design a customized exercise program to improve strength, flexibility, and overall mobility. This can help alleviate symptoms and prevent further complications.

  • Surgery: In some cases, surgery may be necessary to address the underlying cause of syringomyelia or to drain the syrinx and relieve pressure on the spinal cord.



Self-Care and Lifestyle Adjustments


Alongside medical management, individuals with syringomyelia can adopt various self-care strategies and lifestyle adjustments to enhance their well-being:



  • Pain management techniques: Exploring different pain management techniques, such as relaxation exercises, meditation, and heat therapy, can help reduce discomfort and improve overall quality of life.

  • Assistive devices: Depending on the severity of symptoms, individuals may benefit from using assistive devices such as braces, canes, or wheelchairs to aid mobility and reduce strain on the affected areas.

  • Healthy lifestyle: Maintaining a healthy lifestyle is crucial. This includes eating a balanced diet, engaging in regular physical activity within one's limitations, and getting sufficient rest and sleep.

  • Emotional support: Living with syringomyelia can be emotionally challenging. Seeking support from friends, family, or joining support groups can provide a valuable outlet for sharing experiences, coping strategies, and emotional support.

  • Education and awareness: Staying informed about syringomyelia, its symptoms, and available treatments can empower individuals to actively participate in their own care and make informed decisions.



Managing Symptoms


While the symptoms of syringomyelia can vary widely, there are several strategies that can help manage specific symptoms:



  • Pain: In addition to medications, alternative therapies such as acupuncture, physical therapy, and transcutaneous electrical nerve stimulation (TENS) may provide relief.

  • Weakness and numbness: Physical therapy and gentle exercises can help improve muscle strength and reduce numbness. Occupational therapy can assist in adapting daily activities to minimize limitations.

  • Bladder and bowel dysfunction: Establishing a regular schedule for toileting, dietary modifications, and pelvic floor exercises can help manage bladder and bowel symptoms.

  • Sleep disturbances: Practicing good sleep hygiene, such as maintaining a consistent sleep schedule and creating a comfortable sleep environment, can improve sleep quality.

  • Headaches: Applying cold or warm compresses, practicing relaxation techniques, and avoiding triggers such as certain foods or stress can help alleviate headaches.



Living with syringomyelia requires a multidimensional approach that combines medical management, self-care strategies, and support from healthcare professionals and loved ones. By actively managing symptoms and making necessary lifestyle adjustments, individuals with syringomyelia can lead fulfilling lives while minimizing the impact of the condition.


Diseasemaps
9 answers
Yes you can live with it. For me, it's a mental game because I think of what I used to be able to do, but can't now. You have to find ways to adapt what you could do with what you can do now.

Posted May 22, 2017 by Christina Douthit 1001
Enjoy your life each day. Stay positive And productive

Posted May 30, 2017 by Linda 900
Reach out to others who live with it. Find support groups weather through social media or treating doctor. Finding humor, use coping skills to keep stress down, such as meditation, mandala coloring books, And my all-time favorite is singing. Vibration from singing helps to bring the pain down. Also releases endorphins.

Posted Mar 22, 2018 by Tammie 4000
It's just a bump in the road. There are adjustments, limitations you'll have to make but that doesn't stop you from having a full happy life ! Surround yourself with good and positive support. Keep moving forward and follow your dreams !

Posted May 21, 2018 by Sue 1400
Limits. Limits. Limits. Know your limits and do not push them. Sometimes you need to get creative and figure out new ways to do things. Consider Occupational therapy when things get worse. Explore your hobbies and find new ones.

Posted Sep 20, 2018 by Austyn 3500
Realize that you have this disorder but do not allow it to consume you. I'm certain you have heard of the term before called self-fulfilled prophecy.
If you continue to tell yourself that because your father died of a heart attack that you're going to die of a heart attack, you will. And don't be prone to suggestion, ie., placebo effect syndrome

Posted Jun 24, 2019 by Jack 2200
Translated from spanish Improve translation
Enjoy the day day not to think of the pain and not complain to any person for the disease to stay indoors and so are dying is always smiling

Posted May 16, 2017 by María Angélica González gallon 1800
Translated from spanish Improve translation
I the days that I am very wrong not to go out almost to the street, but the day that I meet well I attempt to do my normal life is so you can not work because it is impossible to

Posted Nov 17, 2017 by Raul 500

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