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

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


Advice for Someone Diagnosed with Ankylosing Spondylitis


Receiving a diagnosis of Ankylosing Spondylitis (AS) can be overwhelming and raise many questions about how to manage this chronic condition. While it is important to consult with healthcare professionals for personalized guidance, here are some general advice and tips to help you navigate life with AS:



1. Educate Yourself


Take the time to learn about AS, its symptoms, progression, and available treatments. Understanding the condition will empower you to make informed decisions about your health and treatment options. Reliable sources such as medical websites, books, and support groups can provide valuable information.



2. Build a Support Network


Living with AS can be challenging, both physically and emotionally. Surround yourself with a supportive network of family, friends, and healthcare professionals who can provide encouragement, understanding, and assistance when needed. Consider joining local or online support groups to connect with others who share similar experiences.



3. Work Closely with Your Healthcare Team


Collaborate with your healthcare team, including rheumatologists, physical therapists, and other specialists, to develop a comprehensive treatment plan tailored to your specific needs. Regularly communicate any changes in symptoms or concerns to ensure your treatment remains effective and appropriate.



4. Follow Your Treatment Plan


Stick to the treatment plan prescribed by your healthcare team. This may include medications, physical therapy, exercise routines, and lifestyle modifications. Consistency is key to managing AS and minimizing its impact on your daily life. Remember to discuss any concerns or side effects with your healthcare provider.



5. Prioritize Physical Activity


Engaging in regular physical activity is crucial for managing AS. Exercise helps maintain flexibility, reduce pain, and improve overall well-being. Consult with a physical therapist or exercise specialist to develop a personalized exercise routine that includes stretching, strengthening, and low-impact aerobic activities. Make sure to balance activity with rest to avoid overexertion.



6. Maintain Good Posture and Ergonomics


Proper posture and ergonomics can help alleviate pain and prevent further complications. Practice good posture while sitting, standing, and walking. Use ergonomic furniture and tools that support your spine and joints, such as adjustable chairs, lumbar cushions, and keyboard trays. Avoid prolonged periods of sitting or standing and take regular breaks to stretch and move.



7. Apply Heat and Cold Therapy


Heat and cold therapy can provide temporary relief from pain and stiffness. Experiment with hot packs, warm showers, or heating pads to relax muscles and increase flexibility. Cold packs or ice packs can help reduce inflammation and numb painful areas. Find the combination that works best for you and use it as needed.



8. Practice Stress Management


Stress can exacerbate AS symptoms, so it is important to find healthy ways to manage stress. Explore relaxation techniques such as deep breathing exercises, meditation, yoga, or mindfulness. Engaging in hobbies, spending time with loved ones, and seeking emotional support can also help reduce stress levels.



9. Maintain a Healthy Lifestyle


Adopting a healthy lifestyle can positively impact your overall well-being. Eat a balanced diet rich in fruits, vegetables, whole grains, and lean proteins to support your immune system and maintain a healthy weight. Avoid smoking and limit alcohol consumption, as they can worsen AS symptoms and interfere with medications.



10. Monitor Your Mental Health


Living with a chronic condition like AS can take a toll on your mental health. Stay vigilant for signs of depression, anxiety, or other mental health concerns. Reach out to a mental health professional if you experience persistent feelings of sadness, hopelessness, or difficulty coping with the challenges of AS.



Remember, this advice is not a substitute for professional medical guidance. Always consult with your healthcare team for personalized advice and treatment options. With proper management and support, it is possible to lead a fulfilling life with Ankylosing Spondylitis.


by Diseasemaps

Get yourself informed on your choices - medical, non medical, psychological, physical etc. AS requires you to change priorities (health coming first) and get into shape physically and mentally, as you're in it for a long haul and it's a bumpy ride with many ups and downs. Having supportive people around is a great benefit, too. Make sure people understand that you cannot do same things you did before, ask for help when needed. Don't be shy.

3/4/17 by kat1 1050

You can get better but you need to be patient and explore all options

3/5/17 by Richard Deery 600

Stay strong as Ankylosing Spondylitis is a big word alot don't understand or even known what it is so do your research. Look up AS in all forms you can and learn the disease. Spondylitis Association of America in the US is a great site and also has free brochures they will mail you with information as well. NASS is international. So know all you can and keep looking. I also ordered several books and read them from reputstble authors and have information to my family as well. It is very important to have a support system of family and friends and even a group on social media. There are lots and lots of groups on social media some great and some not. So just make your own judgement. You don't want one that always has negativity in it. You need support. But keep in mind most groups are there for people to vent because alot don't have support at home. So others should be responding offering help. Good sign. Also positive post a well boosting moral and education too. Movement is the key as well as we have morning sriffness and stiffness when we sit or stop so some kind of movement or walking around the house, down the street, easy yoga, getting in the pool, etc, but some kind of movement. You don't need your joints to lock up on you. When newly diagnosed sometimes the Dr will order therapy which is great so he sure to do that or if you are having problems with mobility or using your hands ask the Dr if they will write and order for you to go. Remember to BE YOUR OWN ADVOCATE!!! Stand up for yourself and your rights, ask questions of you don't understand something. Read the Spoon Theory, it explains how we use our energy everyday. It is just a short one page read but great info. So always remember you are not alone, it is not your fault, we are here for support, help your family and friends understand, so the best you can to move around and keep reading and education yourself. Research is constantly changing. Although there is no cure new meds are coming out and helping. Also ignore the ignorance of others who see you looking fine on the outside but have no clue what you are dealing with on the inside who make smart remarks. Simply be the bigger person and smile and educate. Best of luck!

3/5/17 by Heather 1120

Know your limits. If certain activity hurts then don't do it.

5/17/17 by Shannon 1050

Get moving more and read as much as you can. Knowledge is power. Also, work on core strength. It helps support your entire body.

5/17/17 by Keli 1050

Research

5/18/17 by Karlie 1150

Ask a lot of questions and research the answers. Try everything to find out what works for you in particular and what doesn't. Do not hide the diagnosis. Unless this disease becomes better recognised, there won't be better treatments

5/19/17 by Kylie Frost 2120

Educate, Educate,Educate,Educate yourself! Do your research, without it I would not have learned about LDN and it is the best treatment for me by far!

5/19/17 by Tamra 1750

Research!!! You are your advocate!! Some treatments can cause other severe problems. You still know your body, watch it a report changes!! Every one is different!!

7/24/17 by 1000

find a good doctor who is familiar with AS, take meds as prescribed, find a support group

8/31/17 by BigStu111 12832

Learn as much as you can, join an educational support group through the Spondylitis Association of America or other Arthritis groups. Use your gut instinct to figure out triggers, get tested for food allergies, vitamin D levels.

9/6/17 by Daniel Wilson 2010

Do not worry about it too much. Make the adjustments you need in your life to function your 100%. If you get problems, contact your doctor right away. Be on it if you wonder about anything.

9/7/17 by Luciano Scariano 2600

Stay positive by focusing on finding a treatment that works; find a good support group for good and bad times; share information/your story, you're not alone.

9/10/17 by Sal 4050

Use Herbal food Supplements which have Omega 3,5,7,9

9/21/17 by Rana Navid Anwaar Khan 3945

Di viverla serenamente accettandola e curarsi bene e mantenere la cura data dal reumatologo

10/1/17 by Silvia 2500

First thing... just breathe :) and hug someone. Then, maybe you could start learning about the condition, how to manage it, the different treatment and communities. Learning and realizing that although they are many things that might tear you down they are actually many things that might lift you up. If you feel you need support, you could contact an association and talk to them for referral and finding communities. And on the day of today online communities is a big benefits, so don't hesitate. Connecting with others who have been managing with this disease for years can be very uplifting although it is also important to maybe find stories that gives you hope and not only people who have a hard time coping with the disease. Talk about it around you if you feel people didn't understand what you were going through and also learn to ask for help and to say no to something that may not be appropriate for you. Acceptance therefore the diagnose can be the start of taking care of the illness in a better way and to learn how to manage it.

2/16/18 by Laeti 3570

Do not give up. Your life is not over. It will just head down a new path. Do alot of research, connect with others.

5/31/18 by Colleen 2550
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Have patience and be willing to do the treatment correctly.

8/10/17 by Andressa. Translated
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Keep calm e informe-se

8/14/17 by Luz. Translated
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Keep calm and learn about everything that relates to the disease.

8/15/17 by Adriana. Translated

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