Hi! New here and wanted to introduce myself - AS at 23. Help!

Lucy1
Lucy1 Member Posts: 5
in Young people's community

Hi everyone!

I wanted to reach out to some of the younger community on here, I am new to arthritis and have found the journey challenging particularly because I have no one around me going through anything similar.

I have been battling chronic pain/injury in my lower lumbar since my teens but got diagnosed this year with AS at 23. Always pushed to remain really active (I love the outdoors) until this last year which has seen drastic changes in my career path and pass times which has been a huge struggle for me. Feeling pretty doom and gloom about the coming years and this getting worse. I am currently going though a big flare up in my hips/pelvis and wanted to know how some of you guys have experienced it and how you've coped with it?

I was on NSAIDs for 3 months after diagnosis but ended up in hospital with a GI bleed and I am still battling with chronic gastritis from the damage. I am in between reviews with my doctor where we are going to peruse biologics. I am at the point where I am sleeping most nights with ice packs between my legs to help deal with the pain and inflammation and I'm in pain all day no matter what activity or lack of I am doing. Looking forwards to my stomach healing so that I can resume other medications (although that damage has made me a little nervous). Any tips for inflammation and pain in the pelvis area in the meantime? (I already do lots of swimming which has helped it a little and I'm a normal weight).

Also, I hadn't dealt with much pain in my hips until a couple of months ago. It feels very sudden onset in the area and it's really severe. Has anyone else had a similar experience?

Hope everyone on here has been going well, take care!

Comments

  • [Deleted User]
    [Deleted User] Posts: 0

    Hi @Lucy1, welcome to the Online Community! It's lovely to have you here.

    I see that you're dealing with ankylosing spondylitis and are looking for advice about dealing with flare-ups affecting the pelvis and severe hip pain. You also might be finding it hard to be optimistic about the future of your condition. You've come to the right place to meet other young people in your position and I hope you'll stick around, it's great to see you already commenting on other posts and offering support.

    It sounds like you are doing all the right things - we often share information about the benefits of swimming and of keeping a healthy weight, and how ice or heat can help relieve inflammation. I'm sorry to hear that you have suffered with a GI bleed and wish you a speedy recovery so that you can get back on track with your treatment. Hopefully you will see some improvements with biologics, especially with the discomfort you are experiencing with inflammation.

    Here are some links from the Versus Arthritis website that might be helpful to you:

    Ankylosing spondylitis | Symptoms, causes, treatments (versusarthritis.org)

    Exercises for the hips | Versus Arthritis

    What helps hip pain? | Versus Arthritis

    Best wishes, Sarah (moderator)

  • TrampolinistWithAS
    TrampolinistWithAS Member Posts: 5

    Hi Lucy1!


    I was diagnosed with AS at 23 too- I'm now 30. Biologics helped me so much, I hope you can start them soon!


    The key thing with long term use of NSAIDs is to be on a cox II inhibitor (eg arcoxia/Etoricoxib, celecoxib, meloxicam) as they affect the gut less than Cox I inhibitors (eg ibuprofen, naproxen) and to also be taking a proton pump inhibitor (eg omeprazole). I'm sorry to hear nsaids have damaged your gut lining- I hope it heals soon!


    Keep going with the ice, that's helpful. You could also consider alternating with heat to help keep the muscles looser. I find when I'm inflamed some of the problem is tightened muscles that pull on the inflamed SIJs. You may also find a TENS unit helpful. They are available on amazon for fairly cheap. You want one that is dual channel, and preferably a digital display (mine has knobs to control the intensity and knocking them isn't fun!) A TENS unit works by sending small electrical pulses between the electrodes you stick to your skin (don't worry they peel off super easy and can be reapplied). This helps muffle or distract from the pain signals that are being sent up the nerves and to your brain. Some days my TENS unit is all that allows me to walk!


    A question to consider is, is the pain in your hips or is it in the surrounding muscle? Hip pain (I'm told) is a deep pain, muscle pain is much nearer the surface. Muscle pain can be from tightened hip flexor, glutes and adductors. It can hurt every time you move your hip, but the pain isn't actually from inflammation in the joint. Having said that hip problems are also fairly common in AS patients. I only have experience of muscle pain in the area so can't advise on actual hip joint pain. I find heat and stretching helps for muscle pain. It needs to be done very regularly throughout the day though- I'd say at least 3 times. Hot epsom salts baths can also be soothing- just have some ice on hand for the sore SIJs after!


    Good luck, I hope your pain eases soon ❤

  • Lucy1
    Lucy1 Member Posts: 5
    https://community.versusarthritis.org/discussion/comment/687112#Comment_687112

    Hi,

    Thank you for all your great advice, I really appreciate it!

    Yes I was on Celecoxib when it happened, however the Rheumatologist never put me on or mentioned a proton pump inhibitor. It wasn't until I was in hospital that I heard about it and they put me on omeprazole right away. Was feeling very upset about that mishap by the Rheumatologist at that time.

    That is great advice about the TENS unit, I'm glad to hear that it has helped you so much. It isn't something that I had considered before, but I will be getting myself a dual channeled digital faced one this week.

    I am not entirely sure how the hip pain is interacting to be honest. I do have incredible tightness and soreness in those muscle groups, however on either side of my pelvis (seemingly the ball and hip joint area), it entirely seizes up to the point where I cannot walk, sit or lay down without pain. And cannot walk more than 10 minutes collectively in one go on bad days. Stretching, massage and heat has been helping relax the muscles and tone down that soreness and tightness. But that feeling on either ball and hip joint is like nothing I have experienced prior and that's where the ice has been really helping.

    I'm due in for another scan in January for review, looking forwards to see what that shows.

    Good news is I just moved into a place that has a bath, so Epsom salt warm baths are back on the schedule, yay!

    Glad to hear Biologics and TENS has helped you heaps in your journey, hope you're doing well and take care! <3

  • Lucy1
    Lucy1 Member Posts: 5
    https://community.versusarthritis.org/discussion/comment/687037#Comment_687037

    Hi Sarah,

    Thank you for the welcome and for all that information, really appreciate it. This is a fantastic hub!

    Just letting you know that the link "What helps hip pain?" is broken unfortunately! The hip stretching one has been really useful.

    Take care!

  • chrisb
    chrisb Moderator Posts: 757

    Hi @Lucy1,

    I noticed from your last post that Sarah's link to "What helps hip pain" was broken. I believe that this is the link she proposed which should work this time:

    https://www.versusarthritis.org/news/2021/november/ways-to-help-manage-hip-pain/

    Best wishes

    ChrisB (Moderator)

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

Categories