I am wondering if anyone with experience of both Spondylitis & Elhers-Danlos may be able to help me understand the difference between symptoms of each. I just found out that Elhers-Danlos runs in my family on my dad’s side, while Spondylitis runs in my my mom’s family. I’m having trouble getting a diagnosis beyond fibromyalgia but I’d like to narrow it down more if possible as (1) I would like to try to address/tread root causes of pain & prevent future damage, and (2) I’m scared my… read more
@A MySpondylitisTeam Member,
Thank you for all this information - very helpful. 😊
I have seen the 'cupping' method and hot stones. I need to find one close to home. Waiting to see if the SI injections work down my legs. Looking forward to acupuncture, thank you! I also use the CBD, he Tincture is great, the flower, can only do at night, I am like you, want natural 🌺
@A MySpondylitisTeam Member
Besides the quick google search I just did, I am unfamiliar with Elhers-Danlos. I am however, VERY familiar with spondylitis. I definitely understand the stress and insecurity associated with not having a clear diagnosis and plan of action to control your symptoms. I've spent the last 5 years or so knowing I have AS but also having to grapple with the knowledge that my imaging and bloodwork do not fully support the level of symptoms I experience. With autoimmune diseases, there is a significant correlation with our emotions. I have had anxiety and depression for as long as I can remember. I am not a fan of medication but I have done trials on and off meds and have found that the struggle is beyond what I can handle without anti-depressants...For now.. I am also very resistant to medical intervention for my AS as long as the lab work shows no signs of significant damage. I've had the unique opportunity to spend the last few months on paid leave from work to focus on getting my symptoms (physical and mental) under control. My unique circumstances have allowed me to fully immerse myself in a mindfulness practice as well as PT for acute issues and acupuncture that I find makes a huge difference for my pain. I don't have any real obligations, no children or dependents and I have the resources I need to work on myself on my own terms. With that being said, my only recommendation is to look into mindfulness. I am/was very similar to you in the sense that I wanted a definitive diagnosis and plan of action but autoimmune diseases are tricky in that sense, especially as someone who is disinclined to go the medication route. Fibro is also tricky since it is almost a catch all for people experiencing pain that can't be readily explained. I don't know if any of this is at all helpful, but just being kind and patient with yourself makes a world of difference in the chronic pain world. If you are interested in learning more about the resources (books, podcasts, ect) I've been utilizing feel free to reach out, I have plenty of time on my hands!
@A MySpondylitisTeam Member acupuncture takes about an hour, some days its quicker, some days it is longer. My acupuncturist will leave me longer if she thinks I need it or she will add in other methods like cupping and massage if she thinks I will benefit from it. I find that all my body needs sometimes is 45 minutes, I tend to become alert around that time and then I am just waiting for her to come back to get me. Some days I am OUT when she comes back to take out the needles, it all depends on what your body needs at that time. When I first started going I found relief could last for about a month, but I found every other week to be "good enough.". I have been going every week since May because I have the time and money to do so. I had a long stretch during lockdown where I couldn't go and my symptoms got REALLY bad, so I am trying to make up for lost time and also find a way to avoid taking NSAIDs regularly. So far so good, I haven't had to take my NSAID (Etodolac 500mg) in over a month. Full disclosure, I am also heavily supplementing with CBD and working my way into modest doses of THC as needed which has helped along with a very intensive focus on mindfulness. My personal preference is to go as natural as possible with the least amount of side effects as long as I am not experiencing joint damage. I hope this is helpful!
@A MySpondylitisTeam Member, I had SI Joint shots today, THEY WORKED!!! 🥰
No pain back there, my butt feels heavy. ?
I like to meditate, read my Bible, stretches, and I am getting emails daily from Mindfulness (Welcome to Day 6 of Mindful’s 30-Day Summer Wellness Challenge)! Same one? There are so many out there.
I also get First15, it is a religious podcast, voice is so soothing.
I have done some yoga poses for my back.
I am still going to pursue an acupuncture. Can you share with me how long it takes and does the acupuncture help for a while? Thank You
Have a good evening, 🌻
@A MySpondylitisTeam Member
I know clinics are probably not running as usual due to COVID but I know, at least where I live in Mass there are tons of clinics that offer low cost acupuncture treatments. It would definitely be worth continuing if you can find a more affordable option, especially if you have already found it to be helpful. Some acupuncturist are in it to help not just make money, mine has worked out a payment option I can afford now that her clinic isn't running, I highly recommend reaching out and see what you can find. Best of luck, I hope you are able to find a way to cope!
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