Hello Pitac 😘
Thank you for your message,i understand all those things and i have read your links and doing what it says change comes with time and learning which I do from you,right with the steroid I wasn’t asking for it daily, weekly or monthly it’s because of the flare I have had three steroid injections since 2023 I think that is good going but yes I understand that I also asked about lidocaine 5% patches, Local anesthetic injection/nerve block other things to try but was told no and topical to try, I am on codeine for now with a heat pad, I asked my back if i could get a loan for private but they wouldn’t due to financial situation.
The physical therapy I always used to be active and go to the gym I never said I wouldn’t go PT I am waiting for physio right now I have two infections so battling them as well as the AS.
I am pacing not just laying around I am moving as best I can.
I am sorting out my diet and it’s not so bad compared to people I know!
But I agree I had hot cross buns and sugar more recently but I don’t all the time it’s not every day but it was more than normal yes I understand but I am changing that.
I am not a person that gives up I do try I always try that’s me that’s what I do, it’s bloody difficult and yes very painful and frustrating but I am always trying.
I said I do the walking/ the yoga modified/ I said the physio I had was not for the AS it was for fibromyalgia I asked for a physio who knows about AS I thought it was the one I saw but it wasn’t I push and push but seriously I do a lot it might not seem to be but mentally and physically it is and I am struggling with depression on top the Gp said.
The infections I have been back and forth about them I am not just sitting here wallowing in self pity believe me.
I understand you know more than me and understand the challenges, I am 66 your 60 you had it longer I know.
I am staying the course so yes it was hard to read what you said but I understand it.
Please don’t say if I want it as you know I do, mentally and physically and emotionally challenging is very very difficult but I am resilient and I had to be from when I was very young.
Look after you
One day at a time yes that’s what I do.
Take care
Jan

@A MySpondylitisTeam Member. I'm so sorry you are having such a rough go of it Jan.

There are 4 methods that I am aware of for managing chronic pain.

1. Meds
2. Invasive procedures like nerve ablation or surgery
3. Diet and supplement nutrition
4. Physical therapy and lifestyle adjustments

All have multiple things to consider from side affects to how likely a patient will commit to the chosen method.

1. Meds all have side affects, many of which are worse than the condition they are treating. Steroid injections often dissolve bone over time and eventually lead to necrosis (black decay death of the bone/joint). If you have an osteoporosis diagnosis it will almost certainly make it worse. What worked in the past won't work if your osteoporosis has progressed. The standard of care to prevent this is 4 injections. That's why you can't get it now. Also, steroids are designed to relieve pain enough for you to stick with a daily physical fitness therapy regimen. If you aren't doing this, you will be wasting the intended reason for the drug.

2. Invasive procedures require physical therapy for life. To have any of them and not do the PT is going to cause your disease to worsen due to the inactivity while laying around recovering.

3. Diet and supplements are a must 100% of the time. If you add an inflammation causing food (like the hot cross buns you mentioned a few weeks ago) you will start the cell level cascade of inflammation to start all over again. Indeed, the hot cross buns and other sweets you mentioned that you occasionally indulge in, combined with sleep trouble and stress, probably set off the flare you are currently experiencing. I know how exasperating that is, I did it too one month ago and am only now beginning to get a glimpse of relief. It takes a long time of 100% avoiding sugar and other inflammatory foods to get past the systemic inflammation they caused. Cheat the diet, cheat the body. Sorry for that brutal reality, I deal with it too.

4. Physical therapy and lifestyle. None of the other methods work without this. It is our life. Tiring, challenging, painful, but works if we stay the course.

Lastly, I speculate that your drs are not helpful because they dont see you staying the course of doing your part to help yourself. If you dont want to take their meds, and I dont blame you I dont take them either, what ARE you willing to do and stick with?

I know quite well the challenge of anti-inflammatory living. I deal with it too, Even now I am working to chart a new course to avoid the recommended total hip replacement of both my hips that was put in front of me yesterday. Always something. But at just 60, I figure I have a good 30 more years of a life worth staying healthy for. You do too if you want it. One day at a time. Yibh P 😌🙏

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A MySpond...

I understand Jan. I didn't mean to come across like i think you dont try. I know that you do, very hard all the time. If I came across like I dont think you dont give it your all, I sincerely apologize, because I do know better, that you do your best with what you have. I know the frustration. Every now and then I test the proverbial waters with my diet too, trying to add everything from greens I havent had in years (due to Chron's and kidney stones) to sweets. Afterall, supposedly if we can fix our gut we can go back to a wider variety diet and that's supposedly healthy. So, yeah, I do understand how exasperating that is. Just a month ago while visiting my daughter i ate healthy salads for dinner loaded with spinach, chard, other greens and a grilled fish fillet, celebrated the rare 3 days with her by joining in on the dessert afterwards. Developed multiple kidney stones that stuck around for a month causing a bladder infection and now on antibiotics wiping out my hard earned beautiful gut microbiome back to zero. Oh, and the hip dramas I've had since 2012, I just learned yesterday are due to a congenital hip dysplasia issue I've had since birth apparently and now impingement. Diseased from Spondylitis? Nope. Nothing will fix it but total hip replacement both sides. What?! This surgeon has met his match in me. If I've had them since birth and managed to make them work 60 years, well we shall see..
Anyway, Jan, please accept my sincere apology if I came across like I dont think you're giving it all you got. I know you are. You'll figure it out. Don't give up. Hang in there. Yours in better health P 😌 🙏

If you have access to ChatGPT, explain your situation to ChatGPT, ask ChatGPT to recommend solutions, and then ask ChatGPT to draft you a letter to send to your doctor or whoever ChatGPT recommends.
I did the same thing with ChatGPT, because of falling( not the pain issue you describe), and ChatGPT guided me to requesting a cardiac workup to see if something was causing my blood pressure to drop suddenly. So my using ChatGPT helped me get help. It gave me the buzzwords to use that then cause Dr to act. Otherwise I would be screaming the way you were.
Good luck, I hope it works for you

Thank you 🙏 Pitac yes I really do my best yes I am trying and it’s really not easy as you know, thank you for your support and apologies.
I have bought an anti inflammatory book and went on CHAPT thing hope I spelt it right I have a list of inflammatory food want not to eat and what to eat hopefully will help.
So sorry about your kidney stones and hip it’s just non stop isn’t it, this is it sometimes we forget and those desserts looked lovely I bet it’s a nightmare I hope your off the antibiotics soon.
Have you tried kefir.? I read about that today I bought some on the shopping list online as in the shops my husband can’t find it said good for gut health.
Well you know and you will say and basically you had that all your life you do what you think and yes he probably has bless you.
I will do and yes I do I think I came across attacking you I am sorry, the gps this week the rheumatologist every one I just felt like no one listened and still doesn’t but i know you do.
Just very frustrating.
Will do my best and you as well 🫶🙏
Take care.
Jan