New diagnosis

Hi there I’m in New Jersey and am 62. I’ve just found out that my whole life of pain has been from the syndrome. Things popping up new now all over and at once.

How do you all deal with this pain. Doesn’t seem possible to continue like this.

If you’re not already seeing a rheumatologist, I would encourage you to start there. There are disease modifying meds that can make a huge difference. There’s also the question of whether it’s inflammation or damage. Damage is harder to manage, but physical therapy and associated treatments can make a difference.

I would strongly discourage you from narcotic painkillers. They’re not good for chronic use, and they can change your sensitivity to pain over time.

Hey, welcome to the group. I am sorry to hear you are dealing with so much.
I am taking one of the disease modifiers Stoney mentioned.
Otherwise, I am taking a more natural route as I can’t have painkillers. I use some guided mediation (which sounds very flower child but it works), yoga and light workouts to keep things flexible and my balance in check. I also use CBD oil. I had a few great discussions with my rheumatologist about it. I can help you if you go that route as far as doing your homework and not buying just anything that’s out there.
Pain is wearing emotionally which is where the meditation helps a lot.
Venting here may help too as we get it without you having to explain it.

Hi thanks so much for reaching out. Unfortunately everything is popping up at one time not to get gruesome but it’s not just my back or my neck, I have chronic IBS. Prostatitis. And now this.

My first meeting with a rheumatologist believe it or not is Wednesday there was a cancellation at a very good practice nearby otherwise it would’ve been end of January

I’m scared but today my family doctor told me that even though it’s not curable things could be managed.

I’ve lived on opiates for 30 years in chronic pain in my brain just doesn’t process things the way they should is unfortunately what I’m finding out. Very difficult when the pills don’t work and they won’t operate I just roll a joint and say oh well


Senior stoner JR

Well, they are finding that weed helps a lot and isn’t as harmful as a lot of other things.
Glad they are able to get you in quickly. I remember when I was diagnosed. It took them 8 years to figure out why I was in pain all of the time. I had the moment of being deeply afraid of the future at the same time I was also a little relieved that they knew what it was and I wasn’t crazy.
Give yourself a little time. That feeling of fear will dissipate a bit.
I’m 50 and have developed Fibro on to of SS. I am guessing your rheumy will check for other things as well as SS since you have been dealing with it for so long. Maybe they can get a grip on pain management then.
Keep us posted!