Diagnosed with a chronic pain condition. Now what?

1st thing is get your primary, rheumatoid, pain, PT etc all in contact with each other sharing notes. I’d also explore optional pain management modalities. Self-Hypnosis works well for me in limiting how my pain affects me. I tried the morphine’s, oxide, benzos, patches, creams, etc. Trial and error will become your best strategy. Keep a journal, diary, log etc of time pain is worse, what you were doing at that time, and what helps.

A description of your pain issues would be helpful.

@tinkistired Good morning, I just saw your post and wanted to give my input. I have had chronic pain for three years now (started July of 2023), and after seeing more than 30 medical professionals at 5 different hospitals over this time period, I still have no idea why I have the pain that I have. Which is because that is what more than 30 medical professionals have told me, they have no idea what is wrong with me.

My right-side oblique and flank muscles are constantly spasmed/locked from when I get up until I go to bed. My pain level has now reached a 7/8 throughout the day, and with the slightest activity increase (like for my physical therapy exercises and stretches), this jumps to a 9, and I have to lay in bed. This is the only time I get relief, when laying on my back. After 10 to 15 minutes of laying down, the muscles relax enough to where there is almost no pain.

I'm hoping this is actually a good thing, that if the pain can be relieved at all, then this should be able to be diagnosed and corrected. If it was a serious injury, or permanent spine issues, I do not think the pain would go away from laying down. To me, it seems this indicates something is just out of place and needs to be put back in place. But I'm not a doctor, I'm just stuck with some of the worst ones you could see. This is not an exaggeration, as I have been treated poorly by the majority of the people I've seen. I finally have a primary that listens to me, and gets appointments scheduled quicker than I can on my own.

I've tried pretty much everything; chiropractic, physical therapy, acupuncture, trigger point injections, Dysport (similar to Botox) injections, three epidurals at two locations (T12-L1 and T11-T12), Schroth Method (for scoliosis) physical therapy, body mechanics / positioning physical therapy...the list goes on, and my full-time job has been trying to find out what is wrong for three years now.

Sorry this is so long, but this has been a very painful, very frustrating, three years, especially when we are told how good our insurance plan is. Really? I've spent about $30,000 out of pocket since November of last year, and that is with the insurance. I am at the point where it seems this will never be figured out, and I do not know what I will do if this is how the rest of my life is going to be. I am only 63, I retired debt-free four years ago, and I only got one year of retirement to enjoy pain-free. Now I have been removed from society, as the only time I leave the house is for doctor appointments and physical therapy. And I don't know what to do next.

@marcd2k
Hi, I read your post and felt very drawn to it because I have had a similar experience and have been in pain on and off for a decade.
In fact, I write this reply from a hospital bed I've just had surgery to stabilize my SI joints as my Sacrum fractured.
I don't say all this to say my situation is worse. I just want to illustrate that I have been through it with all kinds of procedures, surgeries, etc.. and navigating the health system is so difficult. Happy to get in touch with you to chat, share notes, etc. Maybe I could give you some tips. So sorry you are going through this.

@pack11 Good morning, and thank you for writing to me. Yes, I would definitely be interested in chatting with you to share what we have experienced. And I did not take it as you were saying you were worse because I understand what most of us on this discussion board are going through. How are you feeling after your surgery? What does the doctor do to stabilize the SI joints?