Hi All,
I'm new to this site - never been on a health-related site before - but was impressed with the knowledeable, compassionate participants, and thought my experience may provide some hope that things can get better.
I was dx with spondy at age 14; dx psoriatic arthritis at 34.
Rx: basic exercises for spondy ("flex your butt and pullin and flex your abs" was the prescribed treatment at 14, and so I always tried to keep my abs strong, lifted weights, etc. - generally tried to remain active - even when the psoriatic arthritis made things difficult.
For that (PA), it took some time to get the right anti-inflammatory pill PLUS Cytotec, which re-builds the cells lining the wall of your stomach. Was on Prednisone for 10 years, and got off of it in time to avoid bone loss, etc. Moved on the Oxycontin (about 10 years) and Ultram (approx. 14 years). Recently, started with Humira and - thank God! - am now totally off the Oxy, and am almost completely off the Ultram.
O yeah, in late October I had nerve root decompression surgery for the spondy, as I was getting pain and weakness in my legs. Slowly getting strength back, but no leg pains.
All that to say: Finding what works can be a long road. Work with your doctor, and try to stick with the same one, when you find one you click with. I've been with the same one for 24 years, and we've developed a trust and respect for each other. Your Dr. will understand that there can be YEARS of more and YEARS of less pain - with interim changes and rebalancing all the time - and so will be able to help you accommodate those changes. If something no longer works, try something new - that is the nature of PA, and it can affect ones' morale, level of hope/lessness, functioning, and well-being - add in the chronic spondy presence, and things can seem really out of control, and so the ONE thing we tend to overly manage/seize control over is our meds use; and we all know that cuts both ways.
But one thing I have learned: pain and fear seem to go together - and the whole subject of meds can begin to take over one's thought processes, and one begins to live from dosage to dosage, just trying to get relief from BOTH pain and fear. Almost impossible to sort those two out. Please don't think I am anti-meds,even anti-narcotics, or anti-surgery if it is indicated: these treatments are what have kept me functioning in a professional job for years. It's just that recently I've begun to realize my reason for taking the Oxy was out of fear of quitting - and that's NOT a legitimate reason for taking them, and so I quit over a period of time. Guess what? I think I have less pain than when I was taking the oxy, and as I taper down the Ultram, I feel like I'm getting my life and mind back a bit more. A good trade? A little more pain for feeling sharper and more engaged? I think so.
So, bottom line (for now, anyway): I want to take the least amount of meds possible to keep me functioning - and that should have been the objective all along. But because we can get seduced into thinking we should be pain-free, it's easy to overbalance in favor of meds.. Sure, I don't feel great, and am not the same physically as when I started this trip 24 years ago (there's just a lot more things I don't have to do), but my soul is richer, and I have a better perspective on what is important, and more empathy and compassion. I've concluded that God gives us the disease He thinks we need in order to learn the lessons we need to learn, the "designer disease" theory. I think it's true.
So, don't despair. Remember this fact: all we can do is MANAGE our condition; we'll probably never experience a total cure. Internalizing that reality, I think, is the first step towards re-gaining some control over our bodies (though they will still hurt), and not allowing ourselves to be deluded into hiding in a narcotic haze, or seeking some quack cure that will only leave us feeling like a disappointed schmuck. And just because I have a pain, does not mean I need to be one; it can always be worse.