I Have the same issues. I can no longer take daily anti inflammatories due to stomach problems. I cant take Plaquenil anymore. Because of having cardiomyopathy about 10 years ago, I cant take methotrexate or biologics. I took low dose steroids for about 10 years and recently went off of those. The pain slowly got worse. I live with a lot of it. Some days, I take a Tylenol to get by. But some days, I take a Tylenol, an hour later another. In another hour, I take an Ibuprofen. If I still feel bad, but not awful, another Ibuprofen. If that doesnt work, an Aleve. Then, the next day, If I feel the same, an Aleve or a Celebrex I have left in my stash from when I had to stop taking it. Then my stomach feels awful, but the pain is better so It is back to nothing or a Tylenol.
Sounds complicated doesnt it? But I go many days with nothing and just do what I can. I am 64 and worked until I was 60 as a nurse. Couldnt take it anymore, but retiring is also not easy at times.. The fatigue is still there. I think you just get to the point where you just get used to the fatigue and pain. It doesnt mean you enjoy it, but you do get used to it to a point....a new normal.
Mary Ann

I'm so very sorry. On a biologic (3rd one), and filling in with prednisone. Due to severe Barrett's esophagus, I can't take many oral meds, including NSAIDS, Won't risk plaquenil due to sight in only one eye. Feel like this disease keeps me in between a rock and a hard place. Just turned 56, and not able to retire. Widowed, so no other income. There has to be something else. Not ready to hang it up yet!!

Have you tried azathiaprine (generic for IMURAN)? My rheumy put me on it when I had to quit Plaquenil 2 years ago after I developed Plaquenil retinopathy. I had been on Plaquenil for 22 years and I'm fortunate that they caught the retinopathy before any damage was done to my retinas. I still have to go to the retina specialist every six months to monitor the retinopathy.

As for pain, I've been on Tramadol for the pain for about 10 years now. I also have fibromyalgia and I don't think I could function without it. Some rheumys won't prescribe it as it's now classified as an opioid (actually it just has similar properties). However, my primary care doctor prescribes it for me and goes through the (every) 6 month drug testing required.

Hi cariel- have you tried the autoimmune protocol? This drastically changed my life and eliminated my need for meds. It is not easy, but very worth it in the end. If you are interested I am happy to share!

I still have very bad weeks here and there- but I have gotten over that overall feeling of fatigue 24/7 and pain 24/7.

I'm also on autoimmune protocol and it is the second year after first symptoms and only recently symptoms got worst. But very little pain or fatigue everyday,