Frankly, I don't think "doing everything right," will ever help all that much with autoimmune issues. I did a succession of things for 7 years to really no avail. Finally, I was put on plaquenil. It took a long time to kick in completely. (I keep trying to remember how long, but I was on a low dose). Then I went into a "close to remission." After 7 years of plaquenil, I discontinued it and stayed in my "close to remission." Many years later, it came back. I've been trying to get back into a "close enough to remission." I thought I was there after taking Methotrexate. The benefits stayed after I discontinued it, and I thought I was really in remission. But no. Anyway, for me the right meds are the only thing that really worked, and finding the right meds, and the right docs to prescribe them is always just a long process. Since I have lupus like UCTD, there is a possibility that it could "burn out" now that I'm much older. But it has improved (although I'm not feeling too well at the moment). For me, never giving up has eventually led me to the right docs and meds.

it's difficult, but do able. But it is my feeling after dealing with this for almost 40 years is that the right meds can really help, but none of the many, many types of alternative medicine, diets, physical therapy helped more than around the edges.

Anyway, good luck. I do commiserate with you since I was in my mid-twenties when I first got sick. But I did have a long "close to remission," when things became much easier for me and there were fewer drugs available then.

From what I have seen Megan, you are on a way too low dose of pain medication. I don't know if you would want to try a higher dose of meds, or if your doctors would even be willing to give you more pain meds, but that might be exactly what you need. But then again, the meds will not make every person fully functional. I overdid it by working just 1 hour a day for three days in a row. I shouldn't have, but I washed dishes for a half an hour today and my leg is buckling. I have to rest not or else I won't be able to walk through the store tomorrow get buy my cat some more food. I doubt that even doubling up on pain medication will make me able to do any more physical work today. It simply won't, but in your case since you have not tried the heavier meds, it might make a big difference in your ability to function. That is about all of the advice I have for you seeing as my disorder is not joint related, but more or a circulation related issue. Good job with finishing up your degree and also with the new job. You are accomplishing many great things despite having a major physical disability. Hugs.

J

yes it is frustrating when we see no results from all our hard work. Wishing we would improve but instead all that work keeps us at our current level. when I get that feeling I try to remember if it wasnt for all that hard work I would be getting worse faster. Being stable or slowing the progression is all some of us can expect, depends on the illness. Good luck eith your journey.

Today I will be happy

I can certainly relate..but I have not gotten past it yet either.

Hugs

For myself at one point I had the realization that my health was gone. I went through a mourning period for it. Acceptance was helpful in trying to move on.

Hey Megan, well with CP at some point you kind of have to sit yourself down and have a talk with yourself about what the CP has taken from you and what you won't get back. You have to be honest about what part of your illness can get better and what part can't. You have to be honest about the fact that from this point on it's Pain Management and not Curing the Pain. You need to come up with a number of Pain that you can be at and be functional each day and make that your goal. Make that the number that you and your PM Doc set your med dosage for. Your on a pretty low med dose, and I doubt it's getting you close to where you need to be in order to stay at a level of pain that you can function. You have to wrap your mind around the truth and come to acceptance of that truth.

Acceptance of what your new normal is, is what will get you past this wall of confusion/irritability/frustration that you've got up right now.

I realize that none of this is easy, and it's not something you want to admit to or think about...but until you come to acceptance of this reality your going to be confused, frustrated and irritated. So work out what your "functionality" pain number is, (mine is 5), then work with your Dr. and get on a pain med schedule that allows you to keep your pain to whatever the number is, so you can work and do the things you need to do each day.

Take care hun.