Long story short: My IT band is super inflamed as is all the around tendons/ligaments on my right knee. It has been like this for at least a month. Saw Rheumy twice, he thought it was a compressed nerve in my lower spine, ordered MRI. Everything fine. So he turfs me over to neurology. **I think it is PsA and enthesitis, just a major flare. All I needed was some prednisone to calm it down, strong pain meds for night so I can sleep, and rest. I feel exhausted and downtrodden. He didn’t listen to me, then turfed me when he was wrong. He has been my rheumy for almost 20 years!
I know we all go through this and have to advocate for ourselves but I have one hard, long month and I am weary. I’m loosing my mobility. Honestly I would take a wheelcare over the pain anyday.
Vent away !
I’m currently walking around in a boot because of inflammation all over my right ankle/foot that just won’t calm down. Last year it was the other one.
This disease does indeed suck - sorry to hear about your pain, one can’t just rest/not use a hip so easily.
I truly hope it settles for you - did you try the prednisone ? It used to work for me but my bones aren’t so good so it’s no longer an option. Best of luck.
I have a whole collection of medical boots! We should start a fashion show
I am seeing and ortho who helped me with my IT band inflammation a few years back. I am hoping we can do the same course of prednisone, pain meds, and rest. I’m also going to ask about a knee brace.
That’s incredibly frustrating. I’ve been known to walk in and announce that I need steroids to quiet things down. It actually works more often than not
@amielynn38 some people seem to have a gift at venting…you do it well, thanks! These cycles of hope and dashed hope are the worst! PsA can really play with one’s mental well being. Sorry to hear about the degree of pain that you are in. It must be pretty bad to opt for the wheelchair. Prednisone is such an old drug, you think that they would have something as effective without the side effects by now. Perhaps another visit with your rheumy and a very blunt conversation about your disappointment would help? @Poo_therapy wrote the book on tactful blunt conversations with medical professionals. (assuming the tactful part :). Hopefully the prednisone will give you a break from the pain but not to your bones!
Thanks Amos! at least I’m talented at something, right?
I saw ortho and he agreed that it is my IT band. Its severely inflamed. Xrays shows no damage. He gave me a cortisone injection in the knee and told me it should hold off the inflamation for two weeks! LOL!!! It lasted one day. That was one magical day though. No knee pain and I could walk all over the place. But sadly, this morning that old familiar pain was back. I asked for a medrol dose pack (prednisone taper) and he agreed. Start PT in a few weeks because I have an upcoming sisters weekend, which I am sooooooo looking forward to. Its going to be fun. Pain or not!
I’ll have to find @Poo_therapy 's book then. Because I was right and my rheumy did not listen to me. I should know my own body by this point.
@Stoney I do need a more flexible rheumy or GP. Someone I can message or call and get some prednisone as needed. Lords know I hardly use it. And its not like I am begging for pain meds all the time, though having to beg is horrible. Why can’t we just have doctors who want to take care of us instead of this constant fight?
I will be more firm at our next meeting. Besides the fact that I have proof I was right, I feel he doesnt listen to me as he used to. It may be time for a fresh pair of eyes.
Hey Amos! Well things are actually going well. I started PT 2 weeks ago and it has made a huge difference. Seems I was correct and PsA was attacking my connective tissue in my leg. After some grueling massages and stretches I have been able to get the pain under control. I do think it will always be an issue I need to manage but at least I am building some strength in my legs and moving around better. Thanks for checking in!
