Screwed up progress??

[Spanky2019]

So excited and proud. Went to gdaughters h.s. graduation today. Gone all day. Haven't really been very active for several weeks with weakness, headache, & eye problems. When we returned home my ankles were so swollen. Never had this before. Thought I'd try 5 minutes on my bike (on stationary rack) may help ankle swelling. On it not more than 5 minutes - horrible right forehead pain, right eye felt like being torn out and right jaw pain (never had jaw pain before. I've had tongue claudication). #8 evel pain for 2 hours. Then gradually got better. Haven't had that level pain for a few weeks. Called nurse on line. She says. "Just rest. You had too long of day. Go to ER if you get worse." Also. I am so damn crabby which is not like me. I'm sure this is pred but feel badly about it. I couldn't open a doggone baggy and I had a fit. Also, 5 minutes on bike, realized sore on tailbone. Can't believe 5 minutes & its like a mild bedsore. May be due to losing so much weight over past month+ 20 lbs. My ass isn't as fat for riding bike. Pain level decreased to about 3-4 now. My usual Angel's on this site are probably sleeping. Did I set myself back? Anything I should do to undo what I did? Don't even know if anyone can understand this.

[SheffieldJane]

I am with the nurse. Rest rest, rest. Congratulations on your g- daughter’s graduation. Keep those feet up and think over the happy memories. I can remember the long wait for my little stars on hard chairs, in draughty halls. We all go through periods of irritability. Try not to drive yourself so hard! 💐

[Spanky2019 in reply to SheffieldJane]

Yes, I will try. Thank you as always.

[Constance13 in reply to Spanky2019]

Why aren't you at the ER? What dose pred did you take? You don't want to loose sight in that eye!!!

[Spanky2019 in reply to Constance13]

I know but talked to 2 "nurse on line" service. One thru my insurance & other thru medical center that is gatekeeper to DR on call. They both say " Rest & call DR tomorrow." Could go to rural hospital ER 40 miles away but don't know. We live 150 miles from University medical cntr where my excellent care originates. But always deal with gatekeepers/phone operators to Dr. Dont understand how pain come back so severely on 40 mg for 1 month+ and 60 mg 5 days now. Had to keep correcting nurse she kept saying "giant cell arthritis" not arteritis. Feel so sick, cold & pain. Got my heating pad that helping my shivers

[Constance13 in reply to Spanky2019]

You poor thing! As the others say "rest, rest, rest"! Don't get depressed, there is always someone on here that will "talk" to you.

[Hidden in reply to Spanky2019]

Congratulations for graduation celebration. I hope you are feeling a little better or have gone to the emergency room. It should be one or the other.

Sitting on a saddle getting sore isn't worth it. It takes so long to feel right normally. I used to have a little cushion for stationary training bike and of course chamois shorts or padded cycling undershorts. I hope you have rested with your feet up for at least part of the day!😉

[Spanky2019 in reply to Hidden]

Been in phone touch with lots of medical ppl today. No ER but rheumy's nurse called and discussed everything I"m experience AND to deliver the news that I HAVE osteoporosis. All I could say back was, "oh geeze." Didnt ask numbers but usually once they tell you the results get posted that night. Never smoked, drank, always a bit chunky, active my whole life. Had 6 kids in less than 8 yrs ?? risk factor?? I drank pop to stay awake to do grad school while kids were young AND drank crazy amounts coca cola the past 20 years. My Pain is better today. Pain rx too hard on gut & I'm not a pain level 10 yet so would never ask. Lol, that's the silly warrior talking. Anyway, not even telling family abt osteoporosis. Hoping eye pain gets remedy. Don't remember if I told you that our 4 yr old lost his eye from knife 35 yrs ago

Don't feel like I can complain around anyone about eye pain. Weight loss really needs to be addressed soon. I sound like a real mess. I will never, ever be able to thank you enough for your support. God bless you.

[Hidden in reply to Spanky2019]

If you have enough pred to last until Rheumy take it . I don't think you have had a dose that suits fully yet. So no driving at all until the eye settles!!

[Spanky2019 in reply to Hidden]

Yes. I'm going to take extra 20 mg f(that would be total 80 mg) & see if improvement. Regular Eye DR called earlier but didn't suggest anything. Just wanted me to redo visual acuity test tomorrow but she doesn't treat me. I need to take more responsibility. None of this is going in a good direction. Gotta get my Sisu back.

[Hidden in reply to Spanky2019]

Exactly. Well thought out. 😀

[SheffieldJane in reply to Spanky2019]

Sometimes I think it’s just the way the cookie crumbles, not anything we have done to deserve it or bring it on. There are so many athletes on here it just doesn’t compute. I am so sorry that your awful eye pain has triggered the deep trauma from your 4 year old’s accident. It sounds truly horrendous. Take great care of your eyes. I agree with the advice you’ve already been given. You do sound under-treated. Do you have the numbers from your bone density scan? It might help perspective. A great deal can be done to improve bone health. I remember reading an inspirational account of Heron’s bone strengthening approach. Don’t carry this result on your own, however much your loved ones depend on you. They would prefer to know. Hugs! 🌹Jane.x

[PMRpro Ambassador]

Doubt you have set yourself back - but it does sound as if the dose is barely enough and isn't enough to deal with excitement!! Rest - but a return of pain like that really should send you to the ER.

When you have a severe systemic illness like GCA you have to behave like a poorly person! Not go out for a full day trip to an event that most of us at our age would find challenging anyway! Split it up - stay overnight at one end maybe, make sure you have a place you can retreat to with your feet up. You will have been standing far more than usual, I bet it isn't cool, and you will have been eating and drinking differently - eating away from home adds salt. Lots of salt and hot and standing equals puffy ankles. You should have been in a cool room, with a fan, lots of water and feet above heart level - on the sofa and a cushion under your feet!

Remember for next time.

But what chance do we have when the rheumy nurse doesn't know the difference between ARTHRITIS and ARTERITIS?