A Bizarre Change in Condition

Wonder if there’s any chance you’re also dealing with long Covid if indeed you’ve had covid in the past. some of the fatigue, especially after exercise sounds like a common symptom called post exertion malaise.

Just curious, and you don’t have to say,what keeps you from seeing a different rheumatologist if first one was that bad?
And what is LDN?
It certainly sounds like you’re going into a remission of PMR. Don’t know where a “bakers cyst” fits in with all this—no experience with that.
Sorry this is not very helpful to you!
Hope you find another rheumatologist —wishing you well on this health journey.

Hi, nah, no worries. I'm an open book.
My rheum which I had only seen a few times, thankfully!, mostly for osteoporosis left medicine in June to take a desk job in the field. Young woman, compassionate, smart like you wouldn't believe, caring. She told me the person I'd be seeing in her stead in the office of many was so great, "warm and funny." That made me feel better. I wanted to see a woman, but oh well.
So that's the story. I am just not up for the search and letdown with all the other docs I'm *trying* to see.
There is a ton of info on line about LDN. Just Google it.
Thank you for your kind words. Best to you as well.

I had covid but it would have been a year before my pmr symptoms started.
I don't have fatigue after exercise.

I have some similar symptoms; dunno if it’s PMR or not, but my PMP and rheumatologist don’t think so. I just posted something about lower body pain.

I have pain and weakness in my thighs, buttocks, and calves, but am not as crippled as they think I should be 😁. I just haven’t heard an explanation of my symptoms that makes sense.

Also, the weakness in my thighs can disappear for a day, then come back. Once in a while I don’t have to pull myself upstairs with the handrail. I go to the gym, walk some, and garden a lot, so I don’t think I should be that weak. I’m a 70yo woman, for the record.

Interesting that yours started out with lower body.

Did you ever take prednisone?

And what made your rheumatologist terrible? Finding a good doc can be a gamble, sadly.

Hope you get some answers/relief!

Wow.
OK, well, that is a new one. Have you seen a neurologist?
I have not taken pred and don't intend to unless I develop GCA and boy, they'd better be ready to put me in an induced coma as I'd never tolerate the side effects. Anyway, as with you (and I prob said this in my original post), they don't think I have PMR, yet the bi-lateral and type of pain are so spot on. But who knows?
Yes, I had similar pain to yours to start but no calf issues. Then it progressed to upper arms. Groin is particularly sensitive when it decides to hurt. Right now I have very little pain but in an hour, who know? Evenings are the most painful. End of day and arms are very sore.

As far as the rheum, I was handed off to him by my rheum, a very compassionate and brilliant young woman who decided to quit being a doc. She said he was just so warm and funny.
At any rate, I waited a month to see him and when he walked in (very very young), he thought we were going to speak about osteoporosis, another gift from my mom and possibly Prilosec. He was up and running, excited to give me the osteo infusion talk. I told him "No!", I need your help with something else. It should have been all over the previous doc's notes, my records, even a portal note I sent. He had no idea. It was late in the day, the guy was prob exhausted from caring for his new influx of inherited patients. I get that and here I am, posing a challenge. He had to look at notes, US results, at the labs I had printed out, highlighted and organized for him. When he got to cytokine labs, he literally threw those papers into my face, "I don't deal with that, it's not something we pay any attention to." And he said some other words I couldn't take in at that point. The blinding light and loud blare of anger and anxiety had taken over. I needed to get up and leave. I asked him to look into the corner of my eyes where I have yellow dots, which started around the same time as my symptoms. He used his phone as a light. I asked if he had magnification, that he couldn't see it without that. He said, "NO! And even if I could see them, I wouldn't even try to deal with it. We don't handle that kind of thing here." So moronic for a smart young man to behave that way.
That kind of response screams "Auto Immune!" If he doesn't know anything about that, what good is he?
I couldn't wait to leave. He wanted to drain my Bakers cysts and give me a bunch of cortisone shots in each knee and both arms. I said, "I don't think so..it's late...not today." No way was I letting him stick anything close to a needle into me. He said, "OK!" Was so glad to be free from this crazy lady who expected him to do his research. To care about looking into something that doesn't fit his cooky cutter list of diagnoses. How boring for him.
"Just go right out here and make an appt for a few wks or so to get the cysts drained, then in 4 weeks we'll have our very focused discussion about osteo." Little does he know how many of those discussions I've already had. I told the receptionist I'd call. "Bye!" she happily said.
So that's the story. And thanks for your kind words.

Most, if not all, doctors I have seen are overwhelmed by an autoimmune disordered patient who has questions needing answers that they simply don’t have.
We have no choice but to turn to the internet and YouTube. I get more information and support from this site, reading what fellow suffers have to say, than I do from any of my physician “specialists.”

Agreed. Unless one has a clearly defined AI disorder such as RA, they seem to flounder around. Most just don't have the time to really dig in and figure out what might be happening. As you noted.

I'm not sure what helps me, Plaquenil and LDN. Down to 3.5 mg after 16 months. My initial pain was completely disabling.
But I also had an abusive appt with a rheumatologist, then he wrote a secret note to my PCP, trying to make me look like a nutjob and lying about what he told me! He refused to even evaluate me for PMR, since I thought of the diagnosis myself. Mind you, I never needed a rheum, my husband and daughter are both Internists . It was my new PCP who has never seen PMR and refused to accept the diagnosis of my semi-retired husband.
Hiding notes from patients is flat out illegal and if they don't produce it within 60days, I will report him to HHS.

I’m so sorry for your awful experience you had with that rheumatologist!!
Sometimes you need to see what qualifications the doctor has and where he went to school,etc.
Over forty years ago I had a PCP, an internal medicine doctor who was getting close to retirement. He was educated at Loma Linda University and med school and was absolutely the smartest doctor I have ever had. He diagnosed my Reactive (formally known as Reiters syndrome) Arthritis before a rheumatologist saw me and confirmed it! It was a big deal then cause mostly men get this, only 2% women get it!
Another good trait of this doctor was that he listened to me—I was in the medical field and had a tendency to diagnose myself😂, but he listened and did all the appropriate tests and some of the time I was right, lol.
I do understand your frustration in finding a doctor who will really listen to you and make that extra effort to help you! I really hope you find a good one—maybe a specialist in auto immune disorders—maybe you can get a recommendation through the Mayo Clinic?
I also have osteoporosis and they have me on an IV infusion called Reclast. It is a 15 minute infusion you get once a year for about 5 years. They tried the oral medications on me and I had horrible GI problems with it. No bad effects from the IV. You might want to check into it after you get all your other stuff taken care of!
Good luck and best wishes!