A Bizarre Change in Condition

I too will never take pred, for many reasons. And I too just had what might be the last appointment with my rheumatologist, who used to be nice but now treats me like dirt because I don’t comply with his every wish and because I ask questions and have obviously done research. I’m sick of this attitude from doctors. We are paying THEM, one way or another, a lot of money for this abuse. Is there any other service we pay for where we’re treated like this?

I *feel* your "pain!" Physical, mental, emotional. My exhaustion and frustration with docs is beyond description at this point. Some are lucky..they find a moral and ethical physician who is both smart, compassionate and actually enjoys a challenge/trying new things. Others, you and I for example, must suffer. This betrayal of their moral and ethical codes began during the insurance "crisis" when managed care blew up in their faces. Then there was covid, the final straw. I've watched amazing physicians become different people. It's their way or the highway, it's ignoring your messages when at one time, they were there for you, it's a lack of insight and time and so much more. I understand their issues, believe me, I do, but if you've chosen to help people in need and you can't do it, for whatever reason, then patients suffer.
I could go one for pages. Let's just say, when I leave the doc's office, I either feel hopeless or angry/frustrated, knowing for certain that they are NOT doing no harm. They ARE.

PMR is thought to be viral driven. There are scholarly articles/research that discuss how the Covid virus can trigger an inflammatory response (cytokine storm)stimulating osteoclast activity leading to bone loss. The is a double whammy for those of us taking prednisone as the drug can cause bone thinning. There are also indirect effects on bone health. A bakers cyst could be a manifestation of this. One may need to take into consideration if they were vaccinated, how many times and if one had the virus. There is evidence based research being done in this area to help better define what are seemingly a sundry of long covid diagnosis and issues. Understanding this is key in managing one’s health. My best to you.

Long covid has crossed my mind. I have had all the vaccines and covid itself in Feb '23. Seems like a long time for lc to rear its ugly head, but who knows. The Baker's cysts are certainly related to whatever's happening in my body. As well, I believe I mentioned in my original post what appears to be an inflammatory response in my lacrimal caruncles. Lots of yellow dots in the corner of each day. I asked 4 different docs (1 an ophthalmologist) to take a look and none of them could see it. But I can with the use of magnification. It developed at the same time as my pain. I feel sure all of these things are related but the physicians I've seen are not interested in delving into it.
I will look into this possibility as per your comments.
Thanks so much much for posting.

Hello Glinda47,
I believe being proactive and gathering as community is critical to each of us finding a path to better health. There are doctors who will listen. One facet of medicine that is gaining lots of popularity is “Functional Medicine” which you may wish to seek out. I live here in Ireland and we have one 30 minutes from me and 1 (at least) up in Dublin. You can do a search engine and find out more if you wish. I believe we must empower ourselves to be as knowledgable about our health than any doctor. I also believe that this is a new movement that has been born out of covid. Many are becoming disillusioned and frustrated with the medical system and “some” of their doctors and practitioners. Nurse practitioners are brilliant and I prefer as my primary health choice over most MD’s. They listen and use critical thinking skills in helping patients find their best options for managing their health. For myself diet, lifestyle, meditation help considerably. There is also research on managing pain with Bariatric pressure chambers. I’m only beginning to delve into this. I am also researching Ayurveda medicine which also has multiple benefits in managing a sundry of health issues. Again, I wish you the best. We are stronger together as a community. Blessings.

Ps.
Dacryoadenitis re: lacrimal glands is believed to be autoimmune driven. PMR is thought to be an autoimmune disease although the jury is still out to some extent, I believe it is. That said, gut health is imperative as over 70% of our immune system resides here. The “gut” now being referred to as our second brain! 🙂

thx. i'd be interested but i do not "do" any social media.
all the best to you

I agree with you, Patti, about func medicine. I have not looked as far into it as I want to. I live in the Washington, DC metro area and have checked many times for a functional doc. It's amazing how few there are and what bad reivews they get. It's discouraging. I am also interested in Ayurveda medicine and I am grateful that you brought it up. I don't think I have enough years left to do all I need to do.
I did see one doc who is an internist with interest in functional medicine and she was the best to date. Unfortunatley for me, she's in NYC, so we did a telehealth visit. She is treating my daughter for long covid and has her on LDN which has helped greatly. I very much trust this woman as she was the only one interested in putting pieces together. She had me do a lot of labs, none of which any rheums or internists would even entertain, including:
LYME DISEASE AB WEST BLOT
ANA,IGG W RFX TO AB PANEL
RHEUMATOID FACTOR
HISTAMINE, BLOOD
CERULOPLASMIN
TRYPTASE
CYTOKINE PANEL
IMMUNOGLOBULINS QUANT
The only one that concerned her were 2 cytokine measurements, IL6 and 10. I wasn't surprised. " The immune system is definitely overactive. This can be seen with postviral illness, autoimmunity, or in other areas. " She did think LDN would be helpful.
When I asked about "other areas," she said she'd really have to be in-person to address some scans or other tests to follow. I understood that. I really don't want a full body scan to rule out cancer, etc. But haven't totally slammed the book on it. Just not sure.

When I showed these results to my "new rheum," he threw them at me and said "We don't deal with cytokines and other xxxxxxxxxxxxxxxxxxxxxxx." x=words and a sorry explanation I couldn't hear or understand as so caught off-guard by his behavior and also because he wasn't making sense. Well, you understand where I'm going here.

I have read a lot about gut health and long before whatever this plague hit me.
Again, thanks for sparking my interest once again.

Believe me, when I saw what was living in those caruncles, I read for days and days. It doesn't look like Dacryoadenitis. I found one or two photos, one on Reddit actually, of all places and another in an article from NIH in Bethesda, MD. I wrote the author about it but didn't hear back.

Thanks for all the wonderful info and for reminding me there is another way. I do so very much need to find a functional, alternative, integrative doc or program. I believe for me it is going to be the only way. And I agree about the NPs. The ones I've seen in the past have been great. At this time, it may even be tough to get an appt with an NP.

Is Ireland your home? Such a beautiful place. I have not been but my husband is part Irish and many of his *11* brothers and sisters have been there seeking relatives, history, beauty, pubs (lol). My brother and sister-in-law went on an 8 day jaunt recently and had just a fabulous time.
Best to you, lovely Patti and thank you so much for caring. I hope you are faring well from all your efforts and from making the decision to take a functional path.

Thank you for your positive attitude. We need it. Be careful with Ayurveda! Some of their remedies work wonders, but some have been shown to be very toxic. Do research! But I believe wholeheartedly in the basic principles, which were always intended to be manifested primarily in diet and lifestyle rather than in meds. Parallel destructive trends with the West!

Thank you, Mary!
I am super careful about anything that I ingest as I have issues with reflux, etc. As well, I'm quite wary of herbs and supplements and take very few. D3, B12 (very small amts) and Biotin, which may or may not pose a problem. I generally do not take any medication unless I feel it's 100% necessary. I'm on 2 prescriptions which I've taken for decades and they seem to be working...who knows.
Take good care.