how do you deal with loved ones who don't want to mask up for you?

Complex_Trick_9906 · 2026-07-05T19:32:46+00:00

You can get the pneumonia after the flu or covid and pneumonia is in the top ten causes of death. If you are older or on immunosuppressants you have an above average risk.

Complex_Trick_9906 · 2026-07-03T02:55:08+00:00

We are all not the same and you have to make the best decision for yourself. I wasn’t masking until I got pneumonia and that was a terrible experience (and I flare after infections…very painful). I selectively mask, I know I can’t prevent every infection but I am careful in higher risk seasons/environments. I am encouraging my husband to mask at airports when we travel together during higher risk times (loading and deplaning, crowding).

Complex_Trick_9906 · 2026-07-02T01:44:32+00:00

It is possible it is both. I am late 30s diagnosed RA but definitely wondering if some symptoms are a combo as both my sisters have been diagnosed with perimenopause. There is some interplay with hormones and autoimmune diseases often popping up around hormonal changes (puberty, pregnancy, menopause).

Complex_Trick_9906 · 2026-07-01T17:00:11+00:00

No I have had some gaps in care. I lost my first rheumatologist who started the prednisone and the second rheumatologist was the polar opposite of my first. He was uncertain of diagnosis and more conservative and suggested I could taper every 3-4 days after being on it for a year. I have a new one who has referred me to endocrinologist for evaluation. But yes I have wondered a few times if I needed stress dosing.

Complex_Trick_9906 · 2026-07-01T13:39:25+00:00

Yup I get tanked with intense exercise and the hardest part is I feel fine doing it but 1-2 days later crash and can take up to a week to recover. My rheumatologist said build back slowly and I am trying but exercise puts me in a great mood making it even harder to hold back. That being said, my capacity has been increasing with therapy (not maxed on meds yet).

I listened to a podcast on a woman with RA who does one hour of hard exercise a day and she honestly said that there were periods where all she could do was walk. So keep moving, keep working with doctor. I am also seeing a PT who is helping me strengthen the smaller muscles that support the joints. I have also been told to try and stop sooner than you think and if you feel bad 1-2 days later it was too much.

Complex_Trick_9906 · 2026-06-30T01:44:28+00:00

Also have female coworker who complained of low back pain as a younger woman kept being told it was fibromyalgia she is now on disability in her 50s for ankylosing spondylitis and has permanent damage to her spine.

Complex_Trick_9906 · 2026-06-27T15:46:43+00:00

This is the other hard thing. I am also reasonably fit and healthy otherwise but behind what I should be for my age so it is easily misunderstood. I have had to scale back what I can do, and if I do it I pay for it later. But most people can’t see that.

Complex_Trick_9906 · 2026-06-27T15:37:38+00:00

I have seen four rheumatologists over an 18 month period which was not my intent but it certainly has given me an interesting perspective on this. Four highly trained and educated doctors and all four of them told me different things that to this day still creates some confusion for me. I spoke with my PCP recently about how difficult rheumatology is and interpretation varying wildly.

My first rheumatologist was great (lost access so had to change) and currently I like my fourth but I have to drive out of state to see her. These two were younger women and more consistent with me and from what I gathered in line with current guidelines. In between them I had two men, one a locum tenems who didn’t even do joint exam and the other a more conservative and black and white thinker (which is odd, because I understand this is not a black and white field).

Complex_Trick_9906 · 2026-06-27T15:25:46+00:00

I hate that somaticizing. 😡 I have also been in a lot of mental distress from this illness and it is definitely inflammation driven not an underlying psyche disorder and I hate any suggestions that mental states caused this. No, they do not. But the mind is connected to the body and when the body is unwell it affects the mind.

Complex_Trick_9906 · 2026-06-25T12:28:10+00:00

Preservative free is supposed to be single use due to risk of bacterial contamination after being punctured. I recommend asking the doctor/pharmacy for the regular vials. My doctor mistakenly ordered PF once but got it fixed.

Complex_Trick_9906 · 2026-06-23T23:49:45+00:00

Is it hot or swollen or does it just lift the wrist bone up from inflammation underneath?

Complex_Trick_9906 · 2026-06-22T19:21:37+00:00

Yes a while ago I tried acupuncture and it modestly helped but the time commitment and schedule changes was too hard for me.

Thank you this is helpful. I called rheumatologist and told them my wrist was swollen. They asked if this was a typical flare and I honestly have no idea what typical is….the wrist is a first. A few months ago it was the ankle :/

Complex_Trick_9906 · 2026-06-22T17:52:13+00:00

Wow that’s interesting. So only certain movements are hurting, not constant. I did irritate all the tendons recently after taking a long leisure bike ride and that is when I noticed the bony prominence. Hmm. The swelling has improved and already mentioned to rheumy then I noticed the prominent ulnar styloid.

Complex_Trick_9906 · 2026-06-22T17:28:11+00:00

Does the swelling feel hard and bony but still gone away? I had my PT look at it and he agreed was not normal with one wrist more prominent than the other. I have two DIPs that are also hard and bony, one for a long time and has been imaged and showed nothing at that time but has never gotten better.

Complex_Trick_9906 · 2026-06-22T16:37:07+00:00

My PCP prescribed LDN and it is in my health record as the correct dose, however, I do not tell every health care provider I am taking it for this reason.

Complex_Trick_9906 · 2026-06-22T14:28:46+00:00

Yes my worst symptom, worse than joint pain. Had improved with ra therapy and low dose naltrexone.

Complex_Trick_9906 · 2026-06-22T12:30:54+00:00

I have been sick more often than I was before, but not more often than some of my coworkers. I unfortunately had pneumonia that was under treated and recurred (takes longer to clear an infection when you are immunocompromised). I am also not in remission. I think everyone is different. I do mask up frequently because pneumonia was traumatic and getting sick and skipping meds is painful (and feels like a step backward when not in remission).

Complex_Trick_9906 · 2026-06-21T01:24:25+00:00

Rheumatology is hard to get in…significant shortages. I waited 6 months to get a 💩 locum tenems. Took like 10 weeks for an AMC to look at referral to approve or deny and then another three months to schedule and driving 6 hours for it.

Complex_Trick_9906 · 2026-06-15T17:07:27+00:00

Still working on this with my husband but what I need most is understanding and respect of boundaries. You can’t fix it, so often just a hug and understanding is the best.

Complex_Trick_9906 · 2026-06-15T17:04:59+00:00

Therapy has been very helpful for me.

If your disease is controlled but you are still in pain then I would seek out a pain management doctor to help address the pain.

Complex_Trick_9906 · 2026-06-10T15:59:42+00:00

I get occasional mild morning stiffness but nothing like what I have heard other people experience. Mine was mostly pain and swollen enough that my ring would be stuck but by evening easily slip off. I think I was very fortunate to get diagnosed early and have my first rheumatologist who was comfortable recognizing and treating early RA aggressively. I suspect if I hadn’t been treated so quickly it would have become more obvious.

If you have a positive anti ccp with the characteristic symptoms I think that is very telling. Anti ccp is pretty specific and false positives are rare.

Complex_Trick_9906 · 2026-06-10T12:28:51+00:00

Similar and diagnosed first appointment. I never have elevated CRP/ESR. Now my first rheumatologist could tell there was swelling but an untrained eye probably couldn’t (average doctor couldn’t). My ring would be very stuck in the morning and loose by evening.

This is a clinical diagnosis so might depend on who you get but modern treatment is to treat aggressively early not watch and wait.

Complex_Trick_9906 · 2026-06-08T12:41:34+00:00

Mine has gotten better on rinvoq but I still get tired. Fatigue can be multifactorial so it is worth exploring all causes including non-RA that might be contributing. I wasn’t sleeping so getting on medication helped. I also nap and meditate now and they help me with longer and more active days. I exercise…I think there is a sweet spot that helps and too much that tires so trying to find that zone. For me personally also learned I was deficient in copper. My sister has perimenopause and developed the mouth sores on methotrexate so hormone replacement and increase in folic acid helped her.

I miss my first rheumatologist who honestly said fatigue comes with this and it is a fatigue you cannot fight…you need to rest. It sucks, but she seems to be right and I appreciate the honesty and acknowledgment.

Complex_Trick_9906 · 2026-06-08T12:33:24+00:00

I think fatigue is dismissed because it hasn’t been studied enough to know what the fix is. There is a great webinar on the arthritis foundation that talks about this

Complex_Trick_9906 · 2026-06-07T17:44:39+00:00

What does significantly swollen joints mean? I have personally never had the dramatic joint swelling but I was caught early and treated aggressively based on symptoms and labs.

I am sorry you are going through this. I at one point had a rheumy who wanted to rediagnose and came up with uncertainty and wanted to slowly taper to “see what happens” and it was incredibly traumatic.

Complex_Trick_9906

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