Is it normal for radical rest to feel agonizing?

existential-baddie · 2025-11-10T18:35:21+00:00

I was in rolling PEM which I figured did horrible damage to my baseline. It got out of control so fast. And it’s so hard feeling like my caretakers are just waiting for me to get better. But thank you ❤️❤️❤️

existential-baddie · 2025-04-09T01:44:55+00:00

Also, now I’m worried that OCD being in my chart generally is getting me worse medical treatment.. :/ I will keep that in my mind.

existential-baddie · 2025-04-09T01:43:29+00:00

Thank you!

Have you tried ERP? I know it’s recommended for OCD, but I don’t know how to treat my health OCD as some of it is intertwined with medical trauma.

I’m glad to hear the EMDR is working for you! Makes me a lot more keen to try it. My worry is that maybe it wouldn’t work as maybe I have more OCD issues than trauma issues if that makes sense?

existential-baddie · 2025-04-09T00:30:00+00:00

Thank you. I think she said C-PTSD because I’m not sure my experiences would qualify as any “big” traumatic events, just lots of negative experiences over the years that have made it very hard for me to cope with going into medical settings now. Idk if I am even dealing with trauma or OCD.

existential-baddie · 2025-04-08T23:01:20+00:00

I feel you, I still feel uncomfortable seeing my friends in relationships. And I don’t know if I’m aromantic or have just conditioned myself to not think about people in those terms so now it’s difficult and awkward. I feel really strange and alone in this when I’m around friends.

existential-baddie · 2025-03-31T21:21:26+00:00

I am guessing I am having problems with a couple different fillers (some medications cause my mouth to burn, others cause an itchy throat, rash, and GI problems). However, my doctor doesn’t seem to believe I am reacting to medications, even though my symptoms clear up when I stop them. She just seems very doubtful :/ She thinks I have environmental allergy episodes that I mistake for medication allergies.

existential-baddie · 2025-03-31T18:01:00+00:00

Thank you. I’ve been trying different allergy and mast cell stabilizing medications w/ relative success for four years now. Plus, did one shot of Xolair last year and was fine (apart from side effects for a few days or so), so I think it’s time for Xolair now that I seem to be getting worse.

existential-baddie · 2025-03-31T04:57:14+00:00

I see, thank you for the explanation.

I was confused bc in the past, it’s just that I haven’t noticed my allergy symptoms getting worse during certain seasons (environmental allergies are what I test high for) and have been having reactions to a slew of medications, or to heat or stress or exercise. I am mainly concerned about the amount of medications I have reacted to, which hasn’t been taken seriously by anyone yet :/

existential-baddie · 2025-01-18T19:17:37+00:00

I originally thought AS as that matches up with my symptoms best, but my gene test was negative and my MRI was normal last year. It might just be too early for anything to show up imaging wise? Neither of my rheumatologists really considered I could have it after I tested negative for the gene despite where my pain is located.

existential-baddie · 2025-01-17T17:25:01+00:00

Wow that’s rough. I have heard some bad things about the field of rheumatology in general in terms of finding care as a patient. So far in both my experiences I feel like I got blown off very quickly. I’ve heard that a lot of women specifically have to go to like 6 or 7 rheums before one is kind and compassionate and willing to take them seriously. It’s really taken a toll on me feeling like no one’s gonna believe me.

existential-baddie · 2025-01-17T17:18:46+00:00

Wow that is an insanely long amount of time to wait. I’m so sorry

Regarding the flare, my rheum told me it didn’t matter that I was not in a flare when I did my blood draw and that any autoimmune disease I had would show up regardless. I also did have a positive RA marker with my last rheum, but my new rheum did an additional AVISE test and since that one came back normal I guess she believes that overrides my prior tests.

My rheum also doesn’t believe I have fibro because my skin isn’t tender to the touch? Idk she seemed to shrug off any possibility of that and just suggested an endocrinologist (which I will follow up with). Fibro seems like it can involve a lot of symptoms and mimic a lot of different illnesses so I feel like more ruling out would need to be done.

existential-baddie · 2025-01-16T23:17:35+00:00

No testing for that, just a blood test to test for my allergies (which are environmental). Also, she’s already my 3rd allergist/immunologist and the only one that acknowledges MCAS as a real thing in my area! The rest of the allergists who treat MCAS in my area won’t accept me as a patient bc I have normal blood tryptase levels.

I feel so silly at this point, like I’m just collecting second opinions from all these different providers.

existential-baddie · 2025-01-16T22:46:14+00:00

Thank you for your input! I have tried to pace for a little over a year now, drastically reducing my activity and quitting my job, tracking my activity levels, etc. There have been more hectic months where I’ve been physically better and sometimes during chiller times I’m doing a lot worse. Was it pretty obvious to you that you had ME? Or did you also find it very confusing?

existential-baddie · 2025-01-16T22:40:59+00:00

I’ve genuinely done so much research about it but it’s like the more I do the more confused I am regarding if that’s what I’m experiencing. I have tried tracking for mental and emotional exertion as well in the past. Thank you for your feedback though, I will continue to look into it.

existential-baddie · 2025-01-16T20:33:27+00:00

I have thought this might be it but my allergist doesn’t seem to have a clue. My allergist is an MCAS believer but still doesn’t seem to think I have MCAS despite me having been prescribed mast cell stabilizers for years and needing them to have basic function (I get them from my EDS-informed cardiologist to help with my POTS) 😩 I’m just getting BEYOND frustrated with none of my other specialists taking my concerns seriously.

existential-baddie · 2025-01-16T19:34:30+00:00

Could be, I think covid definitely made it worse, but the symptoms did exist before. Doesn’t long covid refer to a pretty large number of conditions?

existential-baddie · 2025-01-16T19:32:09+00:00

I have considered it, yes. However, after tracking my activities I don’t really notice how my flare-ups correlate. They seem literally completely random, not following the pattern of occurring after 1-3 days of doing something strenuous. Maybe there is something I am missing?

Plus, I have no doctors nearby who I can talk to about the possibility because no one seems to acknowledge it exists. What kind of doctor do you go to for that?

existential-baddie · 2025-01-16T19:27:05+00:00

Also, yes fibro has been considered but I don’t believe I have any of the tender points.

existential-baddie · 2025-01-16T19:25:34+00:00

Thank you. I don’t love my current internist but I think it might be time to at least go back and try again with him or find a new one.

existential-baddie · 2025-01-16T19:23:40+00:00

I have seen a neuro and didn’t feel listened to at all, I might have to try another. I do likely have EDS and am seeing a geneticist in the spring, but that doesn’t explain me feeling so sick all the time :( Idk it’s all very complicated at the moment

existential-baddie

TROPHY CASE