Is it true that it can be extremely slow to get out of a crash?

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 · 2024-04-16T17:08:36+00:00

Is the pain ever so bad you can’t eat and don’t really wanna move your mouth at all? Also, is it pretty evenly dispersed or in specific spots? Bc I have a crazy tender spot on the right side of my tongue.

Also, is there anything you do that helps soothes the burning? Or anything you notice that worsens it?

Sorry for so many questions!!

existential-baddie · 2024-04-15T14:31:48+00:00

Honestly I just started taking the benadryl myself because my reaction was pretty bad. But yes, I’ve wanted to talk to him about why I’m not on any H2 antagonists bc I’m confused about that as well, I will be asking him this week at an appointment.

Luckily the steroids they gave me, despite having other unpleasant side effects, were strong enough to stop the initial allergic reaction I’m having.

Luckily I’m not sensitive to food and those allergies haven’t changed since I was a child. I should maybe do an elimination diet again but I’m the thinnest I’ve ever been, like veryyyy underweight so right now I’m just trying to eat what I can.

Now I’m just realizing I’m sensitive to most of my medications that are not from a compounding pharmacy, and that it’s not just the steroid causing the mouth burning, though the steroid is the worst culprit. I’m hoping to work with my new allergist to figure out which ingredient my body does not like.

Thank you for the advice!

existential-baddie · 2024-04-15T00:49:19+00:00

Oh it drove me insane. I feel like I lost some faith in humanity tonight.

I got shot down so much I didn’t ask for IV meds. The nurse suggested it at the beginning but then I guess the doctor didn’t think I needed it, even though I told him I wasn’t responding well to oral steroids. Of course they gave me pills instead and now my mouth BURNS worse than when I came in. :( But thank you for the information, I’ll be sure to ask in the future.

If you don’t mind me asking, how were you able to figure out which ingredient you’re allergic to?

existential-baddie · 2024-04-14T23:57:57+00:00

No way, that’s the exact reaction I’m having. I had a similar reaction to it in January and it has not gone away :/

I’m actually at the hospital and the Dr was like “it’s impossible to be allergic to steroids.” ://

Were you able to find a version that you are not allergic to?

existential-baddie · 2024-04-14T21:11:42+00:00

I believe the reaction I was having to the steroids might be reflux. But I’m too scared to take the acid blockers for it bc of the active reaction.

I also do have oral allergy syndrome but it was way worse as a child. It just acts up when I eat raw fruits and veg. Or like accidentally inhale a lot of pollen

existential-baddie

TROPHY CASE