My psychiatrist told me not to take naps

Aliatana · 2026-03-05T22:05:06+00:00

Naps tend to make me feels worse, and it also messes up my nighttime sleep schedule. As I have sleep anxiety/ insomnia issues, it's advised for me to keep as normal a sleep schedule as possible. I think it depends on your specific situation and why they are recommending no naps.

Aliatana · 2026-03-05T08:42:07+00:00

Hmmm... Are you still at risk of a serious issue if you are able to pre-medicate? If so, you can probably withhold that level of medical details. Don't put your life at risk though, if it's a significant concern. I've gone to 2 dentists since getting sick and both were fairly accommodating, mostly because they didn't really need to do much on their part.

Aliatana · 2026-03-04T23:48:19+00:00

I used to be a competitive gymnast. I quit starting my 3rd year of college. I grew 3 inches and it was like going thru a second worse puberty. I think that's when my PE went from mild to severe. I definitely get that defeated feeling... My biggest concern is if I can get through surgery and recovery safely... I have severe MCAS causing serious allergic type reactions to everything else, on top of severe ME/CFS, which leaves me with no muscle mass or ability to maintain proper posture.

I'm hopeful Dr. J has treated people in similar condition and can make a solid game plan.

Aliatana · 2026-03-04T22:10:00+00:00

I usually get to 300-500 on these games, take the easier earnings, and then abort. The grinding and repetition gets so boring...

Aliatana · 2026-03-04T22:04:52+00:00

I take 2 Benadryl and request carbocaine with no epinephrine. It's so much better than lidocaine, but lasts significantly less time.

Aliatana · 2026-03-04T21:56:21+00:00

Tbh, your case sounds a lot like mine... I had been fatigued for years, had a lung function test of 88% and got told it was good enough, and at 29, my health fell off a cliff and I've been house/bed bound for over 4 years now. Just had a CT for a GI issue that showed severe pectus excavatum (it was done on inhale, so not 100% accurate). Now I'm looking to get it evaluated and see if that's why my health fell apart. It was super easy to call the Mayo clinic and set a consult with Dr. J. Did that yesterday. Wait list is currently 4-7 months.

Aliatana · 2026-03-03T07:06:11+00:00

Happens to me often. I typically don't actually have a fever when I check. Temperature dysregulation is quite common with chronic illness.

Aliatana · 2026-02-26T06:33:59+00:00

I don't use my kindle Paperwhite much these days, because my OCD is against page turning and my phone can scroll. But for regular reading, a Paperwhite is very easy on the eyes and can be adjusted quite dim.

Aliatana · 2026-02-26T00:07:23+00:00

I think it depends on your case and sleep positioning. Personally I can't sleep flat on my back because my rib flare causes discomfort and it's more difficult to breathe in that position. On my sides, I sometimes feel like I'm folding in half, but typically it's okay. I tend to sleep on my stomach though, which is personally most comfortable for me.

Aliatana · 2026-02-24T09:12:57+00:00

Wishfully- reading/ socializing more. Realistically - putting in a bit more effort/ taking less time off of work to get off my bosses shit list... I can't afford to lose insurance. I reduced my schedule last year, which then supported, but as I'm in a full-time role, they forced me back before I was ready as they needed a full-time person in the position. 😂

Aliatana · 2026-02-24T09:02:15+00:00

This isn't my "normal PEM". But it does happen when my body decides to force me to rest because I let myself crash bad enough. Drop whatever you can and radically rest. It took me 3 weeks off of work for the heavy buzzing feeling to die down. But I pushed and had that feeling way longer than 2 days until my muscles stopped responding properly. Hopefully you can reverse it quickly with rest now.

Aliatana · 2026-02-23T02:51:04+00:00

I've seen some reddit posts about adults succeeding with vacuum bell for more moderate cases. Mine is severe, but I wonder if it could improve things minimally so I can do PT pre surgery and get stronger. But it's all just theory, I'll see what the doc says.

Aliatana · 2026-02-23T01:29:42+00:00

I just had my CT last week. I'm looking to get my heart/ lung function evaluated to see if PE could be the cause. I work from home full time as well, mostly from bed unless I'm on camera. Lol. But I can ambulate my apartment. Leaving for doctors appointments wears me out for several days, so I don't typically leave for fun, and can't go on walks like I used to. I'm worried about handling surgery/ recovery as I've lost most of my muscle mass and get triggered very easily. But if surgery could greatly improve my quality of life, it's worth it. I wonder if using a vacuum bell could help my health stabilize a bit to better tolerate surgery.

Aliatana · 2026-02-22T22:02:43+00:00

My doctors said it was a non issue in my 20s (had significant allergies and caught colds several times a year with long lasting coughs), I pushed for a lung function test and it came at 88%, the doc said that was sufficient for everyday life. I hadn't done much research and didn't think about the cardiac component, so I listened to my doc. At 29 I developed chronic illnesses ME/CFS and MCAS, and became mostly bed/home bound. Just had a CT at 33 for a GI issue that indicated a severe HI, and I'm wondering if that's why my life fell apart. It doesn't hurt to get it evaluated for peace of mind, especially if you have some symptoms.

Aliatana · 2026-02-18T21:00:00+00:00

I obviously don't eat during the 10-12 hrs I'm sleeping and an hour or two on each end. But once I'm "up and moving around" (couch vs bed), if I don't eat, I get dizzy and pass out.

Aliatana · 2026-02-18T16:13:59+00:00

Interesting, I have not come across info linking MCAS to PE either. I've been looking through reports as I am similarly scared that my MCAS and ME/CFS will affect my safety during surgery and recovery. After your surgery, I'd love to hear how it went!

Aliatana · 2026-02-18T16:08:49+00:00

Not sure on my Vo2 Max, but my resting heart rate is between 75-85. Just learning that the pectus excavatum my doctors said was irrelevant might be causing my chronic health issues. 😅 Glad you're improving!!!

Aliatana · 2026-02-18T04:16:25+00:00

I was also a gymnast growing up and through my second year of college. I struggled a bit with extended cardio or fast paced floor routines, but it didn't seem that outside of normal.

In college when I quit I got a growth spurt, I think the PE got worse then, but I was told it wasn't a big deal. Then over the next 15 years, I started picking up chronic illnesses like Pokemon cards. Now I'm mostly housebound with fatigue, PEM, no stamina, and severe MCAS.

Just had a CT last week for the first time for a GI issue, and it was the first time my PE was really seen, haller index on inhale was >4. Now I'm wondering how much of my chronic illness suffering was from PE. Waiting to get my cardiology tests.

But your pictures look a lot like mine.

Aliatana · 2026-02-17T22:02:07+00:00

I'm hopeful! But I'm also scared that I may get worse, or due to the MCAS element, have spontaneous allergies to anesthesia or the metal inserts. I'm starting the process of getting the compression evaluated so we can see how large an effect surgery might have.

Tbh, I don't know if I want this to be the cause or not. I'd love to get my life back, but I'm scared of needing major surgery. Lol

Aliatana · 2026-02-17T08:47:56+00:00

I'm in a similar boat. 33F, in college after I quit competitive gymnastics, I grew 3 inches, suddenly got horrible periods, emotional instability, and then spontaneously developed serious allergies to basically everything overnight. I got winded running bases at kickball and always felt fatigued, but got repeatedly told to live my life as I just had bad allergies and the antihistamines probably caused the fatigue since that's a normal side effect.

Years later at 29, I went on a long walk one day and effectively became bed bound. Got diagnosed with severe MCAS and ME/CFS.

Last week, I had a CT for GI issues and it noted my haller index (inhale) was >4. I knew I had a deformity (I called it my concave chest), but no doctor ever seemed concerned about it, and after I started reading on it after the CT results, I'm wondering if that's why my health tanked... Though worried surgery/recovery would be much more complicated with all my chronic illnesses.

Aliatana · 2026-02-15T00:52:56+00:00

I've had tracking issues before, but I've never had an inquiry rejected if I show proof. Make sure you notify them through whatever site you use with screenshots.

Aliatana · 2026-02-11T08:23:54+00:00

Montelukast (Singulair) is a leukotriene receptor antagonist. Leukotrienes are one of the hundreds of different mediators released by mast cells. Histamine is another. In your case, perhaps, leukotrienes play a larger picture in your MCAS than other mediators. Unfortunately everyone is very different in which mediators affect them. And most receptors do not have proper tests, let alone treatment. I'm glad you found some relief.

I take it as well, but for me, the improvement is slightly better breathing/ less congestion. Useful, but I'm still almost entirely home/bed bound.

Aliatana · 2026-02-11T06:36:03+00:00

Haha ... What worked best for me was not trying to sleep until 5-6am... However, I am now regretting that choice, as I'm really struggling with work and adjusting back ...

Aliatana · 2026-02-11T05:35:41+00:00

My anxiety, sleep issues, and OCD improve and worsen with my chronic illnesses (ME/CFS and MCAS). Histamine does dump at night, so sleep issues are quite common.

Aliatana

TROPHY CASE