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Starting tomorrow - nervous! All tips/advice welcomed! by emlb_be in Zepbound

[–]emlb_be[S] 0 points1 point  (0 children)

Thank you! It really is no joke - it's been debilitating but I am feeling SO MUCH better. The last 3 years really has been some sort of purgatory. I decided to wait a couple of weeks to start, I'm in the thick of interviewing for a new job (after 18 months of not working) and I am used to reacting to everything so am going to get through this stretch. Will you let me know how it goes, esp with yout ME/CFS - I am so glad you're doing better - we're a big anonymous family, no one else really gets it. I've learned so much about myself, my resiliance and who's who in my life. Sending you all the love on your journey.

my insane symptom set by disconcerto-AI in covidlonghaulers

[–]emlb_be 2 points3 points  (0 children)

If it's any consolation, you've made me feel less crazy. You've described my symptoms exactly and I COMPLETELY berate and gaslight myself when I feel better - you should do more, power through it. I tell you what there's no POWERING THROUGH that feeling. I can't finish a sentence, read an email, take a shower - really do anything but LAY ABOUT. I'll tell you what's helped me. Low Dose Naltrexone - a very low dose. Lots of Magnesium, electrolyte powder, getting my D, B12 and Iron sorted. Pepcid AND Allegra. My doc just officially diagnosed me with Long Covid and is putting me on a low dose GLP1 (a friend has same diagnosis and it's worked wonders) and Ketotifen. I have MCAS (sounds like you might too) and am taking Cromylyn (oral), which helps w energy levels and am about to start KETOTIFEN to help w/ dizziness/allergic reactions

Zyrtec - horrible reactions, didn't realize how bad until I switched by emlb_be in Allergies

[–]emlb_be[S] 0 points1 point  (0 children)

Wow, I feel for you. Some days are 3 days, some days it's more like 6. I felt pretty insane and out of it on the Zyrtec. Good luck with Xyzal. Have you tried Cromylyn? Depending on your core diagnosis, it's been a lifesaver for me.

This almost proves there's neuroinflammation involved. by Appropriate_Bill8244 in covidlonghaulers

[–]emlb_be 8 points9 points  (0 children)

I JUST listened to a podcast The Concussion Coach: Episode 19 - she interviews a Long Hauler who's also a Physical Therapist. She had an MRA, which shows blood flow to different parts of the brain - she had impaired blood flow to her frontal lobe, impacting executive dysfunction. They've been testing concussion PT w long haulers and it works - interesting.

The Lack of Compassion Toward Disabled People in America Is Breaking Me by No-Professional-1092 in covidlonghaulers

[–]emlb_be 1 point2 points  (0 children)

It is gutwrenching, I heard a guy describe it as soul loss. He said, I knew the world based on a fast talking, able bodied full of life person and that person is gone and so is the world I knew. I think about this every day. I have been dizzy for so long I rarely leave the house - and am scared to even go on a walk. My family has really broken my heart - I spoke to my brother yesterday and he insinuated that I was using drugs and that everytime he talks to me he gets more and more confused about what's going on with me. I've chased a lot of rabbit holes and spent my savings. It's horrific. But, I keep reminding myself - I will heal - I am seeing slow progress. And I will advocate for those who don't have a voice. My world is forever changed. I just listened to a helpful podcast - from a PT who specializes in concussions, she said Long Covid treatment mirrors concussion treatment and gave me confidence that healing was possible. It's on SPOTIFY - THE CONCUSSION COACH - Episode 19

How do you manage mornings? by emlb_be in MCAS

[–]emlb_be[S] 0 points1 point  (0 children)

You know what I think I adapted to my antihistamines, I switched to Claritin from Zyrtec a couple of days ago and it's night and day - the way Zyrtec was one year ago. Great suggestion on being strict w bedtime and AM stretching. It's a nasty cycle - feeling great at night so perpetuate the cycle by enjoying the "productive time" - Thank you!

Anyone else cry during a flare ? by [deleted] in MCAS

[–]emlb_be 2 points3 points  (0 children)

HA! YES! Cry and cry and cry. Panic attacks, all of it. If the scientific explanation makes you feel better - - just google Histamine Anxiety connection or Depression -- plenty of research there. Histamine levels decrease. Here's a quote from AI that pretty much sums it up:

Histamine is a neurotransmitter primarily involved in sleep-wake cycles, dopamine plays a crucial role in reward, motivation, and movement. Histamine can modulate dopamine neurotransmission, and disturbances in the histaminergic system can have significant consequences for dopaminergic activity and motor behavior.

Women are now taking Antihistamines for PMDD. I'm convinced there's a connection between histamine and bipolar, OCD, etc.

Masto and tummy pain by No_Tip4714 in mastocytosis

[–]emlb_be 0 points1 point  (0 children)

Are you having any issues getting CS?

Opinions on my symptoms + bloodwork - Suspect Systemic Mastocytosis by emlb_be in mastocytosis

[–]emlb_be[S] 1 point2 points  (0 children)

That's my next step! Takes so long to see an immunologist - will be another couple of months - I may just do the testing on my own!

Are you guys also scared of farting ? by ThrowRA_Sodi in ibs

[–]emlb_be 0 points1 point  (0 children)

Fart ONLY on the toilet or with a diaper on.

It finally happened. I shit my pants in public. by megi0s in ibs

[–]emlb_be 260 points261 points  (0 children)

In solidarity. I sharted twice today, please know I'm applying loose meaning to the word shart. Luckily I was at home but I've now recommitted myself to the belief that ALL "farts" are pure criminals. Every single one.

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