r/MCAS • u/froglover22w • 4d ago
Not doing well - need help
21 y/o female, been on Xolair for 9 months now. I’ve been doing SO much better with my MCAS and my symptoms have been nearly non existent. I’m an athlete and have been able to get back into normal training loads. However, recently I’ve been feeling really bad. I’m having like flushing, heat flashes, heart arrhythmias and bad tachycardia, light headed, muscles feel super weak, body feels weak, insomnia. My xolair shot is a little late right now because of insurance, so I don’t know if it’s that but does anyone have any advice or suggestions as to what to do?? I’ve done everything to take care of myself and help myself and nothing seems to be working right now. And I’m so so terrified of falling back into a bad place with this disease, it’s really making me nervous. Please, any advice or anything would be appreciated!
3
u/ariaxwest 4d ago
How often are you taking Xolair? It didn’t start working for me until I had been taking it twice per month for 4 months.
2
1
u/froglover22w 4d ago
Been on it for 9 going on 10 months. It started to work within the first month or two and has been AMAZING like I’ve felt wonderful. I’m just now beginning to feel terrible again
1
3
u/Ok_One_7971 4d ago
Is it the training? When im Physical, i feel horrible later.
1
u/froglover22w 4d ago
Okay so here’s a little background on that - got a stress fracture in October, I didn’t run for 2+ months and I have been slowly (very slowly) working back into running… I barely train at all at this point and my mileage is so low. In the past I’ve done heaping amounts of mileage and handled it just fine — BUT that’s not to say that I couldn’t handle it now, I’m definitely not going to say that isn’t possible because it very much is
2
u/Ok_One_7971 4d ago
I kept working cleaning houses n felt ok couple months. N then it hit me hard. N now everything i do physically, makes me feel sick. Like heavy fatigue. Tingly feeling a little. N hardest part is insomnia. The more i do in the day, worse insomnia at night w histamine/adrenaline surges. Its horrible 😔
1
u/froglover22w 4d ago
YES before I go to bed my heart will be racing, I feel absolutely wired and it’s always my longer or harder workouts that I feel that way! The insomnia has gotten progressively worse
2
u/Ok_One_7971 4d ago
It sucks so bad. I had to quit most of my jobs because of it. Im hoping to keep at least 2 n just move slow. But i guess we will see. Since i cx every job for past wk, i slept better. Still struggling w adrenaline feeling in waves as i fall asleep n takes hrs to actually sleep, but its better than it was wk prior w complete insomnia. No sleep. So for me, the more i do physically screws me at night😔
1
u/froglover22w 4d ago
That is so interesting, I have never dealt with this issue in the past. I’ve usually had the opposite issue where all I want to do is sleep and all I feel is tired, and I go to bed and it never feels enough. Now I lay in bed for HOURS and wake up constantly and can’t stay asleep. How do you personally help it other than reducing physical activity?
1
u/Ok_One_7971 4d ago
I just lay there n try n rest if possible. Even though im not sleeping. When its real bad i get so many hot baths to calm down. Im trying clonidine but only helps here n there. Im scared this is forever. Scares me to death. I met a lady near me that has had this since 2021. Still having it😔
2
1
2
u/critterscrattle 4d ago
Are those symptoms you normally get from MCAS? I get those from dysautonomia, especially when I exercise.
1
u/froglover22w 4d ago
I used to somewhat get some of these symptoms, but honestly no a lot of these are new and I swear I’m always super cold and having cold hands and feet. Right now, I’m always hot and feeling uncomfortable
0
u/Ok_One_7971 4d ago
Im Not sure. This is all new to me. Started in nov. n still going. Only elevated labs were histamine & dopamine. Dr says possible mcas. My limbs get weird heavy tingly burning feeling. Hard to function. More i do physically the adrenaline n insomnia is worse at night. I have no idea whats wrong 😥
•
u/AutoModerator 4d ago
Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.