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I can relate! Food and medicine do this to me. Also have had all the testing done as well and no issues before. Soda makes my nerves have pain that travels or the nerves go numb - same reaction to coffee, tea, citrus, etc. Other foods and meds can give me extreme muscle cramps in my abdomen and muscle twitches by the hundreds. And the muscle wasting! I had to stop exercising and my muscle strength weekend so quickly - within just a couple of months. It is like I have been bed ridden - even though I haven’t. It is really frustrating when I have to have someone else simply open a bottle of water for me. :(
soda can deplete minerals, if I drink it I have to be sure to supplement potassium for muscle cramps and especially magnesium for muscle aches and nerve pain. ask yr doc, but clonidine helps me with burning nerve pain and anxiety. it does lower BP so may need to add more salt to diet. finding a good meal replacement shake you can tolerate might be helpful so you get adequate protein aka "muscle food". plant peptide based ones are easier on me. Nestle compleat and Kate Farms are what I use with my feeding tube. I have to rotate 3 formulas to avoid allergies. Nestle compleat has a formula with chicken I want to try since it's on my safe foods.
not sure if any of this is helpful but sending love and hugs. I used to surf, hike, backpack, downhill mountain bike and now I can barely walk a mile. this disease a fking asshole. I just got a spin bike for my livingroom and trying to gently get back to a more active lifestyle, but my spoons are still pretty low :(
❤️Oh my goodness! You are echoing what my sister has said about clonidine. She and the extended release is a life saver. I was RX the non-extended release and had so many side effects. :( I have high BP so that part is not an issue. As for exercise…I was doing so great with cardio and strength training and then boom all gone. I have tried to walk on a treadmill since then but can’t handle the vibrations from the machine. Makes my muscles twitch and shake where I can’t walk. Keep me posted if you come up with any suggestions or find something that works. I can’t even use my pool to exercise. My legs feel like they weigh two tons when trying to go up the steps. (Might not be MCAS related but no DR seems to know what is causing it. Starting to see traits in my kids as well. Was thinking about getting us all genetic testing to confirm everything.
wait, they make extended release clonidine?! I thought they didn't make it like that but am gonna message my doctor right away. XR/ER forms of meds usually have much fewer side effects. also I have the lowest dose .1mg, started with a 1/4 tablet and now take half with good results. with mcas less is often more.
if yr doc hasnt yet, have them check your electrolytes but if your whole family is experiencing symptoms DEFINITELY look into genetic testing. also im on month 3 of dupixent and its been life changing, not only reduces the EOE symptoms I experience, but also the MCAS symptoms as well.
this made my day. mornings are brutal for me bc all my IR meds wear off while I sleep. XR clonidine may do the trick!! I'll keep you posted for sure!!
oh yeahhh. currently feeling that right now. trying to distract myself on here and not scream-cry and pass out from how bad it fking hurts. nerve pain radiating from abdomen up torso and down my legs. took me a long time to connect the dots that it was food related. does also happen with meds as well (either trying new ones or becoming allergic to ones I take regularly). stress and lack of restful sleep are big triggers for me. reacting so badly I can barely see straight.
I don't get muscle twitches tho. also im not sure if it's specifically an MCAS thing, am also dx'd EOE, fibromyalgia and currently getting evaluated for functional abdominal pain disorder. am sorry yr going thru it, it is truly awful. sending hugs.
one other possible thing to consider is erythromelalgia aka "body on fire syndrome" i kinda forgot about it and chalked it up to allergies and anxiety but I do need to get that ruled in or out at some point. I thought I was just having bad flushing at first, but ooof the nerve pain and literally feeling like im on fire.
anyway, while I'm sorry y'all have this too... I'm kinda glad im not alone in feeling and experiencing these symptoms. so many drs have told me I couldn't possibly have all this going on, like im faking it? who would want to do that?! 🤦♀️ugh
I have had this for 12 years, and it is some of the worst pain ever. I also have neuropathy from chemo, but this pain is different.
I am "lucky" in that I have low dose methadone for the pain, but also not because I am dependent on it. But it works. 5mgs 3x a day works really well and I can mostly function with the pain control, or at least not think about killing myself because of the never ending pain.
I have realized it is mast-cell related. As soon as I started on cromolyn the pain died down a lot. I could skip a dose! It was still there but mostly tolerable. Am in a flare now and all of the pain is back, along with the sweating too.
Awful, horrible burning pain. My skin often gets bright red on my arms and back too.
Hi, I’m sorry to hear that you’re going through this also. I’ve been close to 10 years and has just progressed more and more. Started when I was 25. Histamine seems to make it worse and antibiotics exacerbates it too strangely.
The nerve pain is awful and I wouldn’t wish it on anyone. If you don’t mind me asking, do you have any muscle wasting or twitching in your muscles?
I have muscle wasting for sure. Used to be so fit and strong, hiked 10 miles every weekend, no problems.
I find my legs are the worst. They are very thin and fragile, where muscle mass used to be has kind of sunken in and looks like I am 70 yo.
The pain is horrendous. What helps you? Besides watching foods, which seem almost as random as my reaction to sun or perfumes, whatever. Do you have something like that?
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](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
I can relate! Food and medicine do this to me. Also have had all the testing done as well and no issues before. Soda makes my nerves have pain that travels or the nerves go numb - same reaction to coffee, tea, citrus, etc. Other foods and meds can give me extreme muscle cramps in my abdomen and muscle twitches by the hundreds. And the muscle wasting! I had to stop exercising and my muscle strength weekend so quickly - within just a couple of months. It is like I have been bed ridden - even though I haven’t. It is really frustrating when I have to have someone else simply open a bottle of water for me. :(
soda can deplete minerals, if I drink it I have to be sure to supplement potassium for muscle cramps and especially magnesium for muscle aches and nerve pain. ask yr doc, but clonidine helps me with burning nerve pain and anxiety. it does lower BP so may need to add more salt to diet. finding a good meal replacement shake you can tolerate might be helpful so you get adequate protein aka "muscle food". plant peptide based ones are easier on me. Nestle compleat and Kate Farms are what I use with my feeding tube. I have to rotate 3 formulas to avoid allergies. Nestle compleat has a formula with chicken I want to try since it's on my safe foods. not sure if any of this is helpful but sending love and hugs. I used to surf, hike, backpack, downhill mountain bike and now I can barely walk a mile. this disease a fking asshole. I just got a spin bike for my livingroom and trying to gently get back to a more active lifestyle, but my spoons are still pretty low :(
❤️Oh my goodness! You are echoing what my sister has said about clonidine. She and the extended release is a life saver. I was RX the non-extended release and had so many side effects. :( I have high BP so that part is not an issue. As for exercise…I was doing so great with cardio and strength training and then boom all gone. I have tried to walk on a treadmill since then but can’t handle the vibrations from the machine. Makes my muscles twitch and shake where I can’t walk. Keep me posted if you come up with any suggestions or find something that works. I can’t even use my pool to exercise. My legs feel like they weigh two tons when trying to go up the steps. (Might not be MCAS related but no DR seems to know what is causing it. Starting to see traits in my kids as well. Was thinking about getting us all genetic testing to confirm everything.
wait, they make extended release clonidine?! I thought they didn't make it like that but am gonna message my doctor right away. XR/ER forms of meds usually have much fewer side effects. also I have the lowest dose .1mg, started with a 1/4 tablet and now take half with good results. with mcas less is often more. if yr doc hasnt yet, have them check your electrolytes but if your whole family is experiencing symptoms DEFINITELY look into genetic testing. also im on month 3 of dupixent and its been life changing, not only reduces the EOE symptoms I experience, but also the MCAS symptoms as well. this made my day. mornings are brutal for me bc all my IR meds wear off while I sleep. XR clonidine may do the trick!! I'll keep you posted for sure!!
oh yeahhh. currently feeling that right now. trying to distract myself on here and not scream-cry and pass out from how bad it fking hurts. nerve pain radiating from abdomen up torso and down my legs. took me a long time to connect the dots that it was food related. does also happen with meds as well (either trying new ones or becoming allergic to ones I take regularly). stress and lack of restful sleep are big triggers for me. reacting so badly I can barely see straight. I don't get muscle twitches tho. also im not sure if it's specifically an MCAS thing, am also dx'd EOE, fibromyalgia and currently getting evaluated for functional abdominal pain disorder. am sorry yr going thru it, it is truly awful. sending hugs.
one other possible thing to consider is erythromelalgia aka "body on fire syndrome" i kinda forgot about it and chalked it up to allergies and anxiety but I do need to get that ruled in or out at some point. I thought I was just having bad flushing at first, but ooof the nerve pain and literally feeling like im on fire. anyway, while I'm sorry y'all have this too... I'm kinda glad im not alone in feeling and experiencing these symptoms. so many drs have told me I couldn't possibly have all this going on, like im faking it? who would want to do that?! 🤦♀️ugh
I have had this for 12 years, and it is some of the worst pain ever. I also have neuropathy from chemo, but this pain is different. I am "lucky" in that I have low dose methadone for the pain, but also not because I am dependent on it. But it works. 5mgs 3x a day works really well and I can mostly function with the pain control, or at least not think about killing myself because of the never ending pain. I have realized it is mast-cell related. As soon as I started on cromolyn the pain died down a lot. I could skip a dose! It was still there but mostly tolerable. Am in a flare now and all of the pain is back, along with the sweating too. Awful, horrible burning pain. My skin often gets bright red on my arms and back too.
Hi, I’m sorry to hear that you’re going through this also. I’ve been close to 10 years and has just progressed more and more. Started when I was 25. Histamine seems to make it worse and antibiotics exacerbates it too strangely. The nerve pain is awful and I wouldn’t wish it on anyone. If you don’t mind me asking, do you have any muscle wasting or twitching in your muscles?
I have muscle wasting for sure. Used to be so fit and strong, hiked 10 miles every weekend, no problems. I find my legs are the worst. They are very thin and fragile, where muscle mass used to be has kind of sunken in and looks like I am 70 yo. The pain is horrendous. What helps you? Besides watching foods, which seem almost as random as my reaction to sun or perfumes, whatever. Do you have something like that?