Ok were all tired and exhausted all the time! Is it true that caffeine can make symptoms worse? Because I drink energy drinks. They’re like my lifeline! Lol… But if it makes things worse then I should quit drinking them! But wondering if anyone drinks caffeine? I know I ask a lot of questions! Lol… But once I finally get to see my doctor is when my answers will get answered! Until then you guys are the only ones I can ask and get answers from! & the only ones I can vent to! Lol and I thank every single one of you for just being on this site! & for helping me deal.with what I feel like is impossible!!!7
Hello Tiffany,
Never mind about asking questions....that's what's the site is for and issues come out into the open which will help yourself besides other member's, so don't even worry where that's concerned plus you have our full support till you know what's the matter with you plus afterwards you know that and if we did'nt talk with someone...we'd all end up going nuts with the disease.
Yes Caffeine is bad for lupus it makes your symptoms alot worse mate but decaf is ok otherwise....so try and hit drink decaffinated....you think it's rasing energy levels but it's actually making you worse.
This links about bad habits and i definitely have one smoking. xxx
http://www.lupusny.org/about-lupus/newsletters/september-october-20...
Sweety, your questions are always welcome. I dont know if caffeine makes your symptoms worst. I do know that it keeps your body from absorbing iron. So since a lot of us have anemia I just cut out caffeine
Hi Sunshine,
With all these things that make Lupus worse...it's like every enjoy you like as to be took away from you, well i know for one thing i need my fags. xxx
sunshinespraypaint said:
Sweety, your questions are always welcome. I dont know if caffeine makes your symptoms worst. I do know that it keeps your body from absorbing iron. So since a lot of us have anemia I just cut out caffeine
Oh jeesh..I love my coffee in the morning and the special treat of a Starbucks Latte when I move like a turtle.
Tez_20 said:
Hello Tiffany,
Never mind about asking questions....that's what's the site is for and issues come out into the open which will help yourself besides other member's, so don't even worry where that's concerned plus you have our full support till you know what's the matter with you plus afterwards you know that and if we did'nt talk with someone...we'd all end up going nuts with the disease.
Yes Caffeine is bad for lupus it makes your symptoms alot worse mate but decaf is ok otherwise....so try and hit drink decaffinated....you think it's rasing energy levels but it's actually making you worse.
This links about bad habits and i definitely have one smoking. xxx
http://www.lupusny.org/about-lupus/newsletters/september-october-20...
Hi Kathy,
I eat everything i should'nt regarding Lupus besides smoking and my cuppa's are PG....the only things i've got out are the ones that give me severe pain with my IBS.
It's a pure nightmare mate.lol xxx
I know. I miss smoking, but I have spend to much time rying to get my meds payed for and I cant keep smoking knowing that it doesnt let the drugs to work right.
Tez_20 said:
Hi Sunshine,
With all these things that make Lupus worse...it's like every enjoy you like as to be took away from you, well i know for one thing i need my fags. xxx
sunshinespraypaint said:Sweety, your questions are always welcome. I dont know if caffeine makes your symptoms worst. I do know that it keeps your body from absorbing iron. So since a lot of us have anemia I just cut out caffeine
It's such a shame in a way...i know it's helping the meds as your working hard with that but when your at your lowest i find a fag don't half help. xxx
sunshinespraypaint said:
I know. I miss smoking, but I have spend to much time rying to get my meds payed for and I cant keep smoking knowing that it doesnt let the drugs to work right.
Tez_20 said:Hi Sunshine,
With all these things that make Lupus worse...it's like every enjoy you like as to be took away from you, well i know for one thing i need my fags. xxx
sunshinespraypaint said:Sweety, your questions are always welcome. I dont know if caffeine makes your symptoms worst. I do know that it keeps your body from absorbing iron. So since a lot of us have anemia I just cut out caffeine
Hi Tiffany,
I stick to the decaf now or 1/2 caff for coffee, but I'll only have 1 or 2 cups with the 1/2 caff and then go back to the decaf. My doctor does give me some emergency migraine medication that has not only a strong sedative, but also some caffeine in it that I take when all else fails for migraines. It is my last shot before I go to the ER.
I have some heart involvement with my Lupus and also a rare arrhythmia that speeds my pulse up to 280+ with an irregular beat and palpitations while I am just sitting still then also drops my already low blood pressure. It can do this every 15 minutes or so. I have to be very careful with caffeine because of the Lupus and my heart. My Rheumy and my EP Cardiologist agreed together on the medication with the sedative and the caffeine together only because migraines tend to set off the arrhythmia worse. They want me to be knocked out during those. Usually it is the ER anyway.
So, without knowing everything about what all is going on with you - you may want to skip caffeine and especially those Energy drinks which I think have other stimulants in them besides caffeine? My boys drink them too!
Hate to take something else away . . . . :(
Draginfli
Before I was diagnosed, I would rely on energy drinks and caffeine too. They really didn’t help much. Drinks with caffeine can bother your kidneys and bladder, so I try my best to stay away from that stuff. You might be anemic, as most people with Lupus are. I had very low iron levels by the time I was diagnosed. So I take iron twice a day as my doctor prescribed. You may have a vitamin or iron deficiency that’s zapping your energy, or maybe you need to slow down a little. Caffeine does cause palpitations, and I had to stop drinking Pepsi after I developed an abnormal heart rhythm due to the palpitations. Luckily, once I started on Plaquenil, and ditched the Pepsi, they have stopped so far.
Hello Risa,
Your totally right where energy drinks and caffeing are concerned and they do bother your kidneys and bladder....drinking tea constantley does'nt help me but suffering with dryness off the sjogrens besides meds drives me to drink....my hubby buys those herbel tea's yet i can't seem to get into them and i don't like fizzy drinks or water, so i'm in a losing battle alone.
Yes i'm an anaemic also and take folic acid besides b12 jabs to keep mine right.
I had an abonoraml heart rythem in my early 30s and the doctor thought about hear tablets then left it hoping it would correct itself but never been tested since.
You've pointed some good issues out here thankyou but plaquenil is an excellent drug i do know that.
Love Terri xxx
RisaRae said:
Before I was diagnosed, I would rely on energy drinks and caffeine too. They really didn't help much. Drinks with caffeine can bother your kidneys and bladder, so I try my best to stay away from that stuff. You might be anemic, as most people with Lupus are. I had very low iron levels by the time I was diagnosed. So I take iron twice a day as my doctor prescribed. You may have a vitamin or iron deficiency that's zapping your energy, or maybe you need to slow down a little. Caffeine does cause palpitations, and I had to stop drinking Pepsi after I developed an abnormal heart rhythm due to the palpitations. Luckily, once I started on Plaquenil, and ditched the Pepsi, they have stopped so far.
I have been cutting down on the energy drinks! I have noticed that they make my chest hurt when I drink them. And I don’t feel well. I just barely noticed it. But sometimes my chest randomly hurts. So I’m thinking it’s time to quit drinking them!
Hi Tiffany,
Nice to hear your looking at alot of issues with more positiveness because your helping yourself and like i said on one of your other posts recognizing things which irritate your system more is all the better and try and knock them on the head...i bet your thinking besides other's listen to the preacher and i know i have things i should'nt but after years of one thing or another my mentally as got where i live for today but as long as i can help member's young like yourself and other's who want help also besides a better quality of life, my full support will always be there.
Love you loads mate xxxx
Tiffany89 said:
I have been cutting down on the energy drinks! I have noticed that they make my chest hurt when I drink them. And I don't feel well. I just barely noticed it. But sometimes my chest randomly hurts. So I'm thinking it's time to quit drinking them!
I'm hoping I'm never told to give up my coffee. It is a special time for my hubby and me to start the day. He always makes it and brings it to me in my "chair." Before I have coffee, I usually feel awful...drink my coffee, visit, talk about the day....And I am ready to face the day! Please don't take my coffee away!
Lol faye,
Now me it's my Tea but for ste it's coffee like yourself and your hubby, he believes it bring him round...i don;t know why but coffee gives me headaches yet i can drink a decaf cappacino and i'm fine.
(Nice bit of poetry on the end there mate) lol xxxx
Faye said:
I'm hoping I'm never told to give up my coffee. It is a special time for my hubby and me to start the day. He always makes it and brings it to me in my "chair." Before I have coffee, I usually feel awful...drink my coffee, visit, talk about the day....And I am ready to face the day! Please don't take my coffee away!
I let myself have one cup of "real" coffee in the morning and drink water the rest of the day. Lately I have been drinking lemonade and kool-aid a lot. I think the real issue with the caffeine is the kidneys so if you do drink regular coffee keep it limited and follow it with lots of water. Is it possible to take a 30 minute nap when you get home? I use to put something in the crock pot in the morning, come home take a 30 minute nap and then get up and eat supper. Its surprising what just 30 minutes will do for your energy levels. As a matter of fact since my exhaustion time was 3:00pm every day, I kept a travel alarm and often took a nap in my car for 30 minutes on my lunch hour too. Make sure your endocrinologist is checking your levels to make sure you are not also malnourished many women with lupus are and don't even know it. Good Luck. and Thanks for the posts.
Hi Tiff,
Caffeine, especially the high test ones with high sugar or fructose corn syrup will put a 'well' person through the zip/drag cycles. It's hard on you, if you cut the caffeine down, less in amount and less in frequency and you should see a big difference in how you feel.
Hope this helps you babe, I like tea, so I can do decaf most of the time, but on occassion, I have the full kick of the loose black tea that I love, with raw sugar, with or without milk, I love it, but can't drink it all of the time!
Hugs,
SK
Sigh… I’m the same way. I think I have a mental addiction to energy drinks, trying to convince myself they make me feel closer to “normal”. I have cut back on them, though.
It’s so difficult!
Hello SweetNovember,
I'm the same with my 12 jaffa's a day because i have low sugar when i've eaten them i feel like i've had a boost then not long after i'm back to square one....really it's a mental obsession with alot of us....it's the same with me and my fags i know it's all in the mind, yet when i light one i feel relaxed.
Your so right as well....it is difficult. xxx
SweetNovember said:
*Sigh.........* I'm the same way. I think I have a mental addiction to energy drinks, trying to convince myself they make me feel closer to "normal". I have cut back on them, though.
It's so difficult!
Hi,
I just wanted to clarify-have you been to the ER because of your migraines? I get them bad, and before I knew I had Lupus I had a terrible one that wouldn't respond to anything (i didn't have any migraine meds or anything stronger than Excedrin). I couldn't look at a TV, read a book, sleep or do anything so I finally went to the ER. I felt silly, but in retrospect I really had something going on there! I just remember I kept second guessing myself cause I had to wait from 8 pm til 2 am to get out of there before they shot me up with drugs and sent me home.
Draginfli said:
Hi Tiffany,
I stick to the decaf now or 1/2 caff for coffee, but I'll only have 1 or 2 cups with the 1/2 caff and then go back to the decaf. My doctor does give me some emergency migraine medication that has not only a strong sedative, but also some caffeine in it that I take when all else fails for migraines. It is my last shot before I go to the ER.
I have some heart involvement with my Lupus and also a rare arrhythmia that speeds my pulse up to 280+ with an irregular beat and palpitations while I am just sitting still then also drops my already low blood pressure. It can do this every 15 minutes or so. I have to be very careful with caffeine because of the Lupus and my heart. My Rheumy and my EP Cardiologist agreed together on the medication with the sedative and the caffeine together only because migraines tend to set off the arrhythmia worse. They want me to be knocked out during those. Usually it is the ER anyway.
So, without knowing everything about what all is going on with you - you may want to skip caffeine and especially those Energy drinks which I think have other stimulants in them besides caffeine? My boys drink them too!
Hate to take something else away . . . . :(
Draginfli