Hi all,
Still adjusting to all the new info I have been gathering and let me tell you there have been many ups and downs with each piece of the puzzle. Monday is my first appt after the diagnosis and that is making me a little nervous.
I have been so darn tired! This was a really busy week with this huge volunteer work for a hospital rummage sale (they raised $130,000 last year) 500 volunteers unload 8 - 18 wheelers and 6 other trucks - this thing is huge! Just a ton of fun and work, I tried to keep up but had to pace myself. Worked with an 89 year old lady on thursday and she really made me look bad, I'm 51 so you can see my struggle. Could this be the ss or lymes or both! Anyway my question is about caffeine. I tend to avoid it normally - does anyone find that it helps with the total tiredness? Sleeping problems are starting to creep up and I am afraid caffeine will only makes matters worse.
You all have been great and many of the tips have helped already.
Thanks
Sandy
Sandy,
I think you are getting a double whammy from the Lyme and Sjogren's combo! Who knows how much better you might be feeling if it was just one or the other! I will be interested to hearing from you about it down the road.
As for coffee: I drink 2 LARGE mugs every morning which gets me out of bed and into my clothes. The rest of the day I only drink water because I will not be able to sleep if I drink caffeine later in the day.
I don't even like the taste of coffee but really need it to get going in the morning.
Hi :)
I used to drink a lot of coffee but then during a fairly long period of time, when I'd been written off as a hypochondriac by conventional medicine, I went to a homeopath who said that I couldn't drink coffee or eat mints while taking homeopathic remdies. Oddly enough - she said tea was still OK because it gets metabolised in a different way. (Her words not mine)
I have 2 cups of coffee with a friend on a Saturday now and I can feel it giving me a buzz. I drink a load of tea every day. My urologist says I've got to drink less because it won't do anything for an irriatble bladder.
A mixture of thyroxine and Plaquenil have helped me with fatigue. Coffee just gives me an odd buzzing sensation and I don't know if it would keep me awake or not.
Take care - Scottie :)
Thanks so much for the thoughts. The kind of tired I'm feeling is like during pregnancy. I'm not a coffee drinker but have heard some good things about green tea. Sleeping is getting to be a problem. I get about 4- 5 hours per night even with Tylenol pm. Last night was my first night with a humidifier and it did help some but now I have a stuffy nose.
Thanks again
My pain levels are somewhat lower when I do not have caffeine. It take 3 to 6 weeks to get it out of my system.
Green tea is the only form of caffeine (actually it is called theine in tea) that I take anymore, both loose leaf form and the powdered form (matcha). It is much less disruptive to sleep than coffee, or black tea, which has been processed differently than green tea. However, it is still possible to drink too much too close to sleeping.
If you are going to drink green tea, I would recommend that you get it from a reputable shop and not just use the tea bags from the grocery store. Green tea has a wonderful fresh flavor and you might as well enjoy it when you drink it. I know some very good online sources and can give them to you if you PM me.
Genko
I agree about the Green Tea---I am especially fond of Gunpowder Green Tea. The leaves when dry are rolled up like tiny balls the color of gunpowder. Just one teaspoon makes a whole pot of tea---the leaves expand to an amazingly large size. It wakes me up like coffee used to---and gets me "going," if you get my meaning. I thinks it's a healthy drink.
C
my ENT told me to stay away from the caffeine because it only makes the symptoms worse. i asked about, specifically, green tea, and his response was, only if it is caffeine free. He said something about the caffeine working as a diuretic and making the body drier than it all ready is. i still have my Mountain Dew every once in a while, but I do seem to feel better without the caffeine.
Collie
Collie,
That makes such perfect sense....I'm sure your doctor is correct.
When I imagine my life without caffeine I just want to shoot myself!
Probably this is one of the lessons God wants me to learn....sigh...
I have to jump in on the caffeine question. Speaking for myself, I am a coffee alcoholic. I can drink it any time day or night and still get a good night's sleep. It does help me to get through the day. In my humble opinion, caffeine, like any other drug can affect each person differently.
Years ago doctors were on the don't drink coffee band wagon. Now you will find doctors are starting to change their mind. Medical science has found that coffee can help people with asthma during an attack. Coffee also contains antioxidants. Now there is medical evedance that coffee can help prevent heart disease. Oops I see by Micky's hands it time for another cup of coffee. See y'all
Seeker
I have a cup of decaff in the morning made with milk as part of my breki, after that just drink water for the rest of the day. I try to avoid caffeine as it gives me the jitters, almost feels like anxiety, I don't think it would help with my fatigue at all - in fact probably make me feel worse over all !!
Quote from: sandramarie on October 18, 2008, 02:44:34 PM
Hi all,
Still adjusting to all the new info I have been gathering and let me tell you there have been many ups and downs with each piece of the puzzle. Monday is my first appt after the diagnosis and that is making me a little nervous.
I have been so darn tired! This was a really busy week with this huge volunteer work for a hospital rummage sale (they raised $130,000 last year) 500 volunteers unload 8 - 18 wheelers and 6 other trucks - this thing is huge! Just a ton of fun and work, I tried to keep up but had to pace myself. Worked with an 89 year old lady on thursday and she really made me look bad, I'm 51 so you can see my struggle. Could this be the ss or lymes or both! Anyway my question is about caffeine. I tend to avoid it normally - does anyone find that it helps with the total tiredness? Sleeping problems are starting to creep up and I am afraid caffeine will only makes matters worse.
You all have been great and many of the tips have helped already.
Thanks
Sandy
I'm a caffeine FIEND. I had actually stopped drinking any sort of caffeine for about 1-1/2 years, it helped, I wasn't so dried out. I didn't feel like the walking dead when I got out of bed in the morning, and I didn't sleep so restless at night. I also got better sleep. It took about a week before the headaches stopped, but I did feel a lot better w/out it. I didn't get as tired at night either. I got my energy from food rather than coffee/tea. That was part of the problem, I put on 10 pounds and went back to drinking coffee.
I still do my 10-12 cups of coffee before lunch, but at night, I stopped drinking iced tea and am now drinking ice water. I still am somewhat zombie like in the mornings, but not as bad. I think caffeine is an individual thing, you might want to either cut way down or cut it out and see how you feel.
Good luck!
Back away from my coffee and nobody will get hurt. :)
Dave,
You are so funny! I think we are going to get along just fine!
i AM A DIET COKE FIEND. Nix to coffee. I know I should not drink a half dozen cans a day. Lucy
I don't drink coffee or tea either....but my diet pepsi was ALWAYS my downfall....I drank (and still do) way too much every day....BUT I finally made the switch to caffeine free diet pepsi! Boy did I have the headaches for a while from caffeine withdrawal, but now that I'm used to it...it's much better!
Less caffeine sure does make a difference on my stomach problems as well. :)
LynnMarie
I hope you take extra calcium with the carbonated water in pepsi. For some reaosn carbonation removes calcium from the bones.
Denise