Lets talk about caffeine

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Sera Smiles
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   Posted 11/29/2008 5:06 PM (GMT -7)   
OK so I am considering going back to regular coffee. I have been thinking about not being so strict with the decaf thing. I know what the spin docs say about caffeine; what I want to know is- what are your personal experiences with caffeine? Positive and negative comments please. I am not planning to OD on the stuff :) Just reconsidering my banishment of it. Thanks!

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   Posted 11/29/2008 5:31 PM (GMT -7)   
Interesting that you'd bring this topic up.  I haven't been able to tolerate caffeinated coffee for years now.  I find that I'm extremely sensitive to the buzz I get.  My heart beats even faster and harder than it usually does, and I feel really nuts!  I think my main issue is that I'm also on prednisone which gives me enough of a buzz to start with.  When I add anything with caffeine to the mixture I really feel it.  So I've banished caffeine from my diet.  I love the taste of coffee, so I enjoy a decaf every morning!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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   Posted 11/29/2008 6:55 PM (GMT -7)   
I find that coffee helps to relieve my pain.


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Date Joined Oct 2008
Total Posts : 86
   Posted 11/29/2008 7:09 PM (GMT -7)   

I used to drink two cups of coffee every day before work and then my doctor told  me that it kind of works against the meds I am taking. I had such a

hard time giving it up. I will tell you that I did cheat a little when I was visiting my mom and she had no decaf and I noticed an increase in pain within a 

couple of hours. As you probably know, everyone is different with their symptoms and what works for them and what makes them feel worse. Good 

luck with whatever you decide. Take care,  

Gentle Hugs,
Lyrica,Tramadol,Gabapentin,AmbienCR,Zonagran,Phenobarbital,Mirapex,Dextromethopan, Flexeril
Fish oil, Vitamin E, Baby ASA, Multi-Vitamin,Malic Acid/magnesium,

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   Posted 11/29/2008 7:26 PM (GMT -7)   
i used to love coffee, but now i find that it gives me that buzz that ginny talked about. i get terribly antsy and my heart goes wild and feel super keyed up and buzzy like i'd done drugs or something. it also gives me awful heartburn, so i've had to say so long to coffee.

i do miss it, especially on sunday mornings...:(

still, everyone is different, so it's quite possible that you'll go back to drinking it no problems. hopefully it works out for you! :)

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Date Joined Jul 2008
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   Posted 11/30/2008 12:02 AM (GMT -7)   


I drink caffeine when I have a migraine.  It works great.  I don't know if I have it every day.  I don't think so.  The pain does not seem to be related to caffeine.


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Date Joined Jun 2008
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   Posted 11/30/2008 12:44 AM (GMT -7)   
To drink or not to drink, that is the question!!!  
Wow, I have to have my caffeine or I can't motivate.  I find it actually helps me to stay awake with my CFS.  A cardiologist I went to a few months ago told me my heart was fine but the caffeine had to go.  He said it was the only problem I have, not Fibro & not CFS.  If I can get good sleep then my pain would go away & my memory would come back & fog would be gone & on & on.  I told him that I don't get a caffeine buzz but it keeps me functioning.  Anyway, I went off of it & boy was I miserable.  No withdrawal, no bad headache just total fatigue, in bed unable to function.  I stayed off it for 4 days with no improvement so I had a cup of coffee.  Within half an hour I was up & cleaning.  I did the dishes, did laundry, took a shower, pacing myself as I went.  A few hours later the caffeine was gone & I was back in bed miserable.  same the next day.  So, that's my story, I am back on the caffeine but I do limit myself.  We are all so different sometimes it's hard to believe we all have the same thing.  But we do & we have to take care of each other as best we can.  Hope you find the right answer for you.  Love & hugs, Denise

 I have:  Fibromyalgia, CFS, Hot-Oram Syndrome, nasal allergies, depression

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren.

Camden's Mom
New Member

Date Joined Nov 2008
Total Posts : 2
   Posted 11/30/2008 9:22 AM (GMT -7)   
I cut out most caffeine a few months ago. I was having panic attacks and anxiety and found that the coffee(and I was down to half a cup) made me extra jittery on work days. On weekends when I am more relaxed in general I may have a half cup - any more than that and I feel it. Funny - I used to drink 2 or 3 cups a day no problem.

getting by
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Date Joined Sep 2007
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   Posted 11/30/2008 10:52 AM (GMT -7)   
I mix my caffiene with decaf. Two scoops caffiene, one scoop decaf. I have been out of my decaf and noticed the difference, I am more tense and it really effects the pain that I have. It is a nervous stimulant so it will cause more pain. Try mixing, it keeps your blood pressure down and you still get a little energy from the caffiene part of it. And it still tastes good. Plus you can drink more if you want. Plus it doesn't bother your stomache like full caffienated coffee would.

Best wishes for a wonderful day.

Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

Regular Member

Date Joined Nov 2008
Total Posts : 159
   Posted 11/30/2008 12:54 PM (GMT -7)   
I have to severely limit it to my anxiety threshold. I average about 12 ounces a day when I get to work. I limit it to my anxiety threshold because I found out a couple of things about caffeine. Since Caffeine for some people causes more stress or Anxiety, which excites the pain pathways, it would be bad for some. However, caffeine also stimulates the adrenals to release endorphins which why it is a pain killer for people that can tolerate it. So if I am busy and working hard, my mind being occupied, I can tolerate allot of it and feel preaty much pain free. I am kicking out large amounts of my bodies own little opiod pain killers. If I am not busy, my mind is not occupied and I already feel stressed, I have to lay off the stuff.

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Date Joined Apr 2005
Total Posts : 17497
   Posted 11/30/2008 1:11 PM (GMT -7)   
I used to drink coffee but got shakey and couldn't sleep.  I switched to tea.  The caffeine in a cup of tea isn't as great as in a cup of coffee.  This will help wake me up but not play around with my nervous system.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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Date Joined Jun 2007
Total Posts : 906
   Posted 11/30/2008 2:07 PM (GMT -7)   
First I cut back to two cans of diet Cherry Coke a day. Then I cut back to one, most days. I really like the stuff, so it's hard to only have one. I try to drink it before noon. I do think this has helped me sleep better. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea

Regular Member

Date Joined Nov 2008
Total Posts : 159
   Posted 11/30/2008 6:15 PM (GMT -7)   
On the issue of possible caffeine symptoms. Does drinking coffee seem to temporarily increase the following.

Anyone have dizziness type issues, maybe from the medications. I am not sure its the meds because I used to get them taking no drugs. I am not even sure dizziness is the right word, but its something of a combination of brain fog, hard to focus and straight, long walking seems off. Only seems to happen walking a straight distance, or prolonged standing. If I am sitting or laying down, I don't get it, or if I am moving around inside with allot of posture changes or only standing up for a short time I don't get it.

Anyhow, I get this every morning, it usualy last for an hour or two, and the coffee seems to increase it for awhile. I can't tell if my balance centers are just messed up, or low blood flow to the brain, or neck problems or what it is. All I know is that after I drink the coffee, for a little while it gets worse. If I walk out of air conditioning into a hot day it instantly comes on. When I first started going to a massage therapist I would stagger to get my cloths back on and feel totaly off walking to my car and driving home. That part has calmed down quite a bit after months of massage work and a Chiropractor adjusting my neck every week for months.

Whatever it is, I have checked it against my blood pressure and blood sugar levels and found no correlation. The only constants I can find is that Caffeine makes it worse in the first couple of hours in the morning, or walking out into the heat, or walking a straight line distance, or standing allot.

I can use my Inverter when I am way off, turning myself upside down for a couple of minutes and it goes away for awhile, so I feel like I am either increasing blood flow to my brain, or I am resetting my balance centers, or its the traction on my neck.

If I had insurance I would be out getting a CT or MRI or both, but this has been going on for 13 years. The difference is that it used to go away for months at a time, and the last 4 years its been a daily constant. I am wondering if its the long term effect of the medications on the Central Nervous System and the coffee temporarily throws it off even more.

Regular Member

Date Joined Jun 2008
Total Posts : 289
   Posted 11/30/2008 7:02 PM (GMT -7)   
I found that since i cut my caffiene in take.. whether pop or tea.. ( i don't drink coffee) i feel much better... when i do have caffiene like the other i get very antsy and panicky .... i also find that coming off the buzz is worse than having it... so i try to avoid at all costs

but if you want to go back to it why not try half the caff coffee and work your way up .....

also try to stay away from aspertame and anyother artificial sweetner... they are very bad for fibros ... i use honey as much as possible if that is not possible i use estevia.. but it is expensive so i try to use it as little as possible
Diagnosed - fibromyalgia 2001
Meds effexor xr 300mg/day amitryptilene 10mg/day

Veteran Member

Date Joined Jun 2008
Total Posts : 1279
   Posted 12/1/2008 8:44 AM (GMT -7)   
Hi Sera-

I drink two cups of coffee in the morning and a half a cup after supper or I would not have the energy to do anything. If I drink any more than that my body gets the worse "buzzed" feeling.

Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
Zoloft, Tylenol 4000 mg., Darvocet  

Regular Member

Date Joined Apr 2008
Total Posts : 58
   Posted 12/1/2008 3:52 PM (GMT -7)   
I had to cut out caffiene a couple of years ago because it seemed to be the culprit that was causing the boils I kept getting. That was also about the time my fibro got really started, so I guess I couldn't really tell a difference

Veteran Member

Date Joined Oct 2005
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   Posted 12/1/2008 4:21 PM (GMT -7)   
I have 1 or 2 cups of coffee in the morning. Other than that, I usually don't consume any more caffeine during the day. My morning coffee gives me the "jolt" I need to get moving. Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

Regular Member

Date Joined Jul 2008
Total Posts : 408
   Posted 12/1/2008 5:06 PM (GMT -7)   

I don't know what I would do without my coffee.  I rely on it to get me moving in the morning.  I drink full caf in the early morning and then cut it to half caf late morning and early afternoon.  No coffee after 3 pm or I would be up all night.  I don't think there is any connection to my pain but if I don't have the caffeine I would not be funtioning and probably would trigger a migraine.  The rest of the day it's water, water, and more water.  I spend a lot of time in the bathroom, I guess you didn't need to hear that tongue .


New Member

Date Joined Dec 2008
Total Posts : 2
   Posted 12/15/2008 12:46 AM (GMT -7)   
Have any of you tried a new product called VIV? pronounced "vive" .....Its an all natural, caffeine-free alternative to coffee and caffeine/sugar based energy drinks. Schizandra berry is the primary ingredient. It works synergistically with several other adaptogenic botanicals to fight fatigue and combat stress. I've been using it for about a month and a half now, particularly during the afternoon hours when I sometimes get a little drowsy; and while it doesn't give me that "buzz" as coffee does, it does seem to make me more focused and restores my energy levels. For me, I just needed to get out of the sugar/caffeine cycle that never seems to provide me with any sustained energy.

Veteran Member

Date Joined Mar 2008
Total Posts : 637
   Posted 12/15/2008 5:41 AM (GMT -7)   
I only drink one cup of coffee in the morning because it keeps me up at night.I know caffeine helps my headaches but didn't know it helped other pains.
Lortab,ambien,elavil,reglan , neurontin,zyrtec and soma.
spinal conditions: Scolosis,herniated discs,spinal blockage,Spinal stenosis,bursitis ,Fibro,and arthritis

Veteran Member

Date Joined Mar 2005
Total Posts : 1512
   Posted 12/15/2008 7:21 AM (GMT -7)   
I used to have 1 caffeinated drink a day, until I started having tons of palpitations, so I quite drinking it (for now). It may not even have anything to do with the palps I'm having, but they scared me so much, I didn't want to make them worse.
I have ADD, and maybe that's why I tend to get "addicted" to it so easily. I can think soooooooooo much more clearly, and have soooooo much more energy, when I drink that one caffeinated drink. But....what's interesting, is that after about a month of doing this, then it starts making me really tired. Maybe its the sugar in Classic coke. But I can't drink Diet Coke, because without the sugar, it gives me really bad shakes and hypoglycemic symtpoms.
It does tend to make my muscles hurt a little more.
I feel like, if you only get good responses to it, 1-2 drinks a day isn't bad. But......for me....even if I only have one little drink of caffeine in the morning, it makes me wake up more at night. So be sure it doesn't affect your sleep.
Oh...and it does make me have worse urinary frequency and urgency.
When I go without it for awhile, and then have it, it must be how people feel on Cocaine!! It makes me soooooo happy. Too bad we can feel like that all the time, without any bad side-effects!

New Member

Date Joined Dec 2008
Total Posts : 2
   Posted 12/15/2008 11:56 PM (GMT -7)   
>>> for some it seems as if its a never ending cycle: caffeine to stay awake.....can't get any sleep because too much caffeine.....end up tired because of the lack of sleep.....drink caffeine again to stay awake.
   /   \
 ^     v
   \   /

Sera Smiles
Veteran Member

Date Joined Nov 2006
Total Posts : 671
   Posted 12/16/2008 2:44 AM (GMT -7)   
Wow! Thank you everyone for your input on this issue. I guess I shouldn't be surprised at the number of responses, I suppose since I banished coffee from my life I also forgot how much people either love it or despise it :) So- here's how my research shook out- I have a cup of regular about half an hour after I get up. I am weaning myself of off all sugar subs, and I don't need it in tea now, but it will take a while for my coffee to be sweet free. Thanks again for your info.
 "It's never too late to be who you might have been"  George Eliot
Dx FM- 2003
Rx Meds- Ultram, Buspar, Flexeril, Toprol, Cymbalta,
OTC meds- Benadryl, Claritin, Melatonin, Valerian, B Complex, Multi Vitamin

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