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Fibro/Caffeine does it affect the Fibro??????

My doctor tells me that caffeine make the Fibromyalgia worse. I was just wondering if any of you have notice a problem with it. I don't really notice it it hurts everyday anyway?? I started my Lymphatic massages this week it hurts but it hurts so good. I slept really good for 3 nights plus I have been applying heat every night. But it has been 4 days now and everything is tightening back up. I go back next week. First I get in the Sauna then the massage she says she will be able to get rid of the knots I hope so. I am new to this site and look forward to you people who have more experience with this and all the good advice I get from ya"ll. I have had this problem for about 5 year but didn't know what was wrong until now.
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Avatar universal
ive had fib 4 15 years it ***** ,bad i have it from head 2 toe,and verry bad circulation,i miss drinking caffien free sodas over its still caffine,i hate this,i read upon it that caffine gows 2 the nearves witch mine are verry bad i have allthe 18 triger piont,i do my best i get bad sore thought over it,ive lost waight over it in 4ft 9 ,what ever i do stillpain,
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Avatar universal
ive had fib 4 15 years it ***** ,bad i have it from head 2 toe,and verry bad circulation,i miss drinking caffien free sodas over its still caffine,i hate this,i read upon it that caffine gows 2 the nearves witch mine are verry bad i have allthe 18 triger piont,i do my best i get bad sore thought over it,ive lost waight over it in 4ft 9 ,what ever i do stillpain,
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Avatar universal
I have had the fibro thing for over 30 years know and little by little it has consumed every inch of my body with pain. I recently heard that caffeine may have an effect on the condition.  Well, I was just desperate enough to try going off it.  I have gone from 5 cups of some sort of caffeine a day to half a cup in this past week.  There is no doubt, I am in way less pain, not to mention my restless legs are better and I'm sleeping better at night..  This has done more for me the special diets, exercise and pain killers.  I have hope again, and more people need to know about this.  Spread the word and do it quickly before someone does something stupid out there.
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Avatar universal
I was a huge caffeine addict and kept drinking more and more coffee and iced tea to get through the daytime fatigue. I cut it out cold turkey when I did more research on caffeine and fibro (I was only diagnosed in April 2011). I was obviously miserable for several days, as caffeine has a half-life. It takes time to completely get out of your system, which is why there are withdrawal symptoms. You literally have to detox. Once it was completely out of my system, I felt so much better in terms of fatigue! I then switched to decaf coffee and immediately had fatigue issues again. I researched and discovered that decaf coffee still has caffeine. If it doesn't say "caffeine free" it refers to a process that removes *most* of the caffeine, but not all. Apparently I'm very sensitive to its effects and now don't even drink the decaf or green tea for the same reason. It just has too much for me. We drink roasted chicory now, which has an amazingly rich flavor. It's more satisfying to me than a cup of decaf. I highly recommend that you try a cup of chicory! You can brew it in the coffee maker just like ground coffee. From what I understand, and it's different for everyone, the stimulant affects us differently than most people, and we have a more severe "crash" that leads to more caffeine consumption.
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Avatar universal
Caffeine is bad for IC too. I had to get off it and now drink peppermint tea.
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553995 tn?1332018840
sorry it took so long to get back.
I am going to look into the Agave claims. Maybe it is a certain brand. I have a friend that uses it because she has a serious diabetes problem and agave metabolizes slower.

Green tea does have caffiene but you can buy decaffeinated
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Avatar universal
did you know that the FDA has come out and said that Agave Nectar is not made from cactus it used to be but now they just use High Fructose sugar to make it and they label it as a natural sweetener when it is not. My sister in law sent me the article from the FDA clamming it is false advertising. I love Agave Nectar it is so good. So does all Green tea have caffeine in it?
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553995 tn?1332018840
Caffiene is just fine in moderation. Green tea is suggested for FM/CFS people because   its antioxidant.  
It is wise to set a time limit to our caffiene intake such as dinner time so we don't affect our sleep.
I have enough trouble with sleep and have daytime fatigue lately again, so I need caffiene. I have coffee in the morning and Ice tea from lunch on ending with iced green tea. I rationalize this as tapering off because the green tea is lower in caffiene lol.

We do have to watch our sweetners. People STAY AWAY from artificial sweetners!  It is toxic to Fibromyalgic muscles.

Agave Nectar (cactus juice) is so much like sugar. Then there is honey which I mix with a bit of water 8oz honey 2 oz. water and microwave 30 seconds in a glass jar, cover and shake. This makes the honey liquid and mixable in cold liquids like ice tea. It keeps forever in the refrigerator.
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Avatar universal
http://www.medhelp.org/posts/show/776657

I'm a coffee addict as well, but do drink decaf in the evenings.  Tea is just as bad as coffee (as far as caffeine).  Hard to give up I know, lol.

I have not had a check for anything other than parasites and routine thyroid (I'm already in menopause from a hysterectomy).  I don't think that the microorganisms/pathogens we have will be reflected in typical bloodwork...physicians don't do biological testing it seems.

The link above is from a Member who has visited one of the centers you speak of.  Hope this will help.
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Avatar universal
thanks guys for responding to my question I will just have to figure it out myself. I have cut back to 2 a day but I drink at least 2 to 3 glass of tea a day. I was doing the 1/2 cafe also but my doctor says it is worse for me because of all the chemicals they have to put in it to get rid of the caffeine so i drink reg coffee now. The 1st massage was wonderful she even unlock my shoulder and I slept so good for about 3days so I am going to give in another shot. Hey just a quick question have any of you had your hormones and adrenal looked at or been tested for parasite or viral infections they reason I'm asking is I am thinking about going to the hotze wellness clinic or maybe the hansa center. Just wondering if you guy have tried something like these?
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Avatar universal
I am a coffeeholic. I have about 8 cups a day. I cut myself back to two a day for months & I found absolutely no difference in any of my symptoms. So my opinion is it doesn't affect me in any way. I could drink a cup of coffee before going to bed and still fall asleep.
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Avatar universal
I just can't do without coffee. I am a lifetime addict and must have it. However, I have reduced my intake my cutting back to two cups a day and using the 50% coffee. I seem to do alright with that. Only on occaision if I'm out, I will order Sanka later in the day. Of course, if you can do without it, it's probably best. It can have a negative effect on us especially by increasing adrenaline, noradrenaline and some other neurotransmitters.

Don't forget that the colas contain caffeine as do some teas.

As far as your therapy goes, I think anything that might help and will not hurt you, is worth trying. I hope it works for you.
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Avatar universal
Caffeine is a stimulant, and any type of stimulant to the CNS isn't going to be good for those with FMS (as with FMS there tends to be some form of neuropathy involved).  

I think the sauna and massage is a good way to treat the symptoms if you can tolerate it.  Sometimes those with FMS can't tolerate the heat well (will set off a flare-up) and there are others who may not do well with a vigorous massage...but a light one would provide some relief.  A multiple approach to this illness is always the best way to go...treating the body, mind and spirit (relating to stressors).  It's more a matter of finding what is right for you.  

I hope you continue to do well with your treatments.  Take care.
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