What's the word on coffee?

[MajorSky1]

I'm trying to figure out if my latest pain/anxiety flare up is from starting up coffee for a few days a couple weeks ago.
Two weeks ago on a Wednesday I started drinking coffee again, and had a cup of decaf. Felt pretty much fine the next day so I did it again on Thursday.
Friday, I decided to try half-caf, and didn't seem to have any problem. So, Saturday I had another half-calf, and wasn't planning on taking the caffeine any higher than that for a long time.
I can't remember if I had a cup Sunday morning, but Sunday I woke up feeling like crap - anxiety upon waking, and some of my tailbone area pain seemed more intense. I had had some Chinese food the night before, which I know has a little MSG in it, but usually it seems to make me feel better the next day.

I'm just trying to find out if coffee - either decaf or regular - are NOT a good thing to drink until this condition has been gone for a while.
I've read some people drinking it and not having problems, and others can't.

It seems that caffeine might start neuronal windup, maybe not right away, but after a few days as the caffeine gets built up in your system. I've heard it takes something like 28 days to flush caffeine from your body. Since caffeine in a stimulant, seems like it might add to both anxiety and pain by putting the nervous system on high alert.

Now, when I tried it a couple weeks ago, I was feeling about 80% better, and at the time, it seemed like it was worth a try. Now that I've been back to about 20%, I'm not so sure. But I'm also not sure that coffee would be the (only) reason.

I absolutely love coffee, and I miss it terribly. But if I have to continue to give it up to get better because it affects CPPS negatively, then I will.
Actually, I haven't touched it since that trial a couple weeks ago anyway.

I would love to hear of anyone else's observations about it too. Does anyone have study info, or links about this?

Thanks!

[webslave]

Avoid caffeine. It's a no-no on the IC diet too (the IC Diet recommends avoiding coffees, regular & green teas, soda & diet soda, fruit juices, vitamin C (ascorbic acid) and vitamin B6, artificial sugars, chocolate).

[Caedar]

I think it really depends on the components of your CPPS. If it has an IC component that's not under control, then avoid. If it has a serious anxiety component, also avoid. However, the surest way to tell is to not drink any for about a month, get a baseline reading on your symptoms, then start again for a few days and evaluate. I find that coffee helps with my IBS component, so it's a net positive for me.

[MajorSky1]

OK, I gotcha.
I'll probably avoid it for a while because right now I'm in the middle of a long stint of horrible anxiety.

I was not diagnosed with IC, and I had a cystoscopy done - though he didn't do the potassium thing...

I don't have bladder pain really. Sometimes just a little urethral ache or burn after urination, but I'm guessing it's more of a muscular thing because as I worked out certain trigger points, it lessened. It's been almost gone, I only notice a faint burn if I gently squeeze the urethra at the bulbous urethra to about mid-shaft. It seems like the hydroxyzine has helped as well as quercetin.

When I tried the coffee a couple weeks ago, I didn't notice any increase in pain when urinating. In fact, the weeks before I even tried coffee again, I would occasionally get some ache or burn after voiding. But there didn't seem to be rhyme or reason to it that I could tell. I still have a little once in a while.

I suppose one has to think of all the angles concerning the stimulant aspect, the acidity aspect, possible effects on mast cells or il-8, etc.

I miss the caffeine buzz and how it would help get me going in the morning, and usually give me that "everything is good" feeling. Sometimes I wonder if my over the top anxiety combined with some depression is because I don't have that kickstart in the morning anymore.

Thanks for the help.

[SoothingSpaces]

I find that coffee does not bother me. I do not have burning on urination. I do feel that the chronic pain has just beaten the piss out of me -- and my energy is low -- I guess a touch of CFS but without flu like symptoms. Just tired of being in pain most of the time -- and miss my old life so badly. Feel such guilt and remorse too about what brought on this condition.

[MajorSky1]

I've had the chronic fatigue too. And this has beaten the piss out of me too. I guess I've improved, but it's such a slow, gradual process that it's hard to notice improvement. The anxiety is something I'm trying to get under control. I am not myself, that's for sure.
Like you, I miss my life, and my old self. I want it back. I've been reduced to avoiding activities and being social. Two weeks ago I felt good for almost a whole week, and I thought I was getting over the hump. Nope. Tidal wave of anxiety and mostly this tailbone b.s, with a few small other trigger points that wouldn't really be a big deal.

[SoothingSpaces]

Yes I have mostly withdrawn from the works. Bad. This thing has hijacked my soul. I use to be funny social affable -- but who wants to do anything social when your ass is ablaze with pain. Eventually though I am going to have to push myself and get out there. I just don't seem to be making a heck of a lot of progress on the pain front -- I tried to work out and it flared me.... Sucked

[MajorSky1]

I used to run about 4 times a week. Can't anymore. So instead I go for walks, usually two a day, about 3 miles each. It's enough to maintain, and counts as aerobic. I suppose we must find alternatives until things improve enough to get back at what we used to do.
It's a very hard pill to swallow that this lasts a long time. I still don't want to believe it. It's not natural to want to believe it.
I know exactly how you feel about wanting to get back out there. If you can, that's great. I've tried a few times, but haven't quite gotten back to the way it was. I can't drink alcohol, so that makes going out kind of pointless - not because I have to alcohol to have fun, but more because it just makes me feel limited along with the other things I can't do.
I'm dying to get back out there and gig, play shows. I started recording a new album, but I keep getting interrupted by this crap - the fatigue, or the anxiety, or a pain flare up. But it can be like quicksand - the more you struggle against it, the deeper it pulls you in.
Calming the nervous system is the best way, and that includes relaxation, meditation, or doing something that calms you down. It seems with this condition that the nervous system must go through a long period of calmness to heal somehow before a person can get back to "normal". I don't think there's a way around it.
I really wish there were more definitive studies done on this condition - but that's a whole other long, detailed conversation, maybe for another time.

[SoothingSpaces]

You have great insights.. I appreciate your thoughtfulness ... It is truly helpful...

[Caedar]

As an aside, I've found that biking doesn't flare me like running does. Something to try, MajorSky. Just be sure to get a noseless saddle so you aren't irritating your pudendal nerve.