It's back..

[CppsDad]

Today has been THE worst day ever through my whole experiance of this CPPS.

I'm really sorry to hear this. I've had that day, and it wasn't fun. I'm glad you have a brother who understands. He sounds like a good person to have around. Reward him for his empathy; start recovering from this. Rather than spend all week telling him how bad you feel, tell him the things are you going to START doing to get better. I think that's his goal to; to help you start recovering.

Tension, anxiety, stress, all play a HUGE part in CPPS. I would doubt if they were the sole cause of your pain, as they play more of an additive effect than a causal effect. When this is the case, removing them can help your conditon, but only working on the physical stuff can you get back to square 1. At this point, keeping the muscles from becoming messed up again is key, and this involves a lot of attention paid to your pelvic region to keep its tension level low. I'm sure a week away in a summer house will help you a lot. If anything, perhaps it will rejuvinate your energy level and motivate you to start recovering from this. It can also give you added perspective on things.

I started taking my Cipro today, and antiinflammatories AND painkillers, 8 pills aday, which isn't really that nice.

This is going to be temporary. You won't need this forever.

Does anyone know if Cipro can make it feel like you have to pee more often or if it can cause burning urination?

Cipro is a rough drug for many of us. I haven't had your reaction to it, but I don't take it due to other side effects.

Also, coke and other soft drinks, are they okay to have? I know I had them through this whole year without any discomfort or pains really, I even had alcohol and coffee.

The only reason I cut out caffeine was because of stress and anxiety. I am now down to probably 1 can of caffeinated soda a day (I drink mostly non-caffeintated soda now). My anxiety level has gotten better, which probably helps with the tension too. In your case, I think the worst part about caffeine would be the diahretic effects; 1 can can make me pee 3 times in an hour.

Which stretches are good? I know a lot of basic ones I use at basketball can I use them or does it need to be special ones? Or can I use the ones Id normally use for my lower back/abdomen tighs and groin?

The stretches that help for this are all in the pelvic region. Squats with your ankles far apart, stretches face down with your kneeds apart, cobra stretches, stretches on all fours while you push your butt to the floor with your knees slighly apart, legs up against the wall to lengthen hamstrings and lower back, etc... Many of these are yoga-type positions. I strongly suggest you order the "Headache In The Pelvis" book (3rd edition just out), or at least check it out in a book store; it has diagrams of stretches. And even then, I improvise a lot to get to certain areas. I also spend a lot of time working on my abdominals and groing and perineum with a Theracane; this is key to reducing my pain these days in addition to the internal work.

Like I said in my prior post, I've had days from hell with this. And my pain level is still not nearly as low as I'd like. But after only 3 months, my pain level reduced to the point where I could live with it as is for the rest of my life. Here at 6 months the pain level isn't much better than it was at 3 months, but still, I could live with it as is if I had to. It's a start. And it motivates me to recover completely. So don't look at this as "I have to feel better by tomorrow". Start the work now. And hopefully in 3 months you will have made SOME progress, enough to live your life.

And don't wait too long for the pain to cease before starting your recovery. That could be weeks or months. At the very least, start the daily stretching and relaxation and self massage. Add in the PT when you feel comfortable; but my feeling about this was that if I was in a lot of pain, it didn't matter if my PT did work on me. As long as I was flaring up, it was better to just get it over with and start working things out.

[Concerned2]

Thank you for your long reply it means a lot.

I am going to go and I am going to try this weekend. My brother tells me he is sure it is going to feel better and I beleive him cause I want to and need to.

This is the first time in my whole chronic prostatitis / chronic pelvic pain syndrome hitory I havent been able to sleep at all. Usually I am out and I sleep for 8 straight hours today though, I have been up for 40 hours and I am beat but can't sleep..

It is a pain there is this ONE spot in the penis where it feels obstructed and it hurts mostly AFTER I urinate. I told docs this and there is no obstruction there, possibly I was told, the urinary sphincter is irritated.

I had tried watching tv and done stuff right now for 3 hours without peeing and then I had to go really bad and then BOW it started hurting again and the discomfrt is the worst.

I am quite hopefull though that the worst part of this flare up won't stay that it will go down to "normal" manageble levels really soon..

I have lived with quite a bit of pain the past year I hve never been fully painfree really, but I can take that I have had one hell of a year.
Now when this goes again I will start working on the problem, starting today with stretches.

It was almost like you could read my mind when you said I shouldnt complain how bad it is this weekend, cause that is how it feels, you just want to tell everyoine you are hurting.

Bah, my problems are only confined to the urethera and penis thats it, my perineum and testies doesnt bother me at all today or yester day..so hopefully this is passing, since it is the urinary symptoms I can't take.

If it stays like this I am toast, but it wopnt this is the PEAK. When I first got this before, it peaked for a week or two then it stayed but it was manageble with some expections.

Its just so hard when I feel like there is razorblades in my urethera that I want to "pee out" if that makes sens, even when I dont have to pee, bladder wise...but if I dont pee for a while it eases up a tiny bit.
Last night though I was in bed and I was running up every 10 minutes or so must have been up 20+ times and that wasn't fun..

I should try going to the summer house and have as much fun as possible.
Also, I am scared of the Cipro I was on it last time and it gave me a bladder burning that stayed for a good while and the pains in the ureteha I have now actually started 4 hours after taking the first Cipro..coincidence? I dont know the pains didn't go away when I was off it for 3 days so.

[CppsDad]

Regarding "not complaining over the weekend"; I think it is VERY productive to let your feelings out to a willing listener. If it helps you, tell him how much pain you are in. BUT, like I said, spend some time thinking of how to motivate yourself to start your therapeutic routine.

As far as waiting until the pain dies down and goes away, I can think of one reason to NOT wait: When you are in pain, you have a point of reference to help your PT. This is the time you might be able to detect referred pain even more. You'll know exactly what spot is causing your pain when you press on it. In between flare ups, however, pressing on the same spot may not be as noticeable. Perhaps you'll be lucky, and the spot that is hurting you the worst can be helped with PT in a particular muscle. It is possible, although not always common, that a single PT session can alleviate pain to a single trigger area.

Hang in there. It sounds like your pain is at the peak. If you can make it through this, you can make it through the worst.

Have you tried Xanax or Valium or other muscle/anxiety medications? They can sometimes relax the muscles that are spasming and hurting you. They helped me a lot.

Michael

[Concerned2]

Thank you.

Today is the worst I could imagine.
There is a extremely bad burning sensation in the whole urethera it feels like I have to go all the time.
I can't sleep its ridiculous its been 50 hours.

I can't think of even leaving the house thats how bad it is now it had better EASE up, not go away but ease up so I can sleep at least thats all I ask for and so I can go to the summer house with my brother.

I thought I had it bad before, hah...it was nothing compared to this.

I am sure it will pass I have to be...it just scared me when it burns so damn bad, it feels like a razor and major discomfort.

I did lots of stretches today and now it burns a tiny bit in the perineum but I take that as a good sign.

I was given muslce relaxants before I believe, and also anti depressants in low doses. amo triptalyne something it was called I dont think it really did anything for me though.

As long as this goes away, the burning discomfort I can manage as it stands now, I can't I am a nervous wreck and not even my wife can make me smile or see the light I just want to sleep and then wake up and not feel the burning as bad anymore..

[Richie]

Carbonated beverages set me off.

[Concerned2]

They did?
I dont think that is my case I had tones and tones of them during the past year...I dont htink so anyway

[GARYS]

If you have a doctor you can talk to, try to get your hands on some valium, ultram and PYRIDUUM PLUS (for the burning). I know exactly what you are talking about, except I have had it a lot longer!! I have some other pains that I can handle, but that damn burning is the absolute worst!!! Mine has been so bad before that I would almost black out everytime I had to use the bathroom. Unless you have this type of urethral burning nobody could even begin to imagine how horrible it is. I've read all the stories people complain about, but nothing could even compare to the urethral burning!!!!!!! But all you can do is be strong, and tell your wife to just keep telling you it will get better (it will). When you urinate really focus on relaxing, and when your finished try not to clench up your sphincter, try to let it stay relaxed. Talking about the burning I'm headed up to my pill colection to take a Pyridium plus pill ( it does help atleast a little. It might help you a lot. Take some deep abdominal breaths and try to stay relaxed. Easier said than done.

[MastCells]

Concerned,

Antibiotics can cause a major flare-up in my symptoms. If you do not suffer from chronic urinary tract infections (bacteria found in URINE) which may suggest chronic bacterial prostatitis, then why are you taking antibiotics? BTW, going on a vacation with your brother sounds like a good idea. A muscle relaxant such as Valium (diazepam) can help you if you take it once and a while only when needed and preferably for no longer than 3 days in a row. Be sure to follow Mike's advice!

[Concerned2]

Thank you
Today I got to sleep for 8 hours at least but its still just so bad I hate getting up in the morning its so blah..

I have been on pyrydium before it didn't really help me unfortunately.
Yes I am scared of taking antibiotics I really am I dont like it and I am scared they will keep me getting worse and worse like they have been before.
This was bad but manageble until I started taking those damn things again.

The doctor reassured me it can't be that...
Last time I had it it didn't hurt when I peed it just was discomforty and I didn't get coplete releif now though it hurts and hurts after I do pee...

I dont know what to do anymore I had jujst fought this off AGAIN.

[gil_galad]

From what I have read, I can see that you are way in your head
with stress and fear.
Do something about it.
The idea of using Valium is good.When it works and your symptoms
reduse you will be able to find the strength you to need to fight it off
AGAIN.

[MastCells]

She gave me Cipro for 6 weeks, whopdedoo.
I took it for two days and I feel worse then I did before taking them..

I think I should just go off them...

If I were you, I would stop taking the Cipro. Long courses of quinolones can be deleterious to your health. You have a chronic nonbacterial condition that is worsened by the courses of antibotics you have been prescribed. Numerous Swedish patients have told me how prevalent antibiotic abuse is in Sweden; it's even worse in Sweden than it is in the US. The cocky doctor who prescribed you SIX WEEKS MORE of antibiotics is not even a urologist, and she is certainly no expert in prostatitis. IMO, Valium and other benzodiazepines are the most useful medications for treating CPPS.

[Concerned2]

She gave me Cipro for 6 weeks, whopdedoo.
I took it for two days and I feel worse then I did before taking them..

I think I should just go off them...

If I were you, I would stop taking the Cipro. Long courses of quinolones can be deleterious to your health. You have a chronic nonbacterial condition that is worsened by the courses of antibotics you have been prescribed. Numerous Swedish patients have told me how prevalent antibiotic abuse is in Sweden; it's even worse in Sweden than it is in the US. The cocky doctor who prescribed you SIX WEEKS MORE of antibiotics is not even a urologist, and she is certainly no expert in prostatitis. IMO, Valium and other benzodiazepines are the most useful medications for treating CPPS.

Thank you!
Yes it is annoying, I was living in Canada the first time I got this and I was treated with antibiotics to no avai lthere for weeks and week. Cipro did not help that time.

Yes the doctor gave me 3 weeks of Cipro and more I can get if it improves, this was before she had even cultured my urine, right off the bat.
All urologists have given me antibitoics and antiinflammatories save one who was the one who sent me to biofeedback and told me this WILL go down it will take a little time but it will go down, he told me no more antibiotics at all. He said, go on try and enjoy yourself, this will pass just try to do things.

DONT listen to old urologist and doctors who just tell you "old myths" about this "Prostatits" condition. I think you have tention in your pelvic floor caused by stress and it will ease up by itself but you should do biofeedback and pt just to make it go quicker. You will be just fine. Drink and eat whatever you want, relax and do try to laugh. You are a young man who is HEALTHY whether you like to believe it or not and youll be alright, trust me.

He was right, I was almost all better after just a month.

I still have NO faith in doctors after what I was put through.
I want to beat this by myself, I am even mad at myself for going to this GP this time, I am sure I would be better if I hadnt gone, better then this anyway.
The only good thing is I got checked, the urine I mean and it was clear.

This doctor was like, Hmmm okay I can't see how anyone can say this is not a prostate inflammation. I am 99.9% sure of it, your age and everything, it adds up and its very common.
Then she said, I was taught to give 3 weeks of Cipro and if it didn't work let it selfheal. If it did, then the patient can get 3 more weeks.

The she said I am going to squeeze your prostate to make sure bacteria might get out in the urine sample.
TWO seconds it took then she was like there..all done
I asked how her it felt, and shes like..uh..it feels normal..not painful.
The Uros who checked me where digging around for minutes, pretty roughly just to make sure and not once did it hurt.

Anyway, this was prolly number 15 that was clear, urine sample that is.
can't say I was surprised.
ALSO and this makes me mad, they tested me for chlamydia. THEY have tested me 10 times or more and I know I do not have it, and tell them that but no, they just HAVE to check when that is not the case.

I called this doc a few days ago and said I am way worse, and she is like, I will talk to a Urologists and a pain expert.

She called back and had faxed in antiiflammatories and painkillers.
I just take the antiinflammatories. She said stay on the Cipro, thats what the Uro told her.

I am just tired and fed up with this crap. My wife doesnt want me to take the Cipro I can tell but she doesnt want to say definatley "no" since the doc did give htem to me.

Yes antibiotic is overused here for certain I can vouch for that.
I had a little ear ache last year and its like, oh we will give you antibiotics for 10 days just to make sure.


I am certain this is caused by stress. That is the sole factor I am sure, I had never been more stressed in my life then when I got it the first time.

I had all the signs too, the muscle spasm in my throat. I had a tention headeache that lasted for a month. It came again and lasted for 2 months.

Followed by this.

I think, this is my personal opinion, that I need to start focusing on relaxing, trying to not think about it whenever I can and it will ease up like last time, it only took 3 weeks.
I will do my stretches and everything, and I will see my PT as soon as its a tiny bit better so I can go there without feeling this burning, I am sure that will go down soon enough.

I just feel a little better this time knowing that it does go. Last time I thought I would be like that my whole life, now I know it goes.
I also KNOW I have been throughly checked.
Heres a short bried of my med history

1. Cipro 4 weeks
2. Levaquin 3 weeks.
2. Flagyl 2 weeks.
3. Amo- triptalyne (sp)
4. Indomethacin
5. Celebrex
6. Penicilin
7. Cystoscopy, all clear bladder looked good no obstruction just sore urinary sphicnter
8. Biofeedback, first seasion spasming, 2nd one weak muscles like a new mother, then okay resluts.
9. Cystometry, bladder holds 5 deciliters before pain.
10. Uto-PT, tense muscles in the pelvic floor, internal streches 2 times a week a week.
11. Nitric Oxide test, no signs of inflammatory condition in my urinary tracts.
12. 10 prostate exams by Uros, everyone said it was not tender at all, nor swollen. It was normal.
13. So many urine tests its ridiculous. Prostatic massage then urine test Nothing. Uro tried to massage out prostate fluids, NON came out, he said lots of patients had a teaspoon come out.
Chlamydia, gonnorea nothing. HIV(!!!???). Negative.
14. Headdoctor of the STD clinic at the university hostpital examined me PERONSALLY after all these troubles. Looked in my urethra. Took a uretheral swab he was examining closely himself under a microscope when I was in the room right after he took it. No white bloodcells, blood or anything.
His opinion was, you have to start looking at reasons such as stress and tension. Everything else has been ruled out. Its unfortunate but there is nothing wrong, I belevie it is tension and stress. How it can create these problems you are thinking? Stress can kill a person.

I was getting "managble after just 7 weeks. It wasn't the pills or anyhing I am sure.
It was bad but manageble.
Then it eased up more and more. Finally it was so good (after 2 months or so) that I could live almost fully. Then the past year I have been cured almost for the moment.
Came back for 3 weeks it killed me, but I tried to calm down and it was gone again for 2 weeks, until now when it came back again and its been 10 days. I am sure if I relax it will go, its just that it burns in the urethera this time its not only discomfort..but wel..it WILL go.

[Concerned2]

Hey again little update
Had a friend over today it was unbearable in the morning but I was doing a bit better for maybe 5 hours, the leaky discomforty feeling was much better I managed to take a long walk and joke around, but then it came back again a few hours later when I had to pee, and when I did pee it got back to what its been...however during those hours I did better then I have in over a week..so..its a little bit possitive isn't it..?

The doc I trusted said it will fluctuate before it goes away completely..and today, that is what it did...i was doing way better not goo dbut managing...
It will go I am sure hopefuly soon enough cause this discomfort is so damn bad..

Keeping at it...trying to anyway.....it wil ease up today when I felt better I got the "I am goin gto be okay!" attutide and feelings again..then when it came back, I am alittle down..but it will be just fine and managble right away...cause today for a while it moved in the right direction and maybe tomorow it will be a step closer.
My wife is making me do streches in the monring and before I go to bed I did then yesterday and today this morning..

[MastCells]

I also KNOW I have been throughly checked.
Heres a short bried of my med history

1. Cipro 4 weeks
2. Levaquin 3 weeks.
2. Flagyl 2 weeks.
3. Amo- triptalyne (sp)
4. Indomethacin
5. Celebrex
6. Penicilin
7. Cystoscopy, all clear bladder looked good no obstruction just sore urinary sphicnter
8. Biofeedback, first seasion spasming, 2nd one weak muscles like a new mother, then okay resluts.
9. Cystometry, bladder holds 5 deciliters before pain.
10. Uto-PT, tense muscles in the pelvic floor, internal streches 2 times a week a week.
11. Nitric Oxide test, no signs of inflammatory condition in my urinary tracts.
12. 10 prostate exams by Uros, everyone said it was not tender at all, nor swollen. It was normal.
13. So many urine tests its ridiculous. Prostatic massage then urine test Nothing. Uro tried to massage out prostate fluids, NON came out, he said lots of patients had a teaspoon come out.
Chlamydia, gonnorea nothing. HIV(!!!???). Negative.
14. Headdoctor of the STD clinic at the university hostpital examined me PERONSALLY after all these troubles. Looked in my urethra. Took a uretheral swab he was examining closely himself under a microscope when I was in the room right after he took it. No white bloodcells, blood or anything. His opinion was, you have to start looking at reasons such as stress and tension.

You have been through all that, and now you're back to taking antibiotics prescribed by some GP, even though doing so is increasing your urethral burning??? For goodness sake, even the head doctor of an infectious disease clinic is telling you that you have no infection and should be pursuing treatment for stress and muscle tension! If you keep abusing potentially dangerous antibiotics, prostatitis will be the least of your problems. Read through the following forum: http://www.fqresearch.org/ .

Our forum was not created for discussion of antibiotics or infections, and you seem to suspect secretly that you are suffering from an active bacterial infection, despite the enormous amount of evidence suggesting that you have no infection. Please reread the replies the other members posted to your questions in this thread and take what they have to say more seriously. Sorry if this post seems a bit harsh, but it's tough love. I want you to get better!

[Concerned2]

Hey again.

No I dont suspect I have a bacterial infection, its just in the back of my mind you know but I dont really think so, and I didn't think so til this doc put me on antibiotics again.

It is frustrating but I am quite sure its related to my muscles.
I think by trying not to think about it as mch as I can and relaxing to my fullest will ease it..and then with further PT treatment it will go away completely.
I am certain this "flare up" will ease. Yesterday I had a few good hours, "good" I should say, since I was managing anyway.

It will be better it mght take a while longer but it will be back to managble soon I am suire, then I have to work VERY hard on the rest for a long time I am sure and I will, as soon as the worse cools down. It always has before though..

The only thing I bring up the antibiotics is beacause they scare me, I was through all of it before and it didn't do a athing as far as I can remember.
Then they gave it to me with no proof of bacteria and it just made me quite depressed, it felt like square one all over again.

I think tomorrow I will give my doctor a ring and tell her again how I feel about this.
I dont thikn antibiotics should be given as a precaution.

i trymy best to get by and it will ease up...
Somedays hurt more then others, yesterday it was mostly discomfort again and today it a little more pain but it fluctuates...which is a good thing.

Thank you for caring I didn't think your post was harsh at all.
I think I needed it, becasue you know it kinda got hammered into my head by the GP "what if its different THIS time" , since all of that was over a year ago.
When I cool down and thikn of it, I can see that its silly.

My wife really never wanted me to get on the Cipro again either.

I am taking the antiinflammatories though theyt can't really hurt me can they?

thank you