6 years with CPPS

[European]

Carbonevo, thank you for your input. I don't think that the issue is entirely psychological, although there surely is heavy anxiety related background. It is a combination of physical damage (trigger point, neurogenic inflammation etc.) and the bad psychological copying with it. My right side is far worse than left side, my PT stated there is significantly lower mobility of right hip, in the initial phase I was on/off, pain was triggered mainly by ejaculation (a neuro-physical event) etc. I heard Alan Gordin and have read some Sarno's text but I don't believe that this is the only pattern. Most of all I have benefited from some PT session, not from CBT therapy, etc. Every case is different, I guess my case is a detrimental combination of musculoskeletal tenderness/problems and underlying anxiety related disorders.

[Chriss]

It is a combination of physical damage (trigger point, neurogenic inflammation etc.) and the bad psychological copying with it.

Psychological disorders (anxiety, depression, fear...) Can cause damage ( trigger point, spasms, specially inflammation )
So these to aspect you mentioned are the same.

[carbonevo]

As Chriss states euro. You can have those things but probably they are not the culprit. Look at people around you in the streets.. so many bad postures. So many disabled people, people on wheelchairs and so on and so on... yet no CPPS, no pudendal nerve entrapment.

My neurologist told me my pelvis is severely rotated and that its very likely the cause of my CPPS. I have forgotten how CPPS pain even felt. Can you imagine? I still have the rotated pelvis.. I have not done a single thing about it :D yet CPPS is gone... maybe it will return, don't know, don't much care..

I'm still living in Bratislava.. in case you wanted to meet up on kofola/beer and talk about our experiences I have absolutely no problem and would be really glad. When I was those dark days I was willing to try anything. Even the broccoli treatment

[European]

Carbonevo, thanks for encouraging words. I appreciate your insights and in many aspects you are probably right...but I still lean to the assertion, that this is a detrimental combination of local (thrashed muscles, neurogenic inflammation, trigger points..) and systemic (anxiety, upregulation of nervous system) disorder. Trigger points, feeling of constricted pelvis and shortened painful muscles are the fact in my case. So I am prone to say that Wise/Anderson are - in this field - closer to the truth than Sarno. Everybody is different. I would gladly accept your beer invitation, but in few days I am leaving for vacation, so probably after that. Wishing all the healthy days for you and everybody.

[European]

I am pretty miserable right now. I think that after that Dry Needling of sacral nerves in April, my pelvic nerves got more angry and I will not repeat that procedure. A lot of random tingling, burning in the legs, pelvis, thighs etc. Yesterday I did a lot of stretching and massaging my glutes with tennis ball. Today I feel more neuropathic pain in whole pelvis, especially in the right side. Webslave, if I might ask you, do you think that massaging the glutes with tennis ball might irritate pudendal nerve? There is a lot of muscles and ligaments in between, and pudendal nerve is pretty deep in buttock...but anyway...thank you..

[webslave]

No, I don't think so. A family member of mine has piriformis syndrome and the therapist puts an elbow into her buttock and leans on it with full weight. If anything was going to hurt the pudendal (and sciatic!) nerve, that would, but surprisingly it brings great relief instead.

[carbonevo]

Euro, enjoy your vacation mate, we can meet up whenever you get an opportunity, of course if interested. There's one thing I would like to suggest you: try to enjoy the vacation as much as you can and try to forget about the pain, completely ignore it (its been there for years, not giving a fk about it for few weeks won't worsen it). I know easier said than done, but give it a try.

Why I am telling you this; 2 occasions made my pain completely disappear:

1. a year back when I was travelling to Sweden, I went there by a bus and was really excited. I spent in the bus sitting like 20 hours total per trip. I even forgot I had any CPPS.. why this happened, no clue.. as soon as I returned to my stressful work, the pain returned.
2. two weeks ago, I went to High Tatras with my gf, I no more suffer with CPPS but my buttock/leg pain was really unpleasant (lots of stress lately due to changing jobs). As soon as I sat in my car and forgot about the toxic environment, the tightness completely went away.. by completely I mean not a twinge of pain. I drove like 7 hours per trip. The pain was gone my whole stay.. as soon as I returned to Bratislava, the tightness crept back in. Thankfully its nowhere awful and depressing as CPPS.

If you experience something similar and I really hope you do, then it might change you outlook on this ugly syndrome. Ezer from the pudendal forum reported the same experience btw. Best of luck euro ;)

[Chriss]

Hi European
Last week I was on the Antalya-Turkey Beach, it was so relaxing. Now I feel I'm better compared to two weeks ago. I'm agree with carbonevo. I believe that people like us cannot enjoy the life. Our mind programmed to continuously be in planning for life, be vigilant about the life, job, GF, ....

1. I do recommend you go to relaxation trip, go to beach. Give up the life, job, and stressful situation for one or two week.
2. Find the things that scare you, unexcavated, undetected, fear is the core of this condition. You should excavate your mind. You fear. Find the things that worry you. Job Stress, Family life, Money problem,... Whenever you find them, you will be fixed automatically during a period time based on the fluctuation graph that Mark stated before.
3. Just say thanks to the life. Its hard to explain. But being positive, and being thankful to life has remarkable effect on happiness and stress relieving. Be thankful from the life for whatever you have in life. There are lots of things to be happy in life. Find them and "dwell" on them.
4. As carvonevo said, you should experience the symptom release due to stress calming. When you experience it your brain finds the first spark of healing.

We will heal. I'm Sure. Don't worry.
Chriss

[European]

Thank you guys for encouraging words. 30th June I am leaving for 10 days to island of Paros, Greece. Greek islands were always a refugium for me where I left behind all the worries, stress, tensions...I believe that this will happen again. I remember, after the first attack of CPPS in June 2009, I was almost suicidal few days before vacation, hesitating whether I should enter the airplane or to go to emergency room. The flight was horrible, as well as the first day. Anxiety was skyrockeeting. Next day I woke up completely without pain. Nothing, absolutely nothing. We went to swim to Myrtos Beach on Cefalonia island. I was totally happy...in the autumn 2009 my CPPS crept back...silently, step for step. I still bear this day on Myrtos Beach in 2009 in my mind, one of the most brilliant, happy days in my life...When I wrote book on Greek islands in 2015, I took the picture of this beach on the frontside, symbolizing my (unfortunately short living) recovery from CPPS. Hope that there are better days ahead of us. Thank you once again.

[carbonevo]

Chriss, can't agree more, words of wisdom!

Euro, suicidal pain which disappeared after two days. No structural injury would have such a behavior.. think about it euro ;) u just got yourself way too deep in this CPPS/pudendal pain and anxiety.
I hope your pain will significantly improve on your trip, enjoy it the best you can.
Good luck.

[chb81]

Hi everyone, in my case I am quite convinced that there are no major physical problems. As Carbonevo said, even with slight physical problems the body should be able to behave pain free. It is the mind that makes the pain get stronger and stronger.

In my case, since I have days (if I am lucky, weeks) in which I am 100% without pain – this shows me that it is possible without pain.

However I am struggling to find the right approach – I know I have to stop worrying and thinking about the pain. But the pain has such a negative impact on my life that I never truly believe it when I say to myself "o. k., the pain is there – but it’s not as bad, it will fade away soon – no problem!". Instead I think "why doesnt it stop? Why can’t I live a normal life?"

2 months ago I had a really bad flu for a week or so. Before it I had really bad pelvic pain. But when the flu hit me and I had the symptoms of feeling weak in the whole body it also led to a deep relaxation. Even though I continued to go to work somehow the whole body went into the "flu mode" and the pelvic pain went away totally. Even in the second week when the flu was a lot better and I just had a small rest of the sickness in my body, I was 100 percent painfree with regards to the pelvic pain.

When the pelvic pain is there again I always try to relax, do meditation etc. But I succeed in relaxing the same way as I did when I had the flu and the whole body just got weak and relaxed. So this shows me that it’s not physical but in my head – nevertheless I didn't succeed in tricking my head into this relaxation stage. I also don't think medication / drugs really work with that because they always only have a short term effect for me.

Would be great to hear your thoughts. And I am always looking to find someone that experiences the same with regards to 100% painfree some days 100% pain the others. Most on this forum I think always have some pain even though sometimes they cope with it so that they are not suffering as much. But in my case I really have zero pain very often. But this somehow even increases my fear of having the pain again.

Best,
Christoph

[carbonevo]

Christoph, same here, you just reminded me of a bad case of flu I had last summer, my CPPS pain went away instantly. I prone more to the theory that the brain used the flu as better distraction than CPPS so while you were ill with the flu symptoms there was no need for CPPS pain.

Any pain (seriously "any pain" since my CPPS magically disappeared and now getting random jumping pain in buttocks and legs) tends always to disappear when I am perfectly distracted.. like playing online game or focused on driving or when swimming... I suggest you to spend sometime on the TMS forum.. maybe you will find you answers there.

[chb81]

Carbonevo, thanks for your advice.

Do you mean the forum on the TMSwiki site?

Thanks,
Christoph

[carbonevo]

Yes, but dont spend much time on it.. as there is ton of information and useless blabbing... check the success stories and alan gordons posts.. he talks about fear.
Also i advise you to read Ezer's story which is on this site as well.

[Chriss]

Hi European, How are you friend ? How is it going?