Overdue Check In With A Good Amount of Success

[MajorSky1]

It's been about 11 months since I've checked in here, so I thought I might just give a probably-not-brief-enough update. I won't be back for many months after this. In some ways it's a success story, but I'm not 100% out of the woods yet, but I'm getting there.

If you've read my old posts at all, you can see I was a mess. I'm much better now, probably around 75-80% better.
Basically, I usually have about 5 to 10 really good days, and then it seems like the pain flares up (not nearly as intense as it used to hurt a year ago. I can always push through it now, though it can be annoying at times), and I'm uncomfortable for anywhere from 5 to 7 days. I'm still in the process of detecting what causes this, but before I go into that, I want to explain something about my case:

I have been seeing the same team of expert physical therapists for over a year now, and the head therapist says that I have pudendal neuralgia, along with some genitofemoral nerve irritation. The entire left side pudendal nerve has been a mess. This means bad pain from the left SI joint, down to the left tuberosity, along the tailbone, where it ends until the left perineum, testicle, and front left corner of the pelvic floor and along the left side of the internal urethra. This area includes the perineal branches of the pudendal nerve.
Still no smoking gun as to why, but a few suspicions of how it started - and the main one is a possible lifting-twisting injury involving over exerted muscles around the internal area of the SI joint, based on the pain's behavior.

After taking time away from this board, I have learned how varied other cases can be. There is a huge multitude of possible causes of injury to the nerves, muscles, and connective tissue of the pelvic region. Very few of you have the exact same symptoms, cause, or tissue that is affected. If you're going to discuss your issues on this board, you should understand that there may be only a select few, if any, who have the same condition you do. Some have prostate issues, some have muscle-centered issues, once in a great while someone will actually test positive for infection, or an STD. Many causatives. Many different conditions SEEM to express similarly in some ways, while others are obviously different. My point is to be cautious for your own sake when it comes to comparing yourself to someone else. It's easy to do on this board, but it can cause you trouble and unneeded anxiety on top of it. Most people don't know for sure what caused their problem. Some do. But before you compare yourself to anyone, you should do all you can on your own by seeing good doctors and physical therapists. Don't rely on this board unless it's to get doctor or therapist referrals or tips. Your recovery will come from dealing with your condition on your own, not on this board. For the first several months, I kept coming here trying to find answers to the minutia, and it wasn't helping me at all, and definitely added to my stress.

My condition is pudendal neuralgia, and the prostate has nothing to do with it. I think it's VERY important to understand that just because you have CPPS does not mean you necessarily have prostatitis. CPPS is just a description of the pain, and not indicative of it's source, or reason for happening. Even nerve-based conditions can be different and behave differently from person to person, and a lot of that may be from how the nerve or tissue was injured. In fact, the exact same injury on two different people can produce completely different, or at least inconsistent symptoms, like PNE that cyclists get.

I have had no trigger points since about July of 2015. Unfortunately I still sometimes have connective tissue tightness that can irritate the already angry nerve. Also, I have learned that stress releases cortisol which causes inflammation. Stress is a weird thing with pelvic nerve pain. Angry nerves do not take well to stress not only because of the cortisol, but also because of EVERYONES tendency to tense up a protect around the tailbone area at the onset of stressful situations. Most people don't notice it because they don't have angry nerves in that region. But I've learned that certain situations cause me stress that I didn't realize before just from sensing the pain around the sacrococcyx joint.

I have come a LONG way improving in that realm.
You MUST remember that just because something you do, or eat causes a flare up, does not mean it was the initial reason for contracting the condition, no matter what anyone tells you. For instance, people with chronically inflamed nerves, or malfunctioning nerves (based in the amygdala) can be flared by gluten, or dairy. This doesn't mean you had a gluten allergy before, and it doesn't mean you can't eat wheat products or milk again someday. It means your nerves are super sensitive to any irritant right now, including foods, certain movements, or drugs.

For me, I not only have to retrain the nerves, and also the muscles not to involuntarily protect at the slightest sense of pain, but I also need to do all I can to keep the angry nerve from becoming chemically irritated. So I've give up gluten, and dairy (except for fermented, organic like kefir). I eat organic, and I've significantly reduced processed sugars. It's temporary, but I know that after I change my habits, I probably won't go back to eating like I did when I was on cymbalta. Pizza and ice cream 4 nights a week. It was comforting but stupid. Late Spring into Winter of this year, I was on Cymbalta for 4.5 months. It helped, but when I titrated up to 60mg, I eventually felt less pain, with mild flare ups, but the weight gain was ridiculous. I went from 175 to 196lbs. So I got off cymbalta and will never be on that stuff again. There were some nasty withdrawal anxiety days, but I got through them.

I've just recently lost 5.5lbs, and I'm still working on getting the rest off.
I have been running about 5 to 6 days a week for the past 5 months, and I've been at about 2.50mi. for a while now. A year ago - no way I could have run. So I'm thrilled that I can run now, and it doesn't seem to have any bearing on my pain. If you can exercise consistently, DO IT! It can only do you good. Anything that induces circulation is great.

So I still have a few pain spots along the localized tract. I even still have moments where the pain ratchets up enough to make me feel like I'm down in the dark hole. Pretty sick of that, but it always resolves. I'm hoping my more recent diet changes will help keep me consistently feeling better without the flare ups that always seem to come.

In all the research I've done along with my awesome PT, it really seems like the best healing medicine for at least what I have, is time. I probably have another 1, maybe 2 years of gradual healing to do before I feel 100% again. It sucks, but at least I can function now, and I can 99% of the time just push through those flare days where the pain fluctuates.

The bottom line is that you have to take the time to figure out what works for you. Don't let someone tell you definitively what is best for you. They don't know your history, or how your pain behaves for you. Do your research. Talk to a myriad of professionals. Don't let anyone take away your hope with some stupid offhand comments that probably doesn't even have anything to do with your actual condition.

Hopefully next time I return, it's to say "I'm out of the woods."

I start school in a few weeks for my PTA degree. I'm very excited to specialize in pelvic pain. If I learn anything amazingly helpful I'll be sure to share it.

[jaumeb]

Thanks for the update. Do you think that the kefir is better than the yogurt? Do you make it yourself? If yes, do you use grains or a commercial starter?

[MajorSky1]

I buy organic already made. I like kefir for the simple reason it's more liquid, and it works well with smoothies. It's healthier to stay away from added sugar, so prefer the plain, and then add fruit like blackberries. I believe kefir has more types of probiotics than yogurt, but I'm not positive. The more probiotics, the better. Most serotonin is produced in the gut, as is most of your immune system microbes, of which the probiotics are a benefit. Chronic pain takes it's toll at times, and keeping your gut healthy helps, it seems to me.

[jaumeb]

Thanks for the clarifications Major.

[Alphalifestyle]

Really great and thoughtful post! Thank you.

I am on a 21 day water fast right now and will also transition into a strict Paleo Diet (only vegetables, eggs, fish, seafood, meat, some fruits and nuts) afterwards to fight silent inflammation in the body caused by cereals, sugar and milk products.

Also agree on daily physical exercise as an important components to promote bloodflow!

All the best on your path. Keep us posted.

[MajorSky1]

Hey Guys,

I had a great thing written, and went to attach a link for a video, and lost it all. I'm too lazy to retype it all, haha.

I'm doing better. Still fighting some pain areas, one of which has switched sides, and usually only hurts after a BM for a while - front of pelvic floor. Deep breathing to relax is what eventually makes it go away for good.

Been having back problems for a couple months - mostly bad tightness in lower back and hip flexors. 75% of previous pain areas have resolved 75%-100%. Still have flare ups sometimes that suck, but I can at least function for the most part. My estimate is 99% recovered within about one more year. I'm back in school for PTA, getting all A's. School keeps my mind busy which is good, but also creates a little stress with tests - which I like, but my nerves don't.

Not on any prescription drugs. Just some vitamins, and probiotics, and zyflamend (holy basil, turmeric, ginger, green tea, rosemary, hu zhang, Chinese goldthread, barberry, oregano, and skullcap).

I wanted to post this video because if you're suffering from flare ups that rattle your cage, this might give you a perspective to help you get through.

Watch this (Lorimer Moseley):

Cheers,
Brant :)

[MajorSky1]

Update Dec 11.

3 weeks into Celexa at 10mg, and have spent the past three days mostly sleeping. Slept about 6 hours in the day, and then all through the night. No energy. Today, I'm trying to get out and get some air.

Celexa is MUCH different than cymbalta. It seems like cymbalta was much gentler to get on, and off of. I'm going to keep on with celexa for a couple more weeks to give it a chance to kick in. My body seems to really be taking a long time to adjust to it. Some wicked lower paraspinal pain, and pelvic pain was alive and kicking over the last few days, and moving from the left front pelvic floor to the right front - back and forth every couple hours. I did NOT have pain in this way before starting this drug, so I think that the drug is stimulating old pain pathways while my body adjust to it. I'd say I've been in the start-up trough for about 2. 5 weeks, but I also had a bad cold and sinus infection all that time too, so I couldn't tell which was making me feel so crappy.

BEFORE I started celexa (citelapram) I had mostly lower back pain, with occasional pelvic floor pain kicking up just enough to be annoying, and also cause some pain-related anxiety which scrambles thoughts for a while. Apart from being really annoying, and sometimes exhausting, I still have felt like I have improved A LOT since over a year and a half ago. My goal with celexa is to calm down the pain-related anxiety, and hopefully subsequently the pain flare ups to the point where my brain eventually forgets the connection. After a few months, maybe up to a year, I will then slowly taper off and hope that those pain/anxiety pathways have become more stable and have forgotten how to fire in the way they do now when I'm stressed, or anxious.

With the exception of trying cymbalta for 4.5 months last winter, I have been adamant about not being on meds. But with my investment in school, and just plain being SICK of anxiety and pain, I want to try a new tool.

Celexa may not be typically used for "pain", but since gaining too much weight while on cymbalta a year ago (20lbs, of which I have still not been able to lose all of), I wanted to try something more for anxiety since my pain seems to be somewhat cyclic. It seemed to flare up every weekend before my Monday A&P test (had finals last week). It's weird because I love school, and I love having some test stress. But this condition doesn't seem to care. Any stress causes pain/anxiety. So for now, celexa it is (and I've lost about 4lbs on it so far).

The trajectory of improvement for me has been an overall steady downward ramp, stubbornly steady at the same angle for two years. Any durations where I felt great for a while were temporary, and I'd return right back to where I left off before. Every few months, the areas of pain, and levels of intensity in some areas would diminish a little bit.

In areas where I once had intense pain for months, there is now 1% to 0 pain left. But there are two or three areas which are better, but still cause misery when I have flares. But since I have improved a lot in two years on my own, I now see the use of celexa as a tool to possibly finish off the last stubborn vestiges of this condition. There are absolutely pain pathways that are a result of a change in neural behavior causing me to feel pain as the norm - especially at the most minimal stimulation, such as a BM, where I have front pelvic floor (internally on both sides of the crus of the penis) neural wind up (no trigger points) beginning about 5 minutes after. Lately, it has been switching sides every few days or so.

So we'll see how it goes. Celexa takes 4 to sometimes 8 weeks to feel the therapeutic effects, and I may have to titrate up to 20mg.

[webslave]

You're on the right path. Can't hurry nerves though ... they work on their own timetable. Just go with the flow, the niggling pain is a little thing, tell yourself, a phantom denoting nothing.

[MajorSky1]

Probably last post for a while. This past Monday I decided to taper off celexa. The side affects are a bit more harsh than cymbalta ever was for me. Slowed bowels, sexual side effects, headaches. Started to feel the good benefits literally the afternoon after I got the ok from the Doctor to taper. Felt better for a few days, but today noticing a slight return of PF discomfort.

I would like to try a different SNRI other than cymbalta, but I really don't want weight gain or sexual side effects. Too early to say for sure, but I may have met someone I could possibly see a future with.

If anyone has compared cymbalta with Desvenlafaxine (Pristique) and/or Venlafaxine (Effexor) and found any difference, please let me know. I wish there was something with minimal side effects that I could be on for 6 months or maybe a little longer while I retrain my pain pathways.

[carbonevo]

Have you tried tramadol? This drug is a god send for me.. Actually it's all I need when stresses go out of control and my pain return.
I've been using it for a year... But never more than 3 days in a row to avoid addiction. And it works perfectly this way... Boosts mood like the best antidepressant, kills all the pain and gives even energy... Only hate the groggy feeling when on it. Tho sometimes I feel really high and sometimes it's barely noticeable... Weird.

[MajorSky1]

I did try that a couple times last year. It's a feel-good, groggy drug for sure. I could take it over the holiday - I do have some - but during school I can't afford to be fuzzy headed. Maybe I'll dig it out and try it next time I have that kind of need. I'm super careful about drugs like that because of that addiction thing. Thanks for reminding about it.
Do you notice any depression for a day or two after taking it?

[webslave]

Do you notice any depression for a day or two after taking it?

The antidepressants Effexor and Pristiq are chemically related to the atypical opioids Tramadol (Ultram) and Tapentadol (Nucynta), so these opioids usually have a mood-lifting effect

[carbonevo]

No depression at all man. Maybe you experienced it once or couple of times after taking tram and now you are conditioned to think this way... I'd ignore any thoughts related to that. But for me what worked is the ER version. IR did not work.

Last thing, I noticed that you keep thinking in a direction that you will have this for years till it settles. Not entirely correct buddy... it really depends how much you think about the symptoms and how much you fear them... that deep on gut level fear. That what keeps it alive. If you could stop the fear and preoccupation with the symptoms completely you'd probably be cured in days. Which is very hard... you'd need to reach Buddha monks levels of mindfulness.

I read your case and I seriously advise u to listen to Claire Weekes tape which I have in my signature... she speaks about fear/anxiety and hypersensitized nervous system

[MajorSky1]

I totally agree. I'm working on that. I'm in a bad position right now which doesn't help at all, and trying to find a way out of it. Last summer when I ran a lot, most of the time I felt better. Going to join Planet Fitness for the tread mill in a few days since running on ice and snow sucks.

It seems like the pain needs to be shut down long enough for the NS to forget about it long enough for those pathways to heal. Been trying to unplug that connection. Sometimes it works, and sometimes it still gets me. There is an involuntary, autonomic NS aspect to this which is what can make it really difficult. It can be done, I know. I will recover all the way. I've already come a LONG way improvement-wise. Just still some stubborn areas of pain that trade, and move around and are, more than ever, noticeably tied into stress, and almost synonymous with anxiety. Convinces me that neural pathways got reprogrammed at some point and they're slowly working their way back while I try to encourage them in that direction.

I'll check out the Weekes tape. Thanks much!!

[carbonevo]

You are pushing a bit hard man and hence reinforcing the symptoms to keep returning. Like Alan Gordon mentioned.. when the symptoms are minor or gone, you feel optimistic and feel that they are on the run.. when they return back you feel hopeless and think if they will ever go.. as long as its a perfectly normal reaction it reinforces the behavior "pain -> fear -> preoccupation" which keeps us with this psychogenic awful pain despite nothing structurally wrong going on.

Weekes said if we didn't have fear, the hypersensitized body would extremely quickly repair itself. Therefore you need to utterly accept whatever feeling/pain there is and not give a dusty fuck. Acknowledge it and move on. Listen to the audio man.. it could be all u need to kill this. Here you have the audiobook for free:

http://www.tmswiki.org/forum/threads/cl ... udio.2569/

Although she addresses this to beat mainly anxiety and physical symptoms. It perfectly works for this psychogenic pain and it helped a lot of tms people to get out of their mess. So all u need is to apply the concepts to pelvic pain.

Good luck man and merry Christmas