The story so far (caedar's case)

[elitynski]

Redondo thx for the feedback. It's difficult in LA to find good PT help.

[Caedar]

Another update: At the recommendation of Dr. Echenberg, I was referred to Shari Berthold at Susquehanna Health. Another fantastic visit! She identified trigger points in my piriformis, iliopsoas, and thigh adductors. (I had suspected the first two, but not the last.) She also verified that I have a overactive pelvic floor muscles using biofeedback, which showed a 10x higher electrical signal versus a pelvic floor with regular tonicity. She gave me a very thorough list of stretches, exercises, and reference materials. After doing more extensive TP release on my adductors, which I had been hesitant to do before, much of my pain in my right hip girdle and shooting down my right leg seems to be one. One more pain generator figured out! Sure enough, when I looked in the Trigger Point Workbook by Davies, many of the adductors refer pain right to the front hip girdle region.

Also, my cocktail of klonopin, Atarax, and nortriptyline is holding fast! I don't have any side effects from the small doses, other than a little mental slowness (uncommon vocabulary words sometimes take longer for me to figure out, for example). My neuropathic pain has gone way down, my bladder pain is almost nonexistent now (with the addition of Prelief with every meal and reduction of high-acid foods), as is my urethral pain. I sat through an 8-hour roundtrip to Cleveland and back and had little to no pain whatsoever.

[Caedar]

Another visit to Dr. Echenberg and Shari. My main issues now are some slight perineal and penile pain (right-sided), rectal tightness/tenderness when standing for too long, and general central sensitization on the right side of my body. Because the antihistamine treatment was so successful at knocking out the bulbospongiosus TP + ejaculatory pain, Dr. Echenberg and I agreed that it would be worth it to give Elmiron a shot for some long-term therapy; the hope is that, treated this early, the IC component can be completely knocked out over the next 12-18 months. I'm also starting on a very conservative dose (100mg -> 300mg) of Neurontin to see if that helps the sensitization. We're continuing to be conservative with doses to avoid side-effects; for example, the original dose of clonazepam (Klonopin) I was going to titrate up to was 0.5mg, but I noticed little difference between 0.25mg and 0.5mg (although 0.25mg greatly reduced heart palpitations and sensitization in general), so we reduced that back to 0.25mg. I'm still in the middle of titrating up Neurontin, so I'm unsure yet whether it makes a difference; it does make me groggy in the morning, so hopefully that goes away. We agreed that because my symptoms are showing so much improvement with medication, lifestyle changes, physical therapy, and yoga/relaxation, that nerve blocks to break the pain cycle probably won't be necessary.

For my visit to Shari, a few breakthroughs: First, my resting pelvic floor tone was normal! This is a big improvement over last time in Dec, where it was 10x normal. She also assessed that, although my hip flexor and rotator mobility are improving, my lower back is still very, very tight, so I need to work on lengthening those muscles. Also, the adductors are much better but she dug into the iliacus (bottom portion of the iliopsoas) and that was still terrible, so she showed me how to perform that release. After she released the iliacus and further up on the adductors than I usually go (she showed me how to avoid the femoral artery), the pain in my hip girdle disappeared completely. Finally, and most importantly, she tried some internal TP and found a MASSIVE trigger point in my right anterior puborectalis, which referred directly to my right-sided penile pain/burning. She asked me to bring in the Crystal Wand that I bought for next time so she can show me how to self-treat that trigger point.

All in all, some very good visits!

[webslave]

Your case shows how important it is, in order to be successful, to be intelligently involved in your treatment.

Many men who fail to get better:

1. leave it entirely up to the urologist
2. don't want to know the details (iliopsoas what?)
3. expect a medication to make them better
4. expect an invasive procedure or operation to cure them (after all, so many painful conditions —e.g appendicitis— yield quickly to surgery, so expectations are created based on what we think we know about pain)

unmotivated.png (12.46 KiB) Viewed 883 times

[robertpagen]

So true

[Simone100]

How do you release your TP in bulbospongiosus & ischiocavernosus?

[Caedar]

Just using my index and middle finger. Find where it's sensitive, and press lightly and side-to-side. The ischiocavernosus travels pretty far up the perineum, even up to right under where the scrotum attaches to the rest of the pelvis, but just follow the long, thin muscle.

[Simone100]

Is this painful spots? The small muscles just feels very tense, but are not painful to me.

[Wolfcub]

I think it has something to do with my nerves and blood vessels down there. My PT found no trigger points in the internal pelvic muscles.

[Caedar]

Simone: If these muscles specifically are referring pain to your penis, massaging them will be painful. I have found that the bulbo refers to pain on ejaculation and the ischio refers to pain on erection. Your case might be different.

Wolfcub: It's hard to classify the ischio and bulbo as "internal" or "external" pelvic muscles. I don't think you can access them from the rectum, just from the skin. (Again, take this with a grain of salt.)

[Caedar]

Another small update to keep the ball rolling:

Here's my current status:

• Pain on ejaculation gone. Pain on erection 80% gone. General pelvic pain 90% gone.
• Urinary symptoms >90% gone. I even tried going off hydroxyzine for a few days, and they didn't come back! Will try staying off for longer periods to see if urinary function remains the same. Alcohol still triggers, but much less than before.
• Neuropathic-like pain still problematic, especially in thighs. It's mostly calmed down in my face and hands. Trying a new dose of 20mg nortriptyline to see if that affects it.
• Tapered off klonopin. Had some moderate withdrawal symptoms, but they're gone now.

I recently went to see Dr. Brian Wainger at Massachussets General Hospital. He's very familiar with central sensitization and "weird pain syndromes" as he put it. After I described my case to him, he told me that because the primary pain at the peripheral nerve level is gone, it's very likely that the remaining neuropathic pain will as well, as long as it's not connected to some other injury or issue that I don't know about. He basically said that my nerves had undergone "irritation but not gross injury," so the sensitization should be reversible. He cautioned that the research is still so young that he couldn't say 100%, though. As far as treatment options, I'm pretty much doing all I can at this point, other than perhaps trying something like acupuncture, which he had mixed feelings about but said might be helpful.

[webslave]

Thanks for the update, Caedar. You and Dr Wainger "get it". I wish more patients and doctors were so perceptive ...

[ThighguyCA]

Hi Caedar,

Of all the posts, I think I can relate to your story the best. High Anxiety, stress, clenching of pelvic muscles (and shoulders and neck!). I am past the anxiety of my stressful event (see my previous posts) but left with what my Dr says is hypersensitive nerves. I would be 100% moved on if it wasn't for my sensitive thighs, my prickly buttocks and random penile burn. If I am walking or standing or on weekends, my sensitive thighs and buttocks seem mostly normal. At work while sitting or driving, all I can notice is the back of my thighs, buttocks and sometimes lower back. I am 100% sure this is muscular and nothing else. I was so whacked out on stress for over a year that it is any wonder I didn't do more harm. My body was over loaded with cortisol, adrenaline and other hormones from stress. My muscles in my whole body were clenched making me think that I had some kind of disease (herpes mainly) which only reinforced my stress.

What makes me come back to your posts for advice and review is the fact that your lower body remains in a 'centrally sensitized state' much like mine. The allodynia, hypersensitivity and general 'sensations' that a feel are similar to yours. What I notice most is my 'tight' rectum/anal area, constantly being squeezed, I have to remind my self to 'drop' my pelvis. I think this clenching for the last 2 years is really the base of my physical problems. If you suffer from such a problem (tight internals, namely rectal) how do you combat it?

[Caedar]

Thighguy,

Your remaining symptoms are almost exactly what I still have to figure out: prickling/tingling lower extremities (almost non-issues when walking and standing), tight rectum/anus, and slightly burny penis when irritated. I think the penile burn and the rectal tightness are related; after all, the pudendal nerve runs through the levator ani, which is often spasming/tight when rectal pain is a problem. I never really needed to do serious internal TP release to ease my earlier symptoms, but now that I'm noticing the rectal tightness, that might be important. Back when I was actively seeing a PT (before I moved), she found a TP on my puborectalis, which caused serious penile burning when pressed. Long, warm baths and lying down always helps with the rectal tightness, and keeping a good diet to maintain consistent bowel movements also helps. Overall, though, still trying to figure out this piece of the puzzle.

As far as the allodynia, I think what's most helpful is simply a good lifestyle: getting enough sleep, meditating, eating well, and not stressing out. I'm also going to be re-doubling my cognitive stimulation efforts (tDCS); research specifically using tDCS for CPPS has been released and looks good. and trying to get some quantitative statistics about my meditation practices using Melon. It measures the activity of the prefrontal cortex, which is essential to pain inhibition. Essentially, it's a neurofeedback device. I'll let you guys know if any of that helps.

[Caedar]

Update: Still off hydroxyzine, and urinary symptoms remain >90% resolved with few triggers.

Also, very interesting for Thighguy: I'm reserving full judgment for later, but I think I may have found a serious tool for managing the allodynia. I've been applying this magnesium lotion to the affected areas on my thighs for the past couple days, and the result have honestly been astounding. I managed 14 hours of driving the past two days with little to no allodynia, which would normally be provoked in force by the extensive sitting. I'm not sure whether the texture of the lotion (it's quite sticky; not exactly the most pleasant feeling) is blocking the feeling of allodynia, but it seems to last even after the lotion has absorbed completely. Theoretically, this treatment makes sense: specifically, NMDA receptors--one of the most important mediators of central sensitization--are blocked by magnesium. I have been taking magnesium supplements, but they haven't had this much of an effect. I will continue to report.