The story so far (caedar's case)

[Caedar]

Just a little update. The tingling/irritation was really starting to make me nervous that it was neuropathic pain that was just going to spread and get worse, as it had actually spread a bit up to my arms and neck. I figured out a very simple way to distract myself from the tingling, which in turn reduced the spread back to my thighs/calves, which was to rub some menthol/camphor gel onto the back of my neck. This sensation is strong enough that it pulls my attention away from many other sensations, allowing me to stay calm and not obsess over the tingling. However, I really think that these aren't the fasciculations that webslave was referring to, so I think starting on a low dose of amitriptyline might be something I'd like to try, just as a preventative measure to make sure that the tingling sensations don't spread and become worse.

[Caedar]

Another interesting update. Although the irritation and tingling has continued, I've noticed that any actual pain in my pelvic region has disappeared, including pain on ejaculation. Weird, to say the least, but welcome! The tingling is still a concern, but I'm trying to figure it out cautiously.

[Caedar]

Things on the pain front are going really well! I have a little tingling left and a little discomfort when I drink a lot of alcohol or sit for very long times, but things haven't been this good in a long while. I've changed around my ordering of stretching and trigger point release (to do TP release before stretching, as I heard that deactivating TPs before stretching can help to prevent irritating them), added a few things, and started my tDCS treatment nightly. Here is my current regimen for reference:

Morning (total time needed = 30-40 minutes)
Supplements | Probiotics, multivitamin, anti-inflammatories (quercetin, ginger, turmeric, ginseng, 1 naproxen if needed)
Foam Roller | Release quadriceps, IT band, inner thighs
Lacrosse Ball | Release gluteus medius and minimus
Theracane | Release abdominals and lower back muscles
Hands | Connective tissue massage "skin rolling" inner thighs and around knees
Dynamic Stretches | Side-to-side and front-to-back leg kicks (15 each), pike stretches (10 each)
Yoga | Table, Downward Dog, Low and High Lunges, Warrior II Pose, Cobra, Pigeon

Evening (total time needed: 30-60 minutes):
Repeat and releases or stretches from morning as needed
Meditation | Mindfulness
tDCS | 20 minutes, 2.0 mA, 35 cm^2 electrodes, M1/Fp2 montage

As Needed:
Motor-level TENS (30 min) for acute pain relief

[webslave]

Experimentation is often the way to make a breakthrough. Well done.

[Caedar]

I just want to leave a quick note here about just how important practising the pigeon pose has been to my recovery. It seems to have seriously improved my urinary and urethral pain symptoms in conjunction with TP release.

[Caedar]

Another quick update. I started taking Elavil (10 mg) a few days ago. Unfortunately I'm getting pretty awful brain fog and fatigue from it for about the first 6-8 hours of the day. It hasn't seemed to do anything for my spontaneous pain/irritation, however it has helped some of my IBS symptoms a LOT. I didn't expect this, but the literature says that TCAs are used for IBS as well. Lucky coincidence, I guess. I'm going to go another week or two and see if the side effects go away and/or cut to 5 mg to see if the IBS symptoms are still helped at that dose. Because of the cross-talk between bowels and surrounding areas can be a source of chronic pain, it might be worth it for me to stay on a low dose as long as the side effects decrease.

[davyboy]

Something odd has happened in the past few days: I have a weird tingling, almost-itching feeling in parts of my thighs. It's not pain, exactly; rather, it's like they're being constantly irritated or inflamed. "Tight" and "buzzing" would be two other ways to describe it; not pins and needles, though. Has anyone experienced this and/or knows some ways of alleviating it?

I get this ALL the time. It coincided with me feeling better.

[Caedar]

I get this ALL the time. It coincided with me feeling better.

Yeah, most of my classic CPPS symptoms are gone now as well. So weird...Maybe it's a neuropathy that developed as a result of the CPPS, but was covered up by the pain of CPPS itself? Have you found a way of alleviating it? It's very annoying.

[Caedar]

While my CPPS symptoms remain about 90% relieved (some minor penile pain occasionally along with minor urinary symptoms), the neuropathy has kicked up a notch. Very frustrating and discouraging, to say the least, considering how much progress I made with the CPPS. My best description is a burning dysesthesia, mostly in my legs, but also up my sides into my arms and hands (mostly right) as well as a little in my face. It spread originally from my legs, so I'm thinking perhaps I have a pinched nerve or some other spinal issue (and perhaps this even contributed to my original CPPS case?). I'm going to try booking a neurology appointment to see what's up.

[ThighguyCA]

Hey Caedar,

Same problems as you. My arms and legs will burn, buttocks have a very strange feeling in them, not tingling, not pain, not burning, but can only describe as a sensation. I get the same feeling on the side of my face and tongue too (TMJ?) Does your scalp burn? I think my stressful event and anxious dispostion may have triggered Fibromyalgia or CFS along with CPPS.

[Caedar]

Yup, I essentially have all those symptoms. However, my scalp doesn't burn. One thing I just received and have been trying out that appears to be helping a lot is Penetrex, which is billed as a topical anti-inflammatory. I had tried menthol/camphor gels before, and although they masked the burning for a time, once the cold sensation died down the burning would return. Penetrex doesn't induce any sensations, but it does seem to alleviate the neuropathy.

[Caedar]

So I finally had a consultation with Dr. Robert Echenberg at the Institute for Women in Pain (Bethlehem, PA). It was absolutely amazing, and I'd suggest anybody with CPPS go see him. We spent about 2.5 hours together going over symptoms, talking about how chronic pain works, a detailed pelvic physical exam (focusing on trigger points and nerve sensitivity), and designing a medical treatment plan customized to my symptoms. One thing he was able to pick out of the information I gave him and the physical exam was that my CPPS might actually be caused in part by interstitial cystitis, which is a very helpful observation because of the persistent (although minor) urinary issues and penile urethral pain that I'm still trying to get rid of. For completeness, here is the pertinent section of my post-consultation packet: http://imgur.com/B3wbSQR

Also listed: 6. Chronic pain processing disorder 7. Generalized anxiety disorder, long-term

In addition to the PT and adjuncts I'm doing right now, I'm now tracking my water intake and eliminating high-acid foods/drinks from my diet to see how my body responds; so far this seems to be effective at reducing my urinary urgency and some of the urethral pain. I am also taking 0.25mg (very low dose) of Klonopin at bedtime as a way to reduce anxiety in the short- to mid-term. He also prescribed hydroxyzine 10mg and nortriptyline 10mg to combat IC inflammation and general pain, respectively. I'm beginning all of these medications in a staggered manner, so I have only gotten used to the Klonopin so far, which I've got to say has been nothing but positive. It has moderately reduced my neuropathic pain symptoms and I notice now that my heart doesn't beat out of my chest or extremely fast when I'm under stress like it used to, and at such a low dose I have not noticed a single side-effect yet. He also referenced me to some good pelvic floor PTs in the area. After a few months, he would like to try Elmiron if I respond well to other IC-targeting therapy (diet modification, hydroxyzine). His intent is not to have me on all these medications forever, but to use them as stepping stones to less pain by targeting all the parts of the pain cycle. Finally, after a few months, because of the nerve sensitivity he found, we can evaluate whether some nerve blocks would be appropriate at breaking the pain cycle even further. I should note that none of these are medical prescription suggestions for other people. Your case may be completely different from mine. They should be seen as ideas to discuss with your doctor after a thorough evaluation of your symptoms.

If you aren't too far away, no matter how far along you are in your treatment, I would highly recommend seeing this guy!

[elitynski]

Thanks for the report on your visit with Dr. Echenberg. After reading your summary I'm inclined to look into visiting him, although, I'm somewhat hesitant since I live in Cali.

Right now I'm considering a number of things:

Echenberg / Moldwin / Shoskes - for a Medical perspective (although I've never been diagnosed with IC)
Pendegrast - PT in SF
Renew PT in NYC
Beyond Basics PT in NYC

Still not sure which direction to head, so I'm taking this slow.

[Caedar]

I'd imagine that for PTs, you'd want to see one fairly close by so you can get consistent treatment. For me, Echenberg was very valuable for giving me a very detailed overview of my entire condition so that I can start targeting all of the facets (neuropathies, possible IC, etc.) rather than just dealing with TPs themselves, which I already have a pretty good handle on. Echenberg, Moldwin, and Shoskes are all certainly good options, but I can only speak for Echenberg--and as I said, I can speak very good things!

[redondo21]

I go to Beyond Basics and think it is excellent, but I don't think it's so good that it's worth a trip to NYC just to go to. I suppose if I were going to NYC anyway for other reasons it would make sense.