Fibromyalgia and PN... or CPPS?

[Bamse]

After reading through the forum for about 6 months, I thought I'd finally sign up and write down my story. I'd like to thank everyone for many helpful posts and recommendations, this has been far more useful than all my doctor visits combined.

As one of the male suffers from fibromyalgia, I am more or less used to weird symptoms related to muscles and nerves. Muscle pain, twitches, super-tense muscles, pressure sensitive nerves (tingling, paresthesia etc.) and a bunch of other annoying symptoms that come and go are a regular companion since 2012.

Do I have pudendal neuralgia? Frankly, I don't know. First symptoms came in March 2019, and I relate them to a period where excessive sitting (computer games) and breaststroke swimming were a potential cause. A sharp pain in the perineum after swimming was the first sign that something is wrong. Not too concerned, I decided to visit a urologist who diagnosed 'prostatitis' after rectal examination. Pelvic muscles were tense, so thankfully I was not given antibiotics straight away. Suppositories with some pain killers and cortisone were the recommended treatment, which unfortunately didn't help at all. My PSA was fine, so at least there was no immediate concern for cancer. After a few weeks, I returned to the urologist, who now put me on ciprofloxacin. I took 1 tablet and the side effects nearly killed me. As a microbiologist, I was more than skeptical about the sense of throwing antibiotics on an unproven infection, but when you are in pain you try whatever you can.

I bought my first donut-shaped cushion which improved sitting a little bit. Daily symptoms were pain in the perineum when sitting, occasional sharp pain, burning and muscle spasms in the pelvic floor. By that time, I had read enough information in the internet to understand that 'prostatitis' (or CPPS) is just a medical term for 'no idea what's wrong with this patient'. At least I had serious doubts that my prostate was causing all these troubles. An MRI of the pelvis came back negative. Due to my fibromyalgia, I was on a low dose of amitryptiline (10 mg) which I gradually increased to 20 mg, although I don't see much of an effect except for the side effects. I had hoped for some improvement of the neuropathic pain.

After reading 'Headache in the Pelvis', I started with stretches, internal and external trigger point release and extended paradoxical relaxation. My physiotherapist encouraged me that I am on the right way, so I was hopeful to get rid of this disease. Well, gradually symptoms became worse and I started wondering if all these stretches were actually helping. Looking back, I remember that excessive squatting and piriformis stretches were probably not a good idea. Sensation of coldness and regular tingling in the perineum were new symptoms, and I also noticed that I now had a burning pain right at my sit bones. I started wondering if this area belongs to the pudendal nerve, or if more nerves are being irritated or even damaged. Since tense muscles are more or less a permanent state with fibromyalgia, I felt that stretching muscles is not leading anywhere.

I tried different cushions but none of these helped a lot. Air desk seemed like a good idea, but I can't stand for a long time without making muscle tension in the butt worse than it already is. Over the past 9 months, I tried a bunch of medications and supplements, but so far I cannot claim that things improved significantly.

- Amitryptyline (20 mg)
- Valium (1-2 mg)
- Doxycycline (tested for 2 weeks)
- Mg/Ca tablets
- Quercetin
- Palmitoylethanolamid
- Omega-3

I am still uncertain which diagnosis is correct: CPPS or PN? Are the muscles irritating the nerve? Is the nerve irritated and causes muscle spasms? Doesn't really matter, I guess. I am currently giving antibiotics another shot (trimethoprim), in addition to valium to see if muscle spasms can be resolved by this approach. Bad sleep seems to be a factor (not surprisingly so with fibromyalgia). I might give naproxen a shot just to check if there is an inflammation which is causing the problems.

The only thing which really improves symptoms is avoid sitting like a fiend. It's very hard, especially at work with meetings, lunch breaks etc. Laying in bed makes me even more depressed than I already am, but I cannot stand the whole day.

Further options are Lyrica and a pudendal nerve block, but I am hesitating with both as I am not sure if this will improve the situation. Doctors are more or less useless, I feel that I am mainly educating them about a condition they don't understand.

The thing which bugs me most is that I do not understand this condition, and I cannot pinpoint whether PN or CPPS is the underlying cause. They probably overlap, but it is difficult to find the right treatment. Is physio helping or harming? Is exercise better than rest? I will also try a toilet seat chair, just to check if this improves sitting a little bit. TENS helped a bit, but I got the impression that the nerve was even more irritated afterwards.

Anyway, thanks for reading and any comments are welcome.

Bamse