Anxious about my (somewhat) diagnosis of Myofascial Pain Syndrome

[cnote]

I've been on this forum for YEARS, and I am SO grateful for it!

Some of you have followed some of my stuff, which is great, and I hope it has been resourceful to you, as many on here, some have come and went (I miss GreenLydia and NurseGirl).

Paxiled, I hope you are still on here my man!

Anyways, I'm 33 year old male (just had a birthday, yay!) And 2 years ago after doing a lot of running, I started getting a strange symptom... very strange, and embarrassing.

Basically, when I got an erection, it would hurt. But only when I had an erection.

I figured I just injured it or something during sex with my wife one evening or something, and I gave it a few weeks. It still never resolved, so I went to the Dr.. He brushed it off as nothing. Maybe a pulled muscle in my groin.

A few days after that I then started dribbling a lot in my boxer shorts after urinating. WAY more than usual. Then it felt like I had to pee 24/7. It was VERY painful, so I went BACK to my Dr., and he tested me for a UTI and a Bladder Infection (which men rarely get). I tested negative, so just to be safe, he gave me 2 weeks of antibiotics to take.

The antibiotics did NOTHING. I then had him check my prostate 3 times. lol. All was normal. That was not pleasant. My Dr. then was STUMPED. He asked me if I happened to have any lower back pain, BINGO. I told him "Now that you mention it, YES. But it's not as painful as my bladder! It's just a stiff lower back."

He then explained I was having muscle spasms in my lower back that was compressing my sacral nerves which control the bladder. He recommended massage therapy. My brother massaged me, and the bladder feeling went away. Thank GOD. But, I was left with lower back pain 24/7 for basically 10 months. Nothing I did seemed to help.

I figured I just had a slipped disc, and it would take a year to heal or something like that. Later, I got fed up and went to a chiropractor, and after 4 adjustments, I was pain free for the 1st time in 10 months. Why didnt I go sooner? lol.

But then it came back... and then in between my shoulders blades starting hurting really bad too...

I kept getting massages, on and off for ever, and seeing my chiropractor. This was getting exhausting.

Finally after 2 years, I have basically found out I have MYOFASCIAL PAIN SYNDROME.

MPS is basically muscle knots that form in your fascia. They can be latent (which means they are just there, but not painful or cause any issues) or they can be active (which means they are ticked off and are sore and cause referred pain, and cause other muscles to shorten and be tense and tight and sore as well.)

I have YET to find a 100% solution except for massage. My brother has to do VERY deep tissue massage and when he lands on one of these trigger points (I have many), they twitch like crazy. To me that is a good sign he's on one and releasing it.

So far the longest I have gone with almost ZERO pain is 2.5 months. But now I'm in a flare again and I just feel LOST.

My Dr. tells me NOTHING is seriously wrong with me... but I have joined some Myofascial Pain Syndrome groups online, and some of these people SCARE ME TO DEATH.

Some of these people have gone on disability, some can't work, some also get fibromyalgia from it etc. and sometimes their pain NEVER goes away.

And my FEAR... is that mine is going to progressively get WORSE and WORSE over time. My FEAR is that I'm going to end up on disability.

My FEAR is that these knots are going to spread like CANCER all OVER my body like they seem to be.

But I also have HOPE. Because I CAN be pain free for 2.5 months at a time... etc.

I have HOPE that just because it's a "syndrome" doesnt mean it HAS to be forever.

There is also VERY LITTLE information out there about MPS, which makes me think "Do I even REALLY have it?".

Could this all just be ANXIETY that is showing a NEW form in a physical way? I have not been on meds for anxieyt in 3 years.

Thanks for listening.

I JUST NEED SOME HOPE AND CONFIDENCE.

I'm fixing to go to LA to meet with some older famous celebrities that are interested in my film work! And I FEAR that this "syndrome" is going to get in the way of my DREAMS. :/

Thanks again!

[Paxiled]

C, I only mention this because there's this guy I saw on public television, and what he said kind of matched what I was told by a pain specialist.  His name is Dr. Yass, I think, and there's a guy over on another forum who had horrible back problems and couldn't get surgery, but tried this guy's program and he's in the gym five days a week now at 71 years old.  What these folks say is, a lot of times the problem can appear to be structural, but it's actually muscular.  Trigger point problems are very hard to diagnose, and everyone with muscle pain will also have trigger points that trigger than pain.  Almost everyone who gets an MRI will show some structural problem, but that doesn't mean that's causing any pain.  This guy believes the vast majority of people really have muscular problems, and some PT will fix it over time.  I have no idea if that's true or not for you, I'm only suggesting the diagnosis isn't necessarily the treatment, if you get my drift.

[Paxiled]

Did anyone ever suggest you go to physical therapy or to some other sports medicine/movement specialist who can help you work this out through strengthening your weak areas surrounding the painful areas?  Have you tried acupuncture?  I have something very similar, but it's from my drug reaction and so nobody has a clue how to deal with it.  But in your case it could just be something as simple as doing what you've been doing in the gym incorrectly.  Most of us do.  The fact you have this menacing sounding syndrome doesn't really mean that much if you can find a way to avoid stressing the muscles.  It might mean working out in a different way, but it's worth a try at least.  And it shouldn't interfere with your work -- that's a mental fear, not a physiological one.  If Steven Hawking can do what he does in his condition, you can do what you do in yours.    

[cnote]

Thanks Paxiled. I've read that excersising a trigger point is a NO NO. Because you can not strengthen a muscle that is contracted due to trigger points. But, again, I'm taking/reading advice from strangers online who have the same condition. Which can be a good thing, and a bad thing, b/c behind a computer, I don't really know who these people are. Yes, I believe they have conditions, but who's to say theirs arent worse b/c they choose it to be etc. Or maybe they are on disability b/c they weight 450lbs on top of having MPS. I'm young, healthy, and have gotten relief. I have stayed out of the gym for the past few months. I want to get back in so bad. But I'm afraid to aggravate stuff. I've read that once they are under control, it is safe to work out, but just don't over do it. To slowly strengthen the muscles back up. We shall see. Thanks man for putting into perspective. Fear plays a big role with anxiety and also having a diagnoses of something like MPS that's not life threatening. It's just painful at times, that's all. I guess I just fear it's going to get worse like a cancer or something. lol. Thats anxiety though! Looking back, I think I'm technically BETTER compared to a couple years ago b/c I am finally getting massages, and a better understanding of what is actually going on. Thanks again man. Hope you are doing well! :)