triggerpoint is messing everything up :(

Ok so i have pelvic floor dysfunction (painful muscle spasms in my lower pelvis) and pudendal neuralgia. I DO see a pelvic floor physical therapist, and yes i know some of ya'll might think that's a bad thing, but i'll explain why in a minute.
First of all, she does believe in TMS and mind/body approaches (she's seen it in action with her own neck pain) but at the same time, when she does internal pelvic work, she feels all the tightness and triggerpoints that squash the sensitive nerves, so i guess you could say she's into both the physical and mental side of things. I know that going to her will not cure me, but it seems to stop me from getting worse. Mainly because i will sometimes get a horrid muscle knot/trigger point right on top of the nerve and i cannot break it up myself.
She said that not all triggerpoints cause pain. People can have many triggerpoints that are not symptomatic at all. however, they almost never just go away on their own. I understand some people here might argue with this, because now we're talking a "physical" issue. But i know my brain is creating this tension in my pelvic floor, and creating the knots. She agrees with this.

So anyway i was doing so well for a while. Not pain free, but my baseline pain was down and i was managing it well and feeling hopeful. Then about a month ago, i had a fight with the boyfriend, did a long bike ride (remember, i have PN, and bikes can be quite irritating, even though with mind/body techniques i have gotten back into casual riding), and a stressful work week, i started getting severe pain. I was even waking up in the middle of the night with pain, and that NEVER happens. Also, i would wake up in the morning with almost immediate pain, which also never happens. Generally my nervous system is calm when i've been sleeping (also a clue that it's TMS) so the fact that i now had 24hr pain made me assume it had to be a bad knot. I called the PT and when she did an internal exam, she immediately said "WOAH! this is the biggest knot i've ever felt on you, and it's right on top of the nerve".
She broke it up, and i only felt a bit better, but the pain returned very quickly. I waited an agonizing week to see her again, and she said the knot was back in the exact same spot, but smaller. She broke it up, and same thing, i felt better for a short bit, but the pain returned with a vengeance and i'd go back only to be told the knot was back in the exact spot, but a bit smaller. This has been going on about 4 times now.

I asked her, "why does this knot keep coming back in the same spot? and will it ever stop?" She said it's probably a muscle memory thing at this point, but luckily it keeps getting smaller so we may be beating it. She also said that my brain probably thinks the area is in danger, and it's upping the sensitivity of the nerves and the muscles are tightening and acting accordingly. Naturally, i'm beside myself because i fear the knot coming back every time she releases it. I know it's my brain doing this, creating this tension that knots up the muscle, but of course that doubt is creeping in that "you have a physical problem".

Seriously, i was doing so well. i dont know how to use my brain to stop this muscle from doing exactly what it wants to do, and that is create a giant knot in the same place about 1-2 days after it has been worked out. I try to be calm, i try to listen to meditative videos and breath, but i'm losing this battle. Any advice? I try not to think about the knot coming back, but all it takes is one little stressful event about 1-2 days after the triggerpoint release, and boom, severe pain that wont stop (the knot forms). Please dont tell me that PT is a crock, because this one actually believes in mind/body approaches and i am very aware she will not cure my TMS. I always knew this. It's a matter of breaking up problematic knots that i use her for.

 

You definitely won't get any anti-PT sentiment from me! Internal pelvic floor PT was the first time I truly got a sense of how my mind and body are connected and saw the direct impact that stress alone could have on my muscles and pain level. I didn't know about TMS when I was in PT, but I think that if I had, it would have been the exact one-two punch I needed. So I think you're on the right track! Especially if your PT understands TMS.

Aside from this possibly being a regular old TMS flare, maybe even an extinction burst, I thought of a couple things that helped from my own experience. You may be doing these things already, but I wanted to mention them just in case:

1. Do you regularly (even if that means a hundred times a day) consciously "drop" your pelvic floor as you go about your day? Since I hold tension there, my pelvic floor is always a little raised and flexed, always a little more engaged than it needs to be. Consciously relaxing my pelvic floor over and over and over all day helps reduce the overall tension a lot - and it helps me gauge just how stressed I am. Sometimes I relax it and I'm amazed at how high I had it. Other days I'm aware that I must be feeling a little more relaxed and supple because it's not too high up at all. It works best for me on an in breath. Since the pelvic floor is gently pushed down by a good diaphragmatic belly breath (if it's relaxed and allowed to do so), I take a deep, full belly inhalation while relaxing my pelvic floor and imagine the floor dropping down a level, like an elevator. I do it many, many times a day. At this point I do it so regularly that it's barely even a conscious practice. Which I think is the goal! My muscles are way less generally tense now, especially if I attend to that practice almost minute by minute in times of acute stress. Even if I'm tense again fifteen seconds later, it was at least a moment for the muscles to get a bit more oxygen and take a brief rest, slowly breaking the pain cycle.

2. Are you practicing relaxing into the pain when your PT works the muscles? To some degree you have to, but I got best results when I made it a conscious, almost meditative practice. I would practice diaphragmatic breathing and imagine my muscles melting against the pressure. I knew that my PT was well-practiced and well-educated and wouldn't hurt me, so I started reframing the pain as gentle progress and saw it as a cue to melt into it and relax as opposed to tensing up against it. Obviously I told her if the pain was too triggering and I couldn't get my head around it, and she would back off a bit. But with every session, I became more familiar with the idea of the pain not being damage, and the practice got better. Making that a practice during PT created a different kind of trigger when pain would flare up at random times during the day - instead of automatically tensing against it, I would automatically relax and melt. It was like a Pavlovian signal.

3. I noticed you using the phrase "broke it up" to describe the work on your trigger points. Maybe you could consider different language to describe what your PT is doing. That language kind of implies that there's something in you that needs to be destroyed. Also it implies that she's the one fixing it. But really, she's just providing the pressure and you're doing the practice of relaxing and melting into it. She's giving you an opportunity for gentle, carefully calibrated pain so you can practice not being afraid of it. I really think that's most of what pelvic floor PT is. Practicing with the pain so it doesn't tense you up. Of course there is also stretching, but the core of the work is in reframing the initial pain signal. So what other language could you use to describe the work that makes you the primary actor and that sounds more healing than destructive?

And if you're trying all of these things and nothing is helping and you're just frustrated, I've been there too and can relate. I thought I was all better until I had my baby and tore my perineum. The mental trauma from knowing I was wounded in such an intimate area, and the pain of scar tissue on the perineum, tensed me right back up and I had a harder time healing than before (especially because now there was a physical injury to fixate on). PT didn't work as well that time and I felt permanently broken. Sometimes I still wonder if I am. But plodding along with the TMS practices has eventually helped, just slower than I would have liked, and not without setbacks. I've noticed that setbacks normally mean I'm about to burst open a new horizon in my self-knowledge and mind-body awareness. I hope that's what this will be for you.

 

i know what you mean about dropping the pelvic floor. i constantly find myself in a sort of a "kegal" or sucking upwards in the butt area, which i once heard an author describe it as "tucking your tail between your legs" which many pelvic pain patients do, which might be going back to a primitive stress technique that animals did where you're literally tucking your tail muscles between the legs during times of stress or anxiety. I"ve never had a flare this long (5 weeks) or this bad. i'm taking pain pills by the handful (yes i know, it's not healthy) but i'm barely able to work my job right now, holding back tears. There's anxiety pressure in my chest. I think i need to work on relaxation and breathing because my anxiety level is pretty high. The thing that seems different about this flare is that there seems to be little to no breaks in the pain. Before this, i'd have nearly no pain in the mornings, then it would build. Or i'd have breaks in the pain when i'd be doing distracting activities. This is unrelenting. I think only pelvic pain patients can appreciate how horrific pain in the rectum, perineum, genitals, urethra, etc. and how it seems to give you the chills and raise your heart rate. I went to a support group and one of the women (a PT) went to a huge pelvic pain conference and one of the newest treatments on the horizon is the possibility of stimulating the vagus nerve. Apparently the vagus nerve controls whether you're in fight or flight mode, or rest and digest mode. Chronic pain patients tend to be in fight or flight mode which frazzles the nervous system. Deep breathing and meditation stimulates the vagus nerve.

 

Hi Nicole,
Been there, done that (triggerpoint therapy), before and after I discovered TMS. It didn't help me much, sometimes even made things worse, and the effect was short term at most. Even when I was pretty convinced about TMS as the explanation for my pain, I tried to speed up things by selftreating some of my tp's. That also didn't help, as it simply allowed me not to focus enough on the real cause.
I finally decided to stop focusing on tp-treatment all together and shifted it completely to the psychological ball park, only then things started to slowly improve for the long term. Nowadays I only use my tp-knowledge to see if a new pain is related to a tp or not; if it is, it strengthens my belief that it is TMS and then I simply stop and let it be, I don't treat it. The other times I use it is when my unstable knee (misses a ligament) starts to lock up; pressing on the right tp sometimes gives enough release to finish what I was doing.
I think your PT is wise and knows why tp's exist, but I see no point in treating them unless you simultaneously work on emotions and relaxation. And even then I have some doubts if it is wise to do, because your brain will still connect your relief to an intervention by your PT. You might think I am wrong because you experienced significant relief from tp-therapy, but I expect that it won't last in the long run or a new symptom will start to appear. Sorry for the nocebo there , it is just that my personal experience with tp-treatment that it is not really beneficial in the recovery process for TMS related problems and can sometimes even slow down the process of getting better.
But, do keep us updated, you might surprise me. No sarcasm meant, just hope you find a way to feel better and that road is different for everyone.
take care!

ps just started reading about the vagus, interesting stuff, thanks for mentioning it.

 

My experience jibes with Gigalos's. I used to have chronic low back pain. I did the trigger point thing more than half a century ago when Janet Travell, President Kennedy's physician, came up with the theory and popularized it. It did not help. What helped was when Sarno later published Healing Back Pain, and I read it and applied it.

Early this year I fell from a bit of a height and (freakishly) my right shoulder blade took the blow. The injury gradually healed and the pain went away. Recently, however, the pain returned, so I saw an ortho doc earlier this week to see if I had reinjured myself. He diagnosed a trigger point problem and offered to send me for massage. I declined. I want to think psychological instead.

The leading critic of the trigger point theory is Australian rheumatologist John Quintner. He says that just because there is a muscle knot does not mean that is the cause of the pain (the post hoc propter hoc fallacy). He believes that inflammation of a peripheral nerve causes reflex motor discharge sufficient to produce a palpable muscle contraction (basically the opposite of trigger point theory) and also to send input to the brain that induces the brain to cause pain. If he is right that the root cause of the pain is peripheral nerve inflammation, then massaging or needling or other treatment to "break up" the muscle contraction is not going to fix the problem. At most it would have a placebo effect. I don't think Quintner offers any treatment suggestions. But Australian physical therapists David Butler and Lorimer Moseley (who in addition to his training as a physical therapist has a doctorate in neuroscience and is a leading pain researcher) have a pain treatment approach that could apply. If your physical therapist is open-minded about trigger point theory and willing to accept the modern pain science proposition that it is the brain--not muscle imbalance or weakness--that causes pain, you might suggest to her that she get a copy of Butler & Moseley, Explain Pain 2nd. edition 2015 (not the first edition). If that book makes sense to her, then she might want to move on to Butler & Moseley, Explain Pain Supercharged (2017), which is written primarily for physical therapists and contains much advice about how to apply their approach with patients. If you want to pursue this on your own, you might try Butler & Moseley, The Explain Pain Protectometer Handbook (2015).

 

I just want to chime in. The drop and breathing to relax the pelvic muscles is important . during the day, not just as an exercise. I also had PT and trigger point internal treatment. It can help a bit. But in my experience the nods come again and again if one’s mind doesn’t change. I found that cold laser (only outside on piriformis etc) worked very well. But the same, if you don’t change your attitude your muscles won’t either. I still don’t go by bike. I had the most horrible flare after biking with a new bike. The saddle directly pressed the muscles where I can localize pain. I will try again with a new saddle, but I will do it slowly.
My advice: look into your emotions, relax, take a hot bath with Epson salt. And keep calm.