Pelvic Pain, Feeling Hopeless

[Northwood]

felt totally fine (except sucked at actually getting the ball through the hoop) - in the entire time I was shooting around nothing hurt. This is trotting back and forth, chasing the ball, twisting, turning - no back pain, no pelvis pain. Yeah my legs feel weird and tight, but it didn't hurt. It was also a gorgeous fall day, and just being outside is a tonic. So that was like "wow, how is that possible?

Evidence, dog! Write that down. Congratulations! I've found that going out and DOING things helps educate my brain and get that "un-learning" going, perhaps better than just about anything else. In the mornings now, I don't lie on my bed to read a bit before work. Instead, I sit in a chair. I can FEEL the effect on me, communicating to myself that the chair is just fine; I don't need to lie flat on a bed because my back can't handle a chair. It's good to keep tabs on those "wins." They go a long way to building a case that our pain is brain-centered, not structural. Such experiences call us more and more convincingly away from the familiar droning noise of our habitual assumptions.

 

[Northwood]

So I’m recommitting to addressing this psychologically. I refuse to go down the dark path of medical mad science. I got lost but thanks to all who held my hand these past couple of days.

Nice to hear your resolve. How's it going? Have you been able to find that sweet spot of accepting your symptoms as TMS and then doing something that SHOWS you (in whatever tiny way) that the insight is true--even if you're not feeling super-great at that moment? Are you able to keep the pressure off of yourself and give yourself a pat on the back now and then?

 

[tmstraveler]

I wish, @Northwood. I’m actually really depressed at this point, clinically so. Three years deep and currently in a hole. The depression is the most dire part and I’m sure contributing to symptoms. “Just live your life” seems far away right now. I *know* this is TMS but I feel like I can’t get a handle on it. The symptoms are so distracting and now I’ve lost interest, joy, all those important elements to healing. I’m scared. I was never like this before. I’m a joyful, humorous person by nature but this has sapped me. I hate saying it here in this place of hope, but I am at a very low point with this. I gotta pull out of it.

It’s clearly emotional. It’s clearly learned. And yet I’m not sure how to deal with it. @Dorado hit an extremely low point and rose like a phoenix. I pray that I can rally like he did but for now, I’m feeling stuck.

 

[Northwood]

You referenced that you're working with a TMS coach & a PT. Has the therapy route been one you've tried, for depression, life issues? In my case, I found that path extremely helpful. Spent over a year now with a good therapist, unpacking several painful themes that I've continually cycled around with. In my case, EMDR--with the right therapist--has made a significant difference. The TMS was a coping mechanism; the stuff I didn't know how to deal with--parental relationships, sexuality, women, self-loathing--went into my physical body. So the therapy, in conjunction with TMS work, has helped me untangle things. And I get what you're saying about being sapped, to feel you've lost your joy. It's a demoralizing and "scary" state. I think it's good that you are self-aware, that you have enough remove from the emotional pain to be able talk about it from a little distance. Our humor and joy, all that, isn't lost, so much as obscured--momentarily inaccessible, for sure--but not "lost" like something of value dropped irretrievably into the ocean. I wish I could say just the thing to point you to peace at this moment, but short of that I'd say keep doing what you can to let go of thoughts about the future or about what "should be" and is not, including any struggle with not being in the present moment enough, etc. When it gets bad for me, I'll sit and listen to Bowie & Mercury sing "Under Pressure." Reaching out is good, too. My guess is that you know all of this. Still, it helps to see it and hear it; every moment's a new moment with whatever we are encountering--and while it may seem it, from that perspective we aren't fundamentally "stuck," so much as having a "Ground Hog Day" experience that we are making our messy way through. Alan Gordon says, "Trust the Process." When I'm where you are, I want to smack Alan in the face. But that advice has got me this far, which is an improvement I'm very grateful for. I'm wishing you well right now...

 

[tmstraveler]

Thanks @Northwood. This is my first real dance with depression. I am reaching out. As much as it’s hard to see my path forward, I’m using all my resources to keep from slipping away entirely. It sucks because pain thrives on negative energy and I have so much of it now. Scary stuff.

 

[tmstraveler]

Originally posted this separately but I don’t want TWO sad sack threads on this very motivational forum:

(Sorry in advance for another downer post.)

God damn it, everybody. I really fell off. I hope those Beloved Grand Eagles who still hover above can relate to this darkness despite having made their way through.

A few months ago I was mentally penning my success story. Now, I’m alone, depressed, and my pain is much worse. I realize those things are all related but now I need to solve my problems in order of urgency because this is a bad situation. I need to get past it if there’s gonna be anything to save.

I love this community and I’m so proud of the very real successes here. I don’t know if you realize this, but it’s BAD out there on Google. Confusing and scary and full of such predatory bullshit. Last night I literally stayed up until 3 reading about a woman who claims her new therapy can cure chronic pain in 10 minutes. How embarrassing. I’m not thinking straight. My depression and anxiety sent me into that dark place all week. And that fixation has made me *sicker.* It’s a terrible cycle.

But I’m alone right now and all I want to do is read about people who heal. I know that keeps me trapped. And still I have the compulsion.

I’m afraid I’m losing my way back, even though my body is not injured. It’s definitely not sleeping though. And barely eating. How did I let it get this bad? I’m so far from living with joy and purpose and now I’m just worried about my survival. How can you heal from THAT place?

I don’t want to die. But I also don’t want to burden my friends and family with my pain and my depression. I had it figured out for a bit and now I’m just a sad presence. I have to make peace with that because I don’t think I can just snap out of it.

So it’s got to be about that. I’m gonna go to my parents’. It’s not ideal but I need some human contact and to know I’ll be eating at least. Recovery might have to wait. Or pause. Or slow down. Or something.

I hope this resonates with someone in a better place. I was doing well. I really was. But I slipped and that slippage gained its own momentum. I hope it’s okay to put my healing on a kind of hold so I can just survive. I really hate that. The perfectionist in me HATES that, but if I just stay home alone, sinking deeper, it’s not going to be good.

I trust the people here. I trust your stories. Please tell me now if it’s all bullshit because I’ve put ALL my hope on mind/body healing. I know I can overcome this. But right now my pain is getting me in ways it hasn’t before (or at least not for a long time) and I think I might just need to go into a protective crouch until it feels right to continue.

Does that make sense?

Am I retreating? Am I losing? Am I signing up for more torment? These are the fear thoughts. But you can’t heal if you slide over the cliff. So I’m starting there and hopefully it’ll take me less time to get back to thinking about that success story.

Thanks, folks. Still in it. Just feeling very vulnerable and tired. It’s a process, right?

 

[tmstraveler]

Well I talked to my doctor about sleep with regards to pain and she prescribed gabapentin. I have no idea if this is good for me. All I know is I’m not sleeping and my pain levels have been high for weeks. If there’s something that can take it down, don’t I deserve that?

If this isn’t learned pain, I can’t imagine what else it would be and yet I need to be able to function. Hope it helps.

 

[Cactusflower]

Dear @tmstraveler
I so feel you!
I had one better week, one taste and then slowly back to more strong symptoms. I struggle with the fact I found a physical therapy that describes my unusual symptoms, and fully understanding there is an emotional component to this. I have a tms coach who is very helpful but is not a psychologist. I have some depression, a lot of fear and some awareness of emotional issues.. but still I struggle. This week I had my first appointment with an ISTDP therapist. Not easy! But I need it. I need to at least explore this avenue.
Do you connect well with your tms coach? If not, there are many others. On youtube there are examples now of a ISTDP session as well as EMDR sessions (helped my friend get over his TMS without even knowing it was TMS!) - see if you think you’d like to try a method. Very different approaches to a similar goal.
Be gentle with yourself! Reading your post I can sense the tension and frustration. If pt keeps you feeling too physical right now take a break. You can go back to it! You can take a break from tms work too! We think so rigidly when we come to this place, intellectualize everything to repress from feeling it (or all of it). Lack of joy? I’ve been a joy killer for awhile now. Why? Who knows!
For the last month I’ve been plugging through a BORING fiction book. Why? Because I forgot the joy of a GOOD book. So I started a new one. A good one and it totally reminded me that I forget to seek the joy and tend to wallow in the mire. I also got cupcakes too because they are joyus!so this resonates with me even tho I’m not in a much better place but I am trying hard not only to feel a variety of feelings but also to find those that have me stuck and to think about how unstuck people operate. Keep hoping, but stop putting ALL your thoughts in it. Start by distracting yourself for a minute today, then 2 minutes tomorrow. (Best advice I need to follow) learn to be ok with the slowness, the time it takes. The idea is to calm the nervous system to reduce anxiety NOT to reduce the pain. Anxiety is the issue, pain the side effect. Depression is a form of anxiety

 

[hawaii_five0]

Well I talked to my doctor about sleep with regards to pain and she prescribed gabapentin. I have no idea if this is good for me. All I know is I’m not sleeping and my pain levels have been high for weeks. If there’s something that can take it down, don’t I deserve that?

If this isn’t learned pain, I can’t imagine what else it would be and yet I need to be able to function. Hope it helps.

Sleep: In his book "Back in Control" Dr. David Hanscom, who writes about his own difficult journey through chronic pain and anxiety and who now helps other people/his patients through it, says being able to get decent sleep is a cornerstone to getting better. It is difficult to make real changes without adequate sleep. He has his patients take meds if needed, just to get their brain in a better place, with the understanding of weaning off the meds later. He has a kind of blog on here I think (?), also a separate web site. I know people on here have quite a range of feelings about taking Rx meds, but my view is that if you are in a really bad place your brain may need some help to remind you of what it feels like to be out of the anxiety-pain loop, even if for only a short time. Different meds may work differently with different people, so talk to your doctor if gabapentin does not work well for you. I am not trying to push meds on you, and ideally they are used sparingly.

Are you able to do much/any exercise? I was never a swimmer, but I have found that swimming is the one thing above other kinds of exercise that make me feel the best (I also have pelvic as well as low back pain, all anxiety induced). For an hour or two after a swim I feel quite good, normal, my old self. It's odd, because I don't really get that with my former go-to exercise of cycling (although I still try to do some cycling too). I guess the water helps the muscles to relax, combined with the aerobic effect of increased seratonin, etc.

James

 

[tmstraveler]

Thanks, James. I’ve been exercising a lot in fact, pushing through discomfort and pain much of the time. There’s no doubt that anxiety makes things much worse, but that doesn’t rule out a physical issue unfortunately as they will tell you the pudendal nerve is wired into the sympathetic nervous system therefore stress creates pain and pain creates stress, in the same way it’s accepted in TMS, just from their more biological view.

Look, I have really bad nerve pain. I have all the symptoms of PN and it’s in my sensitive back parts. It’s a miracle I’ve made it this far to be honest. I have no idea if it’s repressed emotions and stress driving it or some kind of physical inflamed nerve or both. I know my life has slowly become agony and I have to make choices about how to save myself.

TMS Wiki has stories of miraculous (albeit lengthy) recoveries. I’ve really tried to go that route, push through and all that. But the other medical side says I’m only making things worse by sitting and living my damn life, and their prognoses are terrible—people muddling through with injections and surgeries and mad science.

It’s an awful place to be, folks. I want to come back. I don’t want to thank Dr. So-and-So for burning out my nerve so I could have 20% pain relief and never feel right again. But how the hell am I supposed to know what to do?

I’ve tried to just live and currently I’m in tons of pain, enough to drive a person off the deep end. I have no idea what feels right anymore. Just sitting when you’re on electric fire doesn’t *feel* right, does it? Surely the body is telling me something is wrong. “Stop doing that!” And yet, the idea that just sitting is dangerous feels ridiculous too.

I had no idea I was in such a dire place. I have a lot of thinking to do. I sympathize with all who struggle with the path forward. Mind/body is real, but I wonder if it’s all powerful. I’m in awe of anyone who told the doctors to fuck off and then healed completely. That seems superhuman to me.

But right now I’m taking drugs to get a few hours sleep with constant pain. At the very least, I need help bringing that down. God. How does a person know it’s TMS? How does a person ignore the warnings, ignore the pain, ignore the lack of sleep and the fear?

Sigh. I don’t want to lose myself in this, go to the dark side. Get cut to pieces and hobbled for life. But I also can’t sit and watch a movie without being in crazy crazy pain. Or lay down. Or sleep. Outcome independence seems very far away in that place.

I want this to be TMS, I really do.

 

[Northwood]

gabapentin

Several years ago, a neurologist put my on gabapentin to address persistent nerve pain in my foot. I was supposed to take a lot of it. The prescription came as a couple of large bottles, and I was told that it would take time--a few weeks?--before it impacted the pain. There was no end date regarding my taking it either. None of that sat well with me. I took it for a week or so. I found it left me feeling pretty dopey. I decided I'd rather be clear-headed with the foot pain and not be putting that drug in my body for months and months. So I ditched it. That's my gabapentin experience. Years later, btw, I still have the foot pain--after surgery, injections, orthodics, PT work, acupuncture, and lots and lots of different types of shoes. The pain comes and goes. Treating it as TMS hasn't made it vanish yet, but it's helping me give it a lot less fear and attention. So the symptoms aren't as bad because I'm removing a layer of emotional suffering over having a condition that I can't get rid of by force of will, try as I might.

Mentioned I was reading Gordon's The Way Out. Just this morning, I read a section called "When Your Pain is High." He says, "When you have high levels of pain, your brain is feeling a lot of danger. That means it's pretty much impossbile to have a corrective experience." For that reason, he advocates for doing things that mitigate the pain--appropriate drugs, massage, a hot-pad--again, not to "fix" the problem, but give a little relief and turn away from fighting the pain, which only makes it worse--fighting and obsessing over it--because that heightens the danger mode and keeps the pain cycle revved up, including the natural generation of despairing thoughts, that in turn heighten the fear. So, a little relief. And finding whatever way you can to take an exit ramp off the cycle. Self-soothing. A few messages that Gordon suggests: "This is temporary. I'm going to be okay." "I'm safe, and my body is fine." "My brain thinks I'm in danger, but it's just a false alarm." "Trust the Process." I might add the old "Fake it 'til you make it." And it's okay to do a shitty job at faking it. The point is to bend your thoughts in that direction. The body will follow where the thoughts lead.

 

[tmstraveler]

Thanks @Northwood. I think we all have permission to use whatever we need whenever we need, provided we take ownership of our healing. Whether it’s gabapentin or something else, I’m going to add a drug to my regimen for now because it’s just too hard to raw dog it. It’s a valid approach that has worked for many (even on this forum). The nervous system has to come down, and mind/body work is crucial to that. But as you said, sometimes we need help when the pain gets too bad.

What *doesn’t* help is going off the deep end in an attempt to be pure!

Anyway, I know I’m no fun lately and I appreciate you talking me down. Thanks.

 

[Pauly95]

Coming back to say sorry to be that guy, but it’s where I’m at. I’ve been better and I have to remember that my body knows how to be better. I’m just having a hell of a time. Love to you all.

Hi, tmstraveler,
I'm sorry to hear you had to go through pelvic pain. I hope you feel better soon as a few years ago, my wife was experiencing these horrible pelvic floor symptoms. Her main issue was an excessive urge to pee. She was driven to urinate at all hours of the day and she didn't feel any better when she did. I remember her staying awake at night and she's had constipation and bladder difficulties, as well as discomfort. The discomfort started in the pelvic area near the bladders. My wife often complained that when she tried to contract the muscles in her lower abdomen to go to the toilet, and if she keeps pressing, the agony worsens and goes a bit towards the rectum. Physiotherapy treatment was recommended by a friend who had similar issues and was helped by a physiotherapist. She began attending sessions with the PT as she had been trained specifically to help strengthen or repair pelvic floor muscles. Her pelvic floor physiotherapy included exercises, manual techniques, and movement coordination in order to relieve the symptoms of pelvic floor dysfunction and assist the muscles to work properly. We saw a difference after each session, and she is now completely healed!

 

[mlb6556]

Hi there, I don't know your story and your path of pelvic floor pain but it is more unique that arm pain or leg pain. It is pain in an areas that is super sensitive and of course it is in an area not easy to talk about. I don't think it is as easy to convince yourself that the pain is in your brain. The curable pod cast has an interview with a pelvic floor PT Evelyn Hecht I suggest listening to. https://www.curablehealth.com/podcast/healing-from-pelvic-floor-dysfunction (Hope for Healing from Pelvic Floor Dysfunction). The focus is more about women but of course men can have it as well. Evelyn has an online program just for pelvic floor pain if listening to the podcast leads you to want to do more with her. Good luck.

 

[Dorado]

Thanks @Northwood. I think we all have permission to use whatever we need whenever we need, provided we take ownership of our healing. Whether it’s gabapentin or something else, I’m going to add a drug to my regimen for now because it’s just too hard to raw dog it. It’s a valid approach that has worked for many (even on this forum). The nervous system has to come down, and mind/body work is crucial to that. But as you said, sometimes we need help when the pain gets too bad.

What *doesn’t* help is going off the deep end in an attempt to be pure!

Anyway, I know I’m no fun lately and I appreciate you talking me down. Thanks.

There’s nothing wrong with adding to your regime - whether it’s Gabapentin, meditation, and/or something else - for some extra support right now.

It IS normal to feel pain so undeniable it’s all you can think about. I’ve been there. I did need a distraction - even if it was a placebo - for a little bit.

How are you today? How are your emotions in general? How’s life?

 

[tmstraveler]

Hey @Dorado. Nice to meet you. You’re kind of a legend.

I’m okay. It’s been tough (obviously). My sleep has been garbage and I’m locked in an obsessive cycle of researching. I realize I need to break out of that and am making small steps. I wish I had more going on to distract me but this pain, it manages to pull focus as it’s there all the time. And recently it’s spread—not in a symptom imperative/you’re crushing this kind of way, but more in a you’re locked in fear/obsessing let’s do more of this kind of way. Scary. But it at least shows me how this first started.

I’m very sensitized. The whole pelvic area is clearly overly sensitive. Emotions affect it for sure, but its current resting state is to take small sensations and make them BIG ones. I’m hardly the first person here with that story, so I know with practice it should subside. But it’s tricky. Temperamental. Doesn’t want me to have any peace it seems.

I refuse to give in. I just wish I had a way to bring this down from the outside (hence the drug discussion). It would help but no one’s gonna do this for me. I realize that I either choose to live or choose to die. Lately I’ve been fading after so much progress. Lost weight. Stopped contacting friends. I don’t want to go in that direction. And I know I don’t have to. I just am looking for my own method. Still have not found it yet.

I’m inspired by your recovery, knowing how low you sank. We can always come back.

 

[Laura Haraka]

No doubt it’s a whackadoo nervous system at play, turned into knots by a combination of emotional and situational factors. This is such an inspiring and powerful community and I honor everyone here. I guess I just wanted to confess my struggle and admit that I need to make adjustments. Feels right. Feels honest. But the core concepts on this forum are the correct ones.

I just read @plum ’s story. Incredibly compelling and a reminder that there are multiple paths to finding mind/body peace. My work continues.

Hi
Been reading your posts. I have recovered from pelvic pain. If you want any tips I would be happy to offer some.
Laura