What else is there - Seriously

@eskimoeskimo I guess the only question remaining is whether you are being honest with yourself? And I mean that kindly and from a place of solidarity. I haven't experienced the healing I hoped for when I discovered this forum and Sarno's work. But I have many complicating factors, one of which is an impatient personality. I can't tell you the amount of times the words "I've tried everything" have come out of my mouth. The truth is I haven't given anything a proper chance, ever. I haven't had the faith or commitment required. I may not even have it now, but I can sure as hell keep trying. I suppose that's a question only you can answer for yourself. And regarding moving on from treatment if the TMS "therapy" hasn't worked... perhaps that's a good idea. Where would you go from here at this point out of interest? Is there a medical avenue you haven't explored?

 

That was the original purpose of this thread. I was asking for suggestions for other things to try, because I’m out of ideas.

 

@eskimoeskimo But you are posting in a TMS forum... so something is bringing you here. If you had truly ruled out TMS as a possibility, wouldn't you be on a health forum somewhere or making an appointment with a neurologist or pain doctor of some kind? Have you seen a doctor and had a good range of tests? Apologies for not reading the full thread as there are many many pages... I've only been following recent updates.

 

Maybe get back to traditional pain management and functional medicine stuff?

 

No apology necessary. I guess I posted on here looking for ideas from people who are at least familiar with TMS and so have a deeper understanding of all the things / perspectives I have tried. I have done all the traditional mainstream stuff. MRIs, PT, massage, strength training, swimming, acupuncture, foam rollers, chiropractors, osteopaths, pain meds, antidepressants, steroid shots, lidocaine patches, trigger point injections, yoga, etc etc etc. I don’t know what I’m looking for. I’m just desperate.

 

I can see from how lengthy this thread is that I'm not going to provide you with an answer that you are satisfied with, and to be honest you're probably the only person who can do that now. If you forgot you ever heard about TMS, Sarno and all these techniques... what is your gut telling you? What do you need? Personally I need rest and mental space. I don't need anybody to tell me that, I know it in my heart but it took me a while to sort through the information, tools, techniques and programs to realise that it's more about what you're trying to achieve than what you are actually doing. Now I need to work out how to achieve those states without putting too much pressure on myself. What is your gut telling you? Through the noise...

 

I agree - eskimo, when I got involved in this thread again, I didn’t want to drown you with the same exact suggestions I’d provided last year because I understand you’re looking for something different. As someone who was diagnosed with OCD as a child and then again in my twenties (because back in the 90s many people thought a kid would “just grow out of it”), I know what repetitive/obsessive thought loops look like, as well as how reassurance seeking evolves. My mom said she was able to predict when I was about to enter a new “rough patch” because I would start repeating myself over and over again. We talk on the phone every day and she would say, “You have told that same story/asked me that same question a dozen times since we got on this call. I’m at the point where I’m about to get your father and we’re going to bring you home for a few days.” On a forum where many of us have dealt with repetitive/obsessive thinking, I worry that repeating myself encourages similar thought loops and/or reassurance seeking in others after they say it’s just not clicking multiple times. I’ll do my best to fully answer questions and explain myself, but I won’t continue going back after that.

So I hear you and respect that. And I also wonder if maybe what you’re dealing with now involves a repetitive thought loop, but we’ve talked before about the therapies and treatments you’ve gone through. Miller brings up a good point about space and taking time for yourself. For me, that’s where the trivial “let me go get an Earth cake pop from Starbucks and watch an old school concert on YouTube” comes in. That’s my baseline for disconnecting from my troubles for just a moment and experiencing some sort of basic enjoyment that makes me feel like a human again, but I can’t establish a baseline for anybody else. You know my history with resources such as CBT, reframing and emotional balancing techniques, etc., so I’ll skip over that. Ultimately, nobody can focus on this stuff 24/7. (And when I did, that’s when my mom and dad would take a drive over to my flat.)

 

My gut is telling me it's hopeless

 

Hi @Dorado. I certainly agree that my thoughts, questions, etc are extremely repetitive and obsessive. The first time I realized this was kind of an aha moment, and for a time I sought treatment for OCD exclusively - thinking that was at the root of it all including the pain (sensorimotor OCD). It may have even been you who turned me on to Ali Greymond. I hired her to be my therapist for some months, multiple sessions per week. At one point I think I was talking to her every day. When that didn't go anywhere, I checked into an OCD inpatient clinic for a few months. Unfortunately that didn't help either. As you know, resisting the compulsions such as reassurance-seeking (which may well include visiting this forum and asking the same questions) is extremely difficult, but then there is supposed to be some eventual relief as the brain gives up the ghost. But that never happens for me. It's hard and stays hard. I don't know why that is, or if I'm doing something wrong. It all just gets more confusing and I feel like I've run out of things to try.

 

@Dorado

It's true that every second of every day all that I want to do, regardless of who I'm with or what I'm doing is ask:

1. Why does my neck hurt?
2. Is there something wrong with it?
3. Is it psychological?
4. Will it ever stop hurting?

Again and again and again. It's never enough.

 

I've probably asked my Mom, and a few of my friends, those questions tens of thousands of times.

Just to be clear, when I was thinking of this more exclusively in terms of OCD I recognized that all as reassurance seeking behavior and did cut it out for a long time. Now, I don't ask much because the answers don't ever satisfy/reassure me anymore. I've heard it all too many times. But again I never experienced any eventual relief from cutting out those behaviors, the urge to know those answers never diminished, and the symptoms only got worse.

 

I think I do have OCD, but I worry that I also have incurable chronic pain (and that because I have OCD I'm extremely ill-equipped to be able to handle it). I guess most people with OCD think they've got OCD but that their "thing" is real ie additional. It's especially tricky with this situation though because chronic pain is not widely thought to be a possible presentation of OCD, even with sensorimotor OCD. Sensorimotor OCD tends more so to regard normal functions feeling not normal eg heartbeat (an obsession which I do also have), blinking, etc. But nobody talks about pain. So there's a lot of room for me to doubt that the sensation that I'm feeling in my neck can be lumped in with sensorimotor OCD.

Ugh even this analysis is probably OCD. It never ends ...

 

“”It's true that every second of every day all that I want to do, regardless of who I'm with or what I'm doing is ask:
1. Why does my neck hurt?””

just for interest Eskimo have you had a good look at curalistic.com and his Facebook page? marls

 

I haven't. I'll take a look. Thanks. What do you think about the trigger point stuff he emphasizes?

 

He knows his stuff Eskimo and is certainly passionate about helping people. The Facebook page is interesting re people healing. Have a gander at his symptom list for an idea of how you would fit in with it. I like that the trigger point massage feels self-soothing. And his emphasis also is strong on breathing, sleeping and meditation. I find it snuggles in smoothly with my version of TMS self-care.
I reckon give it a go, even maybe do the whole 9 yards of interview and free treatment- at the moment you’ve got nothing to lose and a hell of a lot to gain. cheers marls

 

eskimo, you know how CBT helped me greatly with OCD, a label I no longer use at this point in my life because it’s essentially gone, save for a very rare moment and an incredibly minor instance here and there. I’m grateful to have eventually found a therapist who believed in the ability for many people to heal from OCD, as opposed to someone who uses the one-size-fits-all approach to mental health, saying that we ALL - without any exceptions - have an “incurable, chemical mental illness that requires lifelong treatment such as medications.” I have a social worker friend who loves to post those messages on social media and I don’t think she realizes that it’s harmful because it’s just not the case for everyone. There’s no shame in having a chronic condition or taking medications forever, but that’s not always true, and our lack of accurate information holds everyone back. For me, perhaps I was predisposed to OCD, but my family and I truly believe it was a response to a lack of control in my childhood, which I have sincerely forgiven and moved on from.

I know you’re not interested in the CBT approach. And that’s totally okay! I would never force anything on anyone, and different things work for different people. The reason I mention this is because believing in healing is important, regardless of the approach you take. But we’ve already discussed this.

You may already know that I believe people with structural pain can often manage it by “retraining their brains to beat pain” (an article I’ve shared a lot in the past) or other tailored solutions. Mayo Clinic actually introduced me to the idea of neuroplasticity after I was diagnosed with Ehlers-Danlos and comorbidities such as dysautonomia. When this finally clicked for me back in late 2017, I finally saw that I had nothing to lose, whether my pain was a result of the mind-body connection (“TMS”), structural, or a mixture of both. It should be noted that by that point, I was on a medication that didn’t really work but acted as a placebo, and I had gotten back to living life. My job was great and I was constantly going out with friends, working out, starting new projects, etc. Wonderful distractions.

Repetitive/obsessive thinking and reassurance seeking are why well-intended members who will respond to you for dozens upon dozens of pages need to be careful - they are amazing people, but don’t realize that some of us are hooked on it, even if we don’t want to be. It’s interesting because I’ve never truly gotten addicted to food, running, sports, alcohol, cigarettes, sex, or whatever... but I was fully addicted to reassurance due to an inability to accept uncertainty. I’ve been there as both the sender and the receiver, and I respectfully avoid reassurance seeking now. Even as a receiver, it’s important to break the habit of wanting to fix everything for everyone because you know how painful uncertainty is.

I promise to not engage in reassurance seeking with you because it’s not going to help. My mom and best friend know how to identify these patterns in me, and while I haven’t attempted to start it back up for some time now, they learned how to say, “I love you, but I’ve already answered this question multiple times, and my answer will not change. Let’s talk about [insert another topic here] instead, or I’ll call you back/see you tomorrow.” I eventually had to learn how to be my own rock and it’s far more fulfilling.

My answer will not change: I believe that you can have a fulfilling life and it is possible to find something you enjoy. You’ve written about reading, your parents, and other positive things. And you belong in this world as much as anybody else.

 

Those repetitive thought patterns make symptoms worse, so relaxing shifts your attention so your body can adapt.

 

Ive found asking different questions can help me get out of repetitive thought loops with a bit of reluctance.

 

I’d like to add that many of us have had 24/7 (or nearly 24/7) pain that felt absolutely crippling. I couldn’t even grip my cell phone, per my cat, or feel my bed sheets. My limbs were turning purple and yellow from Raynaud’s, which I once posted (now deleted) photos of on these forums back in 2017. I had a nervous breakdown in the ER at University of Chicago and they debated sending me to the psych ward because I was in such despair, but they ended up telling me to go to Mayo Clinic - even they were puzzled by my skin.

And I was previously on a sports team in college where I had fast balls whipped at my face and scars on my knees that I carried around like trophies! My sister used to call me a “jock,” within my team I was in the top percentile for leg strength, some college friends would ask to feel my stomach muscles at parties, etc. So pain and debilitation was a humiliating experience for me. I went from feeling powerful to weak and like I was going to lose everything. Also, I do have a structural condition - Ehlers-Danlos that causes dysautonomia and mast cell activation - and I could have totally just threw my hands up and said screw it.

I say this because people sometimes seem to think that it’s impossible to go on if your pain is severe. People like Miffy who recovered from CRPS or Ozanich who was at one point dealing with a paralyzed limb have gone through hell and back, and made it out. You can do this even with nightmare pain.

But I’m living a fantastic life now. I am a normal human being and not every day is joyous, but I’m so glad I was born and continue to be alive.

One other thing to be careful with: constantly rereading posts or reaching out to experts like Ozanich, Schubiner, etc. Those of us who are obsessive reassurance seekers go beyond arming ourselves with knowledge. Balance is so important for us (and everyone, really).

 

Thank you @Dorado, for trying so hard to see me and work with me in this way. I appreciate that you understand the OCD aspect to this, as I feel it's central to my situation and perhaps not that well understood generally in the TMS community. Maybe not everyone with TMS is like this, but for me the daily reminders, evidence sheets, self-reassurance stuff dug the hole way way deeper for me. And from an OCD perspective this makes perfect sense. Maybe this has something to do with why I see these types of recommendations less and less, even here.

Of course, I want to ask the same questions again. And I want you to tell me that there's nothing wrong with my neck and that the pain can go away. But I know that these answers have never provided anything more than temporary relief in the past, and I recognize that you're not engaging with those questions for the best reasons.

Was there some point at which you eventually no longer felt the urge to ask these sorts of questions anymore? Ali Greymond always says that eventually the questions just kind of evaporate as you demonstrate to your brain that they're not important. This never happened to me and I want to understand why not. Did you become so involved in life that your brain moved on? Was there a moment, was it gradual? Did you have to get to a point that you were willing to live with pain before the brain let go?

Is there a chance that it would be possible to work with this therapist who helped you so much? Did this person help you just with the OCD, or were physical symptoms a part of it too?

Thanks again