Newbie Needing Support

Hey everybody, I’m a newbie w/a TMS diagnosis…..am 60 yrs. old w/a 24 yr. history of either pelvic pain in the form of vulvodynia, pudendal neuralgia, and central sensitization syndrome, or plantar fascitis and central sensitization syndrome in left foot, never both parts of the body at once until last 9 months. Am doing TMS work - my struggle is that I don’t have “flares” - I’m 24/7 at a 7 to 9 (out of 10) in pelvic region without ever sitting. Spinal cord stimulator keeps resting foot pain fairly low but just a teeny tiny amount of walking on a hard surface, such as hardwood floor can shoot that pain high and it sometimes stays high for weeks, even if I stay off it. Needing caregivers to help with a few of my activities of daily living but can’t afford it.(can’t stand or sit to cook, clean, can’t drive to laundromat or stand to use washers/dryers) I don’t respond to pain killers so I never get a break. My days are spent lying down. Also dealing with tremendous loneliness, no friends or family nearby to come visit or help out. I live as a shut in with almost no human contact. I have difficulty imagining working with the symptom imperative and being indifferent to the pain when it is so high 24/7. Hoping continued TMS work and the support of this great community will help me to learn to think psychologically and bring the pain down. I’m really overwhelmed by all of this.

 

@braveheart welcome, and I like your chosen name for its determination to take on something new.

Your situation sounds pretty extreme, but your symptoms sound exactly like those of many members we see here. I have no doubt that you could benefit greatly from awareness of the mindbody connection and learning about the brain mechanism we call TMS, and about the different techniques that can control TMS symptoms.

Can you tell us what you know so far - have you read any of Dr Sarno's books, for example?

 

Hi braveheart,

I found a lot of comfort reading Steve Ozanich's book, The Great Pain Deception. My arms were so weak, I had to prop the book up on pillows. Each night before bed, I would read a couple of chapters. His symptoms were extreme and varied like mine, so his story gave me hope that I could recover too. My healing was slow (you can read the details under My Story). Also, read the success stories on this Wiki. Don't hesitate to reach out to the kind folks on the forums.

I'm sorry you are alone and suffering. Sending cyber hugs to you during this difficult time. Hopefully, having a supportive community on this Wiki will help with the loneliness. Practice as much self love and compassion as you can. Often, we blame ourselves and think we are weak when our bodies seem to be in rebellion. Especially, when that rebellion is painful. Laughter, even a slight giggle, can help take the focus off of pain. My husband and I are watching old episodes of Seinfeld during our self isolation. I had forgotten how funny it was!

 

Hi there,

I've read Sarno's books along with Schecter's and Sopher's. I think I accept the diagnosis, and am very aware of what causes my pain. I'm aware of my feelings but I believe I may "think" them and not fully feel them. And I have difficulty inside myself, as a highly sensitive person, managing my emotions. Not in a borderline personality acting out way but just dealing with emotions. I know my parents well enough to know I was never ignored or not comforted, etc. (although possibly sometimes I was and just don't remember). It's just that we didn't really connect emotionally, is my guess, that I needed a type of comforting, needed made to feel safe in this world and it just didn't happen because of some things that were going on in my parent's lives, plus I think meeting the needs of a highly sensitive child takes a special set of skills, not sure I could do it if I were a parent to one!. As an adult, when things get rough (for example if I'm on a job that's emotionally taxing) instead of dealing with the emotions I'll just quit the job, or get laid off for lack of attendance, instead of dealing with the emotions. And things like the breakup of a relationship totally do me in in a way that wouldn't happen with a person with good self-esteem who could feel safe with those sad emotions. I'm also dealing with tremendous grief for more or less losing the last 2 1/2 decades of my life due to chronic pain, as mine has always been super high. I have just started with a pain coach who gives me great exercises to tap into my emotions. I think my challenges are that the TMS work seems overwhelming. I'm a very left brain, logical person and TMS treatment isn't like 1)first we do surgery 2)then physical therapy 3)if that doesn't work we try nerve blocks. Even this site, as wonderful as it is, is overwhelming to me. It's like information overload for me. Also, the extreme isolation sometimes makes it difficult to stay motivated to do the work, but I think I'm improving on that. Lack of human contact makes me lethargic and more than anything, hopeless. But I am going to stay the course.

 

Sadly, it sounds like your brain has you right where it wants you, which is living in fear and regret and "emotional sensitivity" (which yes, is a TMS equivalent) - to the point where you will stay safely at home and not risk going out into the world. TMS is really just a survival mechanism, which in the modern world doesn't work well, and which in some people goes completely haywire. To escape this, you have got to take control over your brain and fight back against the irrational fears. Which is not easy. But it can be done if you're committed and consistent.

You're willing to stay the course - which is good - but your current course isn't really working, so it's time to make a commitment to something that is more coherent and which leads to growth and to independence from fear.

Did you ever try one of our programs? They're free, and don't require any kind of signup. For you, I would recommend the Structured Educational Program - just one day at a time - or less. Take it as slowly as you need to, but make a commitment to doing it honestly. Among other things, it encourages finding a writing technique that works for you. The most important thing I learned was seeing clearly how my brain tried to sabotage me - trying to convince me to not write certain things down, that they weren't really important enough, and it would be okay to skip over them. I had to literally force myself to write things down even though I really really did not want to, usually out of guilt or shame. You gotta do it.

I'm now a true believer in the power of writing shit down. Not necessarily "journaling" which brings to mind keeping a journal that you go back and read. This is not only unnecessary, but I believe it's very counter-productive, because you're much more likely to edit what you write if you think it's going to become some kind of permanent record. No, my nightly writings are just an unloading of my end-of-day thoughts, concerns, and irritations, in whatever way they come out of my head, followed by at least one good thing that happened, and at least one thing that I'm grateful for. This is all scribbled on scrap paper which is immediately recycled (if I lived with someone I would probably shred what I write, even though it's mostly quite illegible). I have always believed in going back to writing when I'm having a setback, but after many years, I made a commitment to doing it nightly a couple of months ago(?) and thank goodness I did, because it's really helpful, and it certainly helps me sleep better.

If you're resistant to doing the SEP, my next recommendation is to find this podcast: The Cure For Chronic Pain with Nichole Sachs, LCSW. Start with #1 and keep going. You can get Nichole's book, or you can purchase her program online.

Either of these should mesh just fine with the emotional work you're doing with your pain coach.

But you have to do something concrete. Floundering around on the forum hoping to come across the one thing that will fix you is ultimately as useful as constantly scanning multiple news sources hoping to hear something new and hopeful about the coronavirus - it's not going to accomplish anything other than feed your brain's desire to keep you in fear (and I know what I'm talking about - who doesn't, right now?) Believe me, though - you are not alone. Most of the people who continue to struggle are doing the same.

 

Believe me, I'm doing concrete things, I just didn't go into the details of all that I am doing with my pain coach as I was using my initial entries to introduce where I am with the pain and my life situation in general. I am working the SEP program. I don't have the same challenges you do with journaling - I'm not afraid to write anything down, I don't "censor" what I write, etc. What I'm working on is getting the feelings out, as opposed to a journal entry that is simply stating facts about the subject I'm journaling about. And as for getting out in the world, due to the high level of pain my coach has recommended starting doing things at home that will give me a sense of accomplishment. For example, just half-sitting up can make a high level of pain go even higher so I generally lie down, and just watch tv. (Nothing wrong with lying down to watch some tv but it's important that we do things that give us a sense of accomplishment). But just today my coach and I decided I'm going to start doing something like knitting, needlework, anyway, while half-sitting up and remind myself that I am safe, it's O.K. to do this. The beginning of indifference to the pain. From there we may have me try being on my feet 5 minutes in the kitchen fixing a super short meal. So I'm not ready to say my current course isn't working, we are all different. And I appreciate you mentioning the podcast by Nichole Sachs. My coach is going to send me a video by her that covers journaling, the podcast would be a great addition to that! I'm also starting to re-read Sarno's The Divided Mind as it ties into an exercise my coach gave me. One thing I know is that I tend to "think" my emotions, and I have difficulty crying. I remembered that when I'm going through a rough time classical music is really a downer for me so instead of avoiding classical music, before I do my TMS emotional exercises I listen to classical music as it provides a trigger for me to GO THERE with those emotions. Also, I'm not sure but I think when I was having trouble getting my membership here approved you were the administrator my coach contacted about fixing that. I appreciate your speedily taking care of that!

 

This all sounds like progress, @braveheart, and I apologize for having an erroneous impression. And I didn't remember you were the one, but yes - and now I realize that your pain coach is actually one of our favorite TMS coaches! (yes, I'm talking 'bout you, AB ).

Going back to one of the very first things you said:

How about one little thing: rather than worry about what "all of this" entails, perhaps think instead about how your brain WANTS you to feel overwhelmed so that you will remain stuck and afraid. And maybe decide to reject it.

You can do this! Your chosen name says it all

 

Hi HattieNC,

Sorry for delayed response, as I so appreciated your compassion and understanding, it lifted my spirits. I'm excited that you mentioned Steve Ozanich's book, and my coach also recommended Steve's book Dr. Sarno's Top 10 Healing Discoveries. It helps to have support from people like you whose pain is/has been extreme. I will for sure look up your healing story. I never want to downplay anyone's pain, as pain is relative - when I only had vulvar pain 24 years ago I thought it was the worst thing in the world. But I could still enjoy standing to cook a wholesome, healthy, meal. Then when I only had foot pain I thought that was the worst, but I could at least hop in my car and sit to go through Starbucks drive through to get my favorite drink and chat with the barista for a week. But then when I got pain in both areas.....I learned what true physical debilitation is. And it can be hard to read healing stories that say "I read Sarno's book and was almost pain free in two months" or "This activity flares the pain" and a part of me wants to say "At least you're not in horrific pain 24/7". Sometimes it's hard for me to stay motivated to even do the TMS work almost more from the loneliness than the pain. But you are right, we have to find ways to cope, knowing if we stay the course the pain will come down. You are also right about laughter/distraction. I never watched Dynasty in the 80's and am so enjoying it now on my Roku. And, if you want something simple and short to watch that is cute and funny, if you can stream, look up the old Pink Panther cartoons! Hugs to you.