1. Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
    Dismiss Notice

Some info only generates more fear.. And more pain...

Discussion in 'Support Subforum' started by Lunarlass66, Aug 15, 2017.

  1. Lunarlass66

    Lunarlass66 Well known member

    • I am NEVER one to confront or complain and in the rare event that I feel compelled to do so, it's usually something I feel upset or afraid about. ( I've always been a people pleaser and very fearful of abandonment..)
    Anyway, I was reading through the practitioner's blog today and normally I appreciate Dr. Hanscom's contributions to this forum. His background as a "salvage" spine surgeon provides very credible information and it's a unique perspective in that he actually discourages most back pain sufferers against surgery unless it's absolutely provable via mri, cat scan or nerve conduction study that surgery could provide relief.
    I, myself had lumbar surgery 22 years ago and as young as I was (28)I felt I researched my decision carefully, had a second opinion beforehand and even an evaluation by a mental health professional to be as sure as I could of my decision...
    And it was a success, for 22 yrs... This past year, after an unprecedented sucession of traumatic personal loss, severe anxiety and homelessness, I am back in pain... Chronically. And in TOTAL despair. I have tried every conceivable technique to find relief and so far, have had no success, but I digress..
    I just wanted to express a thought in regard to Dr. Hanscom's posts of today. He frequently mentions the potential health consequences of enduring chronic pain and as I read through it, I could literally feel my heart rate increase, my stomach churn, my pulse was pounding and my muscles.. Tense and painful. For anyone, (and many, many people on here are already tense and scared.. And fearful of health issues..) with an aggravated nervous system over such a long period of time, pounding it into people's brains that their life may come to a premature end and that living in pain causes such misery pain and isolation actually CREATES less hope, more fear and more pain!!
    Maybe it's just me, but I actually couldn't read his blog anymore... It triggered such fear.. That I had to take a muscle relaxer and lie down. Is ANYONE else out there as sensitized and afraid as I am?? Another bad day. I don't think I can get any better.. :(
    Last edited: Aug 16, 2017
    Balsa11 and Lily Rose like this.
  2. plum

    plum Beloved Grand Eagle

    Nancy, I promise, you can get better. Right now you're simply sensitised and well-practiced in fear. This is ok. I've been where you are now and I've come through it so I know it's possible.

    I have three main considerations for you.

    1. You have a marvellous imagination. You need to harness it and make it work for you instead of driving you batshit crazy. You are fabulous at tuning into the physiology of your body but not good at soothing. This is where you need to hack the fear cycle. Somatic tracking is the master key to healing but you need to couple it with cognitive soothing. Right now you feel something happening in your body and you careen down the rabbit hole of hell. This is where you need to apply the breaks. You have to stop your mind catastrophising. You have to stop the negative fear talk stone cold dead. No more. Even something as simple as "it's ok, it's ok, it's ok" is enough. Breathe. Marshall your thoughts. Think Claire Weekes and float through...it's ok, this will pass, I'm safe, I'm loved, there are people who care for me...because all of those things are true.

    2. There is a boundary issue here. One of the absolute worst things any one on this forum can do is read stuff that is scary or potentially scary. Get good at recognising the collywobbles before it lurches into fear. There is something perversely salacious about Dr. Google and other medically-oriented information. Don't read Hanscom's stuff. He actually has a very artistic and sensitive disposition so I largely have an overall embrace of simpatico when reading his words but I do understand that some things may trigger anxiety in some people. Spare yourself that. Stay with people, posts and threads that leave you feeling good. In time you will tip the scales and spill into goodness as a default but for now you have to consciously jack into joy and kick the self-destructive, somewhat addictive tendency to yield to fear.

    3. Baby, our bodies are amazingly resilient. They recover from all kinds of malady. Another excellent thing to focus on are the fundamentals of well-being and health. Spend time in nature, spend time offline, drink water and stay hydrated, eat natural foods, cuddle things, sleep and rest... You get the drift. People often let these things slide. Again, consciously choose to take supreme care of yourself.

    You're a beautiful soul Nancy. Learn to treat yourself kindly. Learn to soothe. We're here to help you learn and maintain those skills. I'll keep the faith for you and with time you'll naturally find it for yourself. Remember be patient. These practices take time. We have to learn them, apply them, play with them, make them our own. Too many people try something once or twice and then declare failure. Recovery comes with consistent, conscious application again and again. It's ok to fuck up and drop the ball so long as you pick it up, learn from the mistake and go again. That's the gig. Keep on keeping on.

    Much, much love,

    Plum x
    Last edited: Aug 16, 2017
  3. Lunarlass66

    Lunarlass66 Well known member

    Dear, dear Plum,
    As I read your loving reply, I felt overwhelmed by the warm kindness and compassion in your words. I have to be honest. I'm not at all used to it. I know I beat the shit out of myself everyday.. And I have all my life, always trying desperately to get people to see any good in me.
    With the chronic pain these past few years, it's gotten all that much easier to self loathe. I'm sad, mad, scared, hopeless.. Every negative feeling possible all at once.
    I've grown to like the analogy of "the rabbit hole".. It's become my new residence. I feel like I've been trying with every thing I have to recover from it all. I've never had so much physical pain in my life. It almost seems more painful than any PHYSICAL issue COULD be. I've given up on conventional doctors, that was a merry-go-round from hell and only perpetuated more symptoms..
    I DID embrace Dr. Hanscom's protocol initially, but his explicit descriptions of the damage chronic pain can do leave me nearly hysterical in tears and literally lock up my already bad back....
    Truth is, I'm terrified. My surgery of 22 yrs ago left me with permanent MENTAL scars.. The last spine guy I saw, after reading my reports, said "normal wear and tear"... But the images of all the abnormalities STUCK... PTSD, i believe... And also physical, BOTH overlapping. Further surgery would weaken my spinal structures even more, a risk I am not willing to take... And though conventional MDs would argue to the contrary, I believe menopause and the loss of estrogen have reduced my body's natural defenses against pain and inflammation...
    Oh God, I'm just so hopeless and overwhelmed... My poor boyfriend(though he has addiction issues and can be abusive at times) .. I don't have relatives, so he takes the brunt of my hell.. I didn't know a person could cry or hurt this much and still be alive.
    I'm sorry Plum... I don't mean to unleash all my misery on you. Your posts are always so profoundly warm, understanding and kind.. They open my flood gates.. It's impossible not to love you, even from across the pond. I often think of the loving way you care for your guy, and the miracle the two of you have made, despite those damn doctor's grim prognosis... You're a living angel.
    Lily Rose and plum like this.
  4. Lunarlass66

    Lunarlass66 Well known member

    I should add to that I've tried books, journaling, counseling, doctors, distractions, rest, exercise, heat, cold, meds, physical therapy, support groups, steroids, prayer...EVERYTHING. I just can't figure it out. I can't work anymore and for the most part am housebound... I get out if I'm lucky maybe twice a month.
    My world fits in a thimble, I often say. In 2015, I still worked in a very physical, fast paced childcare setting, was on my feet at least 10 hrs a day, was almost limitless and moved normally and freely... With the exception of very heavy lifting which I always avoided due to prior surgery and having been advised against it...
    Life was GOOD, I even still had some anxiety, but it wasn't all-encompassing and debilitating.
    I wish I understood what happened to me. Does this happen to anyone else here? Am I some kind of psychotic or freak?
    Last edited: Aug 16, 2017
  5. plum

    plum Beloved Grand Eagle

    It sounds to me like you're doing what I did which is trying too hard to heal. It generates so much pressure and tension that words fail to describe it. I can honestly say I lost my mind with it all. The one thing that held me safe was some conviction that the answers were there.

    I'm not going to pretend it was easy or quick. I screwed up endlessly. I was terrified. I was hopeless. I was lost. My life got worse. I hated pretty much everything including myself. And I became constantly incandesantly angry.

    If it hadn't been for my family I may well have jumped ship. But then one day I had this magnificently dark thought which was this:

    If I'm going to blow my brains out I may as well have some sport first. What have I got to lose?

    And this became a guide rope.
    "Fuck it" became my mantra.

    I was still in mind-loosening pain but there was an element of fun in the mix. Now what follows is not something I'm proud of but it shook me to my core and changed everything.

    I accidentally overdosed. My boy used to work in Accident and Emergency so we knew what to do. I didn't go to hospital and instead he ran me a bath (I had thrown up all over myself) and I sat in it. He sat with me for hours. I fought the battle of my life that night. I literally fought for my life.

    There was a seductive voice at my left shoulder that kept cajoling me. Lie back. Close your eyes. Sleep. Just for a moment. Lie back. Close your eyes. Sleep. It'll all be over in a moment...

    Death was calling to me.
    I'd read a book by Carlos Castaneda and in one chapter he speaks of dancing one last time for death. It is the Warriors Way to go out shining.

    Ok. I had two thoughts. First, Amy Winehouse had just died and how she died burned into my mind. Second, I was going to give the m*****f***** the dance of his life.

    It took every fibre of my being to fight. I sat up. I poured cold water over myself constantly. I prayed. I prayed. I prayed. For hours I prayed to sweet Jesus. A mantra "sweet Jesus save me, sweet Jesus save me". And he did.

    I was destroyed for days. Battered, humiliated, disgusted but grateful. Oh so grateful. That night changed me forever. I realised how much I wanted to live and how powerful love, compassion and faith truly are.

    I don't recommend my method but perhaps there is something in the telling of my tale, something on the edges that may jibe with you and give you hope that what one person can do, another person can do. You can climb out of that f***ing hole. Anger is excellent for galvanizing such action.

    So there it is.
    Perhaps I am a living angel after all.
    Balsa11, readytoheal and Lily Rose like this.
  6. Lunarlass66

    Lunarlass66 Well known member

    Oh my God Plum....
    The thought of your suffering kills me inside. You have the kind of soul this world is in great shortage of. Thankful to the Lord that He assisted you through your darkest hour.
    I am ashamed too that I have been there.. Lined up every pain pill in the house and sat at the kitchen table thinking "this is it, no more, I have to end this pain.." but somehow or way didn't go through with it... I have no real reason why I didn't to be honest.. Fear of death maybe, but the fear of pain and the incapacitation is just as horrid..
    So there is my current station of life, stuck between a life governed by pain and death's "promise" of relief.
    I never told this to anyone... And the endless, endless tears.
    It took mountains of courage to tell your "rock bottom" story. Thank you for confiding in me..in everyone in the TMS family. It could make the difference between living and dying for some of us. (just not me)
    readytoheal, plum and Lily Rose like this.
  7. Lunarlass66

    Lunarlass66 Well known member

    On a side note, I remember being hit hard by Amy Winehouse's death and buying a commemorative magazine with her on the cover. Since I was a kid anytime I would hear of someone passing away, I would agonize over it, even if it was a complete stranger...
    It's almost laughable, but I remember a squirrel dying in the neighbor's yard when I was maybe ten years old and having it disturb and upset me for weeks afterward... Crazy sensitivity. Over the top. Why?? My boyfriend often is critical. I don't really think he means to be hurtful, but he constantly points out that I am "too fragile", "too sensitive".. Etc, etc..
    Which of course causes hurt feelings.. I have the thinnest skin of anyone I know.. HATE IT..
    HOW can I stop the self hatred if my body HURTS every single day??
    Lily Rose likes this.
  8. plum

    plum Beloved Grand Eagle

    This forum is special. It's a rare place in this crazy world and is somewhere dedicated to healing. How can we heal if we are afraid to share our deepest truths? What hope do we have of being authentic if we cannot give these truths words?

    I don't mean here, in the public arena necessarily but somewhere, with someone. How many of us actually write reams of self-loathing condemnation instead of finding peace and validity in ourselves? That is the madness.

    There is nothing wrong with being sensitive. The only error is in not caring for it in the ways that it needs caring for. This is the work Nancy. Caring for yourself moment-by-moment because that is how you create the path from here to there.

    Try to be kinder to yourself. Ease up on the self-criticism. You don't deserve it. You deserve to be happy and you will be my darling.
  9. Lunarlass66

    Lunarlass66 Well known member

    May I ask other than the nerve issue you had in your mouth/jaw, did you have any other TMS symptoms?
    I've had practically too many to count.. Oddly enough my right side is primarily afflicted..
  10. JulietBlue

    JulietBlue Peer Supporter

    Hi lunarlass,

    I just read this thread and felt compelled to respond. I wanted to tell you you're not alone and no, you're not psychotic or a freak. I think I'm in a similar place to where you are. I had surgery on my thoracic outlet 6 years ago and the pain caused me to lose everything. My life has been severely limited for years. Lost my job, house, savings, most friends and I have very little family left. One of them took me in after my surgery and lost my house thankfully, otherwise I would have been homeless. I have no other half either and have been very lonely through all of this. My dream was always to settle down and here I've been still alone through it all. I gave up a few years ago on everything but learning about TMS has given me some hope back. Though lately I'm feeling stuck too and confused about other issues with my health that may not be TMS. I'm trying to get to the bottom of it now though but it's been hard and very confusing.

    I've been very isolated and mostly homebound for a long time as well and want more then anything to be able to get everything back. I know you do too. I dream about the day I can get another job and support myself again. The other issues that may or may not be TMS related have also severely limited my life and is making it so hard for me to try to move on.

    Some days, like today, I feel like I'm going crazy. I'm sure some must read my threads here and might think so too; I know I'm really not though. I don't even sound, think or write like how I used to. It's hard to even see through this constant fog I'm in to try to figure out what else I should be doing besides waiting to see doctors that I no longer wish to deal with for these other issues that may or may not be TMS. I've been so scared and confused too even though I recognize the fear just makes things worse.

    I'm not exactly sure where I'm going with all of this to be honest. I just wanted to tell you that there are others who feel the way you do and are where you are. Sometimes I read threads looking for someone else who is in a similar position as I am; has lost everything, feeling stuck, etc. Sometimes it just helps to know that you're not alone I guess. Each person's story is unique but sometimes it's hard to find that story to relate to. I feel like that's where I've been lately. I look at success stories like Plum's when I need a booster of hope. It always helps.

    I haven't read Dr Hanscom's blog post that you mentioned. Maybe I will but no matter what it says, I do believe there is hope for all of us no matter where we are or where we've been or what we might be currently going through. There's amazing stories of people who have overcome all kinds of adversity and changed their lives for the better. Sometimes through seemingly impossible situations. When I get down about any of this lately and I really do, I remind myself that if they could do it, than so can I. So can you. It may just take a little more time then what we would like but I still believe that.

    Sending you healing thoughts and prayers. ( hope that's OK, you mentioned prayer in your post)
    Lily Rose, Lunarlass66 and plum like this.
  11. plum

    plum Beloved Grand Eagle

    Sure. I've had enough to fill a wheelbarrow.

    Let's see: migraine, TMJ, neck pain, random shoulder dislocation and shoulder pain, upper back pain (for a decade), lower back pain, IBS, achilles tendonitis, foot pain, dodgy knees, genital woes, sore finger joints, wrist pain, intercostal pain, nausea, dizziness, blurred vision, skin rashes and eczema, anxiety, panic attacks, depression (oy vey with the depression). There are probably others that I can't call to mind.

    Mine are predominantly on the right side too. There is a theory that the right side of the body pertains to masculine issues (bloody men) and the left side to feminine issues (bloody women). Make of that what you will. I hate to sound flaky but I kinda think there's some truth in it.
  12. Lunarlass66

    Lunarlass66 Well known member

    I can barely see through my own tears but I HAVE TO ask, are we RELATED somehow??
    I swear to God, I've had all the EXACT same symptoms and conditions as you have... Even the oral nerve issue, but mine came after a dental implant procedure (actual multiple surgeries to extract the roots of the fractured molar (near the main nerve), placing the Titanium abutment and then the final crown..) well, the oral surgeon SWORE he didn't go near the nerve during surgery but sure enough I had pain, numbness and odd shooting sensation in my left jaw and gums for TWO YEARS after the procedure and was terrified nerve damage was permanent. I'd read on (SINISTER) Dr. Google ALL kinds of horrific stories of other people's dental implant surgery and was sure my lip would hang indefinitely... I was furious with the surgeon, saw him as the enemy for not warning me..
    But, that did finally clear up about 90% of the way after years of waiting.. And hoping.
    I have had IBS, TMJ, low back pain, sciatica, intercostal rib pain, mid back pain, plantar fasciitis, hammer toe, (permanent.. Developed from plantar fasciitis for so long) knee pain, shoulder tendinitis, hip pain and snapping, hand, wrist and finger pain(was just diagnosed with OA in my hands in April) anxiety, panic disorder, depression, shakiness, skin rashes (yeast), positional vertigo (funny only when I would travel and stay in a hotel away from home and things familiar.. Brain felt threatened and unsafe) headaches, insomnia, elevated glucose, elelvated blood pressure(both go down when my fear is less)... The list is endless..as were the dozens upon dozens of doctor visits, PT treatments, lab work and xrays/MRIs... I was DETERMINED to get my life and mobility back, logical, right?... Cause=cure, or so I thought... But now?..
    I am even beginning to think my lumbar discectomy/laminectomy may have been unnecessary and all this time (could my surgery actually have been a gigantic PLACEBO effect all these years??) it could have been Mindbody Syndrome... I'll never know the truth. I'm so incredibly confused. Where does one draw the line between what truly IS structural and physical and what is being generated by the tortured mind?
    Last edited: Aug 16, 2017
    Balsa11, JulietBlue and Lily Rose like this.
  13. plum

    plum Beloved Grand Eagle

    In a moment of rare pragmaticism I suggest not even trying to figure that out. The mind~body is exquisitely interconnected and it may never be our privilege to know. Do what feels good and feels right. Don't judge healing methods by whether you think they are structural or psychological, just do it. There is plenty of evidence that a lot of physical healing practices work by changing the sensation the brain receives or by the placebo effect (which just means the mind is healing the body. It's a good thing. Not a bad thing).

    No more tying yourself up in knots. Your healing path is unique to you so you do what feels best. Give yourself some time to fathom that out but always go gently. Always.
    Balsa11, Lily Rose and Lunarlass66 like this.
  14. Lunarlass66

    Lunarlass66 Well known member

    The right or left side of the body? The right meaning masculine issues... Well, if there's merit in that theory.. My birth father I never met (I'm adopted), my adoptive father, I had a very close relationship with, though he suffered with alcoholism and epilepsy and abused my mother and brother.. (brother also adopted, hates my guts).. Had dozens of bad relationships with men, and now living with a verbally abusive guy (due to HIS own childhood and addiction issues)and the latest? My roommate (brother-like relation) of 20 yrs, got up for work one day and never came back, and I was recovering from acute plantar fasciitis and in a cam walker boot, unable to walk without help, living on a second floor apt, I wound up out of work and lost my home) ... So, I suppose a counselor or psychologist would say I have "issues" with men.
    But, my mother abandoned me at birth and then AGAIN after meeting me as an adult.. And with my adoptive mother, I (deceased) had a very strained relationship..
    God I HATE droning on about my life... It sounds so shitty and pathetically dysfunctional typed out for all the forum to see. Everyone has had unhappiness and hardship in their lives... The only difference is that most people don't become PHYSICALLY crippled because of it..
    Last edited: Aug 16, 2017
    Balsa11 likes this.
  15. Lunarlass66

    Lunarlass66 Well known member

    Oh and I'd like to ask if it's ok... How much pain do you still experience, if any? My understanding is that TMS is lifelong, so even if I ever get to the point of relief where activity can happen at a "normal" rate again, how does one with a combination of relentless fear and tendency to this horrible condition move on without worry?? :(
    Aghhh, horrible day, barely aware of the sunny blue skies of midsummer here. I tried sitting outside, I just couldn't, all I want to do is curl up in the dark and be unconscious..ironically enough, my boyfriend's back is "out" right now too. Does anyone else notice that when a loved one has pain, their hyperactive nervous system is so out of whack that they are highly suggestible to other's suffering? In other words, my back actually spasms when my boyfriend's back is out.. It's REAL pain too, but it makes one FEEL as if they are no longer reasonable or sane..
    Balsa11 likes this.
  16. plum

    plum Beloved Grand Eagle

    I'm not totally pain free yet but I'm around 80% there. I've had 18 months from hell and being stressed to high heaven. That has put the mockers on a smooth ride but good news. My general pain levels are low, I bounce back quickly and what works remains faithful.

    This is life. While I can't do much about what happens I can control my responses. That's a key. No more melodrama and reactivity only grounded peaceful responses.

    I'm assimilating the new Alan Gordon program into my repertoire. It really is golden.
    Balsa11 and Lunarlass66 like this.
  17. Lunarlass66

    Lunarlass66 Well known member

    Just want to say a huge, gigantic thank you to you Plum.. For the wisdom, gobs of compassion and love you selflessly give to all of us every chance you get...you have fast become my hero..
    Thank you, thank you, thank you!!:rolleyes: ( this emoticon looks so much like a happy little plum...xx)
    With love, Nancy
    Last edited: Aug 16, 2017
    Balsa11 and plum like this.
  18. Lily Rose

    Lily Rose Beloved Grand Eagle

    Nancy ... everything that Plum said!
    You are more than beautiful.
    You are strong.
    You are powerful.

    Be patient and self-compassionate. Even if you can't love yourself yet ... BE compassionate. That is the first step.

    ... with Lots of LOVE and Compassion <3
    JulietBlue, plum and Lunarlass66 like this.
  19. Lunarlass66

    Lunarlass66 Well known member

    Thank you Lily Rose..
    I don't know what I've done to deserve such warm, compassionate love from so many people here.. But even with my pain, the comfort it gives makes all the difference...
    JulietBlue, plum and Lily Rose like this.
  20. Lunarlass66

    Lunarlass66 Well known member

    Thank you so much for your kind response Juliet Blue.. ( pretty username)
    I too often feel like I am going crazy, the pain overwhelms me and all I can do is sob and sob and ask God, no BEG God to help somehow. I keep asking why He has chosen this path for me and the purpose in all I have had to give up because of the chronicity of my condition.
    I miss life... My old life. My boyfriend often engages in fun activities without me (band practice, baseball games, picnics, concerts)... I was active and able just two yrs ago. I can't understand what happened. I'm 51, yes, but aging is SUPPOSED to occur gradually, not instantaneously...
    I HATE knowing so many kind, loving people HURT... And I wish YOU health and healing as well and please feel free to message me any time at all, we can all support each other's journey... With love, Nancy

Share This Page