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Beginning to think that neuropathy is the new back pain

Discussion in 'General Discussion Subforum' started by Jimnat7, May 31, 2018.

  1. miffybunny

    miffybunny Beloved Grand Eagle

    Jimnat, I had full blown RSD/CRPS in both feet ( bone marrow edema in every single toe on MRI). I had burning, stabbing, flames, felt like I was walking on jagged rocks. felt like there were drills and jackhammers in my feet, felt like every single toe was broken and I was walking on giant bruises. The pain was so severe that I came close to vomiting many times. I could barely walk and I wore huge Crocs for over a year My feet are 99.5 percent better now because it was all TMS.
     
  2. Marinedad

    Marinedad Well known member

    I been the same way for 8 yrs and I know it's tms but can't not get over the hump
     
  3. miffybunny

    miffybunny Beloved Grand Eagle

    I understand the frustration. Without going into too much detail (you can find other posts of mine in the forum), I'm still struggling with RSD in both knees. It's been 4 years but I also know why. My vanity over how they look is blocking me. I get so depressed about the aesthetics, it's even worse than the pain. This is what's keeping me stuck. You need to figure out what your mental block is. It could be just a matter of habitual thought patterns. Have you tried therapy such as the Pain Psych. Center?
     
  4. Jimnat7

    Jimnat7 Peer Supporter

    Thanks jiffy bunny. I'm pretty sure that this is TMS. Already feeling a little better and that shouldn't happen if this is purely neurologic. I feel that with any injury, disorder etc. Tms plays a role. I think sometimes we try too hard to get rid of it and thats why it stays. I notice when i injure another part of my body my feet dont feel as bad. My attention goes elsewhere. It is the massive amount of negative attention to the injury that is my downfall at times. Enjoy your day and thanks.
     
  5. Marinedad

    Marinedad Well known member

    Yes for over a year...we just kept going around in circles over same issues without any relief of pain..
    It's very hard to believe when there is no sign of any improvement ..
     
  6. Click#7

    Click#7 Well known member

    What is a habitual thought pattern ? Give an example please.
     
  7. Marinedad

    Marinedad Well known member

    I guess it would be always thinking about your pain
     
  8. miffybunny

    miffybunny Beloved Grand Eagle

    Click#7, I would say that with regards to TMS, the thought patterns I'm referring to are any negative, chronic thoughts you may have that fuel the pain strategy and keep you stuck in this mechanism. They can be anything, but usually they take the form of ruminating about the past, fear of the future, or thoughts that make you feel like a victim...basically thoughts that bring you out of the present moment. Our bodies are an extension of our thoughts. The thing we forget, is that just because you have had pain for many years, doesn't mean it can't go away in an instant. Just as our physical pain is temporary, our thoughts are temporary as well! The problem is we get stuck in chronic thought patterns. I think the way out is, firstly to become aware of the thoughts that are repressing our emotions, then addressing the emotions, then consciously changing the thoughts (from resistant ones to allowing accepting ones). This concept of acceptance ties directly into the idea of "outcome independence". It's not so much the pain, but our thoughts about the pain that is keeping us stuck. I have various chronic, negative, habitual thoughts. Probably the biggest one in my case (and this has been my biggest obstacle) is, "My legs are ruined. I used to have beautiful legs and now they are ugly, I can't wear skirts or dresses anymore, etc etc etc etc )". The way my knees look (swollen and red from the RSD) is a HUGE preoccupation and distraction for my brain. The irony is that the physical pain doesn't bother me one fraction as much as they look!! Crazy but true.

    Hope this helps to clarify!

    MiffyBunny
     
    Dorado likes this.
  9. Click#7

    Click#7 Well known member

    Thank you...very well explained. How did you transfer those thoughts into feeling your emotions pertaining to the feet ? It appears that those that can stop the negative ruminating are able to feel their emotions, or feelings in order focus on the causes of pain. Secondly, defeating the fears. For me the intensity of the pain id throws at me is difficult. For you maybe you should wear the skirts, or dresses maybe the answer. I read somewhere that someone with painful feet decided to wear the shoes they wanted no matter the pain and that sent the subconscious a message. Is the condition of your legs holding you back by subconscious design ? I have awful hip pain that won't allow me to wear certain clothes too. I guess we could take a play out of SteveO's playbook by just doing what we want no matter what. Steve ran and played golf and said "just do it !" What is difficult for me is almost the same as you...I had surgery and I think at times it's a structural issue. BUT I'm healed. Looking at your red knees is just a trick the SC is playing on you. Think of those knees as nothing more than an illusion. Hope I made sense.
     
  10. miffybunny

    miffybunny Beloved Grand Eagle

    Once I knew without a doubt that it was TMS, I guess you could say I had to start the process of doing the work. Patience and persistence and not being hard on yourself is key. I had to start shifting my thoughts from the physical to the psychological. This took a lot of practice and repetition. You are almost retraining your brain and overriding old neural pathways. Every time I would get distracted by a pain sensation (which was like every second LOL), I would ask myself how I was feeling and if something was bothering me. It could be something that annoyed me on a daily basis, or maybe I had gotten in a fight with my husband a couple of hours prior, maybe I was worried about one of my kids. It could be something relatively trivial or something more over- arching like years of accumulated stress from my younger son's autism, or feeling trapped etc. I would shift from thinking about the pain to the emotion, since the pain was just trying to distract me from what my brain perceived as threatening emotions. This is how you communicate to your brain that it's ok, you can handle the emotion, and it can stop sending you pain signals. This is the first technique you have to practice. The second goes a little deeper and it's a little more esoteric. As you know, people with TMS have certain personalities so often when one thing goes away, another form of TMS can pop up...it could be another part of the body or it can manifest as anxiety etc... In my case, I had a bizarre thing happen. I had a massage where the massage therapist decided to dig into my kneecaps. This triggered off full blown RSD in both knees. This has been a longer road for me because I was quite attached to my legs and always considered it my best feature. TMS is so tricky that it will find new ways of distracting a person. For me. the red/mottled color and swelling is powerfully distracting. I haven't been able to look in a mirror from the waist down in 4 years. Ironically, it was the opposite before that. So here is where the second technique comes in. You essentially have to become a different person. You have to become greater than your body, time and your environment. As humans, we tend to go on autopilot. We do the same things, think the same thoughts, day after day on autopilot. Even changing your routine and environment a bit can help nudge your thoughts in a different direction. You have to accept and become indifferent to the pain because the pain is not YOU. For a long time the pain has controlled and probably intimidated you. I know it did for me. Although I haven't reached the finish line yet, I was bedridden a few years ago. Now I'm fully functioning but still have some burning neuropathy and stabbing pain. It's not 24/7 though. I do try to wear things that show my knees but I'm still extremely self conscious. I guess this is my last and hardest hurdle. In the mean time I go about my life as if I was normal. "Fake it till you make it" or until your brain believes it and your body catches up. There was a time that I could have never imagined wearing sneakers but I can actually wear high heels now! I figure, that if I could overcome my feet, then my brain is capable of overcoming my knees!

    I hope my experience and story helps!!
     
    HattieNC and Click#7 like this.
  11. Click#7

    Click#7 Well known member

    thank you much for the valuable information.
     
  12. miffybunny

    miffybunny Beloved Grand Eagle

    Any time!!:)
     
  13. Jimnat7

    Jimnat7 Peer Supporter

     
    miffybunny likes this.
  14. Jimnat7

    Jimnat7 Peer Supporter

    When I first started having these neurpathies. My high functioning autistic son was hanging out with bad kids, my daughter had just been diagnosed with adhd and my other son was being accused of bullying. So, things were a mess. Things are good now but the pain patterns remain. Just like when I had back pain years ago I have developed a list of what I can and can't do with my feet. I think i should just do everthing and that will help tremendously. During the past two years i had 10/10knee pain which i literally willed away because i new it was tms. Neuropathy scares me more so I seem to be holding onto it. Thanks for all the info.
     
    miffybunny likes this.
  15. Marinedad

    Marinedad Well known member

    Thx you both for your stories ...I feel you all struggle with fear and the terrible possiblties of living with this dicormforts
     
    miffybunny likes this.
  16. miffybunny

    miffybunny Beloved Grand Eagle

    Hi again! When you are worrying about your kids, it can generate an enormous amount of inner tension. When you are in this chronic state, without realizing it, what you are actually doing is avoiding (repressing) certain emotions associated with these thoughts (for ex. "How can I help my son choose better friends?", "What am I going to say to the guidance counselor? How can I advocate for my son? Is he really a bully or was he falsely accused?","Where did I go wrong in raising him?", "Is my kid a jerk?", "Will I need to put my daughter on medication? " etc etc etc etc etc etc... you get the picture!). The emotions of fear, guilt and anger surrounding these circumstances and thoughts can be overwhelming, so your brain will create pain distractions.

    The more you have thoughts such as: "Why isn't this going away?", "Am I a freak? Am I even a TMS freak?", "I've been in pain so long, I must be doomed", "WHY can't I get rid of this pain??", "Why did this happen to me?, "How long is this going to take?" etc. etc., the more you are feeding the TMS. When you stop caring about the pain, the pain loses it's power over you. It ceases to serve a purpose and it's existence becomes extinguished.

    Fear is the fuel for TMS and I totally understand how scary neuropathy can be. It is a particular kind of hell isn't it? But remember, the more you are repressing emotions, the more you are generating tension and the more stress you are experiencing, the higher the level of and the crazier the nature of the pain. If you didn't have this physical pain, you most likely would have had a mental breakdown years ago. You are actually a much, much stronger person than you realize!! Now that you are on to the tricks of TMS, it won'r have the power to fool you anymore. I always use the "Wizard of Oz" analogy...at the end when Dorothy pulls back the curtain of the "Great and Powerful Oz", only to find a meek, scared little dude behind the curtain.

    Just know that it is in your realm of capability to get better! It's more than possible!:)
     
  17. Jimnat7

    Jimnat7 Peer Supporter

    I think that thought patterns are key here. On good days im saying this is nothing i can beat it but on bad days im saying its a neurological thing ill always have. The symptoms do seem to follow my thoughts. Thanks for your insights. Very helpful.
     
    miffybunny likes this.
  18. Marinedad

    Marinedad Well known member

    I do the same thing
     
    miffybunny likes this.
  19. Marinedad

    Marinedad Well known member

    Thx u so much for sharing
     
  20. Marinedad

    Marinedad Well known member

    My pain can be at 2 then a few hrs it’s 7 it’s been that way for yrs ...I am going to a pain clinic tomm for some relief till I can get on track ....but my inside says don’t due it but my feet are screaming and suffer threw work what’s your guy opinion on this
     

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