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Losing hope, need a boost

Discussion in 'Support Subforum' started by Lavoris, Nov 11, 2017.

  1. Lavoris

    Lavoris New Member

    I have nerve pain all over like pins and needles. I have been to the Mayo Clinic after exhausting all other resources for an explanation. They dxd me with Fibro/Central Nervous System Disorder. I have been working with a trauma therapist and a rheumatologist. Everyone seems baffled by the fact that I have nerve pain without small fiber neuropathy which can be a symptom of fibro. Can this be a TMS thing? Has anyone had this happen as a symptom of TMS? Gosh I hope so. I would feel less alone. I get the back pain, headache etc. stuff, but this is so strange and came on so suddenly. I don't anticipate it, I go about my life, baking, gym, socializing. But the sensation can be triggered by just sitting still for too long, a bike ride or typing at the computer. When I am busy I don't usually think about it. I am good at distracting myself and I do journal but I am losing my mind. I am on Lyrica which I hate but so far cannot do without. I use CBD and good nutrition and use Dr. HYman's cookbook and suggestions. I work with a trauma therapist. I am so sick of this. I don't feel like any of this is working. I don't want to spend another Christmas like last year which was hard seeing everyone enjoy themselves and run around. I go with them but it is so distracting, it is maddening!!!! Has anybody had any experience with this and come out of it?
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Lavoris, welcome, I'm glad you're here.

    I've said this many times before, and I'll say it again: in six years of reading people's stories, one consistent thing really stands out, which is that our brains are capable of producing an unlimited number of different symptoms that are guaranteed to be completely unlike anything that anyone else in the world has, or has ever had.

    When you consider that the purpose of TMS is to distract us and keep us fearful, this makes total sense. If the person with TMS focuses on comparing their symptoms to other people's symptoms, so that they can relax, the TMS brain mechanism has to figure out a way to make their symptoms different, so that they stay in fear.

    And, when you consider that our brains are in charge of every physiological process in our bodies, the possibilities are endless.

    Also, let's be clear: around here, we all know that Fibromyalgia is TMS. Which means that even though the fibro docs think they might have found some kind of physiological pattern in their fibro patients, I'll bet you dollars to donuts that there are plenty of people without fibro who have the same thing. Just like Dr. Sarno found degenerated discs in the MRIs of many people with no back pain whatsoever.

    If you've been thoroughly checked out, and if "they can't find anything wrong" (meaning they can't find something obviously wrong that needs treatment) it's time to stop going to the specialists who give you diagnoses that are essentially a meaningless combination of words designed to sound like they know something, and it's time to devote yourself to the psychological and deeper emotional sources of your distress.

    Most of us who end up here are not going to find recovery just by reading Dr. Sarno's books. We have to do the work. If you have not read anything by Dr. Sarno, you have to start there - I recommend his most recent book, The Divided Mind (with six chapters written by other MDs and a therapist). Then move on to our free Structured Educational Program (SEP) and also be sure to read at least one Success Story every day. They are all awesome. The most recent one is here: http://www.tmswiki.org/forum/threads/100-healed-from-ic-for-1-5-years.17365/ (100% Healed from IC for 1.5 Years) Along with the SEP, we offer the awesome Pain Recovery Program, generously provided by the wonderful Alan Gordon, MSCW. Feel free to read my Profile story and list of resources and posts.

    This work isn't linear, and it's different for every individual. Be honest with yourself as you do the work, don't give up hope, and above all, give yourself credit and lots of love for considering that there may be another answer.

    Good luck!

    Lily Rose, MWsunin12, CGP and 2 others like this.
  3. jml19

    jml19 Peer Supporter

    I am so sorry you are experiencing this. I can completely relate, as I have been dealing with pins & needles all over and peripheral neuropathy (burning) in my feet for several weeks. It does not come and go, it is constant. I am seeing a doctor now to rule out any medical reason for this, but I strongly suspect TMS. Time will tell.

    I also have pelvic pain which is definitely TMS related. Some days I feel fine, but when I get stressed (like today), I'm in pain. When I get in pain, I get discouraged and afraid and then those thoughts of "will I ever be normal again?" start pestering me.

    So, when I get like this and feel like I just want to break down and cry, I first tell myself I am really OK and that the bully voice inside my head needs to be quiet. I then pull out my SEP notes and that usually gets me back on track. Then I find a quiet place, lie down and do some relaxation stuff: breathe in and out (focusing only on my breathing and nothing else), then briefly turning my attention to the pain without overanalyzing it, then repeating that a couple more times. Usually the pain is either gone or greatly diminished after I do that.

    I remember reading somewhere in the SEP that we need to try and stop focusing on the pain, wherever it is. Our goal should instead be to alter our reaction to it. I learned that the WAY we react to the pain either reinforces a sense of danger or safety to our mind. When we react with fear, that reinforces the danger that the brain perceives and the pain persists. In other words, fear is the fuel for the pain. So, I'm telling myself right now - again! - that I am done with being afraid!

    In her book, "Hope and Help for Your Nerves", Dr. Claire Weeks talks about the importance of acknowledging the physical symptoms (rather than ignoring them) but then going about our business without giving the symptoms a lot of regard. Also---and this is very important--we need to be willing to persevere and "let time pass". It takes time for the body to recover. She says eventually the pain will go away if we don't feed it with fear.

    Hope this helps.
    Ellen and JanAtheCPA like this.
  4. Lavoris

    Lavoris New Member

    I am working with a trauma therapist who specializes in this and with Dr. Schecter, a TMS specialist and colleague of Dr. Schubiner's as well as Alan Gordon's. I have both workbooks and journal. Despite that, we all have our down days and this was one of mine. I have the books and do the work, I was just feeling a little lost today and looking for support. If anything, I was feeling overwhelmed by doing so much work and figuring out a way to balance just living with that. Thanks for your post. I should have been more clear in my post. You answered my question in the first paragraph when you re-assured me that our brains can do anything and that there are probably other people out there with the same strange symptoms. I do not go to Drs. anymore other than physicals and for help in titrating of benzos. I'm more than halfway there!!!!
    JanAtheCPA likes this.
  5. Lavoris

    Lavoris New Member

    Yes, it does help quite a bit! I have been doing a pretty good job of the above, but just cracked up today. It happens. That's what this forum is for, right? I went for a long walk with my husband after a rant about how sick I am of all this and then had a good cry and then felt better and back on track. I even suggested we go out to a movie, when I had originally planned to just stay in and feel sorry for myself. I mentioned in another response that I am also withdrawing from benzos and that is another bully on the block. Still, I am determined on that front as well. Bit of a 'Weeble' if anyone remembers those: "Weebles wobble but they don't fall down"!!!

  6. jml19

    jml19 Peer Supporter

    You can do it! I've been taking Ativan "as needed" for about 4 years. Typically, I'd take about .25 mg. 3 or 4 times a month. But I always carried some in my purse as a "security blanket". Lately, with the pain symptoms I have been dealing with, I found myself taking it every other day, or sometimes every day. Then, instead of 1/4 of a pill, I was finding myself taking a full pill to get to sleep. Well, the good news is that after I started the SEP, I began to feel so much better that I was able to stop the pills and have not had the first desire to take one in about 6 weeks. I believe I am finished with them!

    I was having a really bad night feeling down because of the pain, so I was particularly drawn to your post. The interesting thing that happened is that after I posted to you, I noticed my pain had diminished and now it is completely gone! Our support for one another in this journey is, I believe, one of the keys to recovery.
    Lily Rose, JanAtheCPA and Ellen like this.
  7. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    That's good info, Lavoris, and I get the frustration! We've all been there, and at times it still comes and goes.

    But I do have a specific suggestion for you, which is to find one generic word or at the most a couple of words to use when you want to refer to your recent symptoms. Something like "neuro symptoms". Do NOT allow your primitive brain to spend time and energy going into detail. Don't mention the Mayo clinic diagnosis at all. Seriously! And forget about "small fiber neuropathy" whatever that is, or its relationship, or not, to fibro. These details are just another distraction, your fearful brain loves them.

    The more you get away from obsessing over these details, the more time and energy you will have to discover and accept your emotional self. That's what your brain does NOT want you to do, but that's where you MUST go.

    Great advice from @jml19 .

  8. stradivarius

    stradivarius Peer Supporter

    Lavoris, check out the post titled Small Fibre Neuropathy in the Support forum, and read Caulfield's story, and check out the links he posted for solutions.
  9. Mermaid

    Mermaid Well known member

    I'm in the same place as you. I don't have any advice, I just wanted to let you know you're not alone. It took me a year to come off Lyrica it was causing bad side effects and I had a protracted withdrawal so be careful when you come off it. Best advice I can give you is once you know it's TMS stay away from doctors who aren't aware of its existence. I know how hard this is. Bless you.
    JanAtheCPA likes this.
  10. Lavender

    Lavender Well known member

    Nice to see you contributing to the forum Mermaid.
  11. Charliekan

    Charliekan New Member

    I have mixed feelings adding to this thread; because after being relatively pain free for like 2-3 years I have recently been having sciatica symptoms again which unfortunately has brought me back to the forums, conversely it is wonderful that this forum not only exists but has kept going. Lavoris, you are definitely not alone! I have many patients with chronic pain of all different types and I spend hours introducing them to Dr. Sarno. I share with them my own experiences, hoping that from my example they can accept the answer that to me is obvious and so freeing! That TMS is so real and that the medical world is fumbling around trying to find reasons for what is causing all of our pains when Sarno already gave us the answer. All of my patients who have opened themselves to the process have gotten relief, although admittedly it is not always an easy or immediate process.

    The problem I am facing now and that I assume others have dealt with as well, is that despite knowing the answer, the fix doesn't just happen. Lol, it's kind of like my lack of success with dieting! I know I'll lose weight if I stop putting cake in my mouth, but... Anyway, I know my pain is from my anger, fear, anxiety etc. it's ridiculous because when I force myself to really think about it, I swear I can feel a rush of oxygen rich blood flooding into my aching muscles and the pain disappearing! Despite this I still keep getting pain. So I know that you keep getting pain as well, and I don't mean to sound so overconfident, but even without examining you and without you going to the Mayo Clinic, I know there is nothing wrong with your body. I know you have TMS, just like you know, but if you're anything like me, especially at night when I can't sleep, because my butt and calf are throbbing, I sometimes start to panic! Suddenly I'm the only one in the world who's up at night, grimacing because I hurt. The biggest gift I give myself is when I can take that step back and say, "JUST RELAX!!!" I am going to get better. I know that. It might not be tonight, but soon. I'm going to be patient with myself but still push myself to do as much as I can. One of these days I'm going to be fine again, there are moments already when this is happening. I pray for you and everyone else going through this. I pray that you will find the certainty that I have, better yet find the certainty that JanAtheCPA has.

    We can all beat this!
    JanAtheCPA and jml19 like this.
  12. Charliekan

    Charliekan New Member

    Btw I used to love Weebles!
  13. jml19

    jml19 Peer Supporter

    I look forward to the day when truth will completely eradicate my fears and anxieties about the symptoms. I expect many can relate to the fact that I have good days and not-so-good days. When the latter hits, I usually find myself starting to focus again on the pain and then have to work hard to think psychologically. The good news is that I'm not beating myself up when this happens. But the thought still comes in (esp. with Thanksgiving coming)..."I am sick to death of feeling bad, of being afraid, of seeing everyone around me enjoy life while I'm miserable, of wondering if I will have to deal with these symptoms the rest of my life". Boy am I sick of those thoughts. Patience is not one of my best qualities but I'm working on it.
    JanAtheCPA and Charliekan like this.
  14. Charliekan

    Charliekan New Member

    I so know what you mean jml19! I do have some snarky patients who when they see me in pain say, " But I thought that book cured you?" While still staying professional, I respond that the personality qualities that made me vulnerable to TMS in the first place are still there. I did not reinvent myself! The big difference for me, the most important difference for me, the thing that has literally saved me, is that I am not afraid! No matter how bad my pain might ever get, and it has never gotten as bad as my first big episode again, I am no longer afraid of being crippled. I will still be an active father, friend, and husband. The lack of sleep is annoying, but honestly even when I've had a "good" night of sleeping, I'm still always tired, so what's the difference?
    JanAtheCPA and jml19 like this.
  15. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    What a great thread, everyone - and Charliekan, welcome! Your insights are awesome, thank you for sharing them.
    OMG - this is me! This is me with mindfulness and meditation. It's part of the procrastination that holds me back, that keeps me from getting a lot closer to 100%, and it's also the one thing that I still beat myself up about.
    I couldn't have said this better for myself. In my case, it was a fear of becoming housebound. That's no longer the case, even on bad days. I am at least able to give myself of lot of credit for being well beyond the really bad times "Before Sarno".

    Charliekan likes this.
  16. Charliekan

    Charliekan New Member

    JanAtheCPA, yeah I think we are all in the same boat in a lot of ways. It was so funny for me to see you writing in this thread btw because though you may have forgotten me, 3 years ago you helped me so much with my first post. Good to see you again!
  17. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    That's so cool, Charliekan! In that case, welcome back! And I hope we see more of you :)
  18. plum

    plum Beloved Grand Eagle

    This is the place to target. Those thoughts are nothing more than a runaway train. If you tune into how they feel, there is a weary momentum. Imagine you are the controller and you pull the lever to make the tracks shift onto another path. Watch that old train chug away to its retirement and then imagine a nice new shiny one take its place. This train holds new and powerful thoughts.

    Patience may be the most important quality of all. Sadly too many people here give up too easily. They don't give a technique time to become familiar, to become known. They'll try it once or twice and if it doesn't work they bag it. Healing necessitates making these things work for you and to do this you have to be playful, curious and patient.

    For example somatic tracking is the key to healing but it takes time to warm to it especially given that our TMS has made us chronically unable to feel into our bodies never mind where they hurt. But that is the work. That is the healing. The resistance we feel is nothing more than a gatekeeper; get passed that and the world is your oyster.

    My observation as a tms veteran, is that people flit from one technique to another and it is evident from the timings between posts that they have not given it sufficient time or commitment. I don't wish to sound harsh, my intention is to help those suffering see that if they nurture patience and work to warm the technique as a potter works with clay, it becomes easier and the process becomes embodied.

    Most healing gets stalled because it stays in the mind and the mind is the thing that gets us in this pickle in the first place.

    I would also add that you have to acknowledge when something isn't working and be of good heart in letting go to move onto something else. This is where playfulness and curiosity prevail. I have tried and don't fare well with journaling, mindfulness or meditation but for others they are the exact methods they need.

    (Interestingly I am a life-long journaler. It just did diddly-squat for my healing.)

    Horses for courses. Just stay the course even if you need change horses midstream. Play the long game.
    Lily Rose, jml19, Ellen and 2 others like this.

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