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Neuropathic pain/CRPS/neurological pain

Discussion in 'General Discussion Subforum' started by Drew, Apr 10, 2020.

  1. Drew

    Drew Peer Supporter

    Hi there,

    I Have been reading other posts for the last year and a half I thought I’ll finally make a new one. I have had crps symptoms and neuropathic pain as well for last 3-4 years and what’s crazy I have seen some amazing improvement when I just pushed myself at the gym and became very active and got busy in life the pain subsided. The neuropathic pain was always mainly in my legs and certain times in last two years I have been working out like an athlete doing lunges, squats upto 200lbs, step up, leg press upto 500 lbs and a lot of biking and cardio. But last 4 months all neuropathic pain has come back with a vengeance and not just in legs but all over especially the burning skin, tingling, electric shocks, cold water feeling, fire ants biting crawling, you name it and I have that neuropathic symptoms. It all started 2015 with patellafemoral pain in left knee which stayed for about a year and then I had a meniscus tear in the right knee. I was unable to walk anymore and I’ve been a very active athlete. From heavy workout at the gym running swimming I did it all. I started icing my knees a lot because after going to 12 orthopedic doctors and nothing conclusive and some wanting to open it up to see just for the sake of it nothing would give relief but heavy ice packs on knees for hours. I Severely burned my left knee and even right one a little. But left one became super sensitive to clothing and anything brushing and me googling gave myself the diagnosis that I had allodynia and crps now. My PT at the time (W) helped some but still I was in excruciating pain for 2 years now.

    Fast forward 2017 I met a new PT who said you have all sorts of tights calf’s etc etc and started giving me these painful massages which is the first time I started having these tingling nerve sensation going down my calf’s (the worst decision of my life).
    He did encourage me to start strengthening my hips so I did start pushing at the gym and honestly saw some improvement in strength and slowly progress with different excercise.
    i traveled back home but it was very tough and certain days just walking was excruciating.
    I met some neurologist and especially this one in LA who said I have crps and we should start with Ketamine or there is no way to stop the nerve pain. I was very frustrated and at this point. I promised myself I will never meet a doctor and will push so hard at the gym and beat this thing.

    also my old PT (W) encouraged me to push through nerve pain as well. So with that motto of Push thru I did exactly that if I couldn’t walk a mile I walked 10 if I could bike for 5 minute without oain at the gym I biked 45. And miraculously my legs got stronger and my pain slowly slowly faded. Instead of wearing just sweatpants I started wearing jeans which was painful at first but then became better n better. After 5-6 months of this awesome progress that I was making I hit up my PT (w) and asked him to help me push thru the few things I was still scared of especially being on my knees since my left knee would throbbing or give me weird tingling burning on the knee and any activity of the knees was horrible painful (if you know what I mean ;)

    so I started meeting him he forced me to wear any clothing that hurts at the gym he made me work out on knees jump pivot do all sorts of height intensity agility workout and god forgot some days I would walk out thinking dude u don’t feel a twinge in your legs or knees.

    duting all this I did notice any super high stress full time my nerve symptoms would come back very strong sometimes even debilitating. I had a big voiceover assignment where I just had to sit but since it was such a high profile job and money on the line and dramas going on. I rmemeber sitting there with my whole body burning nerves tingling speak electric shocks crawly things all over my body. Those soft sweatpants that I lived in for months felt harsh and would burn skin. I was perplexed but still positive as any chance I would get to go back to go to the gym the symptoms would subside. So that was my anchor.

    my PT explained it to me as your nervous system is sensitized so we are trying to desensitize it through workout but yes stress will always cause nervous system to turn on so just don’t panic. Cause obviously every time I would and it would just keep going for days. I travelled to 3 stares on my own had such a good time but nights always while alone in hotel bed I would wake up with burning tingling in legs but this had been consistent sleeping somehow most of the time would cause my legs neuropathic symptoms to turn on and anyone wondering what kinds every single kind of neuropathic symptoms I have had and still get. So whole of 2018 was some great days getting back in life wearing clothes n shoes that I want and some days where every nerve is firing and am almost in tears. End of the year I travel to Australia again great experience throughout the day exploring city doing things but sleeping always same nerve symptoms in legs and if I panicked or called my parents and talked to them
    About it then it would spread all over.

    In 2019 too I’m an actor so sometimes being worried before an audition about getting the symptoms would make em all come super hard and mess up my auditions and it was crazy cause the night before I’m working out like crazy at the gym and few hours later I can’t stand at my audition. I had found TMS then so I started to link it with stress emotions and worry. In summer 2019 went to 16 countries in Europe working out like an athletes in gyms around the world having the time of my life. But again some days were randomly pain spiked especially being back alone in my hotel at night. This has been a huge trend during the day and by the end of the day a lot of times I feel things being decent but moment I fall asleep and wake up it’s like every nerve in my body decide to fire and hurt.
    So with my ups and down in 2019 but much stronger physically than ever I kept pushing through. This year February my mom visited me for 3 weeks and for the first time me being really tired of having ups and downs still after having some amazing days and pushing so much at the gym and feeling like I don’t even have any pain. I was very emotional and kept crying and panicking to her to help me find someone who would put a strop since I wanna move on with life and give great auditions and pure rue my acting career which had been on a stop for last 5 years which is very frustrating.
    I panicked so much that every old symptoms I have ever had came back I could not belive we went to 3-4 more doctors and everytime I had to describe the symptoms to the nurse or doctor or write me down it’s like my body remembered all of it even the left knee sensitivity which had gone away. For Christ’s sakes I was living in jeans in Europe dancing around barcelona, running in Ireland all in jeans and now here I am with the softest pants causing pain at the doctors office the more I told them and my mom that I have conditioned responses while sitting standing the more conditioned I got. I have taken more than 60 flights last year most of em without any problem and here I am at the doctors office panicking cause the minute I sit my calf’s and legs start tingling like a million ants and electric shocks on my knees my neck my back. Everyday I’m on a crps, Bfs, rls or TMS forum researching trying to find what happened for 10-15 hours a days I have gotten so bad I can no longer sit stand or sleep at all everything generates neuropathic sympotm. ‍♂️ The same guy who just 7 months ago set his personal records at the gym
    Of 200 lbs squats and 550 lbs leg press and doing all sorts of crazy legs exercises for past two and half years. CRPS‍♂️ Go figure. I started to look for causes is it small fiber neuropathy, or crps coming back or is it just nervous system overdrive that I’m fueling constant looking for answer back and forth going crazy in pain getting angry at my mother for coming and getting me to this vulnerable stage which I hadn’t been in years. It’s been 2 months of this since February and I have debilitating legs burning sensation, tingles, ants crawling every nerve symptoms happening again. What added to the scare was my same old trusted PT a few months back got a little frustrated with me when I asked why do these nerve symptoms keep coming back. And he started making me repeat that I have neurological pain which can come at anytime with any intensity and I can’t control I can only control my reaction this has mentally sent me into a constant panic as before last two years my progress and getting back in life gave me hope that this will all slowly go away. But now I’m constantly telling myself and my parent that I have an Illness crps or neurological disease for life and I’ll be disabled forever. Because I’m dying in pain and I can’t walk at all. But 7 months ago I was working for hours then carrying bags catching flights to different cities in Europe with zero problems (or atleast very manageable pains and symptoms. I’m really exhausted last 3 months I am contacts on websites and TMS forum or some illnes forum reading for hours then dying in pain everyday. Randomly last two weeks one or two days I did go out and work out in the park and miraculously had zero pain. And the minute I went back to grab a coffee at a store I could stand straight to put sugar in it my whole legs had my calf’s firing the nerves and all tingling and burning came back.
    I don’t understand how could have I done so much damage from reading, panicking with my mom and meeting doctors in just 2 weeks? I have sent my nervous system in such a horrible overdrive. I have started to talk to a therapist she does think it’s neural pathways and and nervous system /danger signals really on high alert and can’t calm and I partially agree. Considering all I have done is read and scare myself and panicked everyday for last 3 months non stop. But the anxious worrried side of me who is such debilitating pain and frustrated of how much he was doing just a few months back to unable to do anything and trust me these nerve skins sensations are the worst things in the world imagine having them 24/7, I can’t stop thinking it’s CRPS or small fiber neuropathy or some neurological pain that does sry for life. I’m scaring myself with worry so much but when I was doing so much at the gym last two years I was back in life enjoying watch tv shows going out with friend but suddenly my moms visit has made me worse than ever.
    I would love anyone advice
    And sorry for the long story.
    Oh and yes I am a TMS personality for sure I mean who works out for 6 hours everyday and loves it. Would love feedback from crps people too cause I don’t understand how I was doing all these crazy workout last two and half years and how I have so much nerve pain I can’t even sit straight.

    would also greatly appreciate advice from @SteveO or Alan Gordon, daniel lynman or @drado or anyone else Apple to conquer this horrible neuropathic problem
    Last edited: Apr 10, 2020
  2. Wilcox2969

    Wilcox2969 New Member

    Drew, all this sounds exactly like myself 4 years ago! The biggest enemy you are dealing with is fear!! There is literally nothing wrong with you, you need to stop letting the "what if's" control your mind. As long as you are scared of what you think you have, you will never get past it. It's really as simple as that.
    Kittyruns, Drew and tgirl like this.
  3. Mala

    Mala Well known member

    Drew you have written in great detail about all yr physical symptoms & I'm sorry that you are going thru so much.

    Many others here have had the same symptoms you have described.

    You say you have a TMS personality & I think you do too. It would seem that you are very occupied with the physical maybe because yr job requires it.

    How much of Sarno & TMS have you read up on?

    Have you looked into the SEP or tried it?

    Have you tried looking at emotional aspects & stressors in yr life?

    There are a lot of resources available for you here at TMSWiki including stories of how ppl healed. I urge you to look at all the material & do the work.


    Drew likes this.
  4. Drew

    Drew Peer Supporter

    Hey Wilcox 2969,

    thanks so much for the reply.
    I totally agree the fear of the sensations and symptoms I think is my biggest obstacle. The minute I wake up I start checking to see how much I’m burning today, is it just the leg or whole body do I have tingling today or shocks or is the burning gonna make it tough to walk or wear a clothing , are the calves tingling intense or less today. And obviously the second I start checking inevitably I say feeling stuff.

    this was the first week in 3 months that I stopped going to found or doing obsessive google searches about each symptom for hours and already my symptoms went down by 50 percent crazy.

    now I’m just confused at thee fact proper steps I need to take to get better which I feel is my problem to, trying to look for the best way to get over this and then if I have a minor or a major flare up then panicking as to what did I do wrong oh god I was having a decent day is it all gonna be fucked up did I mess up the progress again.

    the emotion part I do understand and there’s a lot of daily pressure and repressed emotions I have which also scares me cause a lot of it is not under my control and a lot of the fear the implications of the pain/symptoms in my life.
    (Like will I ever be able to audition again properly with all these horrible sensations, will I eve be able to live a normal like excercise, date or have fun if my body or legs are always burning or am having sensations, oh lord I can’t live a whole life like this).
    So I kinda feel stuck since the major fears are related to pain and these horrible nerve sensations and symptoms.

    what do u recommend is the best way to go about this? Just not care about the symptoms? Like the intensity of it goes high or low? It’s just tough u know since it’s all over legs and then if I panic than all over body so tough to ignore. Would love to know what I did to stop all this tingling burnin electricity pins and needles and cold water etc basically all the parasthesia feelings.
    Especially hate em when they start it as soon as I wake up it’s like I don’t even have control cause I literally just woke up.

    Thanks man
  5. Avnita Suri

    Avnita Suri Peer Supporter

    Hi Drew
    You've already started to progress; your symptoms went down by 50% by not obsessing, so well done!
    What I suggest is that you try journaling first hand. Write down the current stresses in your life. Be honest like no-one is going to read it. Then write down what was going on in your life when your symptoms first appeared; like start with the symptom you noticed first. Again, write what was going on in your LIFE at the time and what you would have liked to have happened. See if you can find some internal resolution. Do this for one week and then let me know how it goes.
  6. jula

    jula Peer Supporter

    How are you? I have recently started getting nerve pain in my body because I panicked about getting a neurological disease. I also have burning skin sensations, random pain, random shooting pains, etc. I am pretty sure it’s TMS but I am really scared right now.
  7. TG957

    TG957 Beloved Grand Eagle

    @Drew, CRPS is TMS. Read my success story. @miffybunny also fully recovered from CRPS. We did it, and you can do it too!
    Ellen and miffybunny like this.
  8. Drew

    Drew Peer Supporter

    Hey, I’m still struggling myself have had so many ups and downs last 3 years so it can be very frustrating. You can message me directly if you want and we can bounce ideas haha I have some advise but then again I’m not healed completely. Hope u feel better
  9. Drew

    Drew Peer Supporter

  10. Sunrise

    Sunrise Peer Supporter

    Hey Drew, I have a very similar story. I reached out to you via message.
  11. ReyDementor

    ReyDementor Newcomer

    Wow, it's so great! I was inspirited by your progress, maybe I'll get something like that. Thank you for your story
    Drew likes this.

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