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In the midst of a complicated, scary, lonely journey

Discussion in 'Support Subforum' started by BrooklynGal, Jan 20, 2015.

  1. BrooklynGal

    BrooklynGal Peer Supporter

    My Case:

    Hello, I'm new to posting in the TMS wiki, though I've been reading it as a means of support in this trying time. I was scared when my back pain was happening, but now that it has turned into nerve pain (tingling, burning, numbness, muscle soreness) in both legs, feet, and all of a sudden last week, my left arm and upper back, I've gotten completely terrified. I got a nerve conduction test for my legs (not my arm) back in September. It came back as having moderate lumbar sacral plexopathy without motor deficit. The findings were that my right Saphenous and Peroneal nerves were moderately irritated/damaged and my left ones were mild. Though my symptoms have gotten much more severe since then.

    This an incredibly long post. I don't necessarily expect anyone to read it all, though if you do, I thank you and I'd love to hear your thoughts. I just wanted to write this to get it out. And it sure was cathartic.

    Let me start at the beginning...

    June, July, and August
    Back in June (2014) - after a workout, my glutes and piriformis got very tight. Though common with me, that my muscles, especially those in particular can get very tight after a workout, this time was different. They were clenched for a week (it was hard to sleep) and when they finally released my back wasn't the same. I had bad back pain very local on the left lumber (with no nerve pain) for about 3 months. I was diagnosed with a sprained SI joint by several chiropractors and initially told it would heal within a month - then six weeks went by, still no relief - then 3 months.
    *Note - when going back to this month with my TMS investigator lenses on, I made some of the biggest life changes. 1 I had been on Lexapro 10mg for anxiety/OCD for 12 years. I weened off of it and this was my first month without it. I also started an extreme diet. Cut out all sugar (including fruit and alcohol) and was hovering at about 1150 calories a day (under a nutritionist's guidance). I do remember when he said "Once you loose weight, you'll finally be healthy." and me registering it and thinking "when then I guess I'll have to find something else to make me sick".

    I got spasms for the first time in my life - 2 weeks of pure hell. Pain so bad I wanted to kill myself. That went away and I decided to go in for an MRI. That showed L5 S1 (like everyone else) with pressure on my theca sac. Then at my chiropractors behest, I went to see a neurologist who did the nerve conductor test, findings above. I did 2 weeks on Etodolac (Lodine) prescription anti-inflammatory. That was a big help. Then I went off of that, waited a week and started Reconstructive Therapy shots twice a week. Those shots are not cortisone, they are "holistic" updated prolo-therapy. I went religiously, took all the Dr's supplements and never missed a beat. I was "healing" fast and starting to feel like my old self again after a 3 short weeks. The symptoms subsided and I was pain free for all of October through mid November.

    The most stressful time in my life. I was working 18 hour days, spending the other 2 hours at the chiropractor and then at the Dr's office awaiting my shots. I was sleeping 4 hours a night and barely eating. (I'm a filmmaker and my movie was coming out). I got bronchitis and feared I wouldn't be able to go to LA for my film's premiere. I was on antibiotics and was out talking to someone. Someone else hugged me, like a bear hug and then my back and everything in my body just "went out". I only could get one more shot before I went to LA (the shots are cumulative). I was cleared to fly, I went to LA, my bronchitis got worse, my back got worse, and then I had my period which was never so bad, but this time was horrible - the month before had been bad too, but nothing like this. In LA, my back pain turned into hip pain and I could barely walk. Even though you're not supposed to take anti-inflammatories while getting the shots, I caved. I took one or two around the time of my period. It was enough to get my through the pain, but not enough to get me hopping on a plane. My friend's brother is a chiropractor in LA - so I went to see him. He practices Gonstead, which I had never heard of and took one look at my X-rays (I've also had scoliosis since I was 12, though it never bothered me). He said, if I didn't see this one chiropractor in New York, I would be in a wheelchair in 10 years. Keep in mind that in November it had only been 4 months since I was completely able bodied. This came as a major shock and really scared me.

    End of November/December
    Against my better judgement, I made an appointment with that chiropractor in New York. I signed up for his treatment plan. When I started I had no nerve pain (though I had previously had the study that indicated there was a problem but I was currently asymptomatic). I saw him every day for 2 weeks and then was moving down to 3 times a week. He prescribed in office traction, and at home traction along with posture exercises. The first couple of times I did in office traction, it was okay. The third or so time, I felt a volt of energy down my legs and my nerves completely flared up. Every time you go to his office, you have to circle a list of symptoms you have. I never had tingling or numbness before or pins and needles or burning before. I guess I don't really know those were options until they stared at me from this form on a clipboard everyday. Well, suddenly I had all these symptoms and then some. Cold feet, weak muscles, back pain. I was talking to my neighbor who had a micro-discectomy and told me that if I was feeling nerve pain, my nerve root was dying and I needed to get it check out right away. Then I asked the chiropractor about it, he told me that it was very bad that I was feeling nerve pain and that he'd much rather I feel back pain. He told me there could be permanent damage and I might never feel the same again. Of course that flipped me out even more.

    Then I got my period. If I thought my spasms were bad (and they were terrible) I didn't know how bad pain could be. My Dr. who did the shots was away and I took the prescription strength anti-inflammatory, which was just starting to make a dent. I went to the chiropractor, in a state of pain haze, got traction and had to stop. I went upstairs to see the chiropractor and passed out from menstrual pain in the changing room. The rest of the day was a pain blur.

    I started taking the anti-inflammatoried again and reading "Healing Back Pain". In fact, Dr. Sarno was the first person my original chiropractor/friend recommended I know about when the pain initially started, in June, but I thought it was a bunch of baloney. Then my Mom started reading it and kept nudging me to read it. I don't know if it was the anti-inflammatory, or the book, or the fact that I just started dating someone I really liked, but all my symptoms seemed to be improving or changing. One day my back was killing, I fell asleep reading the book and I woke up in the middle of the night with severe chest pain, but no back pain. A win! And as so many of you here have stated, I saw myself on every page and the personality profile summed me up to a Tee. At that point, two of my toes on my right side were clawing under which was very painful and within a few days they started to resume back to normal. Though terrified by what was happening to my body, I was in the throes of a brief but passionate relationship. And thanks to Dr. Sarno had hope that there was nothing terribly physically wrong with me. And since I am who I am, I did lots of research and found a TMS Dr. in New Jersey. I made an appointment with him for the beginning of the New Year and an appointment with the well known TMS therapist Arlene Feinblatt who worked with Dr. Sarno for what, 30 or 40 years. I was excited to get my potential TMS under control.

    The guy calls off the budding relationship out of the blue on New Years Day. He just got out of a nearly decade long relationship and needs time to clear his head. Blow number 1.

    I go see the TMS Dr. in New Jersey. After 2 hours of a thorough conversation detailing most of my life's big traumas (there is some stuff in there) and check-up of my body he confidently tells me exactly what I want to hear. That I have TMS. I tell him about my painful period too and he says, get that checked out just in case. He gives lectures on TMS just like Dr. Sarno, but I just missed it by a day and the next one isn't until mid February. Bummer.

    My pelvic pain worsened, despite being mid cycle. I make an emergency appointment with my gynecologist. She sends me to get an ultrasound. Turns out I have a bleeding ovarian cyst. That's 1/2 a relief that I'm not completely crazy and that it wasn't something more dangerous. She tells me that we'll keep an eye on it but she's not worried.

    Mid Jan - I'm feeling good(ish) in my body, though in my mind I'm devastated by the break-up. I wear low heels out one night. My hip starts hurting. I don't know if it's the heels or the fact that I thought... 'if I wear heels, will that make my back hurt?' and implanted that back in my mind. It hurts a bit the next day, but I take 1 day worth of the anti-inflammatory. The hip pain goes away but I started to get bad heartburn from the anti-inflammatory so I know I have to keep away from that for a while. My body's feeling good and knowing I have to go away next week, I think "Oh, I should just go get one more prolo-therapy injection for good measure." That completely went against Dr. Sarno's philosophy. And I'm so mad at myself for doing, but what's done is done. That night, I woke up in the middle of the night with a jolt of electricity running down my legs. And when I woke up the next morning not only was all the nerve pain back in my legs, but in my upper left back and left arm too. I've never had any kind of symptom there before. And my mind goes to all the dark places it was in in December. Do I have MS? Do I have ALS? Do I have some weird undiagnosed disease that no one's ever heard of? Is this there rest of my life? Does it get worse? What's next? --Or did the fact that I got treatment and in some respect reject my TMS diagnosis make the symptoms come on again and worse? I put in an emergency phone call to the TMS Dr in New Jersey who tells me "The less your symptoms make sense, the more likely it is you have TMS." Being a hypochondriac and consumed by health, my mind then went to, 'what if these symptoms make perfect sense for a disease I haven't been diagnosed with yet?' He also told me I had to pick one form of treatment and stick with it for a number of months in order to see improvement. I was planning on it, but my nerve pain got so uncomfortable over the weekend and I'm supposed to be going away in two days, that I made an appointment with the neurologist/pain Dr. to get an steroid epidural. When I asked them if the epidural would help my left arm too, they said no. That the left arm is controlled by the cervical spine and not the lumbar. That triggered something in me. How is my left arm tingly/itchy all of a sudden involved now? Is it TMS? Is it that weird mystery disease?

    I was lying on the table ready for my epidural, with the fluoroscopy all set up and right before he started, I freaked out and left.

    Last week I saw Dr. Feinblatt who was great. She referred me to another TMS therapist that I've seen once but will be seeing regularly - twice a week while my symptoms are really bad. But here I am, in the middle of a mind struggle. I feel so lonely, isolated, scared, anxious, depressed. Did my brain pick nerve pain because it's the scariest (to me)? Do I have something seriously wrong with me? Are my nerves really not going to be permanently damaged? My brain races and goes back and forth. I know I need to pick a diagnosis - I want to pick TMS - but how do you make yourself stay there, when there is a possibility of other issues?
    npoise and map76 like this.
  2. map76

    map76 Peer Supporter


    I don't have any advice per se, but I can relate to how scary, depressing, and stressful your experience has been. Just wanted to send you some love and let you know you're not alone.

    Those doubts start to creep in (often supported by well-meaning doctors) and it is so hard to ignore them.

    In answer to your question, I do think our brains pick the scariest symptoms in order to keep us preoccupied. I have had some of the most bizarre and terrifying sensations in my body from TMS. It just makes me feel like I am all alone with this weird illness and no one on the planet could possibly understand. Like I am an alien or something.

    I have to remind myself over and over of the ways my symptoms "don't make sense", and how much they fluctuate.

    Wishing you a speedy recovery. You will get better!

    Balsa11 and Ellen like this.
  3. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Hi, BrooklynGal. I read your complete post and feel sorry you are in such pain in various places and have
    gone through so much medical treatment. For starters, you say you are a hypochondriac and consumed by health.
    That alone would cause emotional and physical pain. The guy calling off the brief but passionate relationship is also.

    You are in a stressful occupation, filmmaking, and had the additional stress of needing to go to LA for your film's premiere.
    Wow, another biggie cause of pain.

    You have been on a ski slope of pain for months with just short periods of relief. Maybe those were from seeing
    TMS specialists. I think so.

    Your post didn't mention any other possible TMS repressed emotions but it looks to me like those are the causes of
    your pain. The Structured Educational Program is great in helping us discover our TMS repressed emotions,
    such as anger from traumas as far back as our childhood, and/or a perfectionist and "goodist" personality.
    That's what most people look into in order to heal from their pain.

    I think you need to stop having more tests or taking medication and put your mind 100 percent on believing
    your pains are from TMS emotions. If you work long hours and get little sleep, that sure doesn't help.
    You need to find ways to spend less time even thinking about pain and more time on just relaxing and
    doing things you enjoy.

    Deep breathing is one of the best ways you can relax. It has a profound calming effect on our mind and body.
    And live in the present moment, not in the past or future.
    Think positive, that you are soon going to meet the right man.

    Journaling helped me discover traumas going back to my boyhood. I was able to realize my parents and
    older brother who gave them to me had their own TMS from repressed emotions. This better understanding
    led me to forgiving them, verbally and mentally, because by then they had passed on.

    Think about, journal about, your girlhood days, but only for about an hour a day. Spend as much of the
    rest of the day and night doing things you enjoy.

    I hope some of this helps and that you will keep posting.

    You say you know you need to pick a diagnosis and want to pick TMS. I agree totally. This is the direction
    for you to go, and it should help relax your mind and drive away doubts and fears that anything structural
    is your problem. MindBody healing such as accepting belief in TMS has helped many thousands heal from pain,
    me included (I had severe back pain). Dr. Sarno's books were my gateway to healing, and so was
    Steve Ozanich's The Great Pain Deception. I wrote one with another TMSer, Eric Watson, adding the faith elelement
    to TMS healing called God Does Not Want You to Be in Pain. It's in paperback and Kindle from amazon.com books.
    Ellen and map76 like this.
  4. BrooklynGal

    BrooklynGal Peer Supporter

    Thank you Mike and Walt so much for your speedy replies! Sometimes the Internet can be a great place.

    Yes, my career can be very stressful, but I'm actually taking time off right now. I'm in between projects and am spending my days doing leisure activities. Mostly reading about TMS and how to help cure myself. I went on an Amazon shopping spree for books. I don't know if I bought yours but I will check, and if I did not, I will.

    I feel like the difference with my case is that my nerve conduction test came back as having irritation/damage - whereas most people on this site's nerve tests came back negative. Is this going to cause permanent nerve damage? Some say yes, some say no. Also, the fact that those shots initially helped me and the anti-inflammatory works like a charm is confusing. Could it be that those were both great placebos?

    I have no doubt in my mind that I have TMS (for other things - anxiety/OCD). My doubt is that - do I have TMS for this or is this another disease? Then I think, well if I non-anxious person had these symptoms, they'd probably just deal with it instead of obsessing over it. Maybe they'd go to a Dr and get a shot. Or maybe they'd just try and ignore it until it got so bad and go see a neurologist and take a course of action from there. But the way I'm handling it is thinking of worse case scenarios and becoming paralyzed by the fear of the unknown and it's eating away at me, taking over my life.

    Either way, I have to not let it consume me. I really need to keep reading about mind/body issues and practicing mediation and calming techniques.

    Again, thanks for the words of support. I'm happy to hear more words of wisdom. But Mike, don't tell me your symptoms cause then I'll probably get them too. LOL
    map76 likes this.
  5. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi BrooklynGal,
    I think, observing you, that your symptoms and your busy mind have worked you into quite an anxious place. I can relate. You have gotten good advice to stick with one diagnosis and approach for a few months and try to be patient. When I was at my most anxious, and headed for surgery (which Dr. Sarno's practices prevented me from) I used two therapeutic add-ons to calm my mind.

    One was a hypnosis tape I had a practitioner create for me. It was calming and meditative.

    The other was Alpha-Stim, which runs an electric current through the brain!?

    Both seemed to help me, to get calm enough to engage the Sarno method. You may find the same support by getting the therapist help. Breathing, music, beauty all helped to calm and distract from worry and center me too.

    Also, just seeing how worked up you are, right there you have plenty of evidence of deep turmoil which is the cause of TMS. You can use the anxiety you experience as the cause of the pain. And it doesn't have to reduce or go away in order for that understanding to help reduce the symptoms, in my experience. You just see the true cause is emotional.

    Good luck with this especially rough time.

  6. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Hi, BrooklyhnGal... Andy';s advice is good. Your symptoms really do sound like TMS
    and his advice can help you to relax and heal.

    Total, 100 percent belief in TMS is not easy for most people, me included.
    I withheld about 10 percent thinking my back ache was structural because of my age (82)
    at time the pain began. I've been free of the pain for two years now. It took 100 belief in TMS.

    Maybe do some tapping and tell yourself you believe 100 percent in TMS.

    Lots of information on tapping in the subforums or go to Yolutube
    for "Louise Hay sits down with Tapping Solutions' Nick Ortner." It's great.

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