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Nasty symptoms - TMS? help!

Discussion in 'Support Subforum' started by beachgirl, Sep 29, 2013.

  1. beachgirl

    beachgirl Peer Supporter

    Hello from Long Island, I just found this wiki last week and am so relieved! I'm having awful trouble with symptoms and hoping to get help on the Wiki and get anyone's ideas who would be able to share. I am having so much trouble with my current condition :(. I have recently experienced rapid hair loss, which started a few months ago and It is very frightening. My doctor said it is stress related and also related to iron deficiency which they found when they tested my blood and based on the fact that the hair loss came on so suddenly as is the case with hair loss related to stress and iron deficiency. They said this was very common with women who have levels of iron as low as mine and put me on high doses of iron supplements which I started many weeks ago. The DR said it will stop soon and there is no permanent damage in my scalp and my hair will grow back. Unfortunately the hair loss continues and has me obsessed, miserable and frightened. I look terrible and have isolated myself for the past few months because I am so uncomfortable and upset about how I look.

    Soon after my hair issue began, I suspected TMS. Many years ago I had debilitating back pain for a year and was lead to Dr Sarno who I saw and I was and have been cured for many years ever since. That recovery wasn't easy, I read and studied his books for months and continue to use them for other conditions to this day. I am a true believer of TMS theory as well as a classic TMS person, many different types of physical symptoms, lots of repressed emotions and relief upon reading TMS literature.

    Besides having a belief in TMS and a history of symptoms, the timing of this onset seems very suspicious. I also suffer from bad anxiety and finally decided to try new antidepressants to resolve the anxiety after suffering with it for many years (my whole life). I was on one med, but it hasn't worked so well but lived with it for years for fear of changing. Changing meds, trying a new one was a BIG DEAL, finally I thought I would be cured of the anxiety that ruined my entire life. I started the meds with much promise and to my horror, within less than a week of taking them my hair started to rapidly fall out. One week I had very thick hair, the next I could see my scalp showing all over. I googled antidepressant and hair loss and more horror to find out many other women experienced hair loss from them. I immediately stopped the meds after taking them only a couple weeks was but still my hair continues to get rapidly and frighteningly thin three months later.

    I read Sarno say many times the 'symptom imperative' will just pick something else if you treat one symptom such as like anxiety like I did and he even says if you take an antidepressant to solve your emotional TMS aka anxiety, the symptom imperative will go back and give you a new or,different physical symptom. I also suffered from a life-long eating disorder which I finally got under control last year. The eating disorder controlled my every thought, every waking moment. It was a complete constant battle like the anxiety and now my hair. and the results are exactly the same from all three disorders, eating, anxiety and hair loss, I have terrible shame over each, dont want to leave the house or be with people, am completely obsessed and all three have ruled my entire waking moments and ruined my self esteem and left me with an incredibly limited life - each disorder in its own way. It makes perfect sense that once I conquered these two major disorders, food first last year and now anxiety that my mind would find something else. maybe hairloss?

    Currently I am under immense stress. I have been recently unemployed as an exec assistant in NYC and just ran out of all my savings and having no luck finding any type of work. The fear is so terrible, I lie awake at night feeling like I could die from it. I am on my own with no family to help me and no means to support myself. That makes the hair problem all the worse since I need to get a job and am so embarrassed and afraid to be around people. Just trying to look normal in the morning is an awful ordeal trying to deal with an awful hair mess and knowing I don't look good no matter what I try. It is easy to see how this stress would lead anyone's hair to fall out. However this is not the first time I've had such stress. I have suffered so much family and personal crisis in the past years, as bad as my current situation is, this is not the first time I have been under so much stress. I can only come back to the timing in this which is days after I thought my anxiety disorder was finally solved with the antidepressant something else, a new problem which ismthe hair loss , came up - more TMS.

    Even after saying all that I am not fully convinced. I still live in constant fear and obsession of my symptoms and since it is such an unusual symptom it's hard to see it as TMS. A pain syndrome yes, but hair loss?! It's so bizarre I have a hard time grasping onto it. Since my sick mind can't cure my own sick mind I am hoping for your input on the wiki to set me straight and convince me. Somehow when other people say it the impact is alot greater so please chime in. Even if you see this months later please see me what your think. I am truly scared and desperate for this to resolve. I have no life now and I want my normal life back. Help help and HELP! Thanks for reading!!
  2. nancy

    nancy Well known member

    Hi, just keep reading Sarno's books over and over, journal as much as you can about your life.
    Journal about you past present and the future worries. I have pain myself but am improving
    little by little after following his advice. You will over come this if you do the work! Think very
    hard about your life and write about your experiences being very truthful with yourself. No one
    else will ever read what you write, I shred my journaling when I am finished. I hope to hear from
    you again and wish you the very best with this stress related malady. Nancy
  3. Forest

    Forest Beloved Grand Eagle

    The major theme that I took away from your post is fear. From what you wrote, I can tell that you are going through a very difficult time, and are set up for the perfect storm for TMS to come on again. The fact that a doctor told you it was stress related is a very good sign that you have TMS again. TMS can and will manifest itself in wide range of symptoms. Why did it happen to be hair loss? Because it was able to get you to obsess over it and be in a state of constant fear. Often times people who have recovered before will develop new symptoms that are not pain related.

    Beginning asking why you have so much fear right now. In your post you wrote some form of the word fear 13 times. This fear is the driving force behind your TMS. If you can find a way to reduce that fear, you will be able to make progress.
    nancy and Ellen like this.
  4. honeybear424

    honeybear424 Well known member

    Hi Beachgirl,

    I'm so sorry to hear what you are going through. If I were you, I would definitely suspect TMS again, especially since you have been dealing with anxiety all of your life. As Dr. Sarno says, it is a TMS equivalent.

    I, too, have been dealing with anxiety for most of my adult life...along with TONS of symptoms. Since finding Dr. Sarno a little over a year and a half ago, my constant headache has subsided some, but about eight months ago, TMJ struck worse than I've ever experienced. I'm struggling with all kinds of pain in my mouth, from tingling and burning sensations to jaw pain to dental pain in teeth that were treated with root canals over a year ago. It is maddening, and I am trying so hard to keep the TMS course. Seems our brains will locate the pain or symptom wherever it knows we most fear it. Guess I should mention, lots going on in my life with a daughter who recently moved to the dorms for college, me going back to school, and my husband's job possibly requiring a relocation!

    Oh, and by the way, I have a close friend who has had anxiety all her life and has been struggling with hair loss as well.

    So glad you found this forum!!! :)
  5. beachgirl

    beachgirl Peer Supporter

    Thank you all for your replies. It has much more depth and weight to hear things from people other than myself. I can trick myself so much that i dont really believe something as much as I do when someone else says it.

    I am very relieved to hear that you know of someone else Honeybear that has stress hairloss. Since it is not mentioned as a typical TMS symptom I have a harder time believing it is. It would be much easier to believe easily it was TMS if it were a sickness or a pain syndrome that is always mentioned. Your examples of your oen symptoms, Honeybear help a lot as well since they are not the usual types of the things typically mentioned.

    Forest, I do have so much fear.I have a lot to fear since I have no income and no way to support myself. I know fear drives TMS. One of my big stumbling blocks is that I can not easily solve the money problem, so I cant stop the stress from external circumstances, and since I cant stop the stressors I feel I can not get better until I take care of the stress and money problem and since I cant do that I feel I wont be able to get better. I know Sarno says we don't have to solve our inside issues to get better, that we just know they are there and causing the syndrome.But in my case, I feel like I have to stop the stress and fix the inside stuff in order to get better.

    Also, even though I think it could be TMS with my hair loss I don't feel like I will get better. I don't think it will stop falling out and I don't think it will grow back. Even though the DR assured me it would grow back, it would stop falling and soon,I feel like it will be a long time, if ever that the hair loss will go away. Its not easy to measure like pain is, so I can not get that daily reassurance I am improving. When I had back pain my progress was measurable. I could feel the pain lessen, so I knew it was working. With the hair loss, all I see is the negatives of the syndrome, you cant see fast or any improvement, so harder to believe it is or will work. The little ray of hope from feeling a reduction in pain when I had back pain- even a tiny bit- was what kept me believing my back pain would be cured by applying TMS principals. There is just no way to tell with hair loss since improvements , like new hair, can take so much time to see. So I am held back with no evidence to reassure me it is working. Even a little. :(

    I would appreciateI your help and smart words to set me straight for anyone who wants to comment. This is sooooooooooo upsetting and discouraging. I hate to look in the mirror,it is hearthache on top of everything else that is so scary and wrong right now :(
  6. beachgirl

    beachgirl Peer Supporter

    I decided I am having a hard time believing my current symptom which is hair loss is TMS after all. I though I did but now I have doubts because it is such an usual symptom and people don't mention it hardly ever as TMS like you hear with chronic pain. Anyone that can help remind me and convince me, it would be very helpful. The denial and doubt want me to stay stuck in the illness. The more times I can hear this hair loss condition is or could likely be TMS, the more I can then believe and the more I hear about all the other different types of illnesses and symptoms that this TMS can manifest in the better to convince me, help! Really struggling.
  7. honeybear424

    honeybear424 Well known member

    This thread by Steve Ozanich is amazing:


    If your doctor told you it is stress related, you have suffered with anxiety your whole life, and as Dr. Sarno says anxiety is a TMS equivalent, then you have good reason to believe that your hair loss is how your particular brand of TMS is manifesting in your life. It sure has your attention, doesn't it?! What have you got to lose by treating it as such?

    Have you read Steve's book, The Great Pain Deception?
    Ellen likes this.
  8. Forest

    Forest Beloved Grand Eagle

    Remember the reason TMS manifested itself as hair loss is because your unconscious knew it would be very difficult for you to see it as TMS. It is your fear that is driving the symptoms. We have a couple pages that may be helpful for you. Both the Living Tension Free and Self Monitor are about various ways you can address the fear and obsessiveness that comes along with your symptoms.
    beachgirl likes this.
  9. beachgirl

    beachgirl Peer Supporter

    Thanks,so much for your reply HB. I can think it is TMS one minute and in the next be full of doubt. The power of this symptom to create fear and doubt is very strong. Your comments help me think so much more it is TMD when I see it said by someone else in black and white.

    Just started Steve's book, it's amazing, haven't seen the article though. I will check it out.
  10. beachgirl

    beachgirl Peer Supporter

    Thanks Forest. This is a VERY helpful and powerful reply and I need that big reinforcement to overcome the stranglehold this symptom has on me - and my hair! You are right, it picked something that I would find hard to believe is TMS and it is very scary to go through this. Lots of fear. I will check out the articles/pages you suggest.
  11. Alan Gordon LCSW

    Alan Gordon LCSW TMS Therapist

    Hi Beachgirl,
    A couple of things. First, if indeed this iron deficiency is causing your hair loss (I don't know if it is, I believe there may be a TMS dermatologist in NY actually...) this condition can take time to reverse itself. Sometimes months. Be patient, you're taking the right steps.

    I can imagine you waking up every morning, looking in the mirror, seeing if it seems thicker than the day before. This is serving the same purpose as your previous eating disorder - complete all-consuming preoccupation.

    Don't let yourself engage in this behavior. Set a rule that you're only allowed to look at your hair in the mirror once a week (you can wear a hat or something if you need to put on make-up or do something else that requires looking in the mirror). This type of behavior serves to take away the preoccupying stimulus.

    Let yourself know that hair loss can take time to reverse itself, and give yourself positive self talk that this will happen eventually. Your goal is to soothe this terrified inner child, like Mandi does in this mini-session: http://www.tmswiki.org/ppd/TMS_Recovery_Program#Provide_Comfort

    If in fact your hair loss is purely TMS, and has nothing to do with the iron deficiency, that's okay too. Learning to comfort your inner child (or primitive brain) will have the same effect of reducing your stress and reversing the process.

    I've worked with clients who have had hair loss solely as a TMS symptom, and those who have had hair loss due to physiological reasons (hormonal fluctuation due to pregnancy, etc.) The important thing to remember is, you don't have to drive yourself crazy trying to determine whether it's physiological (iron deficiency) or psychological (TMS). You know why? Because you can take iron supplements and soothe your inner child. That way you're covering your bases, and eliminating one more source of anxiety (is it because of x or is it because of y?)

    I may be completely off the mark, but I do wonder if there could be body dysmorphic disorder component to this. This is often common in those with a history of eating disorders. I wonder if you're actually seeing your hair as thinner than other people see it. It might be a good idea to ask someone who knows you if it looks as horrible as it does to you. Again, this may not at all apply to you, but I've worked with clients who have seen terrible acne on their face when in fact their skin seemed quite clear. Sometimes our eyes deceive us when our unconscious mind is desperate to find a source of preoccupation.

    It's clear from your posts that you are in a lot of fear. If it's possible for you financially, I'd recommend seeing a therapist, someone who can help give you the tools you need to soothe yourself. There's a fantastic therapist in LA, Lindsay Stanford, who has a deep understand of TMS, and conducts Skype sessions for $50 per session (lindsayrstanford@gmail.com). I'd recommend contacting her if it's at all possible for you financially.

    If that's not feasible financial, I'd recommend listening to the session with Mandi every night before you go to bed, and work toward honing an internal sense of safety, to protect that scared inner child that so desperately needs soothing.

    Good luck
    JanAtheCPA and tarala like this.
  12. Pandagirl

    Pandagirl Peer Supporter

    Hi Beachgirl, I'm so sorry you are going through such a difficult time right now. I wanted to comment on this thread, because I can relate to your fear and also have some experience with hair loss and obsession over it. I'm also "Mandi" in the recording that Alan links to above. I promise if you follow his recovery program, you will start to feel better!

    I went through a difficult time in my personal life, over the last two years. I was in a HUGE state of high-alert for a long period of time. I didn't lose my job, but I was a stay-at-home mom after having 2 kids in 2 years and feeling like I was failing every single day. I remember waking up one morning and telling my husband that I wouldn't blame him if he wanted a divorce. I was in constant fear that I was going to lose my "job" as wife and mom because I could not pull myself together. I realize now that I had much more control than I thought. Just as you feel you can't remove the stress of not having a job at the moment, I could not remove the stress of having 2 very young children that needed me 24/7. My husband travels and my closest reliable relatives are in England. I love my children dearly, but the demands, crying, waking up all through the night felt endless and hopeless. I had constant thoughts of not being able to make it through the day. I thought I would literally die from a lack of sleep! I looked in the mirror and felt sick and unhealthy. I even went through a period of time when I noticed that my pupils were different sizes and I became very obsessive. Every time I passed by a mirror I would check them, convinced that it could be a sign of something very sinister. BTW, if you can't tell, I'm a hypochondriac! :)

    About 4 months after I had my youngest baby my hair started to fall out in handfuls. It was frightening! I had to vacuum my bathroom daily and the sight of it was so alarming. I think we all associate hair with health and it can be very scary to see it fall out. I was in so much fear that I couldn't think rationally and realize that I was going through major hormone fluctuations being postpartum and nursing a baby, not to mention stress. I also had low iron at the time! I finally asked my good friend, who cuts my hair, to take a look and tell me how abnormal it was. She almost laughed at me! Her reply, "Well, you have no shortage of hair, it's still going to take me a half hour to blow it dry." So, as Alan points out, you could be seeing a distortion of reality.

    What changed for me aside from taking iron supplements? My THOUGHTS! I didn't give my kids away, I still don't have help from family and my husband still travels. I was up from 12 - 6 a.m. last night with a teething and runny nose baby. Instead of allowing myself to think, "If I don't get to sleep, I'm going to feel awful tomorrow," or "I can't take this crying, this stress is going to make me ill," I focused on soothing myself and my baby at the same time. I rocked her in the glider and told her what we both needed to hear, "You're ok, just relax and let go, everything is going to be fine. I love you."

    I also routinely manage toddler meltdowns with belly breathing. When my 2 yr old is losing her mind, I make her look me in the eye and we both take deep breaths until we both calm down. I would never yell at her, say negative things to her and tell her that she can't handle the situation. If I don't say it to her, why is it ever okay to say to myself? Obviously this is something that I still work on daily as it something that has become such an ingrained behavior that I have practiced for so many years.

    Maybe your hair is noticeably thin. So what? You may go on an interview and think that someone is judging you because of how you look, but I can assure you that you can't read someone else's mind. Who is to say that the person interviewing you hasn't had their own struggle with hair loss, acne, or any other visible physical symptom? In fact, before I left the corporate world, the last person I hired suffered from severe back pain (and several unsuccessful surgeries), was overweight, walked with a cane and had very noticeable thinning hair. She turned out to be my best employee!

    My baby is now 11 months old, I'm just now starting to pull out less hair and still taking iron. There's no harm in treating it both physically and emotionally and allowing it time to resolve. What matters most is that you stop obsessing and you soothe your inner child that feels afraid and helpless.

    Best wishes to you! Be kind to yourself! :)
  13. tarala

    tarala Well known member

    Hi beachgirl, I really can't add much to all the other wonderful posts above, other than I too had hair loss during a high stress period in my early thirties. Instead of overall thinning, it was one area that was totally bald. In my case at least, it was definitely TMS, did finally clear up, and never came back. Though at the time my symptoms just switched to something else for me to obsess about :)
    I love the advice to soothe yourself rather than scaring yourself, good for me to remember too.
    beachgirl and Pandagirl like this.
  14. Pandagirl

    Pandagirl Peer Supporter

    Beachgirl, this is for you!
    CGP, G.R. and beachgirl like this.
  15. beachgirl

    beachgirl Peer Supporter

    Thanks so much Pandagirl. What am awesome post. While our situations are different, the feelings are quite the same. I need to practice more relaxation and self soothing, that's for sure. I am always in high panic mode and fight or flight and that's no good. The breathing is a powerful tool. glad you mentioned it. It's very helpful to hear from another woman who went through the same thing with hair loss. What panic.it is really taking a toll on my self esteem. It's not only job interviews but dating- and socializing. I feel so bad about my looks I just don't feel good going out. Understatement. Especially dating. Forget it. I have body image distortion for sure but with the hair, it's pretty noticeable. It's a very significant change in my looks- for the worse- there are times when I am calm thinking its TMS and most times when I look in the mirror and crumble, it's so hard.

    I love the video. Thanks so much for sending it. It's very cool.
  16. beachgirl

    beachgirl Peer Supporter

    Hi Alan,

    Thanks so much for this great post. It's so helpful. I definitely do have body image distortion but as I just wrote to Pandagirl, I really do look noticably different, my hair incredibly thin and just not good and I am really crushed at times seeing it. As well as panicked and scared to wits. I have no self esteem now. Less mirror time is a good idea so as not to feed the disease. Shower time however is really awful, so much hair loss and fear.

    These are the times it's hard to feel secure that it's TMS and it will all be ok. These are the times when I am in the grip of fear and despair over my symptoms. Pain is one thing, but this symptom is so visible - I can't hide it at all. Everyone's reinforcement here with comments is really helpful in getting though this. The power of fear and doubt and despair runs deep.

    My biggest fear is that my symptom wont resolve- that my hair won't come back.I have places where it is just gone, all I see is my scalp and none has grown back yet. This makes the despair so much worse. And of its not coming back the rest will fall out and I will have no hair. The Dr says this wont happen, that the hair loss stops but it is a real fear nonetheless. Back pain was so much easier than this. It didn't show like this does, it wasn't humiliating like this is. I don't want to be around people, I isolate and don't make plans with most people. I never know how I will look and bigger social events, dating or parties- I wouldn't even consider it- I honestly look like I just rolled out of bed with my hair - there is no fixing it. It's humiliating. I just want to hide and have been doing that for many weeks.

    THis symptom is like a prison for me, I am stuck inside, isolated from people and life and most things. My eating disorder was the exact same thing. Hatred of my body kept me a prisoner, away from life, away from people - just like now with the hair loss. The back pain and anxiety had the effect as well, kept me in a personal jail away from everyone and everything. My life with all of these disorders has been very small.

    I feel underneath it all I have a powerful need to stay isolated from life, to stay in a prison or small box and that these illnesses have served that purpose. I feel like I have been a prisoner all my life and I just want to get out and be free. I want to get out and I can't seem to. My hairloss the latest thing to keep me in a self imposed prison of me. I want out. I want my hair back, I want to believe it is TMS so I can get better- I am so sick and tired of being sick. If I really believed my hair would come back soon I would feel so much better. That is the toughest part of all, that its never coming back :(
  17. beachgirl

    beachgirl Peer Supporter

    I need to KNOW I have the power to beat this thing. Even if its hair loss. I keep forgetting, thanks everyone. Your posts are lifesavers.
  18. yb44

    yb44 Beloved Grand Eagle

    What a great mom you are, Mandi!

    This really struck a chord with me because I have been reading a book called Why Love Matters which goes into detail about how as babies we cannot regulate our own emotions so we rely on our carers to do it for us. You have perfectly illustrated this concept in your description of how you soothed both children. When I read the first sentence highlighted above I felt like a dart had pierced my heart. I cannot imagine in my wildest dreams that my own mother doing this. I do recall one morning when I was meant to go out to nursery or school I started to cry. I didn't want to go for some reason and became inconsolable. My mother, totally out of character for her, tried to cheer me up with soothing words and gave me a cup of water to drink. I was highly suspicious of this 'nice' mother. I continued to wail and howl. My mother quickly switched back to her usual self and shouted at me to get out of the house. I remember feeling deep regret at that missed opportunity for connection.

    As for my own children I did try hard and it was VERY hard. I too raised my kids mainly on my own. My husband was and still is a workaholic plus I lived an ocean away from supportive family and friends. What made it all impossibly hard was my own upbringing, not having my own emotions regulated and not knowing how to do this for myself let alone for my babies. I found my first child hardest to deal as a baby but she is actually far more well-adjusted than her sister born five years later. I coped so much better with the long nights, the teething, the illnesses. Ironically I think this child, now 21, suffers from body dysmorphia. She wears hair extensions because she cannot bear to be seen with just her own hair. She covers herself from head to toe with self-tan and make-up. Her main goal in life is to earn enough money so she can afford cosmetic surgery to correct what she perceives as glaring imperfections. This has gone way beyond vanity as she also suffers from panic attacks.

    Despite knowing what I know about TMS and related issues I still struggle to find a way to help her through this, to help her regulate her emotions. According Sue Gerhardt, author of Why Love Matters, if our carers did not regulate our emotions as babies, we seek others in later life to do it for us. As I seek this elusive person, I continue to feel isolated, unloved and uncared for. This is what I am focusing on at the moment. I think it may answer the "why am I feeling angry, sad, ashamed, etc" question that SteveO talks about in his healing mistakes thread.
  19. beachgirl

    beachgirl Peer Supporter

    Hey Wiki pals, I am really struggling today and could use some support. I am back to the big time anxiety and despair over my symptoms, which right now is hairloss. I am having a hard time believing it is TMS or that it will,ever stop. I morn my pretty self and crumble when I see myself in the mirror now b/c I have lost so ,uh hair in just a few months:(. I feel it is "stress " and I will be stuck with it and it will just get worse and worse. Even though my Dr to.d me it was stress AND an iron deficiency - a severe Iron deficiency I don't believe it is an iron deficiency anymore or that the iron pills will do any good. The DR said this was the problem but I am in such a negative place in my mind I don't even believe that treating the iron problem will help.

    I feel I am powerless over this awful condition and I keep losing hair. I could use some more words of good sense to get me out of this tailspin. I am having a terrible time with this. Help!
  20. cirrusnarea

    cirrusnarea Well known member

    Hey beachgirl, hope things are going better for you, sorry you didn't receive a response to your last message on Friday. Well, I know where you come from in regards to anxiety, it's certainly worse than the pain itself.

    I would look at it this way, taking iron will not hurt, and if your doctor has told you you have an iron deficiency you should follow his advice and take the supplements, it can't hurt and you are merely following your doctor's advice. I had a friend who was losing hair when she had a vitamin deficiency after having lapband surgery.

    When it comes to stress, it certainly sounds like your doctor understands the possibility of the mindbody connection, which is good. Work on stress with meditation and journaling, and check out the free program on this site as well. Like all of us, you are looking for an instant solution to your problem, I'm right there with you. But it just doesn't work that way. We'll get better, just not in the time frame we might like. But just because we don't see instant results doesn't mean we're not on the right track.

    One final suggestion is that you check out the peer support group for hairloss, www.alopeciaworld.com. It's not only for alopecia, anyone with hairloss is welcome to join. You can find tons of people on the site who are going through the same worries as you are, and there are many on the site who have permanent hairloss and have learned to cope with it. I'm certainly not saying this is true for you, I don't want to make you more concerned than you already are. But I'm just suggesting this as a way of showing you that you aren't alone.

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