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Hard flaccid syndrome and TMS

Discussion in 'Support Subforum' started by jcf254, Jun 9, 2022.

  1. jcf254

    jcf254 New Member

    Hi everyone - would be grateful for your thoughts on whether this is a mind/body issue. The more I think about it, the more it seems like it might be.

    My symptoms are:
    - hard flaccid syndrome - a shrivelling of the penis and a loss of sensation and libido, change in penile skin texture. Near total loss of erectile function.
    - constipation
    - weak urine stream at certain times, especially in the middle of the night or first thing in the morning
    - weak voice - my voice lacks depth and presence. It might start the day OK but after 5 minutes talking in a loud room, it's gone
    - inability to fully inflate the lungs
    - tightness in various parts of the body - neck, right hip, back of the legs.
    - body is very asymmetrical, right side is raised and walking feels strange
    - occasionally feel a general unpleasant tense feeling in the thighs and pelvic floor, and a general feeling of nervousness in the body accompanied by a palpitation-like feeling below the sternum
    - extreme sensitivity to cold, in the winter hands are so bad that they crack and bleed if I don't continuously moisturise them
    - dermatitis - pruritis ani and a patch at the inner top right buttock. Treatable with hydrocortisone cream.

    The constipation, milder erectile dysfunction without the hard flaccid symptoms, sensitivity to cold and inability to inflate lungs have been present for a long time - I'm 36 now and the constipation developed around 16. The other symptoms and the hard flaccid developed since I did an intense fitness programme that resulted in lower back pain to the point that I couldn't bend down and put my socks on the next day. That was late 2017 and things have got steadily worse since then. Also worth mentioning that I had shingles at age 24 which I believe is stress-related.

    I've done a couple of alternative treatments to address physical imbalance (pelvic tilt, compression, right side bias etc) and have just started a new one which is quite promising, but I've lately come across TMS and it's got me thinking whether all of this is psychosomatic. My mother has severe chronic pain with no physical cause so almost certainly has TMS, and I have always been a tense person who stores emotion, stress and anger inside the body.

    For the last 18 months or so I've been feeling very down about the whole thing, feeling very sorry for myself, avoiding life (the hard flaccid and ED means I won't date anyone) and stopping all physical activities. More recently I've started to think differently and that's where I've come across the concept of mind/body issues.
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hello @jcf254, and welcome to the forum. I'm glad you've come across the concept of TMS, a term we still use here, which was developed by Dr. John Sarno, but also referred to more and more these days by practitioners as MBS (MindBody Syndrome) and PPD (Psycho-Physiologic Disorder).

    One thing that the TMS community sort of jokes about is that TMS can definitely be inherited - not genetically, of course, but, as you already suspect, by being brought up by a parent with TMS. I'm convinced, looking back, that I inherited my lifelong anxiety (I'm now 71) from my mother while she was pregnant with me (first child, finally conceived after three years of marriage and at least one miscarriage). I never realized it because by the time she had a few more kids, she was very competent mom and never showed signs of anxiety until she was almost 90. I actually had a great childhood, but unlike my siblings, I had pretty bad anxiety which never went away. Feel free to read my profile story - I think it's actually pretty of typical of many TMSers who did not suffer childhood abuse, neglect or loss - and yet who clearly suffer from TMS.

    So back to you - and here's the thing: if you've been checked out medically, and "they can't find anything wrong", then there is absolutely no reason not to take the plunge and assume that many, if not most (if not all) of your symptoms are TMS. I didn't spend a lot of time perusing your list of symptoms and decriptions, but I did notice that you think shingles can be caused by stress - which is a big 'ol YEP. I'm currently dealing with pandemic-induced RA, which in my case makes zero sense unless I consider the stress factor (the pandemic was just the icing on a giant stress cake). Many auto-immune conditions are known to be made worse by stress - but the medical community still won't admit that perhaps they can be caused by stress. Bit of a discrepancy there, right?

    It costs very little to start the healing journey of assuming that your symptoms can be explained by the TMS mechanism, and it also can't hurt. A few books, all of which can be obtained used or at many libraries, and, to start with, one of our free programs. I recommend the Structured Educational Program on our wiki (the SEP) for absolute newbies, where you can do one simple module every day while you browse our forum and decide which book or books to read first.
    I recommend Dr. Sarno's last book, The Divided Mind, as your first read, because he compiles his theories efficiently in four chapters and turns the book over to five other MDs and a psychologist. You can start doing the SEP without reading one of his books, however.

    Also, you'll want to become inspired at the Thank You Dr. Sarno website (this link starts with the most recent posts) and then start reading posts on our Success Stories subforum. You can try keyword-searching that forum for specific symptoms or browse the thread titles for ones that sound like they might resonate. You might try a more generalized search using "pelvic issues" which will cover a lot of territory.

    As you progress, you might find that you're ready to move over from the SEP to Alan Gordon's Pain Recovery Program. Overall, this forum offers a ton of great resources thanks to our many dedicated members.

    Good luck!

  3. jcf254

    jcf254 New Member

    Hi Jan, thanks for the reply. Yes, I definitely think that, if this is what I have, it will have been inherited from my mother. She has a history of severe psychological trauma when she was young including anorexia and an overdose. She's also shared with me that she didn't feel loved by her mother, who in turn had her own trauma. This is what I've been reading about in When the Body Says No by Gabor Mate - he describes it as 'the dance of the generations'. Nowadays in addition to the chronic pain, my mother has anxiety and depression and doesn't assert herself or put herself first, she is too afraid of upsetting others. I see parallels of this in me, I hate conflict and need everyone to be OK. Interestingly I didn't consciously see any of this in her when I was growing up, it's only in the last 10-15 years that it's become apparent.

    All my blood tests have come back fine, I also have an MRI scan in a couple of weeks but I don't expect it to find anything but we shall see.

    Thanks for the recommendations, I will certainly check those out. I've actually already ordered some of Dr Sarno's books - The Divided Mind arrived today and I will start reading it after I've finished When the Body Says No.

    The difficulty I have now is committing to this and stopping my latest treatment. I don't think my mind is yet ready to accept that there isn't a physical cure to this, even if I'm fairly sure that the origins are psychological. But that's a journey I'll go on and I'm sure I'll get to where I need to go. I also have a mind-body practitioner less than an hour from me and I've made contact with her with a view to booking in an initial consultation.
    JanAtheCPA likes this.
  4. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    When the Body Says No was the third book that helped me get my life back. The second was Hope and Help For Your Nerves, by Claire Weekes, and the first of course was The Divided Mind.

    Doubt is the biggest hurdle you'll be facing, but it sounds to me like you're well on your way to making a major shift in your brain, and thus your life.

    Here are two small techniques to practice:

    1. At the end of every day, write down at least one thing for which you are grateful. It can be something from the day itself, or just something you're thinking about or noticing. It might be significant for you, or completely mundane (after an 8-hour power outage on Thursday I found myself grateful for the everyday miracle of electricity).

    2. This is a brand new technique I just got from my therapist, and it's a little more esoteric, requiring a subtle shift in thinking. Humans are wired to think negatively, which means that when we're uncomfortable, we want the discomfort to go away. Concentrating on what we DON'T want just continues to focus attention on the negative. The shift is to change that internal conversation to what we DO want. This helps our brains visualize the possibility of a different and positive experience. For me, this might be changing "I don't want to be dizzy" to "I want to stand steady with a clear head". I've been practicing this for less than a day, and was planning to start a thread about it after a little more time with it. I think it has the potential to be extremely powerful if I stick with it. It's essentially an on-the-go mindfulness practice.

    Keep us posted!

    fridaynotes and Dorado like this.
  5. fridaynotes

    fridaynotes Well known member

    The weird penis stuff is totally TMS. i have suffered with a litany of strange testicular/penis related pain and bullshit over the years that has come and gone and usually goes away once I really tackle it as TMS and do the inner work. try to focus on the emotional and stress aspects of your life and less on the pain and physical bullshit. it will go away as quietly and subtly as it began.
    hawaii_five0 likes this.
  6. hawaii_five0

    hawaii_five0 Well known member

    Totally agree with @fridaynotes: your cocktail of symptoms is very very likely just one problem: nervous system/TMS. General feeling of tightness and uncomfortableness, skin issues, digestive, sensitivity to cold/heat/noise, "walking feels strange", can't take deep breath or weak voice, all the other weird and wonderful things your mind/nerves can kick off. Claire Weekes talks about a lot of that stuff ("Hope and Help for your Nerves"). Don't go down the rabbit hole of trying to "fight them" one by one because yeah they will all go away if addressed as a single TMS issue. There are also some online "tests" you can take to give you more confidence that it is indeed a TMS thing, for example Google "Dan Buglio pain test". I think Schubiner and maybe others have one as well. Hope it helps!

    Also if you read the success stories on here and elsewhere you'll see that many people had multiple/many varied symptoms and got completely better, for example here what Dorado and Hillbilly said:
    https://www.tmswiki.org/forum/threads/how-i-healed-from-a-myriad-of-symptoms.18723/ (How I healed from a myriad of symptoms)
    Last edited: Aug 4, 2022
  7. jcf254

    jcf254 New Member

    Thanks for the replies. After much reflection I'm comfortable that this is caused by a dysfunction of the nervous system, with muscle tension pulling the body into certain positions that it shouldn't be in, which is then causing the knock-on impacts.

    The issue is not structural as there are no issues with bones, muscles etc. Though I do feel it is quasi structural as the pelvis is rotated forward (anterior pelvic tilt) meaning my hip pinches at the front when I pull my knee to chest. And my right hip is higher up than my left (literally - if you look at a photo of me from behind, the right hip is noticeably higher than the left). This wasn't previously the case, and I do think that doing Crossfit has caused this worsening of physical issues. But whilst it's quasi structural, the issues are undoubtedly caused by muscle tension, and in turn the nervous system.

    Lately some of my symptoms have disappeared or improved:
    - the unbearable tension in the pelvic floor like the penis is being sucked back inside - this has gone
    - severe dehydration for no reason meaning I could drink pint after pint of water and still not be sated - this has gone
    - severe lateral quad tension that I needed to foam roll out - this has gone, I never feel the need to foam roll anymore
    - weak urine stream seems slightly improved, I no longer sit there with a full bladder in the morning struggling to empty it

    Interestingly, I recently started taking CBD oil after a recommendation from a friend and these symptoms came back! I then stopped taking it and they have gone again.

    Whether the reduction in symptoms is due to a greater understanding of TMS and the impact the nervous system has on the body, or the techniques I've been given by my osteo practitioner, or the warmer weather, I just don't know.

    The other symptoms of hard flaccid, ED, constipation, weak voice all remain unchanged. I also have dry, itchy skin on the right side scrotum and inner upper right buttock, and pruritus ani. As does the inability to fully inflate lungs, though this is definitely worse when I am stressed - if there is a particularly stressful day at work I can't fully inflate at all, whereas otherwise I may do it for every 1 in 30 breaths or so.

    Another one I hinted at above is a palpitation-like feeling below the sternum - like a kind of nervous feeling. I used to be so wedded to the physical approach that I thought that this was due to muscle tension in the diaphragm, as opposed to what it actually feels like - nervousness! This is something I'm trying to bring more awareness to, and respond to it with self-massage of the chest and telling myself that I'm OK and safe.

    I've also recently become aware of how much of a people pleaser I am and how much of an inferiority complex I have. So I'm bringing more awareness to this and consciously relaxing my body when speaking to senior people at work etc (I would previously get tense all over when doing this).

    The physical stuff I'm doing is all nervous system-related too, my practitioner is aware that there's nothing structurally wrong with me, just that certain muscles need to be calmed down and others activated. Right now I think a physical and mental approach is needed - it's all geared towards calming down the nervous system - but I feel like I'm getting closer and closer to cracking this.
  8. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hmmmm.... and you spent an inordinate amount of time and number of words in your post on detailed descriptions of your symptoms. This is a sure sign of TMS, my friend! I didn't read any of it, by the way - I am an expert at skipping over physical symptom details - because they simply do not matter and I am not interested :p

    Believe me, you are not alone when you do this. We see it all the time, and it's a combination of perfectionism and obsession - both of which are pure TMS. You're now at the point where it's time to stop.

    Find two words at the most, which will describe your main set of symptoms in the most generic way possible - and don't ever use any other descriptions from here on out. This will not be easy, but I promise you, it's essential.

    "Pelvic symptoms" is all you really need to say from now on. When new symptoms pop up (and they will) don't go into the details - keep it short and don't bother going into details - because (repeat after me): the details don't matter.

    Now it's time to do the work.
    Mr Hip Guy and fridaynotes like this.
  9. Celayne

    Celayne Well known member

    >> When new symptoms pop up (and they will) don't go into the details - keep it short and don't bother going into details <<
    I call mine The PainXiety. It pretty much covers any symptom I’ve experienced.
    Last edited: Aug 4, 2022
  10. fridaynotes

    fridaynotes Well known member

    such good advice! i have found that the less i describe and analyze each symptom, the better! talking so much about it gives it more power.
    i’ve been experienced so many of your symptoms and believe me, it’s TMS.
    time to do the very hard but necessary inner work of uncovering what your unconscious is really trying to cover up. it’s a wild journey of self discovery but will only lead to you being physically healthier.
    JanAtheCPA likes this.
  11. Booble

    Booble Well known member

    I think there are some obvious emotional issues to work specifically around the fact that the pelvic issues are the ones sticking around and seem to be worrying you the most. Our particular pain, our symptoms, our focus, our obsessive checking often show up in areas related to or connected to our emotions, fears, etc.

    If you have been having challenges around your genitals, I'd try and examine your feelings related to sexuality. Anything from your past in that regard that made you angry at someone or angry at your yourself. Feelings, emotion, trauma regarding sex, sexual relations, sexual intimacy. I have a feeling that once you start allowing yourself to examine those areas, really feel whatever pain, embarrassment, fear, anger, guilt that the physical symptoms will start to vanish.
    fridaynotes likes this.
  12. fridaynotes

    fridaynotes Well known member

    wow~ amazing insight. helpful to me. thank you!
    Booble likes this.
  13. Booble

    Booble Well known member

    You're welcome!
    I'm so glad you find it helpful. Sometimes it's easier to see the situation when you are looking from the outside in.
  14. jcf254

    jcf254 New Member

    Thanks all - yes, the pelvic issues and weak voice are the main symptoms that aren't improving. There have been definite improvements in terms of thigh and calf tension and urine stream recently - I can now pee normally first thing in the morning and my foam roller doesn't get used (it used to be a necessity) but the hard flaccid, penile insensitivity, zero libido, weak voice remains unchanged.

    There is definitely some stuff to work through in terms of emotions around sex, that's a good suggestion, thank you - I have done some journalling but not on this topic.

    If this is TMS, my theory is that my brain has created a situation where muscle tension in the pelvis and hips has led to reduced blood flow and nerve flow to the penis, as well as other things like lower back/SI joint pain, and the weak voice is a consequence of that tension existing in the body. The heart palpitations and chest tension are a different story entirely though, surely just a sign of an overstimulated sympathetic nervous system.

    Another point to note is that these symptoms have led to enormous feelings of inadequacy and jealousy of normal people living normal lives in normal relationships. My problems are basically all I ever think about, which I'm aware is very unhealthy.

    Also, forgive me for talking about symptoms, I feel like I'm still in an exploratory phase where that is needed (especially as this isn't typical TMS as in there's not really any pain to speak of), I do understand the importance of not focusing on symptoms in future. Thanks again everyone.
  15. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    A lot of people who come across Sarno but not gone very deeply have this perception, especially if they have only read "Healing Back Pain". The fact is that nothing could be further from the truth! Sarno's MindBody Prescription introduces the idea that many other conditions are also TMS, and The Divided Mind confirms this by including six other medical/mental health professionals who wrote chapters. One chapter was devoted entirely to hypertension (high blood pressure).

    Today's practitioners are not using "TMS" anymore, because it's considered outdated - and it was reported that in his last years, Dr. Sarno himself said that TMS should really just refer to "The Mindbody Syndrome". The current acronyms are MBS or PPD.

    I would encourage you to read stories in the Success Stories subforum to get a much much bigger picture of the infinite world of mindbody disorders that can be overcome with TMS theory and an equally infinite combination of techniques.
    fridaynotes likes this.
  16. jcf254

    jcf254 New Member

    So my vocal issues (the best medical term for which would be muscle tension dysphonia) have been slightly, but noticeably, better of late, probably for around 2 months or so. As an example, I had family over yesterday and we had dinner, and even after dinner (eating food can often make it worse) I was talking absolutely fine and my voice had plenty of depth and presence.

    Historically it has been worse when I work in the office. I've been working from home over Christmas and today was my first day in the office for about 3 weeks. Voice was incredibly weak right from the start of the day - as bad as it's ever been. Even when I said hello to the bus driver on the way to work I could tell it wasn't right. The rest of the day was spent struggling to get the words out.

    Clearly something much more than a physical issue going on there. Hopefully I can work through it with a TMS therapist, would be fascinated to know why my brain is doing that.

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