Tuesday, October 17, 2017

Comments by Menin

Showing 18 of 18 comments.

  • Alanamous—keep looking. Ignore any of these idiots who tell you its in your head. I am likely writing a book on this subject soon, as I have just (finally!!) had surgery to address my issues (the ones that were all “psychosomatic”, supposedly, despite happening in two distinct injuries). I had to have my hip repaired (torn labrum, FAI) along with a tendon and SEVEN torn core muscles.

    I’m also at a surgical institute rather far from home and everyone has the same story here. I heard from several more people today over there that it took them anywhere from 2 1/2 years, to 4 years to up to 8 or 10. YEARS. To get a diagnosis of something easily seen on an MRI. So, all things considered, I’m quite lucky that I only had to be physically disabled for 6 months. However, the things I heard from docs in that time period were so egregious as to warrant me calling every media outlet in my city and start writing about all of this. I was told I had gone into early menopause–suddenly, during a sports injury. That I was just aging. That my injuries were caused by “marital relations”. That it was in my head, asked what my psych diagnosis was and if I had a psychiatrist (it’s none and no). You know the routine.

    Then I get to a center specializing in the sports injuries and hip injuries I have, had new MRIs done, had surgery and am on the road back to full health. And surrounded by people who were all treated exactly like everyone on this thread has described–despite having injuries clearly seen on MRIs, many prior to even getting here.

    Saying it’s “all in your head” is medical speak for “I don’t know what’s causing the pain, and am therefore taking no time or interest in your problem, as it’s far easier to just refer you to a psychiatrist or gaslight you until you end up ignored into disability.

  • The sad thing, in my case, is that I don’t suffer from depression or anxiety. I was just extremely anxious because my hip was inexorably giving out and I was losing the ability to do anything. Yet the soft tissue injuries are there, and once they’re missed on an MRI once it’s hard to get taken seriously.

    I can’t imagine how this must be for people going in to doctors with a psych diagnosis and a list of meds, though. They thought my pain was unexplainable and possibly in my head and I’m not on any meds at all. I got asked in the hospital if I suffered from anxiety. I never have, but told her very calmly that anyone who goes from being athletic to unable to walk without a doctor being able to explain why while also experiencing excruciating pain without becoming anxious likely does need a psych med. I don’t need a psych med, I need a malpractice attorney! (Though I wouldn’t say that to a doctor…lol)

    Thanks, I’ll check out that site. Isn’t Dr. Healy the one who runs Rxisk? I’m interested in what you do in terms of advocacy. Bless you as well, not many spouses would devote so much time to an illness as you have.

  • Dr. Lawhern, thank you so much for your messages of support. I pursued this relentlessly and finally found a doctor who would listen that this was not some chronic pain syndrome and checked me into a hospital to do tests until the issue was resolved. A new MRI (they missed this somehow the first time) showed a labral tear to the hip and a tear of the hamstring tendon. Unfortunately, in the 4 months since injury it has caused significant damage to the muscles in the area as well, but I’m now being gotten to the best surgeon possible within 3 days to be evaluated for surgery.

    I can’t even explain how traumatic it is to not be taken seriously for 4 months as some malingering female pain patient when I repeatedly told them how active I had been and that this happened suddenly. I had doctors who refused to even examine me “diagnose’ pelvic floor dysfunction, only to be told I don’t have this problem (which I knew I didn’t) from the specialists they sent me to. I swear, when this is over I”m writing a book. Hopefully they’ll start having me fixed up within the next few weeks.

    I just wanted to thank you. This has been hellish. I went from injured to disabled in 4 months of being ignored while having quite obvious injuries to the very area I went in saying were injured. Your article is absolutely required reading. Please keep on trucking yourself, and keep raising awareness.

  • What a heartbreaking story! But believably egregious, really. Yes, those doctors should be punished, and severely.

    Listen, I even had to fire my therapist of 3 years for trying to chalk up an injury to psychosomatic illness. She knows my sensitivity and opinions of psych meds, yet she tried to talk me into going on meds. Psych meds for a hip injury. It didn’t go much better with other doctors. My father died within a year after being told he was just suffering from stress–after they missed the tumor on the MRI that was clearly visible to his oncologist 6 months later.

    It’s enough to make you want to privately hire doctors to read your scans and take control of diagnosing you, except that that’s already what we’re doing! Thanks again for letting me vent a bit.

  • I’m glad I remembered this article. I have finally found a doctor who listened to me with my latest hip/pelvic injury after 3 months of being referred out and not treated while slowly becoming completely disabled. All the doctor I found could say was, “Why did they let this get this far?” My (former) trainer asked the same thing. I was in the hospital over Christmas, and for all the scans they did, I couldn’t get a single doctor to examine the fact that the right side of my pelvis has dropped by an entire inch following a pelvic joint injury. They scanned my brain for something neurological. They scanned my spine. They scanned for inflammation (after I’d received a huge steroid shot that tamped down inflammation) and then told me there was no “anatomical cause for” my pain and dysfunction. Now my new team is hoping it’s not too late, and it wouldn’t have been when I first sought treatment.

    All I could tell either my new doctor and my trainer when they keep asking how I was ignored for so long is that I’m a woman who was having referred pain and spasm from a joint in my pelvis, and that tends (apparently) to make doctors and PTs, especially male ones, to pass you along instead of bothering to diagnose. I’m beyond frustrated now and completely disabled. Thanks for letting me rant. I just hope they can do something at this point, but am less and less hopeful as the days go on.

  • Thank you for your reply, as well as for your work in this area. More awareness is definitely needed. I remember the neurosurgeon I ended up with telling me that many of his patients with TN (he had never considered neuropathy, apparently, but thank you for mentioning it, that was likely the case with me) “falsely attributed” the onset of the disease to a dental injury or procedure, but that the origins of the condition had nothing to do with it. I discounted this statement once I healed.

    If nothing else, the experience was horrible to even remember, so I just let it go. I had been put on too many medications, and simply not the type of person who tolerates tegretol well. Surgical procedures were mentioned, and one of the risks mentioned were permanent facial paralysis. I was only 34! Thankfully, it is now over. I’m just grateful that you’re doing this work, thank you again. To this day I know few people who can even conceive of facial nerve pain illnesses, and it remains largely ignored.

  • Thank you, and well wishes to you. In month 3 after going off HALF the prescribed dose, and pinning my hopes to the future day when this will be entirely over. I definitely feel your pain, as well as the sense of invalidation we all get from doctors and pharmacists who simply assume that we have “some other problem” when it’s quite clear that the effects of benzo withdrawal are frequently devastating to people.

    Take care of yourself.

  • Amazing article, and not one I expected to read here. This was the source of my second bout with pharmaceutical damage. I suffered a dental injury that led to excruciating pain, and after several months of not ever being diagnosed with anything (and getting lots of weird looks from doctors) I finally got the “trigeminal neuralgia” DX. The neurosurgeon who gave it, however, did consider the possibility that it was injury induced and at least atypical TN. I do NOT handle pharmaceuticals well, and suffered an interaction that almost killed me. However, I survived and the injury (or whatever it was!) healed, never to return. Which is great, because half my face was paralyzed and the muscles were visibly drooping. I was obviously a mess, and found it shocking, while being unable to even smile, that many (even doctors) acted as if I was being simply trouble (until I got to my neurosurgeon).

    I’m just shocked to see such a familiar story here! Whenever I discuss damage I’ve suffered from medications, I’m always asked why I was ever on them, and this was the reason. It was facial pain following another chronic pain condition that is, at this point, barely background noise to me. But few people even know about TN, and those who do assume it’s never to do with injury and cannot ever heal.

    I’m very glad your spouse’s is being managed well.

  • Wow, thank you very much! I feel quite foolish for having gone on a med again, however short term/small dose, but my mind is returning to normal. Many days where the symptoms are mostly gone. If the physical symptoms would go away, I would be fine at this point, more or less. So, that is something! I do hope it helps. One nice thing is the compensatory beauty when your brain rights itself. I have days where the world seems so amazing and beautiful, just because the withdrawal symptoms have let up and I can experience things finally outside of my own head.

    Why a complete waste of time? Are you having relief and the invincible feeling both? I do hope it goes better for you, and on those good days, just pass on the happiness and hope to others. It really does all come down to hope! Withdrawal has a way of sapping hope from us, and everything feels slowed down and permanent. It’s not, though, there is always hope.

  • Thank you, Matt Samet! I’ve been in this same place this year, and have been really disheartened by it. Until I read your piece. I understand all too well the feeling of thinking you’ve wasted time, so no more should ever be wasted. 3 years out, I’m in the same boat from an amount of a med that would cause few others these problems. I am healing faster than some people, but that mindset of being invincible off meds (which I foolishly thought I’d just swing back into) is largely diminished. OK, gone.

    I just love your description of withdrawal. It is perfect. There is nothing I’d love better (and I do love it, on the days I’m lucky enough to be free of symptoms) than to escape my own head, my own body. To just walk (or even type a comment) without being painfully aware of every motion. My body simply isn’t there yet. I know it will be soon, but, well, this comment is proof enough, it’s all about me. Which is a terrible way to live, yet with this process annoyingly inescapable!

    Here’s a toast to some large glasses of purified water to hoping none of us ever go through it again, and a look forward to when we can all just say “Cheers!” and finally mean it.

  • Thank you so much. I can definitely relate, especially to the pain/sensitivity/fibromyalgia aspect. I normally wouldn’t even consider such a thing, but at 2 months out from going off of klonopin (just 6 months for sleep, actually 6 months because I couldn’t get off of it easily OR deal with withdrawals at that time) I can definitely relate. It is quite depressing, and I hope it goes away soon. I am in such intense muscle spasm that I can barely function. My mood is usually good, but no one can manage to fix the problem and I was such a healthy and active person before that I can’t do what I once did, even a few months ago. Frankly, I was told I had these conditions (fibromyalgia) before, and it wasn’t pretty, but I managed to turn off the fight-or-flight response that I believe was responsible for it and went on to live a very healthy life. Now, I’m back in that chronic sensitivity phase and it scares me half to death! I can’t help but wonder, however irrational it is, whether or not this has tripped that response again and I will once again be crippled by it longer term.

    In any case, I was just trying to get a month’s worth of sleep, and it has bought me disability once again, after my life had become one of athletics. It’s hard to not get a it upset about that. I’m just looking for hope that it is not permanent.

  • Congratulations on being free! Thank you for sharing the information about Glenmullen’s book, I had no idea about the hippocampus damage, though I had suspected as much. Your story is very similar to mine, except that I was put on an SSRI for a pain condition. Experimental treatment. It was horrible. Thank you for writing this; this is never discussed enough, though these drugs continue to do terrible harm to people.

    I’m glad you used the diabetics with insulin example, as well. Doctors need to learn that unless it really IS diabetes, there is no reason to insist on this metaphor or to drug patients like this. They have no business telling patients they have an unproven disease/chemical process taking place without having sufficient proof and such dreadful treatments.

  • Thank you! I have been shocked since finding out how dangerous these drugs are. My time on them was disastrous, and I was on them for a pain condition. I have since read a little here and there, but I’ve noticed (mainly in online comments on other sites) that people have an almost violent reaction to criticism of these drugs. The same goes for most areas of mental health, at least what I can gauge from other articles online. I was harmed by these drugs, which also made me horribly depressed, and I don’t suffer from depression normally. I can’t imagine what they’re doing to people who have a similar reaction to them but suffer from depression. If I hadn’t known I wasn’t at all myself on these meds, I might have thought I was on the best treatment for a mental disorder and it just wasn’t working. As it was, I liked the brief respite from the pain syndrome (which has pretty much run its course), but I prefer my unaltered and happy brain, especially as the effects on pain didn’t last beyond the 1 year mark and the side effects were frankly a bit devastating.

    Thank you, thank you, thank you.

  • Fascinating articles, both this and the piece on the rise of antidepressant prescriptions linked here. Thank you. I don’t think enough can be said about the drastically different way of living that has swept us all up with so little written on it in the last 40 years or so. Well, much has been written, but little connected to the mental health industry. Of course people who are overstimulated and expected to rise to great heights (instead of simply living where their families always have, while working the same profession) are constantly facing their own limitations and responding with some level of depression and anxiety. Similarly, how many people still live anywhere near extended family? Or even around people they grew up around? We’re increasingly isolated, moving from place to place and charged with finding ourselves in transplant societies that have little sense of community whatsoever. Those frustrations can be easily interpreted as depression, especially once it was marketed as a disease of chemical imbalance.

    Apologies for the tangent, just always something I’m thinking about. It’s amazing that anyone can fight back when every aspect of their personalities has been labeled a symptom of a mental illness. It is gaslighting on an complete level of being that I don’t think we have ever encountered on this scale as people. The closest parallel is in religious movements, which is one thing that frightens me the most about psychiatry. It’s all in the dogma, baby.

  • Yes, it is utterly indefensible! In my case, my stomach just became too sensitive to handle a med I’d been on for some time, or any other meds (none of which were psych).

    One thing I’d like to add though, it doesn’t matter if the patient is diagnosed with a mental illness or not, it seems. I was prescribed an SSRI by a specialist who was in no way connected to mental health. After a few moves, I was told it had to be overseen by a psychiatrist. My insurance agreed, as it was an SSRI. If I ever mentioned any problems with the med to my PCP or specialist, I was referred immediately back to a psychiatrist, all because of the class of drug. It was like getting diagnosed with a mental illness by the simple fact that I was on a psych med, even though that particular med was being prescribed to people for almost every medical condition known to humanity, including cancer! It was absurd. You see this in the media as well, if someone is on any psych med it is a sign of them being somehow not trustworthy. I note such shoddy sources only because I’ve not had occasion to research this subject until now, but if someone with little knowledge of this subject can call up examples, that’s not a very good sign.

    It was also worse that the referring to a psychiatrist was due to the “fact” that they are the supposed experts on those medications. Admittedly, my experience with psychiatrists isn’t that extensive, but I’ve never met two docs LESS knowledgable about medications.

  • Aria, me too. I mean, the akthisia and the like. I lost years to these side effects and doctors’ inability to evaluate them. These doctors shouldn’t be allowed to prescribe these dangerous drugs unless they can prove a comprehensive knowledge of all of the effects, the permanent problems they can cause, the withdrawal symptoms, etc. It’s not the patients’ responsibility to handle learning about it all themselves while paying these people quite a large amount of money to just sit back and call you crazy.

  • Thank you! I never understand how this can be defended. Not to sound simplistic, but I am not fond of psychiatry based on a rather limited experience with it. I was put on an SSRI (disastrously) for a chronic pain issue. After moving, my doctors insisted that since it was a psych med, I needed to have it overseen by a psychiatrist. At which point this psychiatrist began diagnosing my side effects to the med as mental disorders (not severe ones, but the guy wouldn’t stop!). The side effects got worse; I went to a different psychiatrist. My stomach finally gave out and I couldn’t keep the SSRI down. The new doc then started diagnosing my SSRI withdrawal as a psychotic break, telling my husband that I would never not be able to live without being institutionalized–then promptly tried talking him into committing me. Luckily, no one believed him and I found help for my STOMACH, which was the issue. And went off the meds, which returned me back to completely normal.

    But seriously, who on earth let these doctors have the amount of power they have? To try to talk a husband into committing his wife over vomiting?!? I still am terrified over that sort of thing, though it’s not necessary since I don’t go to a psychiatrist. If they actually diagnose side effects as mental illness, how on earth do they DX actual mental illness? What happens when someone with a psych dx reacts horribly to these drugs? I guess I know, having read “Anatomy of an Epidemic”, but still? These two docs were simply bored, annoyed that someone was being sent to them basically by insurance who wasn’t seeking mental health care. If they’d been chiropractors, no one would ever have given them the time of day–much less let them manage dangerous medications. (I say that not to denigrate chiropractors, I trust most of them more than psychiatrists, if only because they cannot prescribe meds, affect one’s medical chart, etc.)