IntroIf you are suffering from chronic pain or know someone who is, please read this short story. It is about my battle with what I have self-diagnosed as TMS - Tension Myositis Syndrome. To quote a website that I reference later on, "TMS is a condition that causes real physical symptoms, such as chronic pain, gastrointenstinal issues, and fibromyalgia, that are not due to pathological or structural abnormalities and are not explained by diagnostic tests. In TMS, pain symptoms are caused by mild oxygen deprivation via the autonomic nervous system." I am not a doctor, nor do I work in the medical field. I do not fully understand the syndrome, but I did learn enough to overcome it. It was destroying many aspects of my life, but now I am free from the debilitating pain. I hope this story can arm you with some things that will help you fight chronic pain and live as someone who is free or enable you to help someone else do the same. Please note that I am not selling anything, though I may promote some materials that might help those who are going through similar things, because I wish I had known more of this earlier. I am not offering medical advice. Please see the disclaimer page for information. Summary in One Paragraph For those who just want the single-paragraph version, I suffered from TMS for about 1 year. It started with very mild discomfort on one side of my throat. It progressed over a period of six months to a point where talking became strenuous and painful and eventually difficult enough that I stopped talking almost completely. I also started developing what was diagnosed as RSI (repetitive strain injury) in both of my arms, to the point that I could no longer type or text without significant pain. Barely being able to take care of myself (getting dressed, eating, brushing my teeth) and being unable to communicate with anyone unless they could lip-read, I withdrew from everything socially and quit all my hobbies. I became very depressed, and I wasn't getting answers from any of the many doctors that I saw until I became aware of and then became convinced about TMS. The symptoms I had were physical, but the root cause was emotional. Before all this, I would not have believed that something like the pain that I had could be physically caused by my emotional state. I am now 99% free of the symptoms, meaning that I occasionally have some pain, but the pain is so mild and infrequent that it no longer prevents me from doing the things I want to do. If you wish to understand more, then please read the full story below. My Pain A few years ago, I began to have some pain on the right side of my throat. It started after a party, where I was talking loudly over ambient noise for hours. I thought very little of it at first. It felt like nothing more than a little fatigue, and I fully expected it to go back to normal within a few days. I was able to talk without any problem, but it was a little uncomfortable. A couple months before this, I began practicing for an event where I would lead music frequently, singing and playing guitar. As a couple weeks passed after the party and my throat continued to hurt, I thought that the continual practicing just wasn't giving it time to heal, and I continued to practice but kept it light. The pain was pretty much always on the right side of my throat, and usually on any day I would sing, I would feel that fatigue and I would also get drainage on my throat that night, almost like I had a cold. The next day is when I would feel more irritation on my throat. I also felt pressure deep in my right ear on a regular basis. That event was about a month and a half after my pain started. It took everything I had to get through it. I was drinking lots of tea, using a spray on my throat to help keep it hydrated, drinking gobs of water, and using lozenges around the clock. I was singing a ton, and my symptoms heightened dramatically. The next couple days, it was almost like I had the flu. I was very sick, and I thought I had picked up a flu or bad cold. I thought that resting for a month or two after that event with no singing would resolve the issue, but it didn't. When I stopped singing altogether, my symptoms were pretty much gone, but after resting for many weeks, any day I sung even a little, I paid for it that night and the next day. As someone who loves to sing, it was disappointing not to be able to do so without consequences. Eventually, this started to become a little depressing as well. A couple months later, my right ear starting ringing, and it didn't stop for a week. I figured at this point that I had an ear infection. It would explain why I had pressure in my right ear and why the right side of my throat hurt. I didn't understand why singing seemed to cause the drainage (and actually I still don't fully get it), but it seemed like an infection was likely. I popped into a local clinic, explained to the nurse practitioner what was happening, and she wrote me an antibiotic prescription and I was on my way. However, I soon found that this didn't seem to help. The ringing stopped, but everything else remained the same. Perhaps a month or two later, with continuing symptoms, I went to a different nurse practitioner. He thought that maybe a lymph node was blocked. He recommended anti-congestion medicine and allergy medicine. I admit, I didn't take the anti-congestion medicine for more than a few days because I was coughing all the time from tons of drainage, since the stuff intentionally loosens mucus. The allergy medicine did not do anything. Seeing an Ear, Nose, and Throat DoctorI saw an ENT the next month. You may notice the absence of a general physician, which was a mistake. In my experience, it seems that the medical system in the US works best generally when you work with your primary physician to coordinate everything. At the beginning of all this, I was trying to see as few people as possible and pay as little as feasible to get a solution. This ENT prescribed medicine much like the second nurse practitioner. 3 weeks later back in his office, nothing had changed. He looked down my throat and saw nothing abnormal. He prescribed proton pump inhibitors to battle potential acid reflux, which he thought was a long shot but wanted to try, and he also gave me a steroid, 10 day prescription, to try to battle inflammation. I was not a good patient: I didn't touch the PPIs. Without going into details, I'm scared of them (and I think I have reason to be). I did take the steroids, which did nothing at all. His method, I think, was quite reasonable: if either of those medicines made a difference, it narrowed down the list of possible root causes. He also scheduled a CT scan, but insurance rejected it, saying I needed to do more medicines first. Maybe Just Acid Reflux I didn't go back to him. He was a fine doctor, but he looked down my throat and saw nothing and I couldn't return if I didn't follow his orders. I thought maybe I just needed to use allergy medicine for longer and rest more. I also made adjustments to my eating habits in case acid reflux was an issue. [You can have silent acid reflux that happens at night. The reflux may not feel like heartburn or like anything, but you can get asthma if it gets into your lungs and throat irritation and so forth.] Around this time, maybe 6 months into this, the irritation on my throat got worse. It began to be a problem to talk. It continued to progress over the next months. I also began to experience pain in my forearms and hands. This later was diagnosed by two different specialists as RSI (repetitive strain injury). As I try to recall now what happened and when, the pain and symptoms I had blur together in my memory because they changed over time, so my story is a little jumbled. The pain also changed from one day to the next, to some extent: one morning it might be one dominant pain, and that evening a different one. But the pain became more frequent and more severe. Significant tightness in my muscles. Shooting pain in my forearm. Pain up the backside of my hand. Burning my in wrist. This happened on both arms. I play piano and guitar. I type all day at work. I also get on my computer at home frequently. I was working overtime, and because my voice was hurting, I was typing more to communicate to relieve my voice. Slowly, the pain went from a mild nuisance to being inconvenient and annoying to debilitating. I Stopped Talking 9 or 10 months into my illness, I basically stopped talking almost altogether. My symptoms at this point were similar but more complex. I felt significant vocal fatigue all the time. Similar to how my voice felt at the end of the party, it took great effort to say much of anything. I was "saving my voice" for doctor appointments. I scheduled a visit with a different ENT that someone recommended. The first ENT was probably a fine doctor, and I should have followed up with him. This second one was not. He looked down my throat after I explained my story and, unlike the first ENT, he said he saw clear signs of acid reflux. I noted my fear of PPIs, so he put me on an h2 blocker. I took this for a month, and avoided more foods. I stopped eating a few hours before bed each night. I also propped myself up in bed at night. (I may have been doing some of that already. It was too long ago to remember exactly). He also sent me to speech therapy. When I saw this second ENT a month later, I was worse. I don't think the medicine made me worse, to be clear. My situation was just continuing to deteriorate. After discussing the medicine and then talking about other things I had considered (a goiter, lymph node, cyst, etc., as I had done a lot of internet research), he explained to me why there was almost no chance that any of those were related. If a cyst were somehow causing irritation, getting to it would be extremely risky, as a nerve could be cut that would significantly handicap the motor control of my tongue. The other things were something he thought he would detect otherwise, so he ruled them out. I think he was correct on all this. "(I Don't Know What's Wrong, But) You Won't Get Better"Where he went terribly wrong was to then tell me that I would deal with this for the rest of my life. Offering no sympathy, no possible alternatives, he sent me on my way. He didn't know what it was, and told me it was permanent. That's dumb. I was due for a second appointment with the therapist. I had that appointment, and she noted that it could be a nerve damage of some sort, and recommended I see doctors for that. She also said that speech therapy might be helpful in general for me to relieve tension, but that it would not solve my issue. Defeated, I began to become very depressed. If it were nerve damage, some medicine might be able to relieve my symptoms, but I thought nothing was going to undo damage, however that had occurred. I read countless little stories on forums of people experiencing similar things, with no answers. I didn't really know where to turn, so I started trying to do stretches on muscles around my larynx. Not only did this suddenly make things even worse for my throat, but the tension on my hands was too much. They become much more painful at about this time. Trying Anything... And Everything So this being about 10 months into things, I began to use heat on my arms, just running them under warm water regularly. I also was doing nerve stretches, muscle stretches, self-message with a tennis ball and myofascial release and trigger point release. I started trying topical treatment and pills with herbs and ointments and essential oils. I took all sorts of medicines, anything that could potentially help, not really expecting any one thing to help, necessarily. I bought heated gloves that plugged into a USB port, I bought my own ultrasound machine (used for therapy), and went to the hot tub at the gym often to try to improve circulation. I started paying very close attention to my ergonomic setup, especially after reading more on carpal tunnel. I took regular breaks from typing at work to stretch. Heat was very effective for a short time (a week or two), but became less and less effective as the pain became stronger and unrelenting. I also tried heat and cold contrast. I would wear ice packs for a while and then use warm water. Typing by Moving My Head Somewhere in month 11, I started using a camera to control the mouse. Clicking a mouse was very painful. Typing was also very painful. Come month twelve, I would only type my password on the keyboard and then use the camera mouse to type through an on-screen keyboard. Typing on the keyboard was possible, but very painful. I continued to work, but my efficiency was absolutely terrible. It was much less depressing than just sitting at home, and at least I was getting something done for the company. That camera mouse, which follows the movement of your face, kept my job, as did a very patient and sympathetic manager and employer. I would not have been able to continue without these things. The camera software is free, and I'm grateful to the people who wrote it and made it available to the public. At some point, I also saw a chiropractor. He really took time to take my story in as a whole. Chiropractic care did not help though, nor did acupuncture, nor acupuncture with electrical stimulation, nor a full body massage, nor cranial sacrum therapy. Furthermore, one of the arm specialists sent me to occupational therapy, but the therapist (correctly) noted after something like six weeks that it was not helping and she had done all she could. I remember the last day of therapy, where I could not talk even a little bit. I eventually saw a third ENT as well who sent me back to speech therapy. I also got a CAT scan, which I spent many hours looking at myself, comparing to photos on the internet to see if I could find anything that looked different or out of place. I did find something and went to a cardiologist to get it checked out, and though he was intrigued, he concluded that there was nothing of concern. At one point, I also scheduled a blood draw that I paid for out-of-pocket from some online company. The company ripped me off and only gave me half of the results that the test was supposed to cover; I was looking for vitamin deficiencies. But I couldn't make a phone call to complain with my condition, and my typing was so slow that I just gave up on it. I reached a near-panic point as my arms reached the worst of their pain. My family scheduled an appointment with my general physician (I couldn’t make the phone call). He is the first and only doctor who seemed to understand to some extent what was going on. He prescribed anti-depressants, and told me within a couple months I would start to get better. He was wrong (sort of): it would be less than a couple weeks! A Second Glance at This Story The details thus far might have already made your eyes glaze over, but for those experiencing it, seeing someone go through the same steps can be helpful. It also can help to see the approaches I took to try to solve these things. The emotional part is a critical part of this story. By this time, I was withdrawing from everything socially. After all, I couldn't talk, and sitting around other people like a bump on a log isn't fun. Eventually, even texting on a touch screen was almost unbearable too, but for some time, I tried communicating through texting. Very, very few people are patient enough to pause in conversation long enough for you to respond by texting. It made communication with some people nearly impossible. A couple people could read lips. That helped me so much, but that was the exception. Some Humorous Aspects To insert some humor into this story, the way some people react to you when you are not able to talk is rather funny. If people did not know my situation, even if I gave visual cues to indicate that I could understand what they were saying, as soon as they realized that I could not talk, they would act like I was deaf. For instance, I was getting a flu shot. A nurse was talking to me, as I was filling out some paperwork. Though I was looking at the paper and still shaking my head, acknowledging what she was saying, as soon as she asked a question and I motioned to show I couldn't talk, she began motioning and pointing to tell me where to go after filling out the paper work, saying nothing more. One day, a coworker, who knew about my problem, came over with some questions. At this point in time, I could write some, so I responded with pen and paper. He asked another question verbally and I responded again. Then he thought for a moment, picked up the pen, and started writing a reply. A couple seconds later, he realized what he just did. This sort of behavior was much more prevalent than I would have expected. The experience also was eye-opening on the isolation that people may feel when they cannot communicate. Some of these stories are funny, but it was maddening and extremely depressing at times. Emotions and Physical Problems The emotional part is key to understanding and overcoming my condition. While certain medicines and therapies may have helped to some degree, nothing came close to addressing the true root cause as did addressing my emotional state. For westerners in particular, this can be considered absurd or offensive. How can your emotions cause physical problems? And if they are causing such problems, something is probably "wrong with you," right? Something is wrong, yes, but it isn't so unusual. For a starting point, consider some things that occur emotionally that produce real physical effects, even if they are mild and temporary. If someone gets nervous, a host of things can occur. Their face might turn red. Their heart can start racing as adrenaline is pumped through their body. They can tense up. They might pee themselves. Perhaps they'll become nauseous or actually vomit, or they won't be able to eat anything. If someone becomes angry, some similar things can happen. Perhaps they won't be able to speak, or if they do, their voice will raise in pitch significantly, involuntarily. If someone is excited, some of these can happen as well. These reactions are not just in people's minds. They are "real". Emotions are not just in our head, in this sense. They have significant physical effects on our bodies. Probably more accurately, our mind, body, and spirit are all involved. Exactly how all that works together, I don't know. But I do know that emotions can and often do manifest themselves physically, with absolutely no conscious control. This is absolutely key. If you refuse to consider this, you won't get better if you have TMS (tension myositis syndrome) or whatever you want to call it. I come from a science and math background. I like facts. I like to understand cause and effect. I don't care for wishy-washy placebo nonsense answers. That's part of the reason I spent so much time reading about vocal problems, studying the throat anatomy, studying muscles, watching videos on RSI, going to the library and reading books, and scouring the internet for real information on my hands and my throat. Also I knew there was a lot of crap on the internet, but wow...* So buying into a non-physical cause was difficult for me. I actually did believe that stress was heightening some of my problems, but I thought that it was of little significance and that I had to find physical root causes.
Stressed Out For confidentiality, I am going to be fairly generic on reflecting on my emotional situations, but looking back, things started adding up. I had family stresses, being concerned about the health and finances of people very close to me, one of whom was actually suffering from the same condition, but with totally different symptoms. I was stressing about some personal responsibilities I had, where I overcommitted to things, and where I felt some people were temporarily dependent on my completion of those commitments. My home situation was changing. I was doing various non-work projects on a tight time line. I was very disappointed at still being single, and this weighed on me more heavily than ever that year. Work picked up dramatically, and I was working long hours for many months, including a lot of weekends. AngryThese were all very relevant, but an even bigger component was being offended repeatedly and becoming extremely angry (over a couple years) about repeated offenses. I was not outwardly angry, but inside I sure was. Furthermore, I did not talk with anyone at all about the majority of what was making me mad. I do not get angry often, and I do not like to hold grudges. I believe (and believed then) that holding onto anger does nothing but hurt you; I'm a Christian, and I think God is very clear on this. It's okay and even right to be angry about some things at times, but dwelling on anger is destructive to you and sometimes to others. Near the end of my illness, not realizing that the stress and anger correlated to my pain, I was already trying extremely hard to forgive and to let go of things that I realized I was holding onto. I knew that had been forgiven of a lot of things, but I just couldn't get past these things. And when the behavior that causes those offenses continues, it's immensely hard to let go, at least for me. Bottom line: the day I started to get better came after I truly decided to let go of the things that upset me and were making me stressed. What made me let them go? After all the stories online that I read, and reread, combined with what I already believed God had to say about forgiving and showing grace as He showed me through Jesus, and about worrying about nothing but instead giving my worries to Him, when it finally clicked and I attributed all my pain to being angry and stressed, I let it go. What actually ran through my head was that it simply wasn't worth holding onto these things and experiencing all this pain. Why Was That So Hard? Honestly, as I am writing this, I don't understand it all. I had been trying really hard for months to let go of the bitterness, but I couldn't until that moment. Why did it take all that pain and suffering and lost time and lost opportunities (and medical expenses!) to make me let go of what I was never supposed to hold? I was not instantly better. But the next day, for the first time in months, I could actually get out some words without my throat tightening quite so much. I had all the same symptoms in my voice and my arms, but it was changing direction. Fast-forward. A month later, I began to type at work. Now this is very interesting (to me, at least), and important for recovery. I already believed that TMS was behind my voice and arms, and I was starting to talk regularly. I still had pain and tension, but I could talk. I made a decision to start typing on a specific day, and the pain in my arms continued to worsen throughout that day. Having not used them much for months, the pain was not at its peak at the beginning of that day, but it climbed right back up by the end of the day. The next morning was dramatically worse, and I had a very very hard time persisting. I won't belabor it, but you can read on the wiki how important it is to have confidence that TMS is the condition, and to not fear repercussions from physical activity. The fear of pain manages to perpetuate the condition. And I was taking a gamble. What if TMS was behind my vocal problem, but not my arms? If it were RSI, the absolute worst thing I could do would be to push through the pain. If it were TMS, the best thing I could do was push through the pain. Maybe I Can'tAs I typed more, the pain was reaching a point of being unbearable, and I almost switched back to the camera for typing (I was still using it for the mouse). At lunch that second day of typing, I had a make or break moment, and I decided to push through and to not use the camera for the keyboard. I also changed how I was typing. That morning and the day before, I was typing lightly with only my index fingers, something I had done a lot during the progression of TMS to reduce the impact strain from typing. But instead, I typed like I had in the past, and I also grabbed the mouse and just used it like normal. I stopped sitting in a healthy ergonomic position. I slouched as I had always done before. The pain most certainly was awful as I did this. However, to my amazement, by the end of the day, I had less pain. I continued typing throughout the week and my hands improved each day. I am not making this up: just one week later, I started lifting weights; very light ones, mind you, as I had notably atrophied and I weighed about what I had weighed at the end of middle school. Depression and inactivity can cause some people to eat too much and others to eat too little; I guess I'm the latter type. The pain did not completely go away for many months. Today, more than a year past when I understood I had TMS and why I had it, I still get all the symptoms at times, but to such a small degree that it does not restrict me from much of anything. Instead, I use them as a gauge for stress, and try to figure out if there is anything I need to address. Are there physical causes that are completely separate from the emotional aspect that cause pain in my wrists or tightness in my throat? Maybe. But I don’t really care. What I did helped me get better, so while I may be curious, I'm glad to have a solution. Was It Medicine? The anti-depressants add an interesting aspect to this. It was within a week of taking them that I started to get better. Did they play a significant role? Perhaps. My doctor, who prescribed them, does not think so, since it usually takes much longer for them to kick in and make any difference. When I saw him next, I was able to talk and told him a lot of all this. He was quite surprised at how much better I was and that I was willing to consider the emotional aspect, noting that this is frequently behind people's problems, in his opinion, but that most people refuse to hear it. So while I think the medicine may have helped, I am convinced that addressing the emotional issues was paramount and that I would not be much better at all without doing so. I told him I had already signed up for counseling, and they also had an on-staff counselor who I could see for free. (I don’t know how that worked, but I said yes!) I didn’t stick with either counselor for long. Both counselors thought I was doing extremely well at understanding everything emotionally and that we did not need to meet unless I wanted to do so. Take Away I believe God can heal anything and does still heal people miraculously, but I also believe that He lets us go through hard things so that we might arrive at a better place afterward. Woulda been nice if He just told me at the beginning what was happening, but He didn't. So the things we go through physically are sometimes powerful indicators of what is happening inside of us. For me, it meant letting go of hurt and fear and turning it over to Him so that I could be free. My story focuses on vocal fatigue and muscle pain, but a great number of other problems seem to correlate to TMS, as you can read about on the TMS wiki. This means that there is hope for a number of chronic conditions; if this is you, you may very well be able to resume some or all of the things you used to do. If you are holding on to anger, it is probably affecting your life negatively in some way, and probably others as well. It could be destroying you. If you are holding onto your worries about what will happen tomorrow, you may be carrying a burden that you weren't meant to carry. I don’t believe God enjoys seeing us in pain at all; I think He weeps with us. But He still let me experience it, and for a year! It dramatically, negatively affected my life during that time. It was a horrible period that I never ever care to repeat. However, I learned a ton through it, and I honestly can say that I’m glad I went through it. I certainly don’t think we can always say that about pain in our lives. A lot of pain seems quite pointless. But for me, for this particular situation, I am thankful. When I continue to experience these symptoms, I now try to use it to ask myself if I am stressing or worried or angry and to let those things go in God’s hands. I don’t always do the best job, but it has been a powerful tool to help me do so. I hope this story helps you to either get better or to help someone else to live a life that can be enjoyed. Thank You! If you are one of the friends who helped me in any way during this time, thank you. A handful of people did a lot for me, especially my family, helping me with food and other things that I could hardly handle. Thank you to the pastors and friends at my church who came by to ask how they could help and what I needed done, whatever it might be. Thank you to a good friend who came every single night for three weeks during the end of it, when things kept looking worse, and prayed and talked with me (through lip reading) for more than an hour each time (and doing so while working extra hours and preparing for a wedding). Thank you for others who prayed, many I know about and others I probably do not. Thank you to the people at tmswiki.org and tmshelp.com who helped me understand enough about TMS to fight it. Thank you to the doctors, speech therapists, occupational therapist, and other medical professionals who cared about what I was going through and did what you could to help. You have all made a big difference in my life! :) An Aside on Medical Professionals I want to be clear about my view of people in the medical field. I believe that doctors are generally very knowledgeable and that they do want to help their patients; a few doctors have helped me tremendously. I think most of the medical personnel whom I saw during this ordeal were doing the best they could to help me, and they obviously know dramatically more than I do about their fields. As you read my story, please DO NOT think I advise taking your medical needs completely into your own hands. Working in tandem with your doctor is much better than either doing things on your own or letting a single doctor completely guide you without you applying your mind to the situation. They know a ton of stuff medically. You, the patient, probably do not. You know your history and your pain and when and how it happens and so forth, and they do not. You live it every day, and have a much greater understanding of the picture on your side, so work as a team with your doctor. If that offends them, get a different doctor. I have met and heard of many wonderful doctors, but have experienced and seen cases where people's lives could have been or have been very negatively affected because they didn't work with their doctors and/or because they trusted a single opinion. * Internet ResearchPersonal opinion: if someone makes a claim about a medical condition or a medicine and gives personal testimony to results, scientific studies to support their beliefs, or physical (chemical, molecular, biological etc.) explanations, there may be some credibility to what they say. If they merely say, "These five herbs reduce stress" or "this food causes bad things in your gut" with nothing to back it up, don't waste your time listening to them. They might be correct, but with no evidence to back up their claim, you can go down a rabbit hole (and when you get desperate, you might try almost anything, even if someone has no or very little evidence). Believing and HealingFor those who believe in God and believe He can heal any condition, I wonder exactly how faith plays into this. Jesus healed people with a myriad of different conditions, but generally it seems that they had to believe He could. In a very real way, my sickness was psychologically induced, so believing that I could overcome my illness might itself have undone whatever was happening, allowing my body to physically heal. But some things that Jesus healed such as complete blindness, full paralysis, or being dead (!) cannot possibly fall under the same category. I have no doubt He did miraculous things - that is, things that defy the laws of physics and so forth that He created. But how much of healing, physical or otherwise, is entangled with one's belief about that healing? How the body, mind, and spirit all work together is very interesting to me, and even though I probably won't understand it all in this lifetime, I would love to understand it better.
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AuthorJust someone who learned a lot through a painful time in my life and who wants to share what I learned with others. ArchivesCategories |