Day 1 In NEED of encouragement, answers

Day 1 - In NEED of encouragement

Hi everyone, I am so glad I found this forum. I HOPE I’LL GET AT LEAST ONE ANSWER TO THIS POST BECAUSE I REALLY NEED REASSURANCE AND ENCOURAGEMENT. If you find reading the list of my symptoms too long/boring, please go directly to “THE ONSET OF MY SYMPTOMS”.

[Please note English is not my mother tongue and I did my best here ]

So here comes my story…

MY SYMPTOMS:

I don’t want to hear about my symptoms ever again as I know these are ONLY distractions from my brain and it doesn’t really matter where it hurts, but I need to put my story on paper one last time. I am a 30-year-old girl. My pain started gradually almost 3 years ago (around January 2019), without any particular reason. I first started to feel pain in my neck (left side). As usual, I went to my chiropractor, who this time couldn’t help. I went to see a specialist in physical medicine for this first time in my life. By that time, my pain had gone to the sacro-iliac area (still left side) and I could feel sciatica pain going down my left leg. I did physical therapy, didn’t help. Tried different alternative medicines among which mesotherapy, neural therapy. We did all the necessary exams: MRIs (4), EMG (twice), radiography, scintigraphy (twice). None of these exams showed anything very particular I should worry about. Valium (Diazepam) made all the pain go away, but I started to need more and more and didn’t want that as I know this is addicting. I thought to myself: “Cool, if Valium makes it all go away, it’s just muscle pain so it’ll go away and I just haven’t found the good approach to it yet.” I was prescribed Redomex, didn’t help at all for nerve pain. One orthopaedist told me all my bones were painful, I had lost my reflexes, I suffered from a polyneuropathy and prescribed bisphosphonates (so crazy when I think about it!!!) among other things, didn’t help at all, lost another few months. I went to see another specialist in physical medicine who said my pain was mainly due to myofascial pain and trigger points (which I had never heard of). He suggested I went to see a physical therapist specialized in deep massage for that type of pain. Time went by, nothing improved, and the physical therapist sent me to a GP specialized in nutrition as he couldn’t see any progress. I had specific blood samples taken which showed I had an advanced leaky gut syndrome. During about a year, I had to follow a very strict diet and a rotation diet, wasn’t allowed to eat the same food more than once every 4-5 days and had to remove A LOT of foods I used to eat (and like) from my diet. During that period, urine tests also showed I had subclinical hypothyroidism which was also suspected from the beginning (leaky gut and hypothyroidism are the only “real” things we ever found that needed to be addressed). I was told many times my psoas muscle (left side) was really tight. Chiropractors kept realigning my pelvis but it kept getting out of alignment. I have a snapping knee (left side). My knees have always been cracking/popping since I was a kid, but it’s become way worse, now both my knees feel weak and my toes keep popping all the time (probably my mind playing tricks on me). I kept getting deep massages 2-3 times a month and thought all the pain would be gone once the muscles would be healthy again, that gave me hope and kept me going. One day, the doctor told me my muscles were healthy again and the leaky gut syndrome problem had been addressed. To this day, I keep taking some nutritional supplements. I do indeed feel some difference, but we never really managed to get rid of the trigger points in all the abovementioned areas. I started taking Clonazepam which made pretty much all the pain disappear just like Valium did in the beginning, but again, I knew this drug was not be taken long term and was not a solution. During a few months, I saw another physical therapist who said the problem came from my sacro-iliac and at one point, I did up to 2 hours of strengthening exercises a day, which never really helped even though my physical therapist said he saw improvement. I tried dry needling, all kinds of different exercises, massaging trigger points myself with balls, a Thera Cane, a foam roller, with or without oil/massage creams. By then, I could name lots of muscles, etc. in a lot of different languages and many doctors were surprised by how much I knew about specialized terms - right now I just want to forget everything I have ever known and I have ever been told (all these labels especially) as this had really scared the hell out of me, weakened me. Also, I had so much ergonomic material I could almost open a store to sell them (haha). I did a mindfulness-program for nine weeks in the beginning when my pain started, didn’t help at all. Started yoga about 2 months after the pain started and still practice once a week up to this day because I LIKE it, but it’s never helped me for the pain. I had tailor-made insoles made for me, twice (I was told the first ones made me worst). Nothing helped. I have had radiofrequency twice, which did help but… I would need it for each nerve of my body in order to feel good, which of course is impossible. More recently, I started to develop pelvic pain (left, still) and thought this might be related to an old scar from 6-7 years ago when I got an anal fissure surgery (but when you think about it, the scar is on both sides, so that doesn’t sound logical). I went to see a gynaecologist for perineural prolotherapy I had found online. He also injected other painful areas (both sides): femoral nerve, saphenous nerve. As this didn’t gave much relief (this relieved me from all the pain in that region, but only for a few hours), he said the cause must come from loose sacroiliac ligaments (I did confirm to him I had been told my sacroiliac ligaments were loose, but how do you even test that?) so instead he did classic prolotherapy in these ligaments 4 times (I knew by that time I should have noticed at least some improvement but couldn’t accept it). So as this didn’t help I thought I needed to see a real prolotherapy specialist for a more comprehensive approach as I had pain in so many different places (most of my pain still being mostly left/unilateral). I continued doing prolotherapy 3 times at an orthopaedist’s abroad (both classic and perineural/Lyftogt). As this doctor had said I was such a classic case for him and he could clearly see what the pattern was, he was sure he could “fix” me in about 6 months’. I had told him he was my last hope as I had tried everything else except for surgery and a few doctors had told me I had to go to a pain clinic and start to accept to live with that pain, which, to me, sounded like saying you’re only 30 years old but you’re a wreck, which I just couldn’t accept. Thanks to his words and his self-confidence, I began to be so hopeful that I started swimming again, the first time really felt great, during one day I felt so powerful, as if my body had “realigned” for the first time in 2,5 years (the placebo effect can so powerful, right? the next day my knees and toes almost didn’t crack/pop at all during my yoga class for the first time ever - the next day all the pain was back to normal). I went swimming again for a few times hoping to get that same effect (didn’t push myself too hard, I think). As I like swimming breaststroke, I felt I needed to give my inner thighs a good deep massage once (which included the place were perineural injections had been performed on me: femoral/saphenous nerve region - adductors). Ever since that one massage, about 5 weeks ago, I started feeling a burning/warm bilateral sensation in my inner thighs which never left since. It feels like the perineural prolotherapy has sensitized these nerves. I got so scared I even went to the emergency room where they prescribed anti-inflammatory drugs. The 4th and last time I went to see the prolotherapist, he didn’t have a clue anymore and couldn’t understand how my pain could have gotten worse as my pelvis was now perfectly realigned (seriously?). I went back home so desperate. He sounded so sure and now he didn’t know anymore? I had never experienced such a frightening symptom before.

I have bought Sarno’s book online about a year ago, read it once, but couldn’t believe this could apply to me as my pain was so real and as he didn’t specifically mention all the areas that were painful in my case. A few weeks ago, with this new frightening symptom, I was diagnosed with depression and put on an antidepressant (I know it’s just a tool but I really need this right now as I have never felt so anxious and so low) and started reading it once again as for the first time I thought my brain might be trying to tell me something. But above all, I discovered and spent a lot of time on this TMS Forum looking up key words and finding about other people’s stories that sounded partially like mine. I now just CANNOT deny it anymore. This book and a lot of things I have read here resonate so much with my personal story, the context during which my symptoms developed and my personality traits. I am currently seeing a psychologist, a neuropsychiatrist for hypnosis and a pain specialist who put me on Gabapentin/Neurontin and diagnosed me with fibromyalgia (whatever that’s called, I don’t care) and central hyperalgesia (that’s the scariest for me, but again, just a label, right?). I know and acknowledge the drugs are just tools I need for now otherwise I just couldn’t get up or sleep. I have been put on sick leave for a month one week ago and I’m trying to get the most of this time to get some rest, be kind with myself (which I’m not used to) and educate myself about TMS and practice, without forgetting to LIVE my life.

I must say I have started Dr Schubiner’s program from “Unlearn your pain” but I found it NECESSARY to share my story on here because I am sure getting answers from people from this community can be so powerful and also if I might be helping others by sharing my story then I’ll be glad I’ve helped. I am trying not to do too much at a time but I’ll make sure to use tools from Alan Gordon and from the Structured Educational Program as well.

THE ONSET OF MY SYMPTOMS:

When I started to develop symptoms, this is what was going on in my life:

- I have discovered my dad was an alcoholic in 2013, which by the way lead me to develop misophonia and a first episode of depression (but this is another story, even though misophonia is probably some kind of other TMS symptom - distraction from repressed anger, strong neural pathways, etc.). My pain started around the time my mom finally took the decision to leave him. My mom, brother and I had tried everything to help and save my dad, but he never wanted to get help so my brother and I kept telling my mom she had to leave and save herself. I didn’t want to be on anybody’s side, I just wanted them both to be happy. As my father was severely depressed next to being an alcoholic, he kept threatening us that he would kill himself if my mom left him. As two of my grandparents committed suicide when I was younger (in my dad’s family and in my mom’s family… not a joke), you can imagine how scary I was the day my mom left. I hated my dad for being an alcoholic, for having no understanding for my misophonia which he had caused (but was not responsible for) and for not wanting to get help. Mixed feelings, love and anger… because he was still my dad after all, and I was still his little girl. The day my mom left was probably the scariest day of my life. My dad didn’t commit suicide but he died alone in the house where I grew up about a year and half later. At his funeral, I couldn’t even cry (even though I cried a lot when I was alone). I know I shouldn’t feel guilty at all for what happened, but as I hated him and even something as simple as talking to me on the phone was difficult for me in the end as I resented him so much for how much he made me, my brother and my mother suffer, there’s probably a part of me that feels guilty for not having tried harder to get him out of this.

- I started to try to get pregnant for the first time 2-3 months before my pain started. I got pregnant about 5 months later. I got the news because I had to take an MRI, couldn’t take the MRI because of a potential pregnancy and had to take a pregnancy test… Seeing the test was positive was not such a good news as I was in pain, wondering how I could take care of a baby like that, but after a few days I got used to the idea and was glad after all. Got a miscarriage at 5-6 weeks. This was a difficult period, but at least I knew I could get pregnant and all I wanted now was to get rid of the pain. During the time I knew I was pregnant, I didn’t feel any difference in terms of pain. Ever since my miscarriage more than 2 years ago now, I haven’t been willing/able to try to get pregnant again (or maybe I’ve unconsciously prevented myself from trying again) because of the pain. A few weeks ago, I was finally accepting the pain I had was bearable/acceptable to start trying again when I got this new symptom (burning nerve sensation in both my inner thighs (see above)). I keep wondering if this is my brain trying to tell me something. After all when you give birth the baby passes along both legs, or am I thinking too much in terms of “symbolic”? I am convinced I want to have children, I had thought long enough about it before trying, but I’m such a perfectionist person maybe I’m unconsciously too scared of having a baby and not being able to take care of them? Every time I hear about someone being pregnant or even every time I see a baby, it hurts so much and it feels so frustrating. Up to recently, I had kept my miscarriage to myself (only my mom knew because we were on a trip and I felt like I had to tell her because she would otherwise have guessed as I couldn’t drink alcohol), even though this happened more than 2 years ago. I wanted it to be a surprise and it felt like a failure when this happened. After having read Sarno again, I’ve told almost all my closest friends and family members about it. I should probably feel more released about it, but this doesn’t change anything to the pain I feel each and every day, at least for now. I am a very social and talkative person, but I don’t talk about serious things easily because I want to appear as a strong person.

- Working more than a fulltime job: a full-time job, freelancing almost every night and at the weekend, teaching at a university and trying to get a teaching training certificate (I remember having dyspepsia for the first time in my life when going to class as I felt I wasn’t capable even though everyone told me otherwise, this was clearly a stress/an anxiety symptom) - I stopped attending after only one month) but continued doing all the rest. I kept applying for jobs all the time and got the news I had passed tests and would become a civil servant 1-2 months before I started to get pain. After all, this was all I had been looking for, right? A well-paying and secure job. Even before starting the job, I felt like I was going to be “trapped”, as if all my future was known in advance and for the rest of my career. This sounded so boring. I’ve been in this job since (for more than 2 years). Everyone keeps telling me how lucky I am to have such a secure and well-paying job, with nice colleagues, not too much stress, flexible hours and so on. I feel like I should feel lucky and grateful for this job I have been looking for, but deep inside, I feel like I am not at the right place. I only like the fact that this is a secure job because I don’t like insecurity. But we only live once, right? I have a job I have studied for, I loved my studies, I don’t even know what else I would want to do. All I know is that having a computer/intellectual job is not particularly helpful for my pain as I can more easily concentrate on something else than my pain when I am busy with my hands (and no with my BRAIN). Right before hearing the news I had gotten my current job, I got a call from a prestigious international organization to let me know there was a vacancy in relation to tests I had taken previously but had not been successful for. They had reviewed my CV, tests and wanted to invite me for an interview. I knew from someone working there we were 2 candidates. I did job coaching because I wanted that job so bad (or at least I thought I did) and this was a once in a lifetime opportunity. It took months before I heard the news that they were sorry for me but had chosen the other candidate even though we were both suitable, they had to make a choice. I felt so disappointed, it was such a failure. I always graduated top of my class and thought every company/organization I would ever apply to would be “dying” to recruit me, and having to learn that this is not the only thing that matters in order to get a job is a very hard pill for me to swallow. I can never get satisfied with what I have, sometimes I just apply to jobs that I know deep inside of me I don’t even really want just because they’re prestigious and I feel like I am worthless if I don’t get into one of those jobs, and I know I must work on that. In my first job, I was frustrated because of the salary, I felt like I was exploited (which really was the case), in my second job it was total anarchy and most of the time I had nothing to do but it paid well. Now I have everything I have ever wanted but that still doesn’t seem to fulfil me.

- A legal dispute for a manufacturing defect in our apartment. I put so much energy into just to prove someone was wrong (someone was indeed wrong). So much money spent. So much stress writing letters and fighting with my lawyer/expert against the responsible person. We decided to put an end on it because of the money we had already spent on it, didn’t know where it was going (my lawyer told me the expert appointed by the judge was a real ass) and for my own health. Again, this felt like such a failure.

- Writing to the town I live in so they could do something about the noise coming from trucks and tractors on the national road. I became crazy about the noise, couldn’t even relax in my own apartment because of that noise and wrote a petition and convinced everyone in my street to sign it (I was not the only one being exhausted about the noise, but the only one exhausted to the point of writing a petition, you get it).

I could add more to this, but these are the biggest issues I can think of. I’ve always been a very perfectionist person, probably because all I have ever known is my brother being reprimanded by my parents because he didn’t do his homework and was a rebel kid and then teenager. I probably didn’t want to be trouble to my parents and so from kindergarten up to now, I have always been the perfect/wise kid/teenager/young adult every parent could only dream of. When I started university, this apparently became such an important “thing” for me even though nobody was putting pressure on me for anything that I became very serious, wanting to be in control of everything, never letting go. It started with noise from my roommates (I would call my parents in the middle of the night crying to tell them I was gonna fail university because I couldn’t sleep for just one night - at that time I had digestive symptoms), misophonia and now chronic pain. It seems like my brain has been very smart at distracting me from my own (repressed) emotions, first by turning my attention to noise in general, to misophonia more specifically and now to body symptoms/distractions.

I believe I have TMS 100% - I think. I am just SO scared of my latest symptom and of maybe having been sensitized due to injections and never being able to reverse this. ALTHOUGH I have noticed there are times when I do not feel pain there at all, for example when being very distracted by something else and laughing or when doing powerful autosuggestion and a physical activity at the same time.

This just seems like a big puzzle to me. Do I have to be able to express all my anger towards my dad in order to heal and what if I can’t? How do I know if I am just too afraid of getting pregnant without trying and what if it becomes worse if I do try again? I am able to do the exercises suggested in “Unlearn your pain” but right now there is a lot of anxiety and fear in me and I don’t know how to overcome that.

I know this was very long. Any thought/advice on this would be VERY appreciated. I am grateful to anyone who will take the time to read me and possibly even answer me.

Wishing you all the best.

 

Thank you for sharing your story. I am new here and can relate to some of the issues you are having. I had a hard time when I moved to a new place that was very noisy. I do not have a ton of advice but I was able to overcome the noise making me upset and can sleep much better now, which is good for my pain. I hope your journey is going well.-Brian

 

Hi Enidid: sorry you did not get many responses to your story from October. That can be discouraging but don't take it personally (happened to me too and there is a bit of a luck element on here on who happens to be reading at any time). Anyway, I just read your story (your English is great by the way). You sound like an absolutely classic TMS case: many symptoms which move around, exhaustive tests and therapies, multiple people telling you it is different vague conditions (fibromyalgia, "myofascial pain", "SI joint looseness", etc). And I assume, reading your post, that you have been obsessing about it this whole time as well, which of course just fuels TMS.

A couple of thoughts/questions: 1) If you are not 100% convinced you have TMS it might be worth reaching out to a TMS coach or therapist, and get their take. Just to really convince you. You have probably already spent a ton of money on this so this would be something that you might actually get value for.
2) If you are starting to go thru Unlearn Your Pain, how is it going so far? I am curious because I actually am just kind of starting to go thru Schubiner's method as well, meditating and journaling. I am 100% convinced I have TMS (back/pelvis pain), but have not quite made the mental transition of eliminating the fear and obsession, but am working on getting there. Yes, for me, living your life is super important. When I can distract myself with doing "normal" things, I feel better, even if I have to force myself to do it sometimes.
3) You mention swimming had a really good effect - does it still? It's interesting because of all the things I have done, including other types of pretty intense exercise, swimming for 45 minutes makes me feel really good and normal, at least for a couple of hours afterwards. It's like a magic transition occurs and I am briefly my old self again. So I just need to swim for about 8 hours every day, haha.

Anyway, I hope you are well. Thanks for posting your story

 

Hello @hawaii_five0 sorry for the late reply. I'm currently hospitalized and not doing great these days. Obsession and fear are my worst ennemies. I'm going to try CBD and maybe esketamine afterwards because the pain is just too much to handle for me at the moment. But I promised myself I would be meditating for one hour a day and I keep on learning about pain so I'm not saying I'm not doing TMS "work" anymore.
I didn't finish the "Unlearn your pain" program (was stuck at week 2 for 3 weeks) and I am not able to swim at the moment so I'm not really able to tell.
Hope you are well!

 

hi enidid: I'm really sorry you are not feeling well and in hospital. Please take care and hang on to the belief and knowledge that things get better, and often when they seem at their worst. Yes, obsession and fear, exactly, that is the key to all of this, being able to lose that.

 

Hello . . . I am so sorry for all the physical and emotional trouble you are dealing with! I know it can be completely exhausting and defeating. For some encouragement, I can tell that I went down a similar path of rapidly increasing symptoms, and endless doctors and treatments that did not work. I suffered with moderate TMS symptoms for 12 years, and then severe ones for 16 months following some major life stress. During that time, I slowly withered away to the point I was very weak, sick, depressed, and fairly confident that I was going to die within a year or two.

Dr. Schubiner is actually how I found out about TMS/MBS. His work helped me immensely, as did the program here. If you take it step-by-step, and try now to worry about the big picture, it really is manageable . . . hard, but manageable.

This is a very powerful thing you have recognized! Structural pain does not come and go randomly, like TMS pain does. Keep looking for inconsistencies in your symptoms as that is a great way to boost your confidence that the pain really is TMS. Keep up the good work!

 

Hello! So many words resonated with me. I want to tell you just one thing: keep on. Keep on. Keep on.