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Almost free pudendal neuralgia, back pain, neuropathy, dry eyes

Discussion in 'General Discussion Subforum' started by TimmyH, Jul 21, 2016.

  1. TimmyH

    TimmyH Peer Supporter

    Hi my name is Tim and I am a 31 year old from from Sydney Australia. I have been battling chronic pain for 2 years now and I thought It would be therapeutic to outline my entire story in an effort to finally beat the remnants of this syndrome. It is quite long so feel free to skim over but once I started writing it felt good to tell the whole story so I did. I appreciate any advice or comments.

    I believe my first TMS symptoms started back in 2007 when I started my first job after finishing university where I began to develop constipation for what would have been 6 months. I had never previously suffered from this and it came out of the blue with no change in diet. It really bothered me so after a while I had a colonoscopy which was normal and after reviewing my diet nobody had found an answer to it. I modified my diet to include huge amounts of fibre however still experienced symptoms. Then one day for no reason at all my symptoms vanished to the point now where I can eat whatever I want. At the time looking back I remember being extremely self conscious of my appearance as I have always looked very young for my age. Patients constantly used to ask me if I was old enough to work here or ask if somebody else with more experience could do the procedure. Being fresh out of uni and keen to impress this was something that caused me great angst. My baby face has always bothered me but now that I was transitioning to a professional occupation it was extremely apparent how young I looked. I’m not entirely sure why my symptoms left me at this time. I was becoming more comfortable at work and making a lot of new friends so perhaps that was the reason.

    I don’t recall any other symptoms until the ones that have been occurring and have not let up for the last 2 years. It started in July 2014 whereby I fell over snowboarding and hurt my right shoulder. It wasn’t a major injury (No fracture or dislocation) however a few weeks later I was still having a lot of pain. I had an MRI which showed some minor changes which looked like they had perhaps been there a long time so were doubtful to be the cause of my severe pain. My job as a sonographer involves using my right shoulder to scan all day so I was extremely worried about the state of my right shoulder and my future in this profession. On top of this my partner Emma and I had just bought our first apartment off the plan and we were also saving up in anticipation to take time off work to go travelling for 6 months the next year. I have no doubt the financial worries and fear of the future was fuelling the ongoing pain. My right shoulder had been hurting for about 4 months making it impossible to use my right arm to perform scans so I taught myself to use my left hand to scan however soon enough this began to hurt just like my right side. This was making me extremely worried as I was finding it really difficult to get through the days yet I had made some serious financial commitments recently and knew I had to keep the money coming in. In October 2014 I seen a surgeon about my shoulder who told me that he could operate on it but the surgery had only a 50% chance of fixing my pain. He also told me and that I did not have enough time to recover before my trip which was scheduled for February 2015. So as suggested by him I tried a series of injections to in my right shoulder to see if that would help but they did not. However in December 2014 I read about a fairly new injection where they inject plasma from your own blood into your shoulder and a few studies cited its success. I believed that this would help me so I got the injection and a couple of weeks later my shoulder was much better. Looking back I believe it was my belief in the injection that stopped my shoulder hurting. However almost as soon as my right shoulder stopped hurting I developed lower back pain. It was now January 2016 and my lower back was making it extremely painful to sit, run and do almost anything. This was inopportune timing as I was planning a quite extravagant proposal to ask my Emma to marry me. Along with this we were also in the process of moving out of our rental apartment to live with my parents for a couple of weeks before the big trip. I had some xrays done on recommendation from my physio and they showed that my pelvis was very tilted and I had a scoliosis perhaps due to a leg length difference. I was shocked how crooked I looked and was extremely worried about our trip because the first couple of months were to be in Africa which was sure to be hard on the body. I did my best in the couple of weeks before the trip to get better with exercises and such however when the time came I was in more pain than ever. I contemplated not going on the trip but my Emma and I had planned this for years and I did not want to disappoint her so I told her that I would be fine and went. The first few weeks in Africa were a nightmare for us both. We were camping in remote places and sitting for hours on buses on dirt roads all of which was agony on my lower back. I was struggling immensely. At this stage my lower back pain had spread and was now affecting my thoracic spine. My thoracic spine now actually was troubling me more. We got to a point in our trip where we knew that I had to take a rest so we left the tour that we were on early and decided to rest up at a beach resort in Kenya. I did have a few days at this point where I didn’t feel too bad and was able to enjoy myself momentarily. After a while however we both began feeling a little bored being stationary at this resort so I thought we needed a change of scenery. So we decided to change resorts and went to a very remote place on a small island in southern Kenya. It was a very bumpy long drive to get there and I was getting more anxious as the drive went on as we were literally heading into the wilderness and I was by no means pain free. By the time I got there I was in a lot of pain. After a few days at this resort my pain was at an all-time high. The less I did the more it hurt and I was beginning to wonder whether I had something seriously wrong with my thoracic spine especially. I thought that perhaps I had a herniated disc and that was causing my pain. At this point neither of us were enjoying ourselves and I felt extreme guilt for this and we decided that the best thing to do would be to fly home. We booked a flight , 3 of them actually for the next morning. That night however, I was very anxious about the flight as I could not sit without pain and I did not know how I would get through 24hours of air travel plus the 4 hour drive on corrugated dirt roads to the local airport. But I did not want to go to hospital in Africa so I knew I had to try to get home. All night these thoughts ran through my head. It was the worst night of my life actually, I didn’t sleep a wink and was very fearful. It was 5am the next day and we were due to leave and I tried to get out of bed but every muscle in my back had gone into spasm and I couldn’t move. I was riddled with pain and my fiancée didn’t know what to do as we were both scared. Some men from the hotel helped me get to the boat to take me to the mainland. Once I got to the shore I stood up at the wharf in an effort to try to make it the 50metres to our taxi. However I was struggling to walk and with every step I was losing feeling in my legs. I got to the taxi but my legs were weak so they laid me down on the back seat. At this point I realised that my legs and entire lower abdomen were numb. I could barely wriggle my toes and couldn’t feel my Emma’s hand on my leg. I was petrified by this as my level of numbness corresponded to my lower thoracic dermatome which is exactly where I was having my pain. I thought that I must have a herniated disc pressing on my cord, it was the only answer. I told Emma my symptoms and we knew that I shouldn’t be moved for fear of damaging my cord further so we told the taxi driver that we needed an ambulance. This was difficult because there was difficulty with language barriers and we didn’t really understand how challenging it would be to get help in the Kenyan health system. Several hours went by with me laying on this back seat of a taxi waiting for an ambulance, still not able to feel my legs and I was imagining the worst. The ambulance arrived and it was evident that they didn’t have the same expertise that we would expect in Australia, so Emma had to tell them what to do to safely get me out of the car. Once we got in the ambulance and started speeding down this dirt road I was nearly getting bounced off the stretcher. I was screaming in pain and with anxiety. I was continuing to lose more feeling as my mood worsened. Looking back, my experience from working with many spinal cord injury patients myself was influencing my expectations of my own situation and no doubt was contributing to my symptoms. We arrived at this remote community hospital which did not have many facilities and certainly no MRI scanner. I was begging them not to take me here because I knew they could not help me. They did not listen however and took me in anyway. After a long time waiting a Doctor came in and did a quick examination and said that my reflexes were intact and that I likely had a herniation pushing on a nerve root. I knew this couldn’t explain my symptoms however as my numbness was from my iliac crests down and that would have to be cord/cauda equine symptoms. None the less this did calm me down however I still could not do anything bar move my toes. Emma after many hours of trying got through to the travel insurance people and they organised for the next day to air lift me to Nairobi. By the time I got to Nairobi I had calmed down quite a lot and had gotten a lot of my feeling back in my legs and could move them more. This made me feel very relieved, however I was now experiencing tingling and electrical zaps in my whole lower half. After a couple of days at this hospital in Nairobi I finally got an MRI but it took a couple of days for the results to come through. The whole first few days in this hospital were extremely frustrating. Having worked in Australian hospitals for 8 years I knew exactly how they should be treating a case like mine and put simply what they were doing was far from this. This was causing me great angst as I really had to be the master of my own health care because they were continually asking me to do things which you would not be acceptable in Australia. They were kind, caring people but it was difficult to put to the back of my mind what would be happening if I was back home. On top of this Emma was only allowed to stay for 2 hours a day so my 2 weeks in hospital was extremely lonely. I eventually got my MRI results back and my spine was 100% normal, not even a bulge. I couldn’t understand this. My symptoms were real, I am an extremely calm analytical person and I knew what I felt and was continuing to feel and a normal scan doesn’t explain that. Never the less I was relieved and relaxed a lot and started to begin moving/hydrotherapy in hospital. Only trouble was every time I stood up my legs would be flooded with paraesthesia’s and feet would go numb. I still couldn’t sit and was in a lot of pain with back spasms. During my 2 weeks in hospital my insurance company was continually causing me stress as they kept wanting more information from me regarding if I had any back problems before the trip and wanting more details so they could cross check if I’d seen any doctors in Australia for back problems before the trip. I was worried especially because I saw a GP a week before I left to get some pain killers for my back. If they deemed this a pre-existing condition we would have to pay for it all including the being airlifted. I was worried about my condition ruining us financially. After two weeks my insurance company agreed to pay and I was flown back to Australia business class lying flat to not aggravate my back.

    I thought once I got back to Australia that all my problems would be over but this was not the case. My paraesthesia’s and numbness in my legs hadn’t got better and we didn’t have anywhere to live as our apartment which we bought wouldn’t be available till august. We decided that we had to move back in with my parents sleeping in the lounge room. My parents were in the process of selling their house at the time which also wasn’t ideal. I was still essentially bed bound from my back pain and wasn’t receiving a lot of emotional support from my friends and family at all. Emma was my saving grace however taking care of me with compassion and kindness. At this stage I was bouncing from doctor to doctor getting MRI’s, blood tests, nerve conduction tests etc. You name a test and I had it done and every single one of them was plum normal. After a couple of months at home Emma and I came to the realisation that the dream of the trip was over. This filled me with immense guilt and shame as I felt responsible for this. Emma returned to work to keep us earning some money and I spent my days doing my best to occupy myself researching strange illnesses that perhaps could be responsible for what doctors were now calling neuropathy symptoms. In July 2015 we decided to move in to a friend of mines place for a couple of months until our apartment was ready and this around the time of my 30th birthday. In my research I stumbled upon a book by John Sarno called healing back pain. I read the book and thought that it applies to me and begun to instigated some of its suggestions. Within a couple of weeks I was able to sit again and I also begun exercising. I couldn’t believe it at the time but I was very happy. I still was struggling with my paraesthesia’s but I was happy to be moving forward. It was now august and we moved into our apartment which was great and I was going to the gym regularly slowly improving. Gradually my back pain disappeared. I decided to go back to work part time. I was working 3 days a week but was struggling to get through the days due to my numbness, tingling, and zapping. I felt that in order to make myself feel like I was contributing again and to perhaps maintain the façade that I was alright I would go back to work full time. This was a bad decision as it increased the physical and mental stress too soon on me. Around this time I was going to the gym riding on an exercise bike when during a workout I started getting this electrical zapping pelvic pain to my perineum. I stopped the session and went home not thinking too much of it, but from then on this electrical perineum pain stayed with me. The more I walked the more zaps I got and the more I sat down the worse the pain was. After several weeks of this I could no longer get through a day at work so I stopped working altogether. This was in October 2015. The pelvic pained worsened to the point where I was again house bound and could no longer sit without pain, so I spent most of my days in bed researching about the current symptom that I was experiencing “pudendal neuralgia.” Looking back on it, it is no surprise that I developed pelvic pain. I still had the image of my tilted pelvis in my mind and was seeing a chiropractor who told me that my pelvis was one of the most tilted pelvis’s that he had ever seen. I was continually obsessing about my pelvis and looking at myself in the mirror after each chiropractic adjustment seeing if I was improving. It was constantly on my mind. I began seeing a specialist that treated pudendal neuralgia and begun taking all sorts of pain killing drugs which did not help in the slightest. I got another MRI done of my pudendal nerve which again was normal. Also nobody could understand why my pain was bilateral as they told me that most cases are unilateral if the nerve is impinged. At this point I was at rock bottom. Nobody could help me, nothing seemed to work, I couldn’t work, felt worthless in my own eyes and was now spending a large portion of my day betting on sport. It was now Christmas 2015 and Emma had decided that it might be fun to go camping with some friends and get away for a couple of days. I was scared of this because camping obviously involves a lot of sitting and this was my greatest fear. However quite strangely I got to the campground, begun to relax, swim, fish and enjoy myself. For those few days my pain greatly reduced and I was able to sit again fairly comfortably. I thought that maybe the camp chairs were perhaps putting less pressure on my perineum and that was the reason. I got back home after the trip and for the month of January I felt much better and begun to be more active again. Much of my body wide paraesthesia’s had left me and although I was still getting pelvic pain I could sit on a cushion without pain. I decided to return back to work again however in the week leading up to work my pain returned worse than ever and on my first day back I was really struggling. I worked part time for a month when my boss asked me if I would like to go full time. I Felt pressured and didn’t want to admit to anybody that I was still struggling so I said yes. I realise that I really fear looking weak in anybody’s eyes and this is why I always have trouble letting anybody know that I am doing it tough. Again this decision was a disaster. I could no longer sit at all so I spent the entire work day on my feet or knees. When I had my lunchbreak I would lie down on my own on an examination table and when in our shared office I would stand in the corner. I felt alone and isolated in my pain and could not tell anybody about my struggle except Emma. I dropped back to part time 3 days a week in march. It was around this time that I had a pudendal nerve block performed by the specialist that I was seeing. The nerve block made me numb for a few hours however after I was in more pelvic pain than ever. I was supposed to just take a week off work, but I took 3 off as I was struggling. Emotionally I was completely spent. The harder I tried to get better the worse off I was. I was increasingly turning to gambling to paper over the cracks in my life and was using it as an escape from it all. After some initial wins I begun to lose large sums of money and it definitely became an addiction. I was losing and gambling more to get it back and compounding the losses. After a while I managed to accumulate several thousands of dollars debt on my credit card from gambling, I wasn’t currently working and Emma did not know. I felt really ashamed and felt so stupid for letting her down. I returned to work at this time 3 days a week and my symptoms weren’t improved at all. One afternoon I was on an internet forum for pelvic pain and one person outlined that they had recovered from pudendal neuralgia using John Sarno’s methods. After a bit more research I found many more cases of people like this. I couldn’t believe that I hadn’t tried the mindbody approach on my pevic pain. I thought that because the pain felt so different to my back pain that it must have been a new problem. I immediately started journaling, being more active, gradually building up my activities, talking to the pain in my head. Within about 3 to 4 weeks my pain began to change and I had some days where I was 50% better. I began reading Howard Schubiners Unlearn Your Pain and doing the activities prescribed in there. My pelvic pain was gradually fading. I began running again and realised that I almost had no pain when I ran but pain when I walked. I knew than that my pain was TMS because if it was structural than running should hurt more than walking. I began forcing myself to sit again. I refused to use cushions etc. The pain was terrible but I would not give up. I realised that after hours painfully sitting that sometimes it would fade away and I would be better than ever. I began not fearing the pelvic pain and knew if I ignored it would either increase or decrease but it meant nothing. Gradually my perineum pain 90% disappeared. At this point my tail bone or coccyx began to hurt. It felt like my muscles were in spasm around my tail bone and was like sitting on a bruise. I knew this was TMS too as during the course of my illness one symptom would substitute for another. I disregarded this symptom in my head and today it is quite sproradic. From doing the activities from Unlearn Your Pain I realised that perhaps a lot of my fear of anger, internalisation of feelings and low self esteem comes from my parents strained relationship, my relationship with my sister and my feelings about myself in high school. I also realised at this point that I had to tell Emma about my gambling. This was difficult because in her eyes I was a hero for battling through this and treating her always with kindness. It took me a couple of weeks to build up the courage to do so as I was extremely worried to let her down. During this period my pelvic pain was at an all time low because I knew I could ignore that, however my eyes begun to become dry and cause me pain. I had sporadic dry eyes throughout the course of this but it never caused me too many problems. However now they felt so dry and I was always blinking madly to make them feel better, putting in artificial tears. My eyes were making it difficult to stare at the ultrasound screen all day at work and ironically causing more trouble at work than my pelvis. It was now June 2016 when I told Emma about the gambling debt. It was a huge outpouring of emotion, guilt, shame and I felt exhausted but relieved. She was kind to me but obviously upset as well. I have been enjoying the freedom that being honest with her brings. My eyes since that moment have been better but are still giving me grief at times. Oddly enough occasionally my pelvic symptoms for a day are bad and my eyes feel better or vice versa.

    I feel like I am close to beating this. The symptoms are erratic and don’t make sense anymore. The pelvic pain apart from the occasional day has all but faded and now my eyes are my latest ailment. I know my pain is coming from a psychological place and I have come a long way in the last few months. I can do things physically now that I wouldn’t have dreamed of 3 months ago. I am wary of going back to work full time as I have had so many false starts but that is my desire. I’m not sure what I need to do next to be pain free. I keep thinking if this symptom goes away I will be pain free, but something always replaces it. I know my dry eyes are TMS because I have had days where I am happy and distracted and they don’t bother me so much. I am however not sure what to do next to finally put an end to this meaningless pain.
  2. TJuerg

    TJuerg New Member

    I'm sure the "heavies" on this site will have a better answer that mine, but as I am in the states, I saw your message late as I can't sleep.

    I too have had chronic pain issues including mostly lower back pain, but also pain in both shoulders, scapula pain, and lastly , this very difficult sciatica pain which almost knocks me off my feet in my checkstand.

    Dr. Sarno's book got me out of bed and back to work after almost a year of no work. I am often tense at my job as I must "suck up" and not express anger or even displeasure at crummy customers or bosses. So since this sciatica has reared its ugly head, I KNOW that I have TMS, as pain moving is the quintessential sign that you have it, AND that I am winning this fight!

    Perhaps, the pain that you are experiencing now is your last pain, and that your mind will stop its protecting of you soon. I call my sciatica, "TMS's last stand" because that's where I know I am at. I am almost there.

    Another thing, my scoliosis was so bad in 1989, that my chiropractor's wife gasped at the sight of the x-rays. But my recent MRI from my spine doctor showed my scoliosis was "not bad at all". Perhaps our tense muscles actually pull us out of whack?? Have you tried meditation to help you relax your body? That had helped me immensely.

    Please keep fighting. I think you are almost there. Your Emma sounds amazing and I hope things go well for your future.
    Anisha_d87 likes this.
  3. TimmyH

    TimmyH Peer Supporter

    Thanks for your reply. I have been meditating using doctor schubiners mindfulness cd. I'm perhaps not as dedicated doing it as I should be but do, do it most days. I am with you about our muscles pulling our spines out of alignment. I have experienced it many times before. I too feel like I am close to being mostly pain free. Although everytime a symptom changes it takes me a while to convince myself that this is tms and to not focus on the new symptom. I am truly amazed how the brain can change the type of pain entirely from electrical tingling buzzing to muscle spasms to dry eyes. It does an amazing job trying to grab our attention. I do know if I can find away to ignore my current eye issues and tell myself with confidence that they too will go away. I already notice when I'm busy my symptoms are far less noticeable.
    Pretty grueling this tms journey though.

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