Part 3: The Story Of My Diagnosis

February 2012 – September 2012

Part 2: Tailbone Shift

Around February of 2012, I decided to see another Spine Specialist (a much more senior person) to get a second opinion about my tailbone. This Doctor tried to convince me that I was imagining extra pain. That it was all in my head. He said a little bit of pain was normal, but the amount of pain that I felt was too abnormal to be true. He said people do dislocate their tailbone , but they recover  fast and the fact that I wasn’t recovering, was my problem. He increased my medication but that didn’t help either. When I said the medicines weren’t helping, his reaction was, “You say my medicines aren’t working. YOU tell me why they’re not working!”

By April 2012, my pain reached its peak. I was sick of Doctors and Physiotherpists and I was beyond sick of explaining my story and trying to justify that my pain was real. I knew that my pain was real because I felt it. I had pain shooting down my legs! My butt was hurting. I used to carry a donut cushion because each time I tried to sit, I felt the same sharp pain .It was painful to stand! It was painful to walk! No matter what I did, the pain wouldn’t leave me.

I spent a lot of time online looking for solutions. I wanted to know whether what I was experiencing was anywhere close to normal. I used to feel ridiculous about my pain, especially because my Doctors didn’t believe me. It was all messed up. Knowing that I really was in pain, and then being told “you’re imagining it” used to drive me even more insane.  I came across someone online who recommended taking corticosteroids in my tailbone. I did my research and found that many people felt instant relief after taking corticosteroids. I went back to the Spine Specialist to speak with him about it, to which he said, “You don’t need it. You’re so young! Nothing is wrong with you. You don’t need to take it. You guys! You youngsters! You think you know better than us.” I know he was much older, but I don’t think it mattered at that point. I told him that I didn’t care if he thought I didn’t need it – I WANTED it.

So I took corticosteroids in my tailbone.(http://www.medicinenet.com/corticosteroids-oral/page2.htm#for_what_conditions_are_systemic_corticosteroids_used).

Injections deep inside my tailbone. Imagine that.

He told me that it was normal if my pain increased a little bit, but in less than a week, I would feel better. One week later, I went back to him, still complaining of pain in my tailbone, lower back, butt and legs. The whole of my lower body just didn’t stop hurting. He was almost angry to see me again and said, “Didn’t I tell you that you don’t need it? Please just give it time to heal. You young people!” I told him that I was considering leaving Design School because I couldn’t deal with the pain anymore. Because I didn’t think it was possible to get through such a physically taxing course in SO MUCH PAIN. His reply to that really made me lose some respect for him. He said, “You’re giving up! So easily. Why? Just because you have pain? I don’t understand your generation you know? You guys take everything for granted. How can you leave your course so easily? You say it’s your passion and you want to give up? This is not done. People like you just don’t want to try hard enough. Just because of pain! A bit of pain!”

Deciding to leave Design School was one of the hardest decisions I took and if anyone thought that it was any where close to easy, I think they’d be very very wrong. Having a doctor tell me that I was giving up too easily was simply demoralizing. But I decided I didn’t need his opinion.

I was starting to freak out. I couldn’t tolerate my pain anymore. Life was changing too fast and I didn’t know what to do. Through all this pain, confusion, frustration and craziness, there was still something inside me that wanted to figure this out. I had a strong feeling that there was something more serious happening inside my body.

During this time, we were also speaking with other Orthopaedic surgeons over email and Skype. I consulted a couple of other surgeons in Singapore too, but they had no clue what was happening to me. I was treated like anyone with sports injury.

The only “sport” I was doing back then was to walking around my house.

Part 1 :Herniated Disc at L5-S1

A week after that, I went back to the Spine Specialist and literally DEMANDED to be sent for an MRI and X-ray. He should have sent me for the scans himself, but he wasn’t doing anything expect discouraging me.

 My scans showed that I had a herniated disc in my lower back. The Specialist said herniated discs were common and I didn’t need to worry. I just needed to continue Physiotherapy and take medications to help with the pain. I asked him WHY this was happening to me. All he said was that it happens sometimes.

It happens sometimes?

Left shoulder, tailbone and now lower back. No one knew why. Some people thought I was working out too much(or dancing too much), which just made no sense.  I could barely walk! It used to make me really angry when people said things like I was in pain because I wasn’t eating right. People started giving me all kinds of advice that I didn’t need or ask for.

I was really running out of patience.

Part 2: Herniated Disc at L5-S1

I was desperate for answers that made some sense. I needed real advice. I needed to know how to feel better. It had been a year and a half since my shoulder operation and about three years since I felt no pain. I was starting to forget what it felt like to be painless.

I went to see another Spine Specialist around June 2012. He was so upset with the amount of pain medicines (and the type) I was taking so he changed the prescriptions. He put me on nerve medications instead. I still needed painkillers and muscle relaxants along with that. He told me that there was a need to break my pain cycle. It’s not as if I didn’t know that! I needed to know HOW to do it. I needed to know WHY I was in pain and if my body was okay. I was told to start cycling (stationary) in order to strengthen my back and to watch my weight because that could make things worse. There was no way I could do any form of workout, so I did nothing. I was just constantly in pain.  Sometimes I’d find myself wondering if I was even living MY life.

Homeopathy

I saw two different Homeopaths in Singapore around that time. My parents believed that this would work so I tried.  I didn’t notice any change.

Part 3: Herniated Disc at L5-S1

In September 2012, we decided to fly to India to meet more Doctors and Specialists from Mumbai and Pune. They patiently looked at my reports and told me things I already knew by then. They  believed I was too young to be in pain. I was told I didn’t need a surgery so my next option was to take Epidural injections in my lower back. My pain was really starting to take a toll on me. I  don’t know how I was surviving through that much pain…

We must have seen about five Doctors plus another Homeopath in India.

We got back to Singapore and went over to discuss other options with the new Spine Specialist that I was seeing. He referred me to a Pain Management Specialist.

Part 2: The Story Of My Diagnosis

January 2011 – December 2011

Part 2: Left Shoulder surgery

The strengthening exercises  made the pain even worse. At times I couldn’t feel my arm at all! I knew it was hanging off my body but I don’t know how it was doing it. Within three weeks of my consultation, I was back to the Specialist signing documents for Inferior Capsular Shift Open Surgery. I didn’t need to think anymore. I made up my mind and convinced my parents that I wanted this. I was tired and frustrated. I thought I had been patient enough.

So, end of January 2011, with a lot of optimism, I went under the knife . People usually take about six weeks to completely recover from this operation, but I took close to a year or longer. I was taking six muscle relaxants plus four painkillers per day! Also, most people are able to start with rehabilitation within three weeks but I couldn’t. I was trying to be very calm even with the increased pain from surgery. When I went back to the Specialist after about eight weeks, I was told, “You know, you’re the only patient I’ve come across in my entire life who is taking so long to recover from this operation. Maybe you’re just not able to handle the pain. I think your pain threshold is rather low. You need to be more patient with it. Let it heal, you’ll be fine. Look, if you can’t handle this pain, how are you going to handle childbirth?”. I’m not sure if I cared about childbirth at the age of 20 and a half. I don’t think I did. I just wanted to recover and get back to studying Design.

Twelve weeks into the surgery and I was still in as much pain. The only, and the main thing, that had changed since before the surgery was that my shoulder didn’t “pop” out like before. It felt like it was in the socket, fastened up. Pain wise, there was no difference. Not even a bit. I still felt pain running down my entire arm and it would turn icy-cold at times. When I talked about this to the Specialist, he would tell me that he had done his job and the rest was up to me — I needed to continue with my Physiotherapy sessions and the exercises, increase my pain threshold because childbirth was going to be worse, and I needed to be EVEN more patient with my pain.

Around this time, my parents were also starting to get really impatient (and confused) with the situation. The Specialist said I was fine but I said I was not. My shoulder wasn’t hanging off, but I complained that my pain wasn’t reducing. My parents saw me in pain, but they just couldn’t relate to the intensity of it all.

Break from Design School

Around July of 2011, about five months after my surgery, things were still unclear. I was still in pain and still needing medication. I didn’t like how it was starting to affect my life at Design School. I completely disliked the fact that I sometimes had to hand-in projects that were totally below my personal standards. All this was just so not ME. So, I decided to take a year’s break to figure out what was up with my left arm and give it all the time it needed to fully recover. Even though I wasn’t too happy about this, I was so positive that a year later, things would all be perfect and I would be pain free.

Acupuncture and Chinese Medicines

By now we were going all over the place, looking for and trying anything that could possibly work for me. I started seeing an Acupuncturist, who I had a lot of difficulties communicating with. I don’t even remember the kind reasons she gave to me for my pain. But because I was so desperate to feel better, I decided to believe her and give things a shot. I had needles on my ear, on my elbow, in my temples, on my neck, in my little toe, near my belly, on my wrist and basically at places I didn’t think could have any connection to my actual shoulder. I don’t think it helped with the pain even a bit; in fact, I started developing fever after each session. I was told that it could be a form of release effect and that these things are normal in Chinese Medicine. So I continued acupuncture about twice a week, and suffered from fever and exhaustion the other five days of the week. I was too tired for anything else then. I used to love being outdoors but I needed to spend more time in bed. After a few weeks, we decided to try another Acupuncturist to see if I had similar reactions, and I remember feeling exactly the same even with her. Through all the piercing and high fever, my pain stayed. I think I was given all the information about my body I didn’t really need at that time. None of it sounded as if it related to the pain I was experiencing. I was told I’ll be fine too.

After about three months of trying Chinese Herbal Medicines and Acupuncture sessions, I decided to discontinue both. Running a fever through out the week and feeling fatigued all the time was no where close to normal. It’s also not as if any of it was helping with the pain. Plus, it was almost five months into my twelve months long break from Design School, so I felt the need to keep looking for other solutions.

I was still very hopeful.

Some weird guy

I was told to see this person who supposedly used his “chi” energy to make things okay. My Mom and I went over to his place and were a bit shocked to see what he was doing. I don’t think I fully understood what was happening but what he did worked like the electrodes used in Physiotherapy. Except, the electric current was somehow generated by him (or something like that)……

Didn’t help. It was just weird, that’s all.

Rheumatologist

My Dad’s friend’s wife was diagnosed of Fibromyalgia around that time, so he started to worry that I might have the same. We looked through all that there was to look through about Fibromyalgia and thought it was time to meet a  Rheumatologist. He sent me for blood tests to see if I had any sort of Auto-immune disorders, and the tests were all negative. He did a physical examination, checked my mobility which he thought was a little more than others(but that didn’t seem like a reason to worry because I was a dancer?) and thought that I needed to get the knots in my neck checked by an ENT. When I talked about pain, he said, “But you look fine. Your weight is okay, your diet seems okay. The thing about you is that it’s not just your tender points that hurt. You say so many things hurt and that you’re tired. I understand that, but there really is not reason to feel tired. I don’t really think it’s anything – your blood tests are fine. You have a little bit of Vitamin D deficiency but I’ll give you tablets for that. You’re fine. You look fine. I think you are a minor case of Fibromyalgia. I’ve seen people with Fibromyalgia and they look a lot worse than you do! I think you also have Chronic Fatigue Syndrome.”

So I didn’t have any Auto-immune Disorders, my weight was okay, my knots were probably just an infection of some sort, I was tired because of CFS and maybe I was just a minor case of Fibromyalgia because I looked fine.

Ear Nose and Throat Specialist

We got the knots checked the next day. The ENT Specialist didn’t think it was any kind of infection. He said they were probably just my lymph nodes swelling up, but that can happen. I was told if they’re so painful, they’re probably not harmful and if I wanted to be sure, I needed to go for a Biopsy.

My parents and I decided that it wasn’t necessary. I don’t think I felt a pull towards getting that checked.

I just wanted my left arm to recover.

Yoga Therapist

So in December of 2011, eleven months after my shoulder operation, I was STILL in pain. It was annoying. I started seeing a Yoga Therapist who put me on a routine right away. I had a little Yoga Journal where I noted down my pain score, activities and my emotions. She looked into my diet and made slight changes. She thought I needed to eat more prunes…

Part 1:Tailbone Shift

So while I was still seeing this Yoga Therapist, STILL taking pain medications, STILL trying to smile through pain.. something else happened out of no where.

I was sitting on the floor in my living room, playing with my cat and just as I tried to get up, I experienced a sharp pain right at the tip of my tailbone and it shot right up into my brain. I am still surprised it didn’t cause my brain to explode. It was so sharp that I couldn’t move! It felt as if someone had pierced a big, long, needle right in my tailbone and it was stuck right there. I had tears running down my eyes and I felt faint-headed. I somehow walked myself to the sofa and didn’t move all day.

By evening, I was running a fever. I was feeling physically weak. My parents and the Yoga Therapist thought it was no big deal. That it was probably just a viral fever causing my joints to hurt and that I would be fine in a day or two. A week later, I still wasn’t okay. I was still in so much pain and I could barely walk around. The Yoga Therapist came over to check on me and she said,” We need to work on strengthening you arm for sure. But for now, let me teach you some exercises to relax your back. It will help with your pain in the tailbone, which I’m sure is only because you’re running a fever. You see, when you have fever, your body is basically inflamed and when there is so much inflammation in your body, of course there will be pain. So give it a while, my dear. It’ll be alright.”

I now see that it could have been the other way round!

I had started to feel that there was something terribly wrong. When I touched my spine, I would feel as if something had moved. For the first time, I felt some sort of fear.

Something told to not listen to the Yoga Therapist anymore…

So I convinced my parents to take me to a Spine Specialist. I had to go through another round of X-ray, which clearly showed that my tailbone had moved out of position. I was asked if I fell down or had any accident and when I said no, I was told this happens to people some people – some people who can be a bit more bendy than others and that there was nothing to worry.  I was told it could have been my dance, but honestly, it had been months since I did my last stage performance. So besides telling me that I was really beautiful and that she (the Spine Specialist) would love to marry me to one of her sons, she said I needed to do Physiotherapy and  take muscle relaxants and anti-inflammatory.

I was already taking pain medications and muscle relaxants and nothing was helping! I was in excruciating amount of pain.

Once again, I started seeing a Physiotherapist for my tailbone. This lady told me that I would be fine within three week of seeing her and that didn’t happen. I saw her for six weeks and I was still in pain, still unable to walk, still surviving on pain medication and still as confused about what was happening to my body. This was my second joint that had moved out of position without any accident or physical trauma.

It made no sense at all.

Part 1: The Story Of My Diagnosis

August 2009 – January 2011

Introduction To Pain

It all began in 2009 when I first dislocated my left shoulder.

I didn’t even know it was possible to dislocate a joint! I just noticed one day that I could “pop” my left shoulder in and out of its socket, without any sort of pain . It was just something Manasi could do. My friend used to freak out seeing me do that. Things were perfectly normal – I was studying Design, dancing and performing, and having a pretty normal life of a 19 -year- old.

One day I was at Design School, happily working on a clay model of my face. I still remember that day so well – my friends and I were laughing about how I would mould out my curly hair using clay and just then, (I can’t put this in any other words because this is exactly what happened) my left arm dropped on my working desk and I felt acute pain shooting down my arm from my left shoulder joint. I had NO freaking clue what had happened and I almost stopped feeling my left arm after. It turned completely numb and I felt as if I was carrying dead weight. I pulled out my scarf and made it into a sling type of a thing to hold up my left arm. I  just left class right away and went over to see my family Doctor.

My family Doctor thought it was just some sort of a muscle pull so she gave me muscle relaxants and told me that I only needed rest. Since I was in Design School, it was very common for Doctors to think that I was only straining my muscles. Just as I was about to leave, I showed her how I could “pop” my shoulder in and out. That moment when I did, the pain was so terrible that I almost had tears in my eyes. She saw that and knew something was wrong. I think that was the point where my life took a major turn and I was in the hospital the very next day, running for X-rays and MRI.

The MRI showed major subluxation in my left shoulder joint. It was a strange kind of dislocation they said – because till before that day, I was able to “pop” it in and out without any pain.  What was totally weird was that it happened without any accident or physical trauma as such. It just slipped out of its socket. They somehow didn’t think that I needed a surgery and I was told to go for Physiotherapy to strengthen my shoulder joint. And, I was also told to not overuse my arm at Design School and make sure I didn’t use it too much in my dance.

So I started going for Physiotherapy and  with each session, the pain just got worse. The Physiotherapist would tell me I was getting better, and that I should continue to do the rubber band exercises and use my left arm to push against a wall (all the strengthening exercises basically). I didn’t believe her because I could see that I wasn’t getting better. I hated having to go to Physiotherapy when after each sessions instead of feeling any relief, my pain just increased. With that level of pain, I needed muscle relaxants and pain medications in order to complete my projects at school. I started needing my family to help me with my projects, I needed help to carry my Design tools etc, and it didn’t feel good- till that time, I was  be able to do everything myself.  I loved doing everything myself. My family could see that I was in pain, but I don’t think they could imagine the severity of it.

Chiropractor

One day while I was busy tying up my arm, a lecturer came up to me to have a small chat. She said she had been observing me for a while and could really see that I was in pain, and that she knew a Chiropractor (never knew what that was!), who I should really see. Because Physiotherapy was doing nothing but adding to my pain, and  because my work was getting a little affected, I was ready to try anything that would take the pain away. By then I was taking about four muscle relaxants a day! So I went to this Chiropractor with a lot of hope. We all know what Chiropractors do – all the cracking, and manipulation of joints and moving things around – yes, all of that was done on me. I was told that I would need about three sessions per week of whatever he was doing so that I get better. I believed it and went through all of it, because I just wanted it  to be fixed. I saw this  Chiropractor for close to a year, going for three sessions per week. I would come back home feeling ready to work on my Design projects and within an hour of so, my shoulder would feel loose and painful again. I was still taking my medications because I couldn’t see a way out  – if I wanted to get through the work I genuinely enjoyed doing, I had to take my tablets. If I wanted to function like a 19-year-old, I needed to take the pills. Not that they took the pain away or helped push my joint back in.

By then, my life was starting to turn a little bit abnormal. Just a little bit, in comparison to the unbelievable change it went through over the years since then. I was starting to feel tired more easily, I couldn’t dance as freely and things slowly started to seem different. My parents and I were still under an impression that this was just a one-off thing and that I would be okay soon.

Part 1 :Left Shoulder Surgery

I was on a family holiday at Ramthambore (a place in India well known for tiger spotting) in December 2010. I was so excited to be able to see wild cats around me!But even through that excitement, I couldn’t distract myself from the throbbing pain that I was feeling. We were out in a jeep one day when my left arm fell right off the socket again! I had my scarf, so I tied my arm up again. I remember crying that day. I don’t think I had cried in pain before that. I used to write about it, but I never cried. No matter how painful things were, I could deal with it. But that day, no. That was the time I felt that things were getting a little bit unfair — not being able to enjoy wildlife was extremely unfair. Not being able to easily complete my Design projects like before was unfair. Not being able to use my left arm in dance was unfair.

We really didn’t think that the jerks from going on a safari jeep could hurt me so badly.  But it did. It totally rattled my shoulder joint out of position. I didn’t need to be hospitalized, but my shoulder was sort of hanging off my body.

So as soon as we got back to Singapore, I went over to see the Chiropractor. When he heard my story, he said, ” Yes, that can happen. I told you, you have to come to see me every other day. Your condition needs servicing. Your shoulder needs maintenance. You have to continue to see me regularly.” That’s when I asked him a question, which I should have asked long back – WILL IT EVER GO BACK INTO POSITION AND STOP HURTING ME SO MUCH? He said he didn’t know.

That was it. If someone told me I needed to see that him thrice a week without any sort of a guarantee that I’ll be okay, then I didn’t need to see that person anymore.

I  didn’t know what was going on.

So the very next day, my parents and I went to see another Shoulder Specialist. We had already gotten a second opinion, so this was for a third opinion. I really needed to know what was happening to me. I didn’t want the pain anymore.

I was still thinking that this would be a one-off thing.

When I saw this Specialist, things started to make some sense. He explained to me how multi-directional shoulder instability can cause it to “pop” out etc.  and gave me two options – either I continue doing the rubber band exercises and wait for my shoulder to strengthen up some day (not sure when) or I go for a surgery which would practically tie the joint up internally. He let me make the choice, but I clearly remember the look on his face that said I needed a surgery. I remember him telling us that my shoulder had become really loose.

I had also started developing some knots around my neck around the same time. My neck felt bumpy and the knots used to cause a lot of pain and discomfort. At times they would swell up and that’s when I literally couldn’t do anything. It felt like I was in a neck brace, a bumpy neck brace .The Specialist had no clue what this was but he didn’t think it was harmful. He was quite sure that would be okay after the surgery.

My parents suggested that I give yet another shot to the rubber band exercises before I opt for open surgery. My pain was unbearable, but I decided to give my body one last chance before going under the knife.