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.

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