On Tuesday, I was at the hospital from 9:30 am all the way till about 5:00pm to get a couple of tests done – MRI Enterography and Neck Ultrasound. I was given 45 minutes to down 3 bottles of 450ml each of barium sulphate, a slippery, kind of oily, thick but sort of translucent, dull white liquid. I thought I was doing pretty fine until after about 1.5 bottles, after which, each sip only got harder to swallow. I managed alright, I think. I’ve had worse tasting medicines before. It did seem like I was high on barium sulphate for sometime though.
The standard procedure for MRI Enterography involves also having a contrast liquid running in your system. It highlights abnormalities and inflammation much clearly and hence is highly recommended. This time round too, like once back in the past, my experience with having a contrast running in me wasn’t exactly pleasant. They struggled to find my veins, thought my veins were too thin, and practically fought to properly insert the needle. After about three failed attempts on my left hand, they tried the same on my right and finally managed to get the contrast going.
If I were to sum up my experience at the Radiology Department yesterday, I would say it was a total adventure, with prolonged waiting time and misleading information from every person we spoke to. They first got the timing all mixed up and expected us to reach earleir. Then a person told me I might get a diarrhoea after barium sulphate, another said nope, not at all. Another person said constrast was required and someone else said it depends on us. And, my reports, which were supposed to be ready within an hour took almost two hours to be ready instead. Total mess.
After a point, everything got really annoying and I couldn’t wait to get home. Exhaustion and pain simply got worse over the 7.5 hours of being out. I had to collect my daily medicines from another hospital nearby too. Thankfully, dad was around with me through the day.
So, it turns out that my MRI Enterography was normal, no abnormalities in my major organs – so that’s something to celebrate! However, the key question remains – if everything is normal, why am I experiencing all these abnormal sysmtoms?
Usual answer – we don’t know yet and we must take it one step at a time. I’d be lying if I said it doesn’t get frustrating; you kind of want to know what it is but you also don’t want it to be too serious. It’s then when you realise that you don’t have much of a control, so, you take it one step at a time. One day at a time. One test/scan at a time.
To be continued…
On days you absolutely can’t do anything about your experience and your plans don’t count for anyone’s sake. Most days are bad enough (you learn to manage) but days like today are worse.
In my previous post, I described pain associated with EDS/HMS to be either constant or increasing. It is never really zero, nor does it decrease as such. Well, at least that hasn’t happened in the last six years.
You learn to get through days when the pain is fairly constant, but on other days, you just have to stop and be okay with doing nothing but simply breathing through it.
Not that it helps with pain, but dark chocolate gives me a temporary burst of happiness which is so worth it on days like today. And at times, it surely helps to have friends who are so willing to just drop by to spend time with you while (and even though) you’re in pain.
Just a couple of days back I went to see the same Pain Specialist who had diagnosed me with HMS about three years back. Since then till now, I never really felt a need to see him because I was thought I was equipped with all the tools I needed in order to manage my pain. There was really nothing much he could’ve done then, except to put me on more pain medication. I have had enough pills from the other Specialists who help me with managing different joints in my body and most of them are convinced that there is nothing much that can be done – this is a condition that requires lifestyle change, lots of personal care and pain management, along with visits to hospitals when something shifts way off or something.
The main reason to go back to this guy was really to see if I was on the right track, and if he had any other bits information that may be useful to me right now. I remember very well what a a terrible state of mind I was in at the time of the diagnosis, so I thought I’d be more receptive to new information now.
After giving him a quick update of how I spent the last (365 X 3)days getting to know my body and involuntarily hurting other joints , he did a quick check-up of all my joints and trigger points and asked me more questions about how my life has been. It’s more so at a Pain Specialist or at a Complementary and Alternative Medicine therapist that you’d have to answer questions about life etc. Most of the other Specialists, although very caring and supportive in general, tend to end with questions about your work or school. Nothing beyond. And sometimes not even that.
I think I was able to speak about my health more confidently, so that’s a good sign already. I had done enough homework till now to fully understand my condition so I’d say it was both good and bad that he had no new information for me. What I got out of the appointment though, which we all need sometimes, was validation. All his suggestions were things I was either already doing or trying to work towards.
He introduced another way of looking at pain management – he said there are three angles to this – Biological, Psychological and Social. Biologically, when you are dealing with an illness like HMS, you can provide your body with right medication and supplements in order for the pain and discomfort to become slightly more bearable or manageable. Psychologically, one would need to figure out ways to manage or entirely kick-out unnecessary stress inducing factors, work through difficult emotions and find ways to relax, stay present and positive, while working towards a sustainable future. Socially, one must be surrounded with loving, caring and supportive people who make an effort to understand the pain, or at least are a little sensitive towards it.
That was a good way of looking at things! A simplified version of what constitutes health for most of us! But of utmost importance for those dealing with a chronic illness.
He explained that with illnesses like such, when we know we can’t do much about it at the moment and that there’s nothing out there to cure of fix it, all we can really do is come to terms with it, and finally start building a lifestyle that works for us. What I understood out of all that was that we need to build a lifestyle that we can keep up with. A lifestyle which works for both our body and mind. And one that basically keeps us moving forward, no matter how hazy the future looks. And no doubt ….. this can take time. It can take time to first, come to terms with limitations. Second, to then figure out possibilities. And third, to finally pick something that you’re able to sustain, something you’re passionate about and something that makes you smile, even through the limitations of a rare illness.
There’s lots to figure out and of course it can feel daunting. It’s hard to stop thinking about how it’s all going to turn out, especially when you feel a little helpless right in the present. If I start to feel helpless, I have to quickly remind myself that I am, with all honesty and with all that I’ve got right now, trying to help myself. And that’s not called being helpless. Helping your body feel better requires a lot of time, patience, care and love. I know it takes time for our body to respond and it gets tiring to wait. It tires me out sometimes too. But the story continues… and we must as well.
Towards the end of my appointment, the Pain Specialist said, “I think you’re doing your best. You are working on strengthening your muscles, which can take time. You are following your Ayurvedic routine and trying to eat healthy. You are making major changes to your lifestyle and taking steps towards figuring things out given your current limitations….I’m not sure what else to possibly tell you to do at this very point. You know what, continue doing what you’re doing and if you need more help with managing your pain or if you ever decide you need more medication, let me know.”
I was determined to not take any medication from him. Nope. I have been on pills for the past five years, have tried several types of pills, with varying combinations and I honestly don’t think I want more of that. What I take right now is working for me and I’ll let it do it’s job of supporting me while I do my part of working on other factors which could help my body feel better.
So on the way out of his clinic, I concluded that I didn’t need to see him anymore. And that whatever I’ve been trying to do over the past year or so is what I must continue doing.
I wrote in my personal story for Global Genes sometime early March. I just received an email saying that it has finally been published! I understand it can sound a little bit repetitive for those who’ve really followed through the story of my diagnosis. In that case, here’s a summary of it anyway. Hahaha.
December 2013 – June 2014
Left Knee Subluxation and Degeneration
On Christmas of 2013, I woke up with a sharp pain deep inside my left knee cap. I was familiar with this kind of a pain by then and I knew it was HMS affecting yet another joint in my body. I couldn’t walk anymore.
It’s really not as if I used to walk a lot, but at least I didn’t feel handicapped. With my left knee kicking in…
My life took another insane turn.
I got in touch with some Doctors and Specialists from the UK who have been carrying out a research on HMS/EDS Type 3 for a while now. The main thing I got from them was that there was still no cure. I was told to make lifestyle changes that work for my body, continue with pain management therapies and keep doing my best.
X-rays and MRI of my left knee showed signs of Arthritis (along with painful cysts and inflammation). My left knee joint was degenerating at the age of 24. My kneecap was so unstable that the Knee Specialist said one could just “pop” it out of place easily.
He suggested that I try Hyaluronate injection (http://www.medicinenet.com/hyaluronate-injection/article.htm) for my knee joint but he clearly told me that considering I have HMS, and the fact that even other pain management procedures hadn’t really worked on me, there was a possibility that this wouldn’t either. I gave it a shot anyway because there was nothing to lose – if it worked, I’d be able to walk.
It didn’t work. This time round, I didn’t feel all that bad. I think I was beginning to come to terms with reality. I was starting to understand HMS/EDS better.
Since that day on, I’ve needed a knee guard and rock tape as extra support.
Right Knee Subluxation and Degeneration
While looking at my scans, my Knee Specialist commented,” You know, I don’t mean to say this to hurt you. It’s just so that you get an idea….I’m really sorry, but if I were to put all your scans together and look at them, they’d look like those of an 84-year- old.. not a young, beautiful 24-year-old. We can see it. This is all because of HMS.”
I was able to handle things a bit better.
I just smiled and said, “Yes, I know. It’s okay.”
Left Elbow Instability
I have always needed to see my Specialists and go for a round of scans and tests, but it’s not as if I ever came home with any kind of new information or advice.
It’s been the same thing – whatever happened to my joints, happened because of HMS/EDS. Not because I overused them, or worked out a lot, or danced too much, or got into an accident,or didn’t eat enough, or didn’t rest enough or pretty much anything else most people like to think.
I am more accepting of my body’s tendencies. I don’t remember the last time I didn’t feel pain, but I am learning to suffer less. I’m learning to make adjustments in my life so that my body gets what it needs. I am more accepting of the fact that there is no cure at the moment, but I am still hopeful about the future. Accepting my condition seems to be helping me more than trying to fight with my body too much. I don’t mean to say that I give up and let life take over me – there is a difference between acceptance and defeat. I might want to write about it sometime.
Over the past five years or so, I have spent so much time and effort just running around, figuring out solutions, finding alternatives, speaking to gazillion Healthcare Professionals, getting mad at my body and trying to hold my life together. It was all required at that time. These days I try to listen to my body first.
Listening to my body means making considerable changes to my lifestyle. And that also means slowly letting go of some things which don’t work for me anymore. It’s frightening at times, but it’s okay because at the end of the day…it’s all for my health.
I’m getting a hang of it.
Since HMS is a multi-systemic disorder, I have to manage other symptoms of HMS as well. It can get tiring having to think about so many factors at once. I’ve also learned to trust only myself about my body and no one else. Somewhere deep inside, I always knew I needed to keep pushing through…. to keep looking… because things happening to me just didn’t feel normal… and to keep persevering through all the misdiagnosis and judgement… that’s how I finally got some answers.
I have a small team of Specialists (different ones for different parts) and Healthcare Professionals
helping me manage my condition and pain. It took me a very long time to finally find a group of people who understand my condition, are patient and supportive and who trust me. I call them my little “Support Team”.
I think it’s necessary to find Healthcare Professionals who believe you when you say that you’re in a lot of pain or can’t deal with something. It makes no sense to be working with a set of people who think you could be imagining pain. Also, no matter what anyone thinks, it’s especially important to believe in yourself when it comes to the pain you’re going through and how it affects you – just because someone thinks that you are giving up easily doesn’t quite mean that you are.
I’ve never given up too easily and it’s enough that I know so. I feel weak at times (it’s only natural) but I stand right up again (very slowly sometimes!) and face what I need to. Knowing this, I try not to take it personally if someone makes baseless comments about my personality or attitude because of the pain I’m going through. It can hurt for sure, but I also realize that I don’t have it in me to explain myself and my story to everyone. Besides, I don’t believe that everyone needs to relate to it or understand it.
You need a small set of people who trust that you know the best for your body – that’s all.
For now, I work with my body and try not to push it beyond its limit. I still don’t know where exactly this is heading. I don’t have answers for tomorrow. I understand that until there is no cure, until science doesn’t catch up, the only way I am going to be able to get through life is by respecting my body’s present needs.
I know better now, for sure.
After Diagnosis : January 2013 – December 2013
Part 5 and 6 : How other joints in my body continued being affected + Current Situation
Things went beyond control. Pain was beyond control. I started reacting to my pain medications because the dose was just too high. By then it had been three and a half years since I first started needing medicines. I was vomiting and losing strength day by day. I started developing severe migraine along with all that; it was the type that just didn’t stop no matter what. I couldn’t fall sleep because I was hearing a buzzing sound at the back of my head. Even a stronger dose of migraine pills didn’t quite help. It was getting freakishly scary and I needed to be hospitalized.
I started seeing a Neurologist then, who changed my prescriptions once again. I needed sleeping pills to fall asleep because the pain in my lower back, tailbone and left arm wouldn’t let me sleep otherwise. He cut down on the painkillers, which made it very difficult for me to function through the day.
I turned into a zombie. Or something worse than that..
Because I needed help with pain management, I decided to see an Osteopath. I was scared of Chiropractors by then but I was okay with seeing if an Osteopathy could help. When I felt that he was also doing some form of manipulation too, I started to feel a little uneasy. I was told to stay away from these things now.
During one of my sessions with him, he did something to my left arm that was enough to make me never go back to him again. However, he was the one who introduced me to Pilates and told me that it was one thing I required for sure. The Pain Management Specialist had talked about it too, but I wasn’t in the best frame of mind to understand it any better that time.
I started going for Pilates then, but I could hardly keep up with the sessions with that much pain.
I had no clue what to expect when….and when to expect what.
Right Shoulder Subluxation
In July 2013, my right shoulder went out of position. Without any physical trauma or accident. I was still in Business School, so with an unstable right shoulder, things started getting complicated. School was taking away my energy and yet I wanted to continue. I saw my Shoulder Specialist, went through another around of X-Rays and MRI, but there was no new information. We knew there was nothing anyone could do about it. I had to continue Physiotherapy, rest a lot and wait for it to strengthen up one day.
Even though I knew the reason behind why things were happening to me, it wasn’t so easy to just wait till some day to feel less pain.
Right Wrist Subluxation
In October 2013, my right wrist was affected. I still remember how the Specialist just shook it around a bit and pushed it back in. It didn’t stay in place anyway. He reminded me that I need to get used to this. So since then, my wrist has been dangling off my right arm, which is hanging off my body.
I also had to go for a neck MRI to make sure my neck was okay. It was okay, just not very normal. A bit more wobbly and loose compared to everyone else. The Specialist asked me if I was standing during my MRI because that’s how weird it looked in the scans.
The Diagnosis: October 2012
Part 1: Pain Management Specialist
The Pain Management Specialist sent me for another round of blood tests. These too, were absolutely normal. He looked through all my reports and scans and suggested that I try out Radio Frequency Ablation (RFA), which is a minimally invasive procedure. I had HUGE HUGE H U G E expectations out of this procedure. I really thought I’d be okay after that. I was looking forward to be able to live like a 22-year-old again! I was DYING to be pain free.
So in October 2012, I went in for Radio Frequency Ablation (http://www.webmd.com/pain-management/radiofrequency-ablation) for seven facet joints and my tailbone. I was sedated and had nine gigantic needles pierced into my joints. Before being sedated, I thought about a few people I loved and I genuinely couldn’t wait to be normal again!
I finally opened my eyes about three hours later, only to notice that my pain had gotten worse. The Pain Specialist told me that this was normal, that it will settle soon, and I should just give it about a week or two to really work. I couldn’t walk properly after the procedure. But I trusted what he said and gave myself time. I was taking about eight painkillers a day, plus three anti-inflammatory tablets and six nerve medications. That was the only way I could survive the increased pain.
That evening, I started running a fever and developed gastroenteritis out of nowhere. That week I only got weaker. I was so physically and emotionally drained out.
Two weeks later, I was still in pain. There was NO difference at all. Nothing seemed to have changed. I needed the same amount of medication, I couldn’t walk too well, I needed a donut cushion, I couldn’t sit, I couldn’t lay down comfortably…
I hadn’t expected this.
Part 2 : Pain Management Specialist
When I returned to the Pain Specialist, he saw my state and said he wanted to speak to me in private, without my parents around. So the next day, I went back to him for a private consultation. For the first time, I was allowed to speak without being judged. Not once did he say that I was imagining pain or had low pain threshold. We spoke for about two and a half hours, and I cried so much. I told him I had forgotten what it felt like to be pain free. He asked questions about my family, friends, boyfriend, dance, design, dreams… things that no other Doctor had ever asked me till that day.
There was really nothing to hide from him, so I literally poured my heart out to him.
He told me to return the next day (with my parents) with ALL my medical scans and reports since birth. He looked through all of it in detail, checked on my family’s medical history, did a careful physical examination (Beighton Test investigation)and found that I was extremely hypermobile (not just a little hypermobile or a little bendy like other Doctors would say, but EXTREMELY hypermobile) . He asked about my migraine attacks, brain fogs, pain level and fatigue, IBS(Irritable Bowel Syndrome) diagnosis during my teenage years, about my sleep cycle…. and dug out every single detail that there was about my body from me. He had a never-ending list of questions! For once in three years, I felt as if a Doctor bothered about my pain.
It took him a while to put all the information together. I remember getting anxious looking at him. It was some 18-19 years worth of information that he needed to string together in order to finally tell me what it was.
I don’t think I can ever forget that day. He sat next to me, held my hand and said, “I know what this is. HMS. Hypermobility Syndrome. EDS Type 3. Let me explain…”
I remember exchanging a totally confused look with my parents at that point.
As he explained the condition in detail , it felt like everything was suddenly falling into place. After YEARS of our effort trying to figure out what was wrong with me….. everything started making sense. It seems I had been showing symptoms of HMS since I was a child and we didn’t even know! We didn’t even know such a thing existed until that very day!
(I’d like to write a separate post about the symptoms and all other bits and pieces of information that needed to be put together in order to reach a conclusion.)
For once, I found a closure. It was SUCH a relief! But then at the same time, I stepped into a world of total uncertainty. I couldn’t quite imagine how things were going to turn out from then on. I can’t explain in words the kind of contrasting emotions I experienced at that moment.
We FINALLY knew what it was. But we also knew it had no cure. No fix.
*Part 5 and 6 : How other joints in my body continued being affected + Current Situation
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.
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.
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.
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.
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.