Part 4: The Story Of My Diagnosis

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. TheIMG_6958 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

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