Name your Pain

It’s been more than 7 years that I have been living with a chronic pain in my legs, which slowly moved to my wrists and eventually... in my head, they say. 

If you spend half an hour with me you will see me stretching my legs, pressing my calves or flicking my wrist, unusually.

In one of the conversations with my Dad, who has a similar problem, I learned that even his grandmother had the same issue. So obviously this was something hereditary that was being passed on like a curse to our family.

My visits to the doctors started with an Ortho who doubted it to be Gout, but the uric acid levels were only slightly high which didn't justify the immense pain I was experiencing. Nevertheless I took the medication and followed the diet religiously for a month.
At the end of which I didn't experience any relief. 

Taking me to the second doctor.

A neurologist who accused me of being hyperactive, and did some tests which involved small electric shocks in my hands. Reports came (shockingly) normal.

Some doctors conveniently blamed bad posture and the long hours spent on the computer, assuming that every young male is a software engineer.

A prominent Rheumatologist, in a even more prominent hospital, suspected Rheumatoid Arthritis. Negative.

I also went to a doctor whose clientele included some of the top cricketers, and actors of India. “Fibromyalgia” he said, without blinking. So convincing was his explanation that I was left in complete awe of him. “No wonder all these top guys go to him”, I thought. He recommended a physiotherapy session at a high end clinic. Upbeat with the path forward and optimistic in my approach I spoke to the physio who was going to conduct my sessions.

“Fibromyalgia is a name we doctors give to a problem we don’t understand!” said the physio coldly. So cold that it poured water over all my expectations (You know the Hindi saying)

I read a report about Blackberry Thumb, caused by excessive usage of your smart phone, and did a week of daily sessions of expensive ultrasound radiation therapy. Turns out my smart decision was quiet dumb.

I then happened to meet a doctor who was a pain specialist. She asked me a question that shocked me out of my wits. “Have you ever been involved in a car accident?”

Many years back. One of the wild partying nights, I had crashed a friend’s car into a concrete divider. (No, I can’t call the friend- a friend anymore, or the car- a car). So bad was the bang that when the car was towed, it looked like a steel cupboard being dragged, because all the wheels had either rolled away or were crushed in the bang. Surprisingly and miraculously I was unhurt and walked away from the whole incident.  But that’s a whole new story all together.

This particular pain specialist doctor told me that the impact of the crash may have left a sprain in my neck because of which the pain radiated to my hands and legs. So great, I now had a spondylosis of the neck also.

Anyway, this was the most convincing diagnosis from all the doctors I had met. The case was wide open now. I was thrilled to know that with a few injections in my legs and neck I would be cured of this pain. I took almost 10 injections all over. Painful 10 injections, all because I was promised that the relief was going to be worth this ordeal.

And it worked. Worked like magic.

The pain was no more...for about 2 days...until the anesthesia wore off.

She had given me a mild local anesthesia!!!!!!!!!!

In a matter of a year I had visited over 15 doctors who diagnosed me for everything under the sun, including a cancer. 

This is not including the amount of doctors I was to visit on recommendations from friends and family.

In between all this, was Mr. Know it all, the Google search. 

I googled the symptoms, and obviously thought I was going to die because that was most internet searches about your health problems make you feel is going to happen. 

I almost wrote my will (on a bus ticket, I didn't have much to leave behind). 

I was surprised to find hundreds of people who were suffering from pain that was undiagnosed and were frantically finding some clue about it.

One such search landed me on a blogger's page that talked about a relatively unknown disease called, Restless Leg Syndrome, which caused an urge to keep moving your legs, especially at night.

That’s it, I said. 

Restless leg syndrome. 

Hereditary. Chronic. Intensifies at night. Yes. Yes. Yes! All boxes checked.

So I went, proud with my search, print outs, possible treatments, drug information and proof documents to a very well known, well read, Ortho, and gave him a version of my diagnosis. In my mind I was excited to see how he would react to my expertise.

“Restless leg syndrome?” he laughed. “I haven’t heard of such a thing in 30 years of practice".

I was shocked. To my dismay this wasn't even a valid medical disease, and according to him a figment of someone’s imagination.

I was ready to accept his point of view, but all I wanted was a name to this disease that was slowing draining me of my energy and life.

Over time I accepted that maybe the doctors were right.

This thing was in my head.

Finally my last visit was to a psychiatrist, who conveniently put me on an antidepressant and something for anxiety. I happily took them because that was the only way left. Block the thought that says- It’s paining.

So cutting the long long story short. I went through allopathy, homeopathy, ayurveda, yoga, reiki, physiotherapy, radiotherapy and every bloody ‘apy’ that exists, but my pain was right there. 
In the bargain my wife has almost become an expert in foot massage therapy!

I was suffering from a nameless, faceless, and unknown disease and all I wanted was someone to give it a name.

But no one could.

No one?

Was it so unique that it was yet to be discovered?

Did you know, some diseases are named for the scientists or doctors who had a hand in discovering them. Others got their names from a famous person who suffered from the disease.

Some gyan..

Alzheimer’s was first presented at a lecture by German psychiatrist and neuropathologist Dr. Alois Alzheimer.

Sir Joseph Lister is remembered for the bacterial infection named after him, Listeriosis. Listerine mouthwash was also named after him!

Amyotrophic lateral sclerosis (ALS) is commonly known as "Lou Gehrig's disease," named after the famous baseball player who was forced to retire after developing the disease.

Yes, the same ALS for which the who’s who and the who are you attempted the Ice Bucket Challenge.

Maybe, this was an opportunity for me to go down in history and have a disease or condition named after me – Aleem’s Disease or maybe The Merchant’s Syndrome.

So I thought, why did I want a name for my pain? 

Because I wanted to deal with it. I wanted to fight it. I wanted to know it’s game, how it works and how it functions, because I wanted to kill, shoo it away, get rid of it.

Because I hate it.

And then it struck me. I know someone who could give my pain a name.

Me!

So I named it.

I named it - The Lizard.

It didn't sound as glorious as the name I thought it was going to have, but I don’t fathom a disease named after me anyway.

A road, or a landmark, after me- maybe, but not a disease for sure.

So Lizard is not a medical name. It’s just the reptile I detest. I find it eerie that you can kill it but its tail still kind of stays alive. The way it walks silently on a wall and kills its prey. The thought of a lizard in a room gives me the creeps. Call me sissy if you want. But I just shudder at the sight of one.

Getting rid of a lizard, on my own, would be my biggest achievement because I can’t stand the thought of being in the same room as one.  

Yes, there have been occasions where I had to.

Once, when it was in my office and I gathered the courage to send it down the toilet flush. But to most that was a comic scene (including for my then to-be wife- Swetal) who was present and the incident (or joke) is still discussed at some parties on how I leaped when I got a feeling that it had climbed up my trousers.

The second time was when Samaira was about 3 months and in her crib sleeping, when a lizard walked dangerously close to her bed. My newly protective fatherly instincts, released a surge of adrenaline and I managed to shoo it out of the room.

So there it was, A Lizard.

The name of the pain that crept to my legs and hands every now and then, and all I had to do was brave up and shoo it away. Which I do. Everyday. Every time. All the time.

The pain has not gone. You will still see me stretching my legs, pressing my calves or flicking my wrist. But what I have managed to do is defeat the monster in my own way.

It still lives with me, in the same room. But I can see it, recognize it and choose to ignore it and sometimes kill it, even though a bit of it's tail still freaks me out.

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Pain - the most common word used by patients to doctors.

I hope and pray that this word that doctors hear every day from every patient is taken seriously every time. Because only that patient who suffers from that pain knows the strife that is caused by their monster, their reptile, their enemy, their battle.

I wait for the day that every person has the medical name for their disease or condition.

Till then, we can only call it names.

Telling a patient what the exact, and correct cause of their pain is definitely a major step towards control or cure. 

But if your story is similar to mine try this out-of-the-box method to overcome your pain, and do let me know what you call yours.

This is not my sob story. 

If I can change the way even one person can overcome their pain, this article is completely worth it. So please share it with anyone you know who is dealing with a pain, condition or health problem.

As for me, I’m on my way for my next 21km marathon and I'll make sure I defeat the Lizard and get my Finishers medal too.