#LetsTalkPain: Our Editor’s Tryst With Fibromyalgia
Lady Gaga and I have something in common, a not-so-pleasant condition called fibromyalgia.
Any stray sprinkling of stardust that comes my way, I supplicate and do a "Bhar do jholi meri" with prompt and filmi effect. In this case, the stardust came with a sting. Of pain.
Lady Gaga suffers from fibromyalgia. So do I.
Lady Gaga wants to create awareness about it. So do I.
Lady Gaga revealed her illness on twitter. But I am too shy.
Too caught up to read? Listen to the story:
As I lay curled up with a hot water bag, fragrant with generous blobs of Volini in September 2017, I read that Lady G cancelled the European leg of her world tour because of Fibromyalgia. And SuperFibroWoman (me) decided that I too must rise ‘n’ apprise India of Fibro.
What is this Fibromyalgia?
It's a tongue-twister and seems to mean nothing. Just one more rancid "myalgia", sitting bored in a forgotten page of medicalese. It is elusive since there is no test that can diagnose it.
But Lady Gaga, and I, feel it. Feel the pain rising and falling with every achy contour of the letters: F-I-B-R-O-M-Y-A-L-G-I-A. And it is not just the pain, the burn and the numbness, but the helplessness of it all. And here is where I’m one up on Lady Gaga. (Ha! Finally!)
Because I am in India where people, including most doctors, haven't heard of Fibro-What. Cardiac, Diabetes, Arthritis, Cancer, Fertility, Babies, Dengue, Encephalitis, Pregnancy, Diarrhoea, Piles, Babies, Slip discs, Erectile Dysfunction, Nose Polyps, Babies ...Where do Indian docs have the time for Fibro-watchamacallit?
If you're still interested (most docs were NOT) I'll tell you all about me and my chronic companion – Fibro-Fevicol.
It started amid drunken stupor in Goa. Distorted through the view of my tall Pina Colada glass was a floating image of Babban Mian asking me if I wanted a beach massage. I said yes, okay, as long as I don't have to move a muscle. But the first muscle he touched made me wince, and I couldn't say, "Babban Mian, Bas karo" because my brain and body were screaming in unison.
Dismissing it as just one of those things (abhi to main jawaan hoon), I got back to Delhi. The Pina Colada was replaced with deadlines and to-dos. The pain continued to nag and I continued to Ctrl-Alt-Del all sensation of it. Till I couldn't.
A friend couldn't withstand me wincing and twisting in my work chair and insisted I go and see her cousin, a sports therapist. She examined me and told me that she hadn't seen such crazily tight and hard muscles in any one (and she deals with athletes).
I was about to blush a ‘thank you’ when she said, 'Have you ever got treated for this. Have you seen a doc?’ I told her that I wasn't the “doctor” type. I had been doing yoga for 15 years and I laugh in the face of pain.
The sessions began. She would gently try and open the knots and dry-needle them (insert hair-thin needles into my muscle knots). It felt like my knots were in the fourth stage of labour pain - all together - but none could deliver relief.
More sessions, more ninja Hakka needles, much, much more pain and a rather anxious therapist.
Even though I insisted that the pain was only on the right side of my neck, she repeatedly told me that the left side of neck, shoulders and upper back looked rather bad. She didn’t know it but she was a seer.
One frantic morning I called her to say that I could no longer turn my neck nor type “ouch” or any other word. I was told to get an MRI. See a doc.
Necking Aur Pooch Pooch
As I was eerily pulled into the MRI machine, I was transported back to Star Trek and wondered whether my crush on Spock was logical. They beamed me up to tell me about a protruding disc impinging on a nerve.
But if I was to pull in ten random people from the street, and get their MRIs done, 7 of them would have slides that look like this.
Meet Doctor One. An Orthopedic, who was speaking as he was staring into my rather sexy MRI report. I wondered if he was distracted by the shapely curves of my MRI neck. ‘But your symptoms are way out of whack, relative to your report. I could do a surgery to relieve the nerve but meds should do the job,’ and I was brushed aside.
To cut a long painful story short. He gave me meds. Meds gave me loosies. He changed the meds. The pain changed its mind. It yawned and spread to the left side.
3 months later I met Doctor 2 (let’s call him Second Opinion) who said, “Your neck is fine. Your problem is Supraspinitis Tendonitis”. I said, “Yeah, same to you”. No, actually I didn't. I just tried Second Opinion’s meds and made the loo my home again.
Pain is my Destiny, Doctor! (Once said Amitabh Bachchan)
Six months later...
By now I was two-timing several physiotherapists (if there was a Tinder for Physios I would have been a manic right-swiper). I was living with a constant dull headache and my arms had lost all strength or so it felt. Typing one sentence would be among the biggest achievements for a day, some of my fingers had gone numb, my arms and shoulders were burning and I was getting very weepy. Also, my head was turning very foggy.
I had marched out all these symptoms before doctors 3,4 and 7 (too foggy to count it right). And I could read their prognosis between their pain killer prescriptions.
‘Give her a placebo. It’s all in her head’.
Multiple tests has shown up NOTHING. There was nothing wrong with me and there was nothing right with me. HYPOCHONDRIA was reaching out to me with open arms. And I was slipping into mild depression. My life had changed. I was now shopping for high-end hot water bags, designer pain patches and expensive firangi therapists (one among them rather handsome).
Not one doctor had uttered the word “Fibromyalgia”, yet.
Marinate, Then Tenderise
Advice and tips came free and fast. One of them took me to a Kerala Ayurvedic doc. Who said ‘Aah, very hard muscles. All that computer work. 7 days massage. 20,000 rupees. You will be fine.’
So every morning I would drive 40 kms across the city to have four gossipy, bitchy masseurs strip me (like a skinned chicken), slap me down on a hard wooden bed, marinate me in hot oil for an hour and then four pairs of hands would tenderise me. My pain was getting worse with every passing slap-a-thon.
The Ayurvedic doc would say, ‘but see how your face is glowing’. (Oil = shine, hmpfff). She also gave me some Ayurvedic meds that made me very, very sick. After 7 days, Dr Ayurveda says, ‘Pay up for 28 days’. I scooted before she could say ‘Oil is well’.
The F-word: FIBROMYALGIA
By now though I had started doing that which is forbidden. Googling my symptoms. I came across a symptom questionnaire on the website of a Hyderabad-based homeopath. And that is when the term Fibromyalgia floated up for the first time. I hadn't heard it from an Ortho, Neurologist or a physio but from a homeopath. Online.
A doctor friend (I had many by now) told me that for Fibromyalgia I must visit a rheumatologist he recommended. The rheumatologist confirmed fibromyalgia since I had “hypermobility” of joints (that which I had called flexi sexy in my competitive yoga classes). He put me on antidepressants.
I was sleepy, swoony, constipated and in pain, now. As against just being in pain. I even fainted mid flight in the loo. Have you ever come around from a swoon mid air, sitting glamorously on a shit pot with a sexy para doc holding your hand and saying, ‘There is no pulse’. I swooned again.
I gave up on the anti depressants, because frankly they were making me rather depressed.
Ow Ow Ow Ow Ow…Ommm
“Ufff.. anti depressants are terrible for you.” This doc, who was no longer a regular doc but an acupuncturist healer in posh South Delhi, offered me a deal. I pay up Rs 60k in hard cash (oh those pre-demonetisation days) and she would prick needles in me in return. Sounded like a perfect deal to me through pain-tinted glasses.
She read my aura – it was lavender. And for the next 30 odd days I would sit for an hour with needles all over me. With noisy filmi bhajans nudging my battered soul towards spirituality. As always my pain began to get worse and I was often sobbing on the bed of needles (Lady Bhishma Pitamah at the battle of FibroKshetra).
After 60k was done (3k per session), I was done too. On my way out the fellow who would give me acupressure massages at this prickly clinic, said ‘Too much Agni in your stomach. Deal with it.’
Did he mean I was hot? Fibro-hot?
My-Sore Recipe. Starve
One year since Goa…
Another friend. Another advice. I was now on my way to Mysore to meet this highly eloquent healer. Only before I could reach him, the potholes in the Bengaluru-Mysore highway had done a shake-rattle-rock-n-roll with my neck. He told me that I was in a bad shape and that I had uric acid crystals in my muscles. He would rather theatrically “break” these crystals with loud “aahs’ of victory over the next few days. My pain escalated.
This healer was the first person to suggest “diet” – the ornate term for an Anna Hazare kinda eating regime. He told me to go off dairy, meat, lentils, wheat and most veggies. And to start taking apple cider vinegar before meals.
My palate drowned out the good counsel of my stomach and I didn't stick to this diet too long. Pain in neck. Why must stomach suffer, was my logic.
This story has gotten really painfully long and needs to end
It looks like the My-Sore Man knew something.
I am finally healing. I think. It’s a story for another blog though.
I have seen Lady Gaga tweet remedies like ‘infra red saunas, electric-heated blankets and Epsom baths’. I have tweeted back to her to say these are just Maya – Illusion. Temporary relief. Been there, done that. (Like she’ll read my tweet!). That the healing will need to start elsewhere. Perhaps, in part 2 of my blog.
(You can read Part 2 of this blog here: I Feel Your Pain Lady G! Why Fibromyalgia Plays Hard to Get)
(This article was first published on 28.09.2017. We are reproducing this on Lady Gaga’s birthday)
(This story was auto-published from a syndicated feed. No part of the story has been edited by The Quint.)
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