This is me publishing this blog on 21st August 2022. Life generally does not fast forward to the cure segment of the story. Lot had to be gone under the sun before I reached there and at times it was a long and difficult road ahead of me to be trodden all by myself . But I am glad I went through hell and that it was a long and difficult road because if it were not hell, the picture wouldn't have been as clear and today in retrospect I couldn't have earned a big and long smile that will sure last this lifetime. I carry this picture with me through every low or high moment that life throws at me. I carry this picture through every impulsive reaction or qualm of jealousy or boredom or uncertainty that comes my way. And that picture is an unwavering image of my hellish years that ends with a new beginning.
Before this beginning of “having seen everything and coming out okay”, there was another phase that also had a beginning in early 2018. Nightmare will be an understatement to describe as night also has a definite ending. But time absolutely stopped ticking for me. I found myself in a perpetual state of hell that seemed far far from ending. Being a Math & Science student, logic was all I could relate with. Either I end this phase by taking my life away or illness ends itself in my life. Taking my life seemed completely okay and justified in my head and I did consider it even technically but could not execute spiritually, I was left to only ponder over the possibility of the latter option. So,like a dog with a bone and armed with infinite patience and persistence because I had absolutely nothing to lose anymore, I fixated myself with a picture of normalcy inside a suicidal brain while fantasizing myself recording a Youtube video of my success crawling towards the “other side” listing precise solutions. Right. Simple. (I did one eventually:) )
To feed my dejected brain with more such reviving thoughts, I kept subscribing myself to a feed of more amazing possibilities. For now, I gave myself a second chance at life. “What if?” was my favorite mantra . What if my pain dissolves? What if I can dance again? What if I get rebirth in this very life? Do I just forget, forgive and move-on? Do I plan the whole thing and be cautious in every life decision or just step back and give myself an umpteen chances to fail or flourish and yet be okay and neutral about it?
But for all this to manifest, I had to first save myself. Save my husband. Save my new born daughters.
Point in time where it begins:
About 6 weeks into my twins delivery, Feb 2018, I started feeling a bit ‘odd’. ‘Odd’. Yes, odd. Disoriented. Not symmetric within my body. Left leg felt weak and kind of on its own and that I exist only till the middle of my back. Rest of the body floating. Not painful yet. Sure enough, I told this to my husband. He felt clueless. We made an appointment with our gynecologist, who asked us to visit a physiotherapist as it could be a chance of muscle and bone weakness because of many months of bed-rest due to twin pregnancy. By the time we could avail the appointment, I started feeling tingling sensations and numbness throughout my body that I simply couldn’t sleep through. Every time I nodded off to sleep, I would wake up due to those tingling sensations. The pattern continued over several days and I lost mobility due to sheer sleep deprivation caused by tingling sensations as soon as I fell asleep. It was a ‘classic’ deadlock. The immobility got converted into giant painful areas within my body. The word ‘pain’ simply cannot do justice at this point. It felt infinite. It felt unreal. It just would not stop for a minute.
At this time, I also had 2 months old baby gals to be looked after and cared for. My husband and my mother in law took every possible measure to take care of them while taking care of the bizarre symptoms I was showing. Then I lost my mobility and so could not see any doctor in their clinic. Then I was taken by an ambulance under ‘Emergency’ to one of the biggest hospitals in Pune.
I had a series of MRI scans on my brain, spine and most painful area which was between my lower back connecting the hips. Overwhelming as it was, the results of those scans were even more surprising. The results were ‘Normal’.’ Perfectly Oriented’. ‘Symmetric’. No diagnosis. At this point, I would have taken any diagnosis as a blessing for that would mean there is an actual treatment and that would mean medication or surgeries that would further mean an end to my continuum of pain. Sleep deprivation for many days and drowning in physical pain had brought the worst of me.
I felt senseless. Maniac. Lost. Like doctors had given up on my case. Like God has given up on me. Like every good deed that I have done in my life so far until the point of deciding to give birth to my twins against my gynecologist’s advise and discretion has not been good enough for universe to allow me to get through the pain and what only seemed like severe never ending punishment without obvious cessation. I was given different kinds of painkillers to mask the ‘feeling’ of pain. As per them, pain did not exist. It’s all in my head. Genuine. Not made up. But no real pain which they could treat or have answers for.
So, the only answer they had was since the pain is not physical, it had to be psychological. In other words, “conversion disorder”. Simple enough. The only obvious answer by an army of ‘foreign return’ neurological doctors in one of the prestigious hospitals in Pune. And I was sent to the psychologist for he had answers to my ‘pain’. As nonsensical as it sounds, I felt even more enraged for attributing my pain and misery to some ‘unresolved’ depression or anxiety which if resolved would fix my pain. Even under tormenting pain, I had more clarity than the bunch of senior neuro surgeons guiding promising neuro interns. Because every disease for that matter roots in the psyche. Something somewhere unresolved shows up physically including cancer. I am in no way disrespecting the seriousness and severity of cancer. But why do cancer patients have hundreds of pages worth of treatment whereas the oncologists could just direct the patients to a psychiatrist who would then dissolve their tumors by talking through their deep-rooted ‘pain’ problems and help them get their health back.
I think I am rushing through these phases: the initial symptoms, seeing neuro doctors with my husband holding my perfect MRI scans, the diagnosis of “conversion disorder”, paying huge fees, the pain, the further diagnosis by interns , the “judgment of weak psyche”, the diagnosis of “conversion disorder” again, the pain , and so on in no particular order. Let me just slow down with sympathetic humor added to what sure is the lowest point in my life. I do not want to inflict this pain to anyone even remotely that I would make the whole thing a bit more accepting, laidback and humorous to get through. And do not worry , years later, it does get better. In fact, I feel ‘odd’ , ‘disoriented’ and ‘maniac’ , just the good versions this time as I am drunk on this thing called ‘life’.
As I recall with a lot of effort and agony mixed with a slight smile now, it was on 11th Feb 2018, just a couple of days after my girls’ naming ceremony, out of the blue that I started crying with no particular reason I could point at. I tried to attribute it to post childbirth hormonal changes and thought the phase might get over soon. I remember I would watch a lot of YouTube videos to up my breastmilk supply as I had two babies to feed and had unnecessarily pressured myself to provide ‘real’ food to them. No surprises, I was failing in that area. Figured if I ate a lot of food, I would make more than enough. Under this ‘genuine’ pretext, I stuffed myself with soul satisfying empty calories. As I was gorging on cookies and soy-milk, on that day, I broke down heavily and felt lost. I cried and cried till I simply slept off.
When I woke up, I felt like my back had been shifted to a different plane like how we can tilt a laptop around its hinge for different kinds of viewing. Kind of like that. My left side literally felt out of place like my leg is not attached to my body and is on its own walking or floating. I narrated this to my husband. He was concerned. We rightfully made an appointment with my gynecologist who then prescribed vitamins, calcium and magnesium and concluded that I have lost all the goodness in the pregnancy and it's time to make up for the nutrition and strengthening. He also suggested physiotherapy for strengthening my back and legs. Honestly at this point, the correct solution did not make sense. None of my symptoms made sense. Everything sounded hoax. With my husband’s support, I literally dragged myself out of the clinic to the car and back home.
We didn't talk much that night. I took the supplements and we fed and cared for the babies and that was that. Honestly, I did not get enough time and space to consider what was going on within me or what was about to happen in a few days. I didn't require to move around much as I was mostly staying in my room with my gals.
One night as I was sleeping, I woke up with a tingling sensation on the left side of my body and literally felt that my left side was dissolving into the bed. I woke up startled. I couldn't sleep that night. I just laid and rested on my bed. Next day, I continued with my routine of feeding girls, looking after them and watching my husband do the ‘hard work’ of changing them, and putting them to sleep which would sometimes take upto 2 hours and by then the second one would wake up even more fussy and wanting more attention.
After 3 days, around 4am in the night, I woke up again with the same tingling sensation and same feeling of dissolution into the bed but with the right side this time. I was sleeping on the right side then. Figured, maybe it’s the side on which I am putting my body’s weight on that is getting tingly and thought some nerve somewhere is getting pressed and causing the tingling sensation like how when we sit for long hours, our legs seem to go to sleep and we feel tingly. This cycle of waking with a tingling sensation every night caused sleep deprivation which certainly didn't help my feelings of ‘disorientation’ within my body. Excuse me for using every possible word that could be derived from the root word ‘disorient’ . It was my being back then and I have strong identification with that word.
After a week of sleeplessness, I lost mobility and couldn't walk even two steps normally. Sometime that week, I started having unusual burning pains in my legs. Enough was enough, the supplemental route and riding ‘it’ out didn't seem human and plausible. I felt sharp stabbing pain in my left knee and told my husband convincingly there is something not right in my knee. We made an appointment with an orthopedician this time. He was one of the highest rated doctors on practo.com.
The reason I am not divulging this doctor’s name is not because it would be plain rude to say I don't remember his name and that since he didn't help me in my condition and rightfully so I choose not to mention him. I am sure, he must have helped other patients in their critical conditions and hence was rated one of the best out there on practo. I choose to not discount him in his great practice or his well meaning intentions. Having said that, I would have absolutely loved it if he also hadnot discounted my illness and my critical condition and that I was in pain and was seeking help from him at the time.
So, the clinic was on the 2nd floor. Gruelingly and with my husband’s relentless help, I made it to the summit. Excuse me for my misplaced and sad humor. These memories bring out the satirical emotions within me and help me process everything lightly. So, yeah, the doctor seemed empathic with me limping and asked me about my symptoms. So here I was telling how I had just delivered twins and out of nowhere I am going through these incessant experiences. He seemed genuine and asked me about my Vitamin D status, examined me physically to locate where my pain was, which at this point was all over and that I couldn't pin-point. He wrote a prescription of Paracetamol, an antipyretic and analgesic, since I was breastfeeding and cannot be given strong pain-killers. I was expecting to be summoned to the emergency room and be operated upon on my knees or my hip and whatnot.
And here I was suggested the most commonly prescribed medicine. This did not make sense. I reiterated, this is serious and that he replied that this is a mental condition and not a physical one. I got blank. My husband seemed the most clueless he has ever been. I snapped back, “I am perfectly capable in processing what you are saying doctor , that I respect you and I expect the same from you. This is not mental and that in fact I am capable of having logical conversation with you and then you can judge for yourself”. He suggested that I seek a neurologist’s opinion since these symptoms were outside his purview of understanding or assessing. This was acceptable.
We retreated our steps back home complaining how an intelligent doctor can be so insensitive with his remarks. I attributed his consultation to lack of empathy and sheer ignorance on his part so that I make peace that night. That did help in the long run in crawling my way back to health that I do not let anyone decide my condition or my fate since the battle of my illness had just begun and a long dark journey to be embarked upon was ahead of me.
Since a lot was going on at home with respect to babies, we couldn't arrange an appointment with a neurologist right away. Few days passed and I lost my mobility completely. At this point, I was taken in an ambulance under “Emergency” to the best hospital in Pune and this time , we sought a neurologist in this hospital. The neurologist is one of the finest neuro doctors in the world and I obviously started to read his reviews. Patients whom he has treated can't stop raving on the internet about how he has changed their lives. I was hopeful. I was going to get the correct treatment for this time. I was ecstatic that finally I will get my deserved answer. It was Sunday and the doctor could only come by night.
Meanwhile, I was given Xanax, 0.25 mg, small dose benzodiazepine.And my mother was constantly fusing me with freshly made electoral solutions to up my electrolytes. Suddenly my pain levels dropped, my knees could get bent. I could walk. I could sit down, get myself , everything was possible suddenly. I could dance. After a few hours, suddenly I started dangling within my legs. My knees got stiff and couldn't bend. I couldn't walk two steps without support. Everything was suddenly taken back from me.
The night arrived and the doctor too. Immediately I expressed my entire experiences in the last 2 months with the most concise words under the sun and how I got better for a few hours and how my body resumed the pain. He nodded intelligently. He suggested MRI scans which I mentioned earlier, one was of the brain and other was of the back. I felt intelligent too. Finally, something complex was happening which called for MRI scans. Results came out the next day.
Everything was perfect. Nothing was wrong. MRI scans are symmetrical, the report said. At this point, I was beginning to understand that I had gotten myself into an unknown here . When my neurologist came, I didn't say much. I saw everything coming my way. He suggested a psychologist. Since I respected him a lot and I looked up to him, I didn't want to argue or make my point. I soaked whatever he had to say but I didn't accept his final assessment. As much as I knew that he knows more about neuroscience, I knew that I know more about me. Ego sometimes really protects us and I am glad I was too egoistic to be written off by written prescriptions and reports.
My husband never asked me to seek a psychologist and he knew I was not going through any anxiety or depression. But the only next logical step was to connect the further dot. Consult a psychologist. I met the recommended doctor in his clinic. There was a painting of the breathtaking church La Sagrada Familia, Barcelona, Spain hung on a wall. I told him I have been there and he asked me about my travel experiences in Europe. He seemed interested. I got interested too. For a change, I had normal human conversation after a long time where I am expressing great past experiences of myself and not imminent painful ones. After some time, I started building trust in him. I asked him if he thinks this is a mental condition. He quickly denied. In his words,
“this is not a mental condition. This is CFS, Chronic Fatigue Syndrome also sometimes referred as Fibromyalgia, Myalgic Encephalitis or sometimes loosely labelled as Mystery Illness. Many people have this. Some worse, some better.”
This information did not comfort me, but later proved to be utmost helpful. More on that soon. He said, there is a low degree infection within my body which is causing this and since this infection cannot be found through regular blood tests and hence cannot be quantified and treated within the realm of established protocols, patients who contact this are written off anxious and are only asked to visit a psychologist.
In other words, this low degree infection is resulting in high cortisol levels amplifying pain signals within the brain whereas in reality pain doesn't exist. He prescribed me anti anxiety medications.Since it was his area of expertise and his clinic, I nodded to show my agreement and took the prescription. He also said he doesn't find me depressed and will not prescribe me anti-depressants. In my mind, I also stated loudly, "I AM ALSO NOT ANXIOUS". On my way back, I reiterated every word of his over and over in my mind as I knew somewhere his expertise in CFS or Fibromyalgia can help me get a little closer to my unraveling of this mystery illness.
While I was living a perennial life of immobility with perpetual amplifying pain signals that a human brain simply cannot bear without losing it completely alongwith sleeplessness. I did not resort to taking the anxiety , in other words, ‘shutting my brain’ medications to be able to get through a few hours of painlessness only to be sunk back down in misery. Deep down in my heart I knew I am not nervous or anxious about anything in my life. If anything, the fact that I had delivered the most beautiful identical twin baby girls meant I am special and gave me every reason on the planet to look forward to seeing them grow everyday. I surrendered to “All-there-is” and prayed to find a path in the unknown.
The person I knew who had also explored the unknown and came out healthier and more beautiful was Dr. Renu Mahtani. She herself had defeated a degenerative physical condition with the help of Epigenetics, Pranayama, Om chanting, Meditation and Power Self Affirming Thoughts.I happen to know her since 2013 when I wanted to learn Yoga to become a better version of myself. Immediately my husband sought her advice in dealing with my condition.
She thought maybe there is something missing in those MRI’s and referred me to Pune’s one of the best neurologists who is revered for his expertise in performing impossible brain surgeries.My loving husband got me admitted into his hospital when I was having another episode of tingling sensation all over my body to the point I thought I am dissolving into those overflowing electric shocks. There was another brain scan and spine scan. Nothing again. If I were to fare with other patients in those wards, I would certainly come out with flying colors with my ever so symmetric brain and spine. This made me feel I am exposed for I knew I would be labelled “anxious” or happen to have “panic attacks” or I have “conversion disorder” , that “Nothing is physically wrong with me” and that it is afterall a “mental condition”
The doctor was to attend me in the afternoon on the next day. Meanwhile I was attended by promising neuro-doctors, currently neuro-interns who were definitely younger than me but can be said that If I were to meet them outside, we can hit off as friends. There was a girl, two guys murmuring about my case outside my room. I limped my way out, made eye contact, smiled to establish a connection. It felt nice to see young folks. They happen to examine me with all of their medical tools to see if there is dysfunction of my peripheral nerves causing numbness, tingling and burning sensations, weakness and amplified pain. I could see that they saw me as an interesting case to study as my MRI reports did not explain my symptoms.
In the afternoon, I overheard what sounded like a doctor’s voice outside my room. I was ecstatic to finally have him arrive. If he could operate swifty on such intricate and convoluted nerves inside brains, I definitely should be an easy fix on his radar. He was over the phone talking to what sounded like his colleague. He was saying in Marathi, “ This sounds like a difficult case. It is about a new mom of twins showing symptoms of hysteria. At this moment, I didn't know the definition of hysteria in medical terms, but I knew enough that hysteria can be related to the word hysteric, which means a wildy emotional and exaggerated behavior. To say the least, I was enraged and judgemental of his conclusion. Without actually seeing me or talking to me into my eyes, he labelled me hysterical. Thankfully, I was raised with enough ego and self worth to be protected from such comments or to be swayed by his observation or rather judgment of me. Nevertheless, I wanted to give him a benefit of doubt and perhaps he was referring to another mother who also probably could be the result of misdiagnosis like mine and whom I strongly felt sympathetic towards.
He marched into my room and took my hand in his hands, looked into my eyes and said, “I believe in you. I know you are in pain, and the pain is physical, and not made up. But the root cause is mental. You have to learn to relax. This is anxiety causing unbearable pain in your brain”. The interns who had surrounded him who previously showed caring outlook now showed judgment and ignorance. I never had that look for me ever. I was boiling in my head where a roomful of intelligent people were judging me for being hysterical and anxious.
I was written off again as a case of anxiety and was asked to consult a psychiatrist from the same hospital. Before I could see him, interns in psychiatry started asking me questions about my childhood or was there any trauma that happened to me.I said Nope. They genuinely seemed to care. But I kept saying I have had much better childhood with all the privileges a child could have and more such as the best education from India’s finest university or marrying the love of my life. I insisted I am really not anxious or depressed or mentally ill. On the contrary I believe I am truly blessed by God in all aspects and as a proof I cited the accomplishment of having birthed identical twins.
Then the senior psychiatrist came. He seemed indifferent to me and assumed he had figured me out. He spoke to my husband outside. This was making me anxious , I acknowledged. After a while they both came back and the psychiatrist prescribed me anti-depressants and anti-anxiety medications, basically the chemicals that my brain was short of and that was the real cause which was amplifying the pain signals within my brain. I was again labelled as mentally ill. He came back inside and cited examples of great , highly accomplished and famous figures from history and also in the present who have accepted they are dealing with anxiety and depression and this is completely okay and normal. I said again with a lowered voice this time, for the umpteenth time I am not mentally ill and I respect the severity of real mental illness.
At this point, my husband wanted everything under the sun to make me feel good in my body and begged for treatment options. My husband and doctor again went outside. This was clearly not helping my case. My husband later told me they spoke of electroconvulsive therapy, a last-ditch treatment for severe depression/anxiety.
Electroconvulsive therapy (ECT) is a procedure, done under general anesthesia, in which small electric currents are passed through the brain, intentionally triggering a brief seizure. that changes the brain chemistry that can quickly reverse symptoms of certain mental health conditions.
I didn't like the sound of that. Their explanation was ECT will be an attempt to shock me out of intractable symptoms of pain. My husband outright rejected the therapy as he was too scared to even imagine me given shocks with a flickering hope of feeling better. He clearly loved me and trusted me when I said I am not mentally ill to the doctors. They came back inside . I told the psychiatrist , “you're diagnosing me with being depressed or anxious, but that's not what it is. I have a desire to do things and I am pretty much confident, but I am not able to with my body. This is different than having no desire to interact with the world or being scared of the world. I kept repeating my physical symptoms over and over—heart palpitations , pains and aches.
There was nothing much to do at the hospital as I didn't care much what ECT can do or how much it can help as I certainly didn't want my brain chemistry to get messed up. We got the psychotropic medications from the medical. My husband literally carried me into the car and we headed back home. I kept thinking although the ability to think was severely compromised and it was a struggle to think anything. But I remember having an argument with myself in my mind. This is real.. This is not imaginary. They have got it all wrong. This isn't right, there's something else going on here. No medical doctor is listening to me.I have all of these symptoms that have nothing to do with mental illness, which is not to denigrate the severity of mental illness. But this is physical.
Point in time where it ends:
Feb 2020 was when my forever companion pain decided to leave my brain for good and I found my motor capabilities were in my control again and I could move around a little more with balance.
Looking back in Aug 2022, with infinite possibilities inside the same brain that was once suicidal, this is me walking in Vrindavan garden in a beautiful city Mysore.
The reason I narrated the horrifying story is not to gloat about having figured it all out about the real cause of CFS/ Fibromyalgia and having crossed the dark tunnel without the conventional treatment of psychotropic medications and ECT. If anything, after having healed completely and being blessed one more time by All-there-is to put me on the correct path to healing, today through this blog and with a humble request, I urge the doctors with all the love that I have received from the universe to research more on Mystery illnesses and explore all the following steps and next time when anyone knocks on the door with inexplicable pain, please don't write them off with “conversion disorder”.
This was not mental. This was not hysteria. My pain was not emotional. It was physical. The solution was
Detoxification of heavy metals , correcting the Vitamin D deficiency and supplementation for at least 6 months to a year and continuing for the rest of the life , Magnesium to alleviate pain, Selenium , an antioxidant that is great for brain, Protein rich food, Physiotherapy to strengthen muscles, Alternate Nostril Breathing to strengthen and regenerate brain cells.
