Hi, I am Shruti Chopra. I have Ehlers-Danlos Syndrome and many of its comorbidities.
It was an evening in late October 2015 when one evening, I stood up, felt sharp needles being hammered into my legs and feet, I fell back in bed, my legs didn’t feel like mine anymore – they’d given way. I was 31 and I’d had Ehlers-Danlos Syndrome all my life and I didn’t even know it.
A few days before this, my fingers started hurting. Nothing else hurt but my fingers – I couldn’t even use a pair of scissors. Soon, my lower back felt the pain.
I decided to check my temperature and saw that I had fever yet I didn’t feel it, so I went to my GP as I started to believe that all this wasn’t some regular viral. Umm.. side note – it’s now May 2020 – and I still get fever every single day. So getting back, my doctor ordered the standard blood tests for typhoid, malaria, dengue and chikungunya – all of them were negative. We still didn’t know what I had yet I had persistent fever and random pain in my hands and back. He prescribed antibiotics for a regular viral infection and asked me to rest in the hope I would get better.
A few days into the antibiotics and with an increasing feeling that I should rest, I lay down… twiddled my thumbs (mentally though because my fingers were hurting). With the desire to get up and go to the bathroom, I stood. I stood and fell back in bed. My legs were in excruciating pain – pain that I would describe as bone crushing with sharp needles being hammered into my legs and feet at the same time.
And I’m not even exaggerating – that’s exactly what the pain was like and what I didn’t know at the time was that I was going to face this intensity of pain for the next 6 months before steroids would kick in – but all that for a little later… Now I knew now that this wasn’t a regular viral.
And so a journey of mis-diagnosis began.
I was wheeled around from one hospital department to the next, one hospital to the next with a lot of unknowns in the air, perfect blood tests and failing legs which were swelling up and going purple with white spots (also known as piezogenic papules). I was struggling to breathe while chewing – eating was proving to be tougher each day, which later led to me having to alter my diet keeping me away from anything that meant I had to chew a lot and caused inflammation like gluten.
Eventually a chest CT scan showed that I had lesions in my bronchi and fluid around the heart. I was tested for tuberculosis – a skin test, a blood test and a sputum test. I wasn’t coughing any sputum and I also had supposed lesions so an endoscopy was done. The lesions were tested and so was the sputum. While we waited on the test results, my doctor felt it was necessary to get me onto anti-TB medication for a nine month course and low-dose steroids.
The results were in – it was all negative, I didn’t have TB but now I was a month into the course of meds (which couldn’t be left once started) and if I have Poncet’s disease then I should start getting better in another month. My face was full of acne, my hair was rapidly greying plus the hair fall was scary.
Month two, three, four… all were passing by. I was still struggling. I was still having to use a wheelchair for longer walks and using walking sticks otherwise to help my balance. Nine months were over and now my chest physician was unsure of where to take this. He referred me to an infectious diseases specialist.
Seeing that I had been to the US earlier in 2015 which was a few months before my symptoms began, I was ordered a basic test for Lyme Disease. A condition not known to be prevalent in India and the test not commonly done either. This basic test came back positive. The infectious diseases specialist wrote my life off to a world of doom. He didn’t want to see me again believing that he can’t help me. I now look back and feel that he just didn’t know enough about the disease and instead of being honest that he doesn’t treat enough Lyme disease cases, he added fear to my tenacious psyche.
After a lot of research, I found a testimonial of a girl who was bitten by the Lyme disease tick during her travels in the US and when she came back to India, she got sick and met an infectious diseases specialist in Bengaluru, Dr Rajagopal. I decided to contact the same doctor who did the most amazing consultations over the phone. She understood my case, put me on medicines for Lyme disease and asked for retesting of my blood for the various markers indicative of Lyme.
The tests had to be sent to the US and this whole process took a couple of months. I had to be tested three times because of some new test addition or just to double check the previous results.
In the meantime, Lyme medicines were throwing me into a further slump – I have no idea how many with Lyme take those meds – you don’t feel like yourself any more. I was at my worst ever – unable to do the little I could do before. I felt extremely sad that my life was now going to be me struggling to lift my head off the pillow let alone stand using my sticks.
The final blood test results were in – I didn’t have Lyme disease. Yes, that’s right – I did NOT have Lyme disease.
Dr Rajagopal was pro-active and helpful – I couldn’t have asked for more, but it was March 2017 and still no diagnosis, so Dr Rajagopal advised me to see a rheumatologist. When I initially got sick in October 2015 I had seen a rheumatologist, Dr. Oak who was struggling to figure out the reason for my symptoms and the strange contortions of my feet. I was tested for at least 12 to 15 medical conditions but all were negative and then with my chest physician being so confident of me having Poncet’s disease, I never went back to see my rheumatologist.
18 months after my initial symptoms, new issues had emerged.
I was constantly dizzy or feeling like I was regularly riding over speed bumps along with the fever which hadn’t gone since day one – and till today, like I said earlier, I still go through fever every single day. Dr Oak re-evaluated me right from the beginning, checking my skin, my feet and shins where my pains were the most.
Something about my history, the state of my legs, how I was struggling to walk, my movements and my varying blood pressure based on whether I was lying down, sitting or standing – somehow that day all this made her believe I had Hypermobile Ehlers-Danlos Syndrome with an Autonomic Dysfunction. The autonomic dysfunction I have is called POTS: postural orthostatic tachycardia syndrome.
She was so confident of her diagnosis but still decided to take my file and discuss this with her group of doctors. She asked me to see her after one week. A week later she confirmed that her diagnosis of Hypermobile Ehlers-Danlos with POTS was what she was sticking with.
18 months after October 2015 I had a diagnosis.
In May 2017, on a trip to London, I went to the Hypermobility Unit at St. John & St. Elizabeth Hospital and met Dr Gayatri Mittal. My history was re-looked at where I explained my entire 18-month ordeal all over again. My joints and skin were evaluated through the Beighton test – a nine-point scoring system after which my blood pressure was taken while lying down-sitting and standing. My diagnosis had been confirmed once again – I had Hypermobile-EDS with POTS.
Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder, in which there is a defect in the structure or processing of the protein collagen.
Symptoms of Hypermobile-EDS can range from chronic joint and muscle pain, loose joints, skin fragility, scarring, slow healing, fatigue, osteoarthritis and dislocations amongst many other symptoms.
As for POTS, it’s a condition that affects blood circulation. The symptoms of POTS usually occur when standing up from a reclining position and can sometimes be relieved by sitting or lying back down. Some of the symptoms of POTS is lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat.
Also, very interestingly those who have POTS can’t coordinate the balancing act of blood vessel squeeze and heart rate response – this basically means that we can’t keep our blood pressure steady and stable.
As a patient – If your diagnosis isn’t feeling right, trust your instincts and question it. You live with yourself 24 hours of the day – you know what you’re going through – don’t dismiss it – trust it.
Since receiving this diagnosis, I’ve had my multiple falls from the POTS, had random rib slippage, jaw issues, multiple elbow subluxations… not to forget the persistent body pains, legs going through their own craziness and my skin hurting (was eventually diagnosed with fibromyalgia).
Since receiving this diagnosis, I’ve had my multiple falls from the POTS, had random rib slippage, jaw issues, multiple elbow subluxations… not to forget the persistent body pains, legs going through their own craziness and my skin hurting (was eventually diagnosed with fibromyalgia).
I’ve learnt quite a few things in these years and I wish to share some of those today.
1. With Ehlers-Danlos syndrome you’ll get a whole host of comorbidities to deal with, like POTS, endometriosis, painful bladder syndrome and so much more.
2. After reading up more about EDS, I have come to realise that when the 9 year old flexible me who did gymnastics complained of knee pains which were dismissed as growing pains was actually a sign that I could be a Hypermobile-EDS patient.
Just the fact that I was so bendy should’ve been sign enough when I complained of pains all throughout my life… but sigh… wasn’t to be. It took for me to end up unable to stand and in a wheelchair for us to get there.
3. As a patient – If your diagnosis isn’t feeling right, trust your instincts and question it. You live with yourself 24 hours of the day – you know what you’re going through – don’t dismiss it – trust it.
4. Allow the doctor to complete their investigations, but ask what’s on their mind.
5. If the doctor is seeming unhelpful – change the doctor. You don’t need to see someone who is forgetting to treat you like a human being.
6. Know what medicines you are taking and why.
7. And finally be acknowledging and grateful towards those who are helping you, those who are on your side. Also, a good pep-talk to yourself also goes a long way.
It’s been a maddening ride in which I have had to learn so much very quickly yet trying to maintain my sanity when I would struggle to chew and swallow my food – it was a steep learning curb but I believe I’ve been lucky enough to get a brilliant team of doctors, nurses and porters at hospitals who would wheel me everywhere. Plus my family and friends who despite having to see my struggle stood by me. Then there were some amazing forums including Instagram and Twitter through which I gained a lot of information that helped me ask the right questions.
And I’m really glad for two additions in my life – a change in diet and my walking sticks that give independence and stability.
So that was my story… I hope it helps someone out there.
P.S: This article was previously published on author’s blog and has been republished with permission.
Shruti Chopra, lives in Mumbai and has her own website – allthingsendometriosis.com through which she shares her challenges with endometriosis, Ehlers-Danlos syndrome, PCOS, adenomyosis, fibromyalgia, arthritis, chronic fatigue, MCAS and more. Her website isn’t just limited to sharing how she manages these conditions on the physical side but the mental too which recently lead her to starting a podcast which is available on Spotify under the name of ‘Footprints, No Boundaries‘.
Shruti believes that building awareness by keeping ourselves and others around us well informed is crucial if we’re to create sensitivity towards those who are dealing with chronic conditions – her website, podcast, YouTube, Facebook and Instagram are all geared towards this attempt. If you would like to get in touch with her then she is quite active on Instagram.
