Archive September 2019

2 Sep

No, I am not just living with fibromyalgia..!!

No, I am not just living with fibromyalgia..!! No, I am not just living with fibromyalgia..!!   No, I am not just living with fibromyalgia – I am living my life to the fullest – and to be honest much better than most people around me! I was diagnosed with fibromyalgia in Apr 2008, almost a full year after I first experienced debilitating pain in my right leg. By the time I found a doctor who could tell me what was wrong with me, it was full blown – I was in pain 24 hours a day and no part of my body was spared – arms & legs, upper back, lower back, even abdomen!!! The initial treatment plan included oral medication and 5 days of physical therapy. My idea of physical therapy was heated packs, infrared and ultrasound treatments. I had absolutely no idea what lay in store for me. As I landed at the clinic for my first session of physical therapy, Praveen TJ (my first physiotherapist) asked me a few questions about my pain type – where, what kind, how strong etc. Then he started “giving” me trigger point therapy – this involves manually pressing trigger points on muscles to reduce the pain. Fibromyalgia causes a heightened feeling of pain when pressure is applied and here I was paying to have that pressure applied to the most painful area – trigger points!After 5 days of this painful therapy, I consulted the doctor again, as planned, and he prescribed me one month of therapy. That’s when I knew that I am not getting rid of this problem anytime soon and I might as well try to understand the problem and the treatment course a little better. So I started asking questions – to doctor, to Praveen, to other physiotherapists at the clinic, to anyone who was willing to answer my questions- as Praveen used to call me – I was a walking talking “question bank”. Slowly I understood a few but very important things like – what is referred pain; what is the difference between trigger point pain and tenderness pain; what is a myofascial pain; what activities, especially if repeated, would increase pain in which area of my body. A month got over, the relief was there but not enough so I started taking one hour of physical therapy every day. During this time my fitness levels also took a nosedive. I had to stop all forms of exercising including yoga as that was increasing my pain and undoing the work done by my therapist. A few more months went by and the therapy became part of my routine – wake up, go to work, leave work, go to the clinic, reach home, apply hot pack, have dinner and have restless sleep (thanks to fibromyalgia). As luck would have it, things took a turn for the worse. By Dec 2008, while the pain had come down, I had started to feel very tired and fatigued- so much so that I would lie down at the back seat of my car while I was driven to work. (Due to severe pain I had stopped driving almost a year back). And suddenly I started gaining weight as well – that too at the rate of 6 pounds a month. This weight gain was a result of severe thyroid inactivity –  my TSH levels were 160 (normal is less than 5.5.) We found antithyroid antibodies in my blood, proof that my own immune system was killing it – for that matter had already killed it (hence the super crazy TSH levels). At this time I also tested positive for antibodies linked to fibromyalgia – establishing the fact that the two conditions were inter-related and that both were autoimmune diseases. Amidst all this chaos, in a rare moment of sanity, I decided to try meditation. I signed myself up for a 10-day residential course on the outskirts of the city and without thinking landed there. In hindsight, had I thought a lot about it I would not have attended the course. The course helped me stop using food and alcohol for emotional comfort – the first step towards recovery! I stopped gaining more weight and started thinking about how to shed the 40 pounds that I had gained and get my life back. While the doctor was still against me exercising, Praveen said that we would start slowly and that he will help manage the pain with therapy. Under his guidance, I started incline walking on the treadmill and as expected the pain did go up but with extra therapy and my determination and his motivational words, I kept increasing the incline and speed and distance walked. There were many times when I felt discouraged either because of pain or when I would think of how I used to run at high speeds for an hour or so before fibromyalgia, but I didn’t stop working out. First I increased the time to 20 minutes, and then I increased the incline, then the speed and then time again …and in a few weeks, I was walking for 30 minutes at 6 mph at an incline of 10. For another 3 years, I stayed on this course, walking on incline, yoga, physical therapy and meditation. It had been 4.5 years since the pain started and I had tried various alternative remedies as well – Homeopathy, Ayurveda, Naturopathy, Acupressure, Acupuncture and of course was still on Amitriptyline and physical therapy. I still didn’t know the root cause of fibromyalgia (actually no one still knows for sure what causes it- some say it’s genetic, some say is just stress, some say it’s environment) and hence couldn’t attack it. Only thing I had realized was that therapy and medication alone will not cure me. Then I learned that trigger point therapy kind of weakens muscles and in turn, weakened muscles develop trigger points easily. So more therapy I took, more I increased the probability of fresh trigger