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 points. The only way out of this situation was muscle strengthening. Years of just walking, swimming and yoga combined with this therapy had left my muscles very weak. I couldn’t even lift my purse/bag without wincing in pain – a fitness regime to build muscles sounded almost impossible.

As I was about to lose hope, yet again, I stumbled upon a book that reminded me of something I had kind of forgotten. Yoga. Yes, I was doing yoga every day but more as a stretching regime and not as a holistic approach to strengthen my mind, body, and soul. From my previous experience with yoga (at the age of 15) I knew that yoga works in a different fashion – it speaks to the mind from inside and to the body from outside and while it takes time to get them, the results are no less than miraculous.

So I started the day with breathing exercises (pranayama) – mostly Kapalbhati, Agnisaar and Anulom Vilom. Then I proceeded to do Surya Namaskar (Sun Salutation). I started with 2 on day one and decided to add one more every day. My body was too weak to lift its own weight and the first day when I completed 10 salutations, I felt I was going to die. I was out of breath, my arms and shoulders were hurting and my quadriceps were screaming. But I kept at it, now adding two every day and 20 days later I had crossed 50. After I crossed 50, I started adding 4 every day and in about 45 days since I had started I reached the count of 100!

For me this was exhilarating. I had only heard stories of people doing 100 sun salutations in one sitting, I had never imagined that I would be able to the same. Next day when I started the salutations, I wasn’t sure I would reach 100 – after all, it could have been a fluke. But I managed 100 again and the next day and the day after…

In addition to yoga, I was still doing incline walking on weekdays, swimming on weekends and dedicated one day a week to yoga that started with pranayama and 100 sun salutations, included asanas for upper body, core & lower body and ended with meditation.

The pain during this period had definitely gone back up but I was able to manage it with therapy and meditation. The 3 pronged approaches of medication, meditation and muscle strengthening was working out well. My fitness levels improved significantly – I was 20 pounds lighter, could perform 100 sun salutations and post that walk for 30 minutes at 6 kmph at an incline of 12. I couldn’t help but wonder if I should attempt more…

So I decided to start with some jogging on the treadmill. In between incline walks, I started jogging, in intervals, at slow speeds. I would walk for a minute and jog for 2 minutes – the first day I managed 17 minutes of jogging in the 30 minutes that I spent on the treadmill. I couldn’t believe it! Next day I was able to increase the jogging time to 20 minutes and average speed of jogging also went up. In about 3 weeks I could jog at 7.5 kmph for 40 minutes non-stop (5 km in distance). In order to avoid overtaxing same muscles, I would intersperse jogging with swimming and incline walking. By end of May 2012, I let go of the confines of home & treadmill and stepped out into the open. The first attempt, I managed to run 5+ km in 41 minutes – while it was much slower than the speeds I was used to 5 years back, it was an achievement none the less.

The whole of Jun 2012, I focused on increasing speed and time and by month end I was jogging/running at a reasonable pace – sometimes on the treadmill, sometimes outside and weekends I would break the monotony with swimming and yoga. While my upper body was responding well to 100+ sun salutations, I was getting bored of the routine. After I hit 176 sun salutations in one sitting I felt a strong need to try something tougher.

In Jul 2012, I decided to experiment with 30 Day Shred from Jillian Michaels. The program has three levels and usually one stays on level 1 for 10 days, level 2 for next 10 and level 3 for last 10 – hence the name 30 Day Shred. And two days into the program I realized that I couldn’t do it every day. The push-ups, the calisthenics, and the free weights – all felt very tough! So I started doing level 1 every alternate day, then two days in a row followed by a 1-day break. It took me 15 days to complete 10 days of level 1.

Then I started level 2 and couple of days later took a fortnight-long break from it. Level 2 had a lot of planks and my upper body simply wasn’t ready for it. Then I started level 2 again but on alternate days. By the first week of Aug, my body had started to get used to 30DS and I decided to add cardio to this training. Instead of usual slow paced jogging, I started with High-Intensity Interval Training (HIIT) on a treadmill.

A HIIT session often consists of a warm up period of exercise, followed by three to ten repetitions of a high-intensity exercise, separated by medium intensity exercise for recovery, and ending with a period of cool down exercise. The high-intensity exercise should be done at near maximum intensity. The medium exercise should be about 50% intensity. Depending on one’s level of cardiovascular development, the moderate-level intensity can be as slow as walking.

The first day I managed eight HIIT cycles in addition to level 2 of 30DS. Now my weekday routine was 30DS level 1 or 2 plus about 7-8 three minute HIIT cycles. Weekends I would swim to rest my sore muscles. By end of Aug 2012 my average jog/run speed had gone up to 8.5 kmph and the days I wouldn’t do 30DS I would run for 40-45 minutes. I continued this for another two months and last week of Oct 2012, I finally reached level 3 of 30DS. Level 3 introduced me to plyometric and soon a new set of muscles in my body was paining. I had to intersperse level 3 with running and swimming as my joints and muscles couldn’t take all that jumping.

The 30-day program had become more of a 120-day program for me because my upper body was extremely weak and unable to lift my own body weight while doing planks or pushups. But I knew that I was improving. I had started with doing pushups on my knees and even then I could barely touch the chest to the ground. By the end of 120 days, I was not using my knees anymore and was getting a bit closer to the ground with every passing day. I also used these four months to increase my average running speed and cardio fitness through HIIT on the treadmill.

Come Dec 2012, I started playing with various combinations – some days I would do level 1 and level 2/3 of 30DS, some days I would do 7-8 HIIT run cycles and do level 2 or 3 of 30DS, some days were only for HIIT, some days for jogging out in the open and some days for just swimming. What stayed constant was the 30-35 minutes yoga and stretching routine that was essential to keep my fibromyalgia pain under control. This variation not only kept the boredom at bay, it also ensured that I didn’t overwork the same set of muscles. Doing different workouts stressed different parts of my body and allowed the muscles to heal before I would stress them again. I had finally learned to listen to my body. Though I was still in pain and needed 2-3 hours of daily physical therapy but I was getting stronger and my reliance on painkillers was almost nil.

Thanks to physical therapy, Jillian Michaels, and HIIT, 2012 turned out to be a great start to my fitness journey. And I never looked back. I continued adding tougher longer workouts to my routine (Banish Fat Boost Metabolism, No More Trouble Zones, Shred-It With Weights and kick-boxing – all by Jillian Michaels). And one day I decided to take Insanity Fit Test – I still remember that fateful day of Jul 2013 when not only I completed it but I did it better than one of the two participants on the video. 9 weeks of this insane workout proved that I had finally conquered fibromyalgia.

I didn’t let it take my life away from me. I have better fitness levels now than before I was diagnosed. Not only I run, hike, do crazy workouts, I also completed my goal of trekking to Everest Base Camp. I was the oldest amongst the 5-member group where no one else had any disease or syndrome and yet I was the fastest and completed the whole trek on foot! Yes, I have had really bad times and very low moments where I wept in physical pain and mental anguish due to the perceived hopelessness of the situation. But in all honesty, I never gave up hope – I stayed at it, chipping away slowly till I figured out the answers.

If you want to know more about my battle with fibromyalgia and my fitness regimen, please visit my blog. 

Iqbal Kaur