Chronic Illness, chronic pain conditions, fibromyalgia

It took me 4 years to get diagnosed with Fibromyalgia

Everybody has a story to tell. Mine is spun into form by weaving strings of pain and strength on what seems like an endless loom. I’m a simple 23-year-old female, rather I was, until I got diagnosed with Fibromyalgia. The disorder intruded on the normalcy and simplicity of things as they used to be. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. But there is no proper explanation for how or why it occurs. The dangling question mark has left me hanging ever since.

Chronic pain has been feasting on my life for 4 long years and I was clueless as to where it was coming from. It was only recently that I’ve been diagnosed… and contrary to all the things you might expect me to feel, I feel relieved. It’s the biggest relief to finally be diagnosed, despite what it means. Let me share with you, my journey through this illness.

When I was 19 years old, I got a fever along with a severe body ache. A day later my fever vanished, but the pain remained. Like the remaining pencil marks on a paper even after erasing, the pain stayed on. It was like a muscle pain that increased with every physical exertion. For example, writing caused pain in my finger joints and my hand. I was in my 3rd year of my college and writing exams for 3 hours was getting even more challenging and painful. Similarly, climbing stairs, running, standing for a long time and even walking began to become painful. It was so frustrating to deal with it, because until that day of fever, I had always been an active person with a lot of stamina despite my thin body.

I went to see many doctors and they all blamed it on me being under weight and my weakness, as all my medical reports were normal. They gave me a lot of vitamin, iron and calcium supplements and I took those for months, always believing that I would get better. But the sought-after day didn’t come. My parents supported me, but they still thought that it was me being weak and that I would get better soon. Two years passed by, and yet I didn’t give up. I was somehow managing my pain and I eventually got used to it as my pain tolerance increased. That was one of the perks of experiencing pain every day – you learn to deal with it. But that didn’t mean that it no longer hurt. I spoke about it to a few people, but mostly kept it to myself. This illness was an invisible storm, raging on the inside, and nothing but a whisper from the outside. It was difficult for others to understand what they could not see.

I went to see another doctor, who said that I had “Vitamin D deficiency” and prescribed vitamin D supplements. In my test results, I could see that vitamin D was insufficient. I really felt good at that time because I assumed that the root cause was finally identified, and that I would soon be better. After three months, I told the doctor that I still suffered from pain. He was irritated and said that he couldn’t find any problem and that he wasn’t sure anymore as to whether it was a physical or a mental issue. That’s when my heart gave in and broke down. The worst thing you could do to a person with chronic pain is to tell them that “It’s all in your mind”. Until that day, I fought. Until that day, I never shed a tear because of my condition. But that day, I cried. I cried for many nights since. I almost gave up. I stopped seeing doctors.  I continued to deal with my pain and diverted myself with my job and by involving in different activities. I started reading lot of books, I started to write poems and publish stories.

Distraction helped me a lot and my life was back on track, until my first flare-up. My pain got severe and everything in my body began to hurt. I couldn’t sit, stand, or even lie down. At that time, I was staying near my office and away from my parents. So it was a lot to go through physically and mentally. The next day, my parents took me home and I went to see an ortho doctor. I explained my pain to him and he asked me to immediately take an MRI since my whole spine was hurting.  But my MRI results showed that everything was normal. My doctor was confused and said that it might be muscle pain and that I should start exercising. He told me that a few people are sensitive to pain and that is normal. But he didn’t have any explanation for the sudden flare. Everybody believed only what the test results said, frustrating me even more.

Each time I go to see a doctor with hope, I’ve returned home, disappointed. Let me tell you that it was not the physical pain that hurt, but things like constantly dealing with people who didn’t understand me. Everybody’s belief in me began to fade when the reports failed to reflect my internal turmoil. Doing this all alone hurt me even more. Fortunately, my parents supported me though they couldn’t understand it completely. At the time, even I couldn’t understand what was wrong. My family moved in to live with me so that I can continue with my job with their support. I was so grateful and sometimes I felt guilty for making them move. After a few months, my life began to change.

I saw a neurologist, who suggested that I join a gym and start CMS (Core Muscle Strengthening). He didn’t diagnose me, but he was one person with whom I felt understood. That meant the world to me, so I started going to the gym. Initially, I was very hesitant to exercise because I thought it was going to hurt. It did hurt a lot for a few days. But later, it didn’t hurt as much as before. After that, I started doing many things which I usually avoid, like taking the stairs instead of the lift and walking every day at least for 40 mins. I was doing things which I thought I could never do. I realized the power of exercise and one more important thing. I realized that limits only exist in our mind. I was managing my pain very well and pushed myself more, but at the same time, whenever I felt like I needed a break, I would let myself rest.

Things were going well, and then suddenly, I got a neck and shoulder pain which travelled to my back. I was also suffering from severe fatigue and chronic head ache. This continued for days, so I had to take a break from my physical therapies. Once again, it was a tough ride for me. Whatever I built up in the past few months physically and mentally vanished. I felt like I had to start everything all over again. It was the worst feeling. I remained patient during my worst days and kept telling myself that I would get better soon.

I continued to read articles about fibro and told my parents and a few close friends about it. Then, through an online support group I met a “Pain Specialist”. I can’t express how glad I am to have found Chronic Pain India on Facebook. That doctor was everything I wanted a doctor to be. He completely understood my situation and diagnosed my condition as “Fibromyalgia”. He appreciated me when I told him that I keep myself active despite my pain and said that I was already making progress and that I would get better soon. I was literally crying when he said that. It was an immense relief to finally be understood. I was also trying to find alternatives by attending a basic workshop on “Pranic Healing and meditation” which also helped me with my pain. Currently, I am undergoing treatment and I am hoping for the best.

It took me four years to get diagnosed and start proper treatment. Finding the correct doctor was one of the major challenges. Lack of awareness about the chronic pain illness was the main reason. Even doctors are unaware of these rare conditions. My pain found a name, and so I found my voice. I am now being open about my condition to others. Even now, a few people understand and few don’t.  But spreading awareness could help other chronic pain warriors. So I am taking this opportunity to help and motivate people with chronic illness.

On a positive note, I want to let you know that this illness had changed my life in a positive manner as well. I now lead a healthier life-style. It also gave me a new perspective. Facing all the challenges by myself made me grow stronger than ever before. It taught me to live in the present and to be happy. Staying positive was itself a challenge. But I’m proud to say that I have tried to stay positive at most times. There was no time at all for small worries. At the same time, small reasons to be happy often made my day. I remind myself to be grateful for all the blessings I possess, instead of worrying. I might not lead a normal life, but normal is overrated. I now live with a purpose. I will fight again and again. That’s what matters at the end. My will power knows no obstacles.

Thank you so much for reading.

After sharing this, my heart feels so much lighter. Please know that you are making me feel better just by reading this.

Warm Regards,

Uma (a chronic pain warrior)

The story was edited by Ashwija 

Every day I wish for the miracle to happen. My life had changed in a day, so it could change back in another day. In most of the stories I have read, the main characters would always face more challenges and hurdles in their life. But towards the end of the story, everything would work out and they would get a happy ending. I wish my story would end like that. I wish all the stories of our chronic pain warriors end like that. I wish everything would work out for the best for all of us and something magnificent awaits us after walking through the pain. For that, I believe that spreading awareness is the first step. Let’s take that leap.

5 thoughts on “It took me 4 years to get diagnosed with Fibromyalgia”

  1. Uma , thank you for sharing your story . It will definitely help a lot of people in the same & similar situations fighting their wars all alone . Most of the people don’t understand the pain a chronic illness patient goes through. Good to know you have handled so many things while suffering from the pain all along and are still doing . Your power to conquer this pain , will always be there because of the positivity you have in your thinking & attitude. Wish you well . God bless you .

  2. Detailed article explaining the chronic pain and I am sure it would definitely be a guidance to people who have similar pain. Wishing you a speedy recovery Uma.

  3. Congrats with your diagnosis. I remember what it was like when I was finally diagnosed with Chronic Fatigue Syndrome… it was better than being told it was all in my head, though not by much as many doctors at the time didn’t believe this was a real illness. I was probably in my late teens at the time, having suffered since I was 12, having to quit school because of the pain I was in. I thought my life was over. It’s been around two decades since those first dark days and life does go on. Having to live it so focused on balance brings us closer to our own spirituality and the people we chose to let in. So it’s not all bad. Wish I had learned that at your age! It would have helped me avoid quite some trauma! Keep on fighting the good fight (and writing and sharing, that’s important!)

  4. It took me nine years to get a proper diagnosis. The doctors for years didn’t diagnose me with the right thing; they keep giving me diagnostics for the symptoms; asthma, lockjaw, arthritis… and so on. The only times I got a accurate diagnosis was when I did all the research myself. I am now sure it is fibromyalgia. After growing up being told “it is all in my head’, it is quite relieving to know that there is a diagnosis behind it, and that there are other people who share the same difficulty that I do, regardless if the pain goes on. I’ve gone through seasons, like waves, over the years, where some times I will know “it’s all okay” and I will handle it with strength, and other seasons where I am just so weary of it, and I wish, and pray that I will be healed. But now, I feel I am being prepared for something the Lord has for me in my future, that while pain stinks, it makes me stronger, and it helps me understand other people’s pain and struggle. Being told “it’s all in your head” was a painful trial for so long, and it helps me, not only to not think that way of others, but it was so relieving to realize, and KNOW that it isn’t all in my head, though at sometimes I did wonder if it really was.
    Thank you for sharing, this was actually encouraging.

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