I Battle Fibromyalgia, What`s Your Superpower?

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I´ve been going back and forth on whether or not to write about this particular matter, because it`s such a big part of who I am, but at the same time I really don´t want it to be. Then I thought, what if, what if there is somebody out there going through the exact same thing as me? And what if by writing this, it could somehow help. So here we go.

4 years ago, 20 year old me was sick with the flu. What I didn`t know then, was that the flu was actually mono (infectious mononucleosis), which in turn caused my fibromyalgia. After the “flu” wore off, I never really recuperated. You could generally find me either sleeping in bed, or sleeping on the couch. Some days my body would ache so much that I didn´t know what to do, and some days I felt like I had just run a marathon. My energy was gone. No matter how much I slept and rested, it didn’t help at all. My body simply shut down.

At that time I was studying Elementary Education, but I soon discovered that school was definitely off limit. Just walking to the grocery store and back again, felt like a mountain hike! Being around a lot of people was exhausting; all that talking and laughing, not to mention the partying,I despised it all. Why were all these people so damn happy and cheerful all the time? And how dared they be so healthy and normal?

One day, I was reading the newspaper when I suddenly found myself reading a very, very interesting health article. It was about two chronic illnesses that were becoming more and more usual in Norway, Chronic Fatigue Syndrome and Fibromyalgia. When I started reading about the Fibro symptoms, tears started running down my face. It was like reading about my own body. I finally understood what was wrong. I had Fibromyalgia. Pain all over. Fatigue. Brain fog. Sleep disorder. Morning Stifness. Muscle Weakness. Check, Check, Check!

I wish that everything that happened after my discovery had been just as “easy”, but on the contrary. I went to different doctors, neither of them had an ounce of human compassion, and weren`t interested in helping me. One of them said coldly that I could always try to find a rheumatologist, but that would mean being on a waiting list for about 9 months. No help? Waiting 9 months? Was this real? Was this how the Norwegian Health Care system really worked?

I could probably write a book about what happened next, but for now I`ll summarize the next 2 years. Time went by, summer finally came around and I started feeling rather normal again. In the fall, I started University again but 3 months later, my health turned to worse yet again, and for the second time in one year, I had to leave school. I hit rock bottom, and went into a long depression.

My dad came to the rescue and paid a lot of money  for me to become a member of a private Medical Health Center, where I immediately got the help I needed. I knew that this chronic condition would take time  learning to live with, so I applied for temporary social benefits, which turned out to be rather difficult. The word benefit is quite misleading. The first time I applied, they managed to lose all my confidential papers!

In the end, I did get the help I needed, and got one year of social benefits with me getting back to school as a goal. I did a lot of research and began cooking food from scratch. Industrial food was fibro trigger. BF and I started going to the gym together, and slowly I began feeling more energized and I didn`t feel depressed any longer. I lost 20 pounds. Life was getting brighter every day. The fall of 2011, I started University again, and so far so good. This spring I`ll be graduating from Uni!

  • I still live with Fibromyalgia every day. Some days are good, some days I just want to crawl into a dark place and stay there. I know what PAIN is. But I keep on fighting. I know that my will power is stronger than that!
  • Fibromyalgia has cost me a lot. I don`t have many friends left. I have more student debt than I´d like and I don`t have much work experience.
  • I`ve learned who my true friends are, that my parents will do everything in their power to help me and that my BF is the best guy in the world, and I love him so much. 
  • I know what I`m capable of. I know I have an inner strenght. I know how to live with a chronic condition, without it getting in the way of my life. I know how to enjoy life!

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So for now I`m keeping my invisible cloak and continue battling Fibromyalgia. What`s your Superpower?

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42 thoughts on “I Battle Fibromyalgia, What`s Your Superpower?

  1. Thanks you so much for sharing! I don’t have fibromyalgia but I do have recurrent chronic back pain due to two spinal fusions I had in my early twenties. The pain sucks and I live for the days when I am pain free. Does your pain come and go? Do you take any prescriptions?

    • I`m so sorry to hear about your chronic back pain! chronic pain is such a difficult thing to live with, because it affects your entire body, your energy levels and to make it all worse, it`s an “invisible” condition. yes, my pain tend to get really bad when the weather is bad, or if there`s a lot of temperature changes.
      Generally it´s like this: low pressure weather = cruel pain, high pressure weather = fairly good days!
      I use Voltaren/Diclofenac tablets or cream, combined with Ibuprofen, when the pain is bad. I`ve experienced that NSAIDs tend to help.

  2. Thank you for sharing. I must admit, I’ve heard of Fibromyalgia, but didn’t even know what it was. It sounds like you have had an uphill battle for the past four years, but you should be so proud of yourself and all that you’ve accomplished. You’re a stronger person for it and that strength is going to continue to grow. And here’s a salute to your boyfriend, your friends who have stuck by you, and your family for supporting you!

    • Thank you so much for the support!
      There´s a lot of people who don`t know what it is, and that`s ok, as long as people understand that this really is a real thing. Sadly, there are a lot of doctors and people out there that don`t think it`s a real disease because you can`t see it on a blood test!!
      yes, I`m so glad that I have my BF, family and friends who`ve stuck by. It means so much to me, because Fibro can be a very solitude condition at times. Now I`m feeling better about writing this post. I think it was the right thing to do! 🙂

  3. Oh wow, I can’t imagine how difficult it must have been to not know what was wrong and then once you did to not have a doctor that cared. I had a roommate in college who’s mom battles fibro and it has been awful because there was zero understanding of it years ago when her struggle began. Doctors thought she was making the pain up and refused to help. Anyway, I’m so sorry that you have had to face this, but I am so glad that you have parents who love you so much and a boyfriend who has been there through it all. And congratulations on being so close to graduation! How exciting!

    • It was awful! I remember calling BF and interrupting him at school because I desperately needed a shoulder to cry on after visiting that witch of a doctor!
      I`m sorry to hear about your roommate`s mom! My mom has fibro as well, and my grandma probably had it too (chronic conditions didn`t “exist” back then), and it`s just the last couple of years that doctors seems to have “discovered” that this might just be a real thing after all!
      yes, I`ve been lucky with such loving and caring parents and my BF, such a wonderful and supporting guy!
      Thanks! I´ve been looking forward finishing this BA for a really long time!:-)

  4. Fibromyalgia seems to be one of those mystery conditions like IBS that seems to affect women more than men. I think woman are prone to “chronic” types of conditions…why I have no idea. Stress? The food we eat? It’s frustrating because there is no real “cure,” just management. I do think a lot of our environment and lifestyle is a factor, and believe me when I say it’s not just you at all. We all seem to have reactions to our environment that manifest themselves in different ways. Some people get headaches, stomachaches..for me my blood pressure is a bit high, which could also be somewhat hereditary. I don’t want to be on medication, but I may eventually have to because it’s not a condition that improves with age. Still, I’d like to think that I can beat it by making major lifestyle changes..eat better. All that is challenging as we move through such busy high tech times. That’s why part of me wants to move to some mellow island and live a slow life. 🙂 Sorry this is long winded, I just wanted you to feel like you weren’t alone with something you were struggling with. Thank you for sharing and your honesty.

    • Please, wind a away! 🙂 I`ve realised by all these comments that I`m clearly not alone, so thank you for the support! Yes, it seems like a lot of women are getting more and more chronic conditions. For me it`s a hereditary thing. Turned out that my mom was suffering from the same thing, and my grandma had the same health troubles. Migraine and Fibro seems to be very hereditary along our female lines! What I´ve experienced is that industrial food triggers the pain. So I learned to cook from scratch and my health improved a lot! I think it`s a combination of genes and lifestyle! by learning what triggers it, I think you can do a lot to prevent it, or at least manage it.

      I`m sorry to hear about your high blood pressure, but glad that you`re trying to manage it without medication. I only use medication when it get`s really bad. But the fact that you`re aware of it is a good thing, and also open to the idea of using medication eventually. I hope you one day can be able to at least spend some time on a mellom island and live a slow life! I`ve already found my mellow island, it`s a Spanish Island outside of Marocco, where I used to live before I started Uni. Life there is just the best. But more on that another time!:-)

  5. Wow, thank you for sharing this! How awesome that you found the strength to open up and talk about something that has impacted your life so greatly. I can’t imagine the pain that you have been through, but I’m amazed at your positive attitude through it all. You are very inspiring, you know that?!

    • Aw, thank you so much! That`s such a sweet thing to say! I really appreciate it! Believe, my positive attitude has required some work over the years, I`m just happy to be at the place where I´m at today!:-) And hopefully inspire others going through similar things, that it gets better!

  6. Dealing with a chronic health condition is never easy. I’ve got two to contend with – migraine headaches and severe food allergies. Actually, my allergic condition is more complicated than simple food allergies, and so rare that even most allergists have never seen a case of it. It’s really taught me a lot about the limitations of medical knowledge, and the importance of being my own advocate. Fortunately I’m able to control both conditions through diet and supplements.

    Speaking of supplements, have you ever heard of curcumin? It’s a compound found in the spice turmeric (the stuff that gives curry it’s bright yellow color.) Apparently it’s a natural anti-inflammatory. I’ve been giving it to one of my cats, and I think I remember reading somewhere that it’s been used to help people with fibromyalgia. It might be worth doing some research at least.

    Take care and hang in there… it will get better as you learn how to manage it.

    Stor Klem,
    Cat

    • thanks for the support! I have migraine too, though the only thing that works with that is a dark, cold room to rest in combined with Migraine medicine. I`ve found that industrial food triggers my pain, so I cook all my food from scratch, using only pure ingredients. this has worked rather well! I guess I should look into more natural anti-inflammatory supplements, thanks, I`ll do some more research! 🙂

  7. This is really brave of you – to share this with everyone. Thank you for allowing yourself to be vulnerable as well. I pray that you continue to find inner strength and resounding peace.

  8. What an amazing first post for me to read on your blog! Thanks for posting on my blog as that’s how I discovered you. I suffer with numerous cysts & fibroids in the muscle lining of my uterus which is incredibly painful at times. Thank you for sharing your story and a part of yourself.

    • I`m glad you liked it! I`m so sorry to hear about your problems with cysts and fibroids, that sounds like an incredibly painful condition. I don`t know much about it, but I hope that there are ways of easing the pain!! We women do seem to carry a lot of pain throughout life!

  9. I am so sorry, but very glad you figured it out and are dealing with it. I can't imagine what it must be like to deal with chronic pain – health is so precious.

    • thank you! Have to say, I sometimes feel much older after everything I´ve gone through, compared to others, but I guess that`s what makes me, me. Indeed, health is so incredibly important, and sadly many people take it for granted!

    • Thank you! I´m glad you learned some more about Fibro! The more people aware of this condition the better understanding:-) Oh yes, I`ve let it hold me back too much in life, so I`m not letting it do that anymore!!

  10. Oh sweetie, I feel for you! I actually suffered from a condition called interstitial cystitis, which is an “incurable” bladder disease that causes extreme pain, urinary frequency, stomach issues, etc. Mine was triggered by a UTI. Many people with this “disease” also have fibromyalgia (I didn’t though). I won’t go too much into my story, because I think some people might take it the wrong way, but I had to do a lot of “inner work” to help myself. The pain is real, and the symptoms are real, but there is usually a deeper reason these things happen. This is actually crazy timing as I just wrote my story about my journey on tinybuddha, you can read it here http://tinybuddha.com/blog/getting-to-the-root-of-pain-to-work-through-it-and-be-happy/

    I really do have a big heart for people suffering from this. They are usually the most kind and caring people for some reason. I hope your not offended by what I said, but I just like to share my story with others suffering. Either way, I am glad your living your life and getting better!

    • I`m not at all offended, I believe that mind and body should be treated together, not separate. Often, there are underlying psychological reasons to why we get sick. In my case, Fibro appears to be in my genes, it`s found in all women in 3 generations in my family. But how we all “got” it, are different stories, but generally we were all in a light depression combined with low immune system. I think how we treat this condition has a lot to do with our mindset. How we decide to manage it, how our mental state is, it`s all relevant!

  11. Thank you so much for sharing such a vulnerable part of yourself. This is the first time I’ve stumbled onto your blog but I feel like I am reading my own story. I too am in my twenties and struggle with fibromyalgia. Having an “invisible” condition when you appear to be young and healthy proves to be quite challenging…I often get the “But you don’t look sick” response from others when I explain why, no, I don’t want to go out partying all night with you. I’ve found some relief from exercise and eating a more natural diet. Stress and a busy school life make some days quite the uphill battle. I just keep hoping that tomorrow I will wake up and feel better, and am counting the days until my schooling is done (1 more month!). I try to keep a positive attitude, pay attention to what MY body needs and take it a day at a time.
    I love what you’re writing about, and look forward to reading more

    • I`m so glad that you stumbled upon my blog! Oh yes, I`m soooo incredibly sick and tired of the “You don`t look sick” line! Why is it that just because we have a chronic condition, we`re supposed to look old and tired? I haven`t been out partying all night in years. If I go out it`s with friends that prefer hanging out at a pub. no fuss, no energy draining loud music, and only good company and comfy chairs! 🙂 I`m glad you`ve found some relief, sounds pretty much like ways I have too! I guess what I hate the most about this condition, is that you never know what the next day might bring. You can`t save up the energy. But I think this is where you have to take advantage of the days when you got a good day! Hope to see you around!

  12. Good for you for hanging in there! My stepmom suffered from fibro for years (she now takes some supplements that all but take it away: Phytaloe by Mannatech (just google them) and they also have another one called Ambrotose (original form). Those two, along with taking good care of herself, have worked wonders for her. I suffered a very similar experience after the birth of my first child (it was traumatic – we both almost lost our lives). After suffering for a year and a half, a whole foods diet cured all of my symptoms after 3 months. I no longer have to be completely on whole foods, but I do try and keep white sugar and white flour to a minimum, and that helps. And you’re right about finding out who your real friends are. Just stick with them – those are the ones you really want to have around anyway. 🙂

    • Thanks! I`m glad that your stepmom has found a way to manage it! I`ll check out the supplements, they sound really interesting! I`m so sorry that you had to go through such a dramatic experience!! I try using whole wheat flour when I bake, and use a minimum of sugar in everyday life. I´ve found that if I stay away from industrial food with crazy additives, it helps a lot!

      • It’s great that the whole foods thing helps you too. My symptoms after Maddie was born mirrored fibro and CFS, so I know a bit about what you’re going through – it’s horrible! The docs too told me that “nothing is wrong”. It’s so frustrating!

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  15. You are so brave to share your struggle with us. I am sure your story will help others, either those who also deal with fibro or it will inform those who don’t know much about it. You’ve had a very difficult path the last few years. I’m really sorry for everything you’ve had to go through, but I’m so glad that you’re doing better! You are such a beautiful and strong person inside and out 🙂

  16. I found you via your comment luv on Vanessa’s Money and with this title, I had to come say hello, fellow spoonie! 🙂
    I’ve been living with Fibro for about 17 years now, and didn’t know what it was until about 2-3 years ago. It’s most definitely a life changer as you describe and not an easy journey. Like you, I didn’t feel comfortable writing about it for a long time; denial was my way of “not allowing” it to take over my life even though it very much dictates it. *shrug* I finally got over it and talk about it as I work on feeling better.

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  19. That was a great read and a really positive slant on a negative circumstance in your life. I wish I could be that positive about everything that life throws my way!

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