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I was 20 when I was told that I had Fibromyalgia. At the time I didn’t know whether to laugh or cry. I’d been a fit teenager, dancing and weight lifting until I turned 18. That’s when things went downhill. But that’s a story for another post.

It had been 2 years since I fell ill and I was desperate for answers to why I was in so much pain all the time. I couldn’t take another ‘I don’t know’ from another Dr. Little did I know that it was going to be a diagnosis that would take over my life forever. Up until this point I held hope that someone somewhere would be able to ‘fix’ me. So being told I had an incurable illness that they didn’t know how I got crushed me.

Symptoms of Fibromyalgia Include

  • Widespread muscle pain
  • Headaches/Migraines
  • Muscle stiffness
  • Cramps
  • IBS
  • Loss of memory (known as ‘brain fog’)
  • Insomnia
  • Fatigue
  • Sensitive to touch
  • Muscle Spasms
  • Joint pain
  • Depression
  • Burning sensation
  • Nausea
  • Loss of feeling in limbs (Numbness)
  • Hot and cold sweats due to not being able to regulate your body temperature normally

These are just SOME of the symptoms that I personally experience daily. There are too many to list!! I often find myself laying there staring into space, numb, not even thinking anything, just empty. The nights can be crippling, the quilt/blankets can feel like weights on top of my body crushing me. Slight movement will send electrical spasms through my body. The pain can get excruciating and unbearable.

To deal with the pain I have to take Morphine amongst other medications every single day and I’ll more than likely be on it for the rest of my life. There are so many different therapies or treatments out there to try but I’ve done most of them. Some help, some don’t. Some days I feel like It’s a good day and I can get housework done, then there are the other days where I feel like I can’t take it anymore and get stuck in bed with constant tears in my eyes. See my other post on how I help ease the pain with natural remedies here.

Photo by Žygimantas Dukauskas on Unsplash

Fibromyalgia is an invisible illness. You can’t tell someone has it just by looking at them. Someone who has it may look completely fine on the outside, but on the inside are in excruciating pain. It’s said that it’s a possible 1 in 20 people with Fibromyalgia. It’s more common in women than men and a lot of people go undiagnosed as it’s a hard illness to diagnose due to it having such similar symptoms to other illnesses. If you’re experiencing a lot of these symptom’s PLEASE get some help and don’t sit in silence.

There are Drs out there that are willing to help you.

There isn’t enough awareness for Fibromyalgia out there or enough support systems. PLEASE share this post on social media to help get the word out there. There are so many of us fighting for our rights for help and to raise awareness so others don’t feel alone and show this is REAL. Chronic Invisible Pain is REAL.

Much Love – Mrs Slee-Jones xx

You May Also Be Interested In Reading –

Chronic Fatigue
Managing Pain Without Meds
The Physical Side Of Mental Health
I’m Not Ignorant I Have Anxiety
Dear Teacher
Helping A Child With Anxiety/Depression
What Is E.D.D

27 thoughts on “Being Told I Have Fibromyalgia”

  1. I am sorry about the diagnosis. There are a lot of things to consider and it is important to know all of the facts. The illnesses where you can’t see it is hard, especially when you want to be mindful of others. Thank you for sharing all of this information. Sending you lots of love.

    Nancy ♥

  2. My heart breaks for you, Reading this.
    I was 19 when I was diagnosed and, like you, felt like my whole world had just crashed around me. Its been 11 years since diagnosis now and I’m managing, some days. Other days, not so much.
    It’s a battle and we have to keep fighting.
    So brave of you to share your story!
    Please keep sharing stories like this ?
    Sending you gentle hugs

    xo Emma

    1. It’s 10 years next month for me and it doesnt get easier. It really is hard to deal wth isnt it!!
      Thankyou soo much!!
      Gentle hugs xxx

  3. It must be so frustrating to keep seeing Doctors who don’t really understand the condition and can’t offer you any solutions other than things that ‘might’ work. My Mum suffers from it too, and the only advice she got from her rheumatologist was to keep to a healthy weight! She IS a healthy weight and fights every day to do yoga or Pilates but gets so mad at her body and the waves of exhaustion.
    I’m so sorry you’ve got it so young. I really hope that more research will go into fibro and a cure or treatment found very soon.

    1. Ohh it really is very frustrating!! Feel so much for your mum, I think Drs tend to palm it off alot. Thanks for your lovley words!! x

  4. This is such a heartbreaking and inspiring post at the same time. I personally know people with fibromyalgia, and even if they don’t show it I know they’re hurting a lot on the inside. I love how you say that a lot of people don’t think they have it since the symptoms could be misleading and that it’s better to get checked than live in pain. I’m sorry you have to go through this, and hopefully one day there will be a cure. Thank you for spreading awareness and sharing your experience.

  5. Thank you for sharing this part of your story. As you said, greater awareness and representation of invisible illness is needed, and it starts with pieces like this. Have you read Show Me Where It Hurts by Kylie Maslen? It’s a great collection of essays about her experiences with chronic illness

  6. I’m so sorry that you have to deal with this pain love. Thank you so much for sharing your story. I’ve heard of this illness, but I’ve never actually understood or known what it was or the symptoms. Your story is shining a light to others who might have it and not even realized it because they didn’t know what it was. Sending you so much love ?

  7. Thank you for sharing this information and making people aware of this disease that very few people know about. I am sorry that you suffer from fybromyalgia. I have heard about this disease before so it is not new to me. It was in the context of the causes of infertility. Yes, another possible side effect of this disease. In short, I wish you all the best and a lot of courage.

    1. Wow, I never knew it can affect fertility!! Thank you for sharing that as I have fertility issues myself so this is something I can look into.

  8. I’ve had fibromyalgia for about 15 years now. I remember doctors looking at my like I was faking it just to get drugs. I cried cried pitifully once after my employer yelled at me for calling in sick two days in a row. I thought I was dying and no one would help me. I was terrified, which only made my symptoms worse.

    Hope finally arrived when my chiropractor, of all people, suggested I had fibromyalgia. I read up on it and just about everything matched! It was such a relief to finally have an answer. I took cymbalta for a few years. I learned that healthy eating and exercise would help so I changed my diet and upped my activity level. I also changed my attitude about my life. There was no way I’d let this disease bring me down and stop me from living. I fought it every step of the way with a positive outlook.

    Things slowly got better. Today, I might take ibuprofen once in a while but I no longer have to take over the counter medicine. Most days I feel fine. A day of stress or overexertion will still require a day or two of recovery, but I bounce back quickly now.

    I saw someone comment about fibromyalgia causing infertility. I can attest that this is true. However, my family now includes two wonderful adopted children. Thanks to the change in my lifestyle mentioned above, I am able to keep up with my youngest.

    1. Mrs. Slee-Jones

      This is such a lovely and uplifting comment which I can’t thank you enough for sharing with us!! It’s great to see some positivity that you’re now doing well, something that a lot of us still long for. One day at a time right?! Congratz on your children also, I’m hoping to fall pregnant someday, if not we will adopt also xx

  9. I’ve heard of this illness, but knew nothing about it until now, so Thank-you. Lots of those physical sensations are akin to anxiety and depression as well. No wonder it’s so hard to diagnose. I hope you find some form of relief for your symptoms, it must be debilitating.

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