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The reality of fibromyalgia and other chronic pain conditions

The reality of fibromyalgia

Sometimes my body tells me not to do something, so I listen. But sometimes this is difficult... like when I am at the beach, with my grandsons, and the pain just hits me and I know I will be overdoing it just to drive home.

So what happens then?
My whole body, which only had minor aches and pains, goes into a three day flare. Most people do not understand this.
People with fibromyalgia understand that to just cope if we do one thing today we need to rest tomorrow. We are not lazy... we are living with an ongoing condition.
What comes to mind is a sick animal, licking it's wounds. In nature this is an accepted thing. We humans need to understand this too. We live, day in and day out with chronic illness. Fibromyalgia is enough but many of us also have other chronic pain conditions.
We need to look after ourselves and understand that many people, even the ones we live with, will just not ever understand. After all they cannot see the everything we feel on a daily basis. Fibromyalgia is after all a mostly invisible illness. Many illnesses are.

Fibromyalgia is a mostly invisible illness.


So what can we do?
Practice compassion for ourselves, look after ourselves, set boundaries and don't feel guilty on the days we need to recover to our normal. Also realise that our normal is us working hard... our bodies and brains are getting a constant workout. No wonder we are beyond tired!



So what can you do when you have to keep going in this world of people expecting us to be normal?
  • Schedule rest days or if this is not possible rest hours.
  • Stock the pantry and freezer with foods that everyone in your house can easily prepare.
  • Turn off your phone.
  • Put a do not disturb sign on the room of your door.
  • If you have children create a backpack or box that only comes out on these special rest times, stocked with activities that your child can do on their own such as an age appropriate puzzle, art equipment, game, treat food and book. Tell the children that it is rest time and they can either have a nap or play quietly with these activities.
Create your own rest day kit: mine includes:
Create your own first aid kit: mine includes:
  • a person I can ring or hug,
  • some strong pain killers,
  • a heat pack,
  • a cold pack,
  • some Rescue Remedy,
  • Arnica cream for bumps and bruises
  • a darkened room.
I would love to know what else you would put in your rest day or first aid kit? Please let me know in the comments.

Since writing this post I have created a toolkit of sorts inside an amazon store where I have listed many of the things that help me cope with fibromyalgia. Please visit my store here.

The reality of fibromyalgia

10 comments:

  1. One thing that has helped me to have compassion when my body is hurting is to see my nervous system as an overprotective best friend. I remind my brain that I'm okay. I don't have anger.

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    Replies
    1. That's an interesting concept Katie, thanks for sharing. I think the things we say to ouselves do have a positive or negative affect upon us. Great tip.

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    ReplyDelete
  3. Those are great lists. I usually also include some essential oils in a diffuser, an epsom salt bath, magnesium lotion, and lots of water and hot tea.

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    1. Thanks for these additions... many people love and benefit from epsom salt baths but alas I can no longer get in and out of the bath due to a muscle disorder. Water is essential. Magnesium lotion is one I should try. Unfortunately essential oils (which I love) are now a no go for me due to salicylate intolerance and MCS (multiple chemical sensitivity). Oh woe is me! (said sarcastically) Thank you though as others will benefit from these great ideas.

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    2. Lee, you mention MCS, which I find really interesting. I have MCS too and have had it since I was a very young child. It is not anything I have ever been to the doctor about - it's just always been a part of who I am. Some of my worst triggers are petrol, chlorine, some plastics, some recycled cardboad, certain drugs, smoke (including dry ice and fake smoke and asthma medication in a mask).
      I get very nauseous with some smells - even making me physically sick, and some trigger asthma attacks and other breathing problems.
      I have read that the condition is not medically recognised (which is why I haven't bothered going to the doctor about it), but i am convinced that there is a link with general high sensitivity (and therefore also fibromyalgia).

      Have you written a blog about this? I would be really interested to learn more about it.

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    3. Hi Becky, it's intersting to hear from you are all the things that trigger your chronic illness. Sad that you have had these for such a long time with no support. I must say I receive no support for this condition either. My son or daughter will pump the petrol into the car when they are over but that is about it. I have written a post about it here https://fibrofiles.blogspot.com/2017/06/multiple-chemical-sensitivity-and.html

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  4. I absolutely love these tips. I was doing some of these but I'm adding all of the others. I want to share these tips with my fibro/Lupus group. I know they can benefit from this. Thank you so much for sharing this with us.

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    1. Hi Mari, great to hear from you and hope your group benefits from the tips for living with fibro or any chronic illness really. I have autoimmune conditions too, but not lupus, so I know they may help.

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Thanks for your input