Explaining Fibromyalgia to Others

Living with Fibromyalgia is hard enough, but getting others to understand it, is often difficult, especially when you look ‘normal’ on the outside. I decided to write about my experience in the hope that it would enable those closest to me to understand how it impacts me. I have had such a positive response from friends and family that I realised that my piece of writing might help other sufferers explain this complicated condition to their loved ones. I couldn't see an option to attach a pdf on here so I have put a link to the article below, just copy and paste the link into your browser and open the pdf link. Feel free to share it or edit it to fit your own symptoms:

beachwaves2.wordpress.com/2...

I hope this helps someone :-)

31 Replies

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  • Your blog is most helpful. Thank you

  • so glad you found it useful! x

  • that was really explained well, i also have tmjd and fibro, trying to keep working but struggling.

  • Thank you! TMJD is very painful, I do find the upper mouth guard helps when i sleep. It is tough to work when you are in pain and fatigued. I had to change career and find something I could cope with. Keep strong and thanks again for reading x

  • Hi,

    I just read your piece. It's really good and describes the variables of fibromyalgia so well. I may print it out for my in-laws - they're up for Christmas ;)

    A couple of comments. Firstly, I think you're the first person with fibro that I've read also has ovulation pain. My doctor and I were struggling to figure out what the pain I kept experiencing was (this was prior to my diagnosis of fibro) - even now I remember what an awful, agonising pain that was. After ultrasounds, etc, she eventually prescribed the contraceptive pill, which I take 3 months in a row, no break, to stop me ovulating. She said if the pain didn't come back, that would suggest ovulation pain. I didn't get the pain back. I don't like being on the pill, but having stopped it twice in the last 3 years and getting the pain back, I've decided adding one more medication to the pile isn't that bad really. In fact I said to my OH, if I ever suggest coming off this again, remind me how bad the pain was. Anyway, it was interesting to see that you also suffer from this. I wonder how many others do.

    Secondly, I love the cartoon "you don't know what fatigue is until you've had to rest after taking a shower". Very true :) In fact, I only tend to have one now if I'm going out or someone is coming over - neither of which happens often ;) My poor OH.

    Thanks for sharing - I thinks it's a great description and well written!

    Pip xx

  • Thanks so much for reading, and taking the time to leave feedback. That is so interesting that you too suffer from ovulation pain. I have struggled with ovulation pain for years. Its not to one side and over within 48 hours, its constant lower tummy pain right across my lower abdomen. It lasts for up to 8 days each month! and feels like a hot burning sensation. It makes me feel nauseas and I have actually passed out from it before. I had scans and a laparoscopy to see if there was something causing it, but they all came back clear. As its around day 10/14 of my cycle the doc confirmed its ovulation pain, so she put me on a pill but unfortunately I still ovulated on it and still got the pain so i came off it. I ended up having Accupuncture and that actually really helped. I still get it now and again but not as bad.

    Thanks again for taking the time to read it, and I hope you continue to be ovulation pain free!

  • I think as long as I keep taking the pill I'll be ok, thankfully. That was one pain I was struggling to cope with. I hope the acupuncture keeps working too :)

  • Thank you so much for sharing this. It is an excellent piece of writing that gives a brilliant insight of what we go through on a daily basis.

    The worst thing for me has always been that I look absolutely fine especially if I have made an effort and put some slap on my face!!!! That doesn't happen every day now I have given up work but if I am going out I do like t try to take pride in my appearance if I can.

    This will be shown to friends and relatives as it is so we written and will help them to understand me a little bit better.

    Thanks again.

  • Thank yo so much for reading, I am so glad you found it useful and can share it with your family and friends. I know what you mean about making an effort and then people saying "well you dont look sick!" - hopefully know they will understand that just because you look ok, doesnt mean you feel ok! xx

  • Thank you so much for sharing this with us all beachwaves2, it is really informative and very, very useful and inciteful.

    Thank you

    Ken

  • Thanks for reading! I really appreciate your feedback and i am so glad you found it useful x

  • Very profound, thank you, x

  • Thankyou for reading and taking the time to give your feedback x

  • Thank you so much for writing that, I am hoping to print it out and keep with me. Then I can just pass it to someone to read when they ask that inevitable question "What is wrong with you?" Or "what's that then? Well written and explained. MariLiz x

  • Thank you for reading! I am so glad you found it useful and feel you now have something yo can turn to when people start questioning your condition x

  • Thankyou for sharing that beachwaves it is a very good personal explanation and I agree some people I know could do with reading it :)

    I also like the fact that it ties in with my theme for Fibro Hibernation Club this week discussing how to explain your pains and fatigue to others :) You can read what things some of our other members do to help communicate to their loved ones by following the link below :)

    healthunlocked.com/fibroact...

    Wishing you wellness and sending soft fluffie hugs your way :)

    xxx sian :)

  • Thank you for reading! and thank you for the link! It is always comforting to be able to relate to others x

  • I have pasted a link on my post for your(this) post too so members can click and read your blog from there also :)

    It is truly amazing and very well compiled, easy for people to associate with which makes particularly good :)

    Wishing you wellness and sending you Fleecy Fluffies and smiles :)

    xxx Sian :)

  • Congratulations... this is a truly amazing article that you have written. It explains my life in a nutshell!!

    You must have put so much hard work and energy into writing this.

    It would be great if all health professionals could read this.

    Well done it is a great achievement and I will definitely be sharing it with others :) xx

  • Thank you for reading! so glad you can relate. It was definitely worth the effort in writing it if it helps other people x

  • that's a brilliant read..sounds like I wrote that...its just me..thank you

  • Thank yo so much for reading, I am so glad you can relate x

  • Beachwaves, Thank you for expending what must have been a tremendous amount of energy to write this. It's a great piece ~ very informative and intuitive. A friend of mine (a nurse) once said to our group assigning committee jobs that I might take on a "less physical task" because "anyone can sit at a computer." On the contrary: it's very hard to sit and work at a computer if you have Fibro, which we all know involves our eyes, head, neck, headaches/migraines, back, hands ~ I could go on and on ...

    So we know the difficulty of writing even a simple article, and we appreciate your efforts on behalf of all of us who can now use this as an explanation ... I wish I would have had something like this to share with the group at the time. Her comment shows that even friends, who should be informed, don't always understand Fibromyalgia.

  • Thank you so much for reading! yeah it took ages to write, people dont realise what we go through in order to complete a task. We take our bodies for granted until it doesn't function properly. It Must have been so frustrating for you when someone just doesn't get what you are going through. I hope you can use my article to inform people what it is really like to have fibromyalgia x

  • Your article is great!! it really helps!!

  • Thank you for reading, I am so glad you found it useful :) x

  • Stunning. Fantastically written and perfectly explained.

    Thank You for sharing, this will help explain our battles with Fibro.

    Hoping today finds you a little better than yesterday.

    Blessings Be

  • Thank you!! so glad you found it useful :)

  • Excellent read, me in a nutshell with loads of extras on top :-) x really enjoyed ur story hun x

  • Thank you! glad you could relate to it x

  • That's a really good and useful article. Full of excellent graphics and ideas for explaining. Thanks for posting the link!

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