Messages for other people with fibromyalgia

When it comes to sharing what works with other people affected by fibromyalgia, many of the people we talked to said this can be tricky because everybody is different and what works for some people with fibromyalgia may not work for others‚Äì it’s important to find your own way of managing how it makes you feel. However, several messages and tips were given.

The key messages for other people with fibromyalgia were:

  • Try and access support groups for people with fibromyalgia. They’re going through fibromyalgia too and so they can really understand what you’re going through.

Alexis talks about the value of support groups. If you’re not told about support groups, ask about them.

Age at interview 24

Age at diagnosis 23

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  • Build support networks around you. This can be can be through talking to others with fibromyalgia, but also take help and support from family and friends.
  • Be open to others, talk about how you feel and what you need. Chrissie said this can help people to get to know what your abilities are.
  • Try not to let fibromyalgia control or define you (don’t let it take over your life).
  • Accept that you have fibromyalgia. Accept what you maybe now can’t do because of your symptoms, but also explore ways to adapt and find something else that you can do.
  • Don’t give up hope. Francis said that there might be a cure around the corner and that like him, your symptoms can improve.
  • Find out as much as you can about fibromyalgia and your symptoms.
  • Care for yourself. Give yourself permission to say no to things and don’t feel guilty about doing this. Kristie said, ‘Don’t feel guilty about not feeling well’ and Emma encouraged people with fibromyalgia to ‘Be kind to yourself.’
  • Get to know your own body and what you can manage. Rosie said, ‘Know yourself. Get to know yourself and trust that you know yourself.’

Emma talks about the importance of listening to your body.

Age at interview 40

Age at diagnosis 38

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  • Try to access a health care professional who understands fibromyalgia.
  • Try to get the care and support that you need and don’t be afraid to ask for help or to get a second opinion.
  • Keep mobile, even if this can be challenging, it will help you to keep your independence.

Chris says that you should try to accept fibromyalgia and try to keep mobile.

Age at interview 58

Age at diagnosis 43

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Aleysha says that it’s good to find out what works for you.

Age at interview 23

Age at diagnosis 22

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  • Recognise that fibromyalgia is not life-threatening. It can be manageable with good care and support.
  • Try and find something positive, it’s not all negative.

Francis says that you mustn’t give up.

Age at interview 77

Age at diagnosis 50

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