What advice would you give a student nurse wanting to help people with fibromyalgia?

[Lizardelle]

I have a friend studying to be a nurse and he's interested in learning about how to best help people with chronic pain. I thought I'd open it up to all of you rather than give him only my own experiences! Is there anything you would want health care workers to know about chronic pain and how to help you?

[Painny]

I’d say don’t judge a patient by the look, on the surface we may look ago edited: it should be OK NOT ago, always the words I have in my mind come out different on paper 🤦‍♀️🤦‍♀️🤦‍♀️) but broken inside! Personally I’m ache and pain 24/7 from pain and I want to die sooner rather than later even though I love living….a sort of dichotomy!?

[Cat00]

I agree with Painny 100% I can come across as quite easy going and bubbly but really my life has been totalled. I learnt a long time ago being permanently depressed in front of others leads to isolation and irritation.

I would also highlight that although we should be used to new and different unexplained pain it doesn't, it seems, make it any less frightening for us. Plus we can have cancer and fibro. My mothers ailments are taken a great deal more seriously than mine which isnt right or fair.

Also don't underestimate the impact on our lives of the comorbid conditions that accompany fibro. Insomnia has been very destructive for me, going on holiday is too expensive as I need my own room, if I go out in the evening, ( very rare ) or even watch a very stimulating program on tv I don't sleep. But worst of all is that I cannot sleep in the same room as either of my children, I can't sleep if I'm in charge of them either so my husband has not left them for a single night for 7 years.

Its not just pain, which is bad enough really.

[Misty-lady]

I had a 33yr career as an RGN & the best advice I can give your friend is pain is what the patient says it is …. Chronic pain presents very differently from acute pain & the response to medication is completely different (as we all experience!). Being believed is a huge relief for the patient who otherwise looks well, whose vitals can appear normal range etc so listen, really listen to your patient. Not just what they are saying but how they present/move/react too. Advocate for those who struggle to make themselves heard & never underestimate the impact of your time with patients - care & compassion shown will help more than you realise.

Good luck to your friend in their career ….

[Roo1972]

Listen and I mean REALLY LISTEN. Acknowledge that what I'm feeling is real (just because a blood test or MRI doesn't confirm it doesn't mean it doesn't exist). The best experience I had was A&E on Christmas Eve's morning. A young trainee doctor gave me 10 minutes of her time just to cry (I was in sooo much pain I couldn't think straight). There was nothing she could do - she could only confirm I wasn't having a stroke or a heart attack but the fact she just sat there, let me cry, acknowledged my pain, that it was real, that I wasn't making it up actually got me through Christmas when I felt so so dark.

[Sally444]

I would say that I manage to get through the day and seem ok on the outside but inside I'm so, so tired. Pain is tiring and depressing and it prevents you from having as much fun as you could or makes you envious of others who can run around whenever they like. But the thing I find hard is that it makes me feel like I'm going mad sometimes....am I making all this up,?? Am I just weak compared to everyone else? Would my partner be better off finding someone else who can do all the fun things in life? It can be very confusing and make you feel like you are worth less than other people. I also feel like I'm 'the difficult one' if I can't do something that others want to do. It feels quite lonely and can make you feel sad. And this is me having a good day! Lol. 😊 Overall though, I think the lack of sleep and constant tiredness is my biggest issue.

[Midori]

Believe us when we say we are in pain; nobody else can use our senses, as we cannot use another person's.

[Hazel_Angelstar Administrator FMA UK Staff]

If he gets in touch with the office, we can send him out some information resources which may help. Booklets are online at fmauk.org/publications or he can drop me an email at [e-mail]

[JayCeon]

All of the above. Also, I'd infer from that and also add that the more & longer we try to keep up seeming normality by hypering ourselves with cortisol/adrenaline for a few hours which others see, the worse we will feel afterwards when we are at home / alone. Others can help us by respecting or even helping us pace, keep under our limits, keep to the sweet spots.There are a great many different kinds of pain, some of them we can get used to, others we can't. I'd especially differentiate single fairly localized pains, which may alternate, from Ache all over. Some of us have hyperalgesia and allodynia, quite a few are said to have a low pain threshold, but a high pain tolerance. The scale from 0-10 differs from person to person. My wife sez my 7 (crying, crying out) might be 12 for others. He'd also do well to look at memes & pics visualizing invisible chronic pain illnesses.