My bf has recently been diagnosed with fibromyalgia and ME his only 31, he is really struggling as well as me. He feels like a burden and that it isnt fair on me to have to support him. He is refusing to start medication which is frustrating me and i feel like im struggling to keep him positive as well as myself.
Any advice will help
hi @Chellylou92 - perhaps lean into the support groups: https://www.fmauk.org/
there are regional contacts according to the webpage -
https://meassociation.org.uk/
may be talking to others could prompt him to start medication and enable you to both chat with people going through similar symptoms.
31 is so young, but Iâm guessing this isnât rare.
sometimes itâs not about âkeeping positiveâ but more about accepting the YUCK of it all and figuring out how to navigate through it allâŚputting a smile on for the sake of smiling doesnât helpâŚjust buries and bottles things that need to come outâŚ
the carers UK helpline may also have ideas for you
Perhaps reframing things to - 'âwe need to figure out how to get through this and get the right support for BOTH of us - different things we each needâ l-âŚE.g. list out what support you both need day to dayâŚputting things in practical terms can make things more actionable and less âtheoreticalâ burden stuffâŚDoing it together can poss help unravel any guilt / expectationsâŚ
hope that helps xo
Definitely take the âletâs fight this togetherâ route.
How is it affecting him at the moment?
my husband got fibromyalgia and ME it donât get better it get worse so i not wont you are going thought if you need someone to talk to you can talk to me
Hi @Chellylou92 ,
I agree with Victoria re specific fibromyalgia and ME and online forums (in addition to this one). Sharing experiences and its will help. Also reading otherâs experiences of meds and holistic treatments to help manage symptoms may well persuade your bf to try them out.
In some areas the NHS run ME and fibromyalgia courses for those affected. The people I know who have attended have found them very helpful. Anxiety about a condition makes the pain feel worse - the courses really help with strategies to understand and manage the pain.
Medication especially for managing pain at night and so getting decent sleep really helps with daytime quality of life and pain management too.
A friend of ours with fibromyalgia (sheâs had it years and is now in her late 50âs) still rides her horse and teaches fulltime. Another friend with ME and fibromyalgia changed her job and now works part time which she finds more manageable.
It can be very difficult to live/share time with someone who is feeling negative, but a wise poster on here Mrs Average used to say modelling coping strategies - eating healthy food, getting enough sleep and exercise can both help you cope and encourage BF to do the same.
Hello @Chellylou92. I canât speak about the ME side of things but I was also 31 years old when I was diagnosed with Fibromyalgia, I am almost 55 now. Yes, I remember feeling like a burden to my parents who cared for me when I was first diagnosed. It is hard to stay positive because itâs like a vicious cycle: pain = low mood= lack of motivation= lack of movement=pain. I didnât want meds either in the early days, but please encourage him to take them as they will take the edge off the pain and then he will hopefully start to feel more positive. Sleep, exercise and diet are the foundation of helping fibromyalgia. Contact me anytime if you want to ask anything or just for someone to talk to.
Thanks @Victoria_1806 for sharing this link to Fibromyalgia Action UK. @Chellylou92 and any other members who are experiencing Fibromyalgia or are interested to learn more about the condition, Carers UK is running an information and support session with FMA UK on 17 July (3-4pm).
If you would like to attend please register through our Share and Learn page:
https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/online-meetups/share-and-learn/#