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The UKFibromyalgia Forums • View topic - How do I cope as a young person with FM?



How do I cope as a young person with FM?

Any tips on what helps you including alternative medicine.

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How do I cope as a young person with FM?

Postby Miss_Riot » Sun Aug 19, 2012 8:22 pm

I've had the symptoms for a good while but only really notice them getting severe in the past year. In that year I very quickly went from someone who was inteligent, quick witted, reasonably confident and very able to walking with a stick pretty much all the time, spending at least 2/3 days a week in bed, not being able to go out of an evening, not being able to work and pretty much seeing my life crumbling apart.

I'm 22, I have a degree and a make up artistry qualification, yet I cannot pace myself - I really don't get on with the spoon theory and I can't work out when I've done enough. The impact its having on my social life is emmence - I don't really socialise anymore, its totally dented my self confidence and the effect its having on my mental health is awful - some days I just feel like dying. I often can't cook for myself, and I can't keep up with chores (I've lived by myself since I was 16 so I've had plenty of practice!)

I have no family to get help from, I'm just scraping by on benefits - I'm trying to get myself back up to being able to work 16 hours a week but theres no way I could do it right now. The only advice I've been given is to do pleasurable activities - which is pretty difficult in this much pain! Even sedentary thngs like knitting have become difficult.

What do I do? How can I cope with this horrible condition and have a life thats not vastly different from someone else of my age without this condition?
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Re: How do I cope as a young person with FM?

Postby FluppyPuffy » Sun Aug 19, 2012 9:23 pm

Start by finding the right way for you to pace yourself. For some doing an activity for a set time then rest for the same time before you carry on works. Try it for a while to see how you get on with it. If the timings don't quite work for you, make a change to how long you do something, but leave the rest period at the original length of time you started on, it could be a longer rest period is what you need.

Listen to your body, if it seems like you could do something, then do it but stick to your pacing rather than going OTT with things. On the days when it feels like you're at the top of your pain levels, then rest until things start to settle back down, then start to gently do things, building back up to how long you do them for.

I personally don't go with the spoon theory either, it isn't the right way for me to manage things. As for finding out when you have done too much, the more you get into the way of pacing for the, the more little things you will hopefully notice that are like little warnings of what could happen next. These could be anything from a stiffening in fingers thru to a change in how your pain may feel, not just intensity but something like feeling like it is going right the way thru to the centre of your bones.

FM has had an immense impact on most of our lives, work wise and socially, and we now live a different way that non of us expected or intended to to do. With taking some time to find the right way to do things for you, it is possible to have some pleasure and enjoyment. There's no guarantee that it will be like you used to have, but it is possible to have a balance that is right for you.


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Re: How do I cope as a young person with FM?

Postby denys » Sun Aug 19, 2012 9:46 pm

You may benefit from a support group of younger people, ask your GP if they have any information and maybe your local social services department. We can offer you support and advice but people your own age will be able to talk about the practical problems you face. Post on the teenagers with FM board, I know you are a bit older than that but a lot of young people your age post on there and they might be able to help you :-D :-D :-D :-D
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How do I cope as a young person with FM?

Postby Miss_Riot » Sun Aug 19, 2012 10:34 pm

I'm friends with someone else my age locally through the local support group but she lives with her partner and has support from him. I'll give the teenagers section a look at and see what people there say.
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Re: How do I cope as a young person with FM?

Postby Elspeth » Wed Sep 05, 2012 7:05 pm

Sorry to hear that you're in such an awful situation. I think the hardest thing must be not having the support from family members.

I'm 23, had to drop out of uni last year because my various musculoskeletal problems and fibromyalgia were in crisis mode and I fell apart- physically and mentally. I definitely felt/ to some degree still feel like my life has been taken from me when I'm supposed to be in my prime, having all sorts of adventures and living an exciting, independent life. At first I was extremely depressed and suicidal, went on Duloxetine, got some counselling, saw a psychiatrist, worked on my problems and I am now only occasionally slightly depressed (not surprising considering the pain).
Similarly to you, I've had some fibro symptoms for a couple of years but only full blown fibro for a year and a half. It's been a huge challenge but I've managed to finish my degree from home. What's your degree in? One of the most daunting things for me is wondering if I will ever be able to work, and if so, what will I be able to do? Some kind of flexible self-employment I imagine. At the moment I think I will try to do a PhD at some point.

I think it's incredibly hard being a young adult with fibromyalgia. People seem to be loathed to accept that a young person can have so much pain in their body, and be so disabled by it.

As for socialising, I completely understand. I often feel unable to hold a conversation, feel completely disconnected and distracted. The way I like to keep in touch with friends is inviting them round for dinner. I know you said you can't always cook for yourself, and i'm the same.
What I do is prepare a meal over a day or two, spend twenty mins making one thing, in the fridge, keep it simple, another half an hour when you feel like it, then in the oven/microwave to heat it when they arrive. That way you pace yourself, and most of all you are able to stay in the comfort of your own place, with the furniture you know you can collapse on if it gets too much.

I've found it takes time to realise how to live your life with fibromyalgia... It gets better with time. Even if your symptoms stay the same, your management of it will improve as you understand it more.

Have you been to a pain management course yet? They do one in Bath at the RUH, not sure how far that is from you.

Personally, I've been through the grief of it all. I am still in incredible pain almost all the time, but I see it as a challenge to overcome in whichever way I can and, it probably sounds cheesy but, I think I have gained perspective on life and what's important... but also it makes you compassionate about disabled and sick people in general. You have to be more creative with what you can do... I've thought about maybe starting my own home business. Could you do something similar with your make up artistry?

I'm sorry I don't have more advice. I don't know any other young people with FM and I'm always interested to see other people's experiences.

:-) :?: :idea:
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