Advice?

Hi there, I am a young adolescent girl who was given a diagnosis of Fibromyaglia yesterday.

I recognise there are not many new sites or advice on the condition especially for young people like myself. The advice given either contradicts itself or is old information.

Can anyone(including young people like myself) give advice on dla, how to cope with it and alternative medications or things that ease pain?

Thanks, fibrogirl3 :)

10 Replies

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  • I'm only just about there in getting a diagnosis in my late thirties but recently met someone who was diagnosed whilst at uni, so about 18-19 years old. She has taken the approach of losing weight (she was overweight, lost over 3 stone and is now 'normal' weight) she said that helped a lot. She tends to try and avoid prescribed medicine where possible and has chosen to look closely at the type of food she consumes as it is believed that some additives / food ingredients can exacerbate symptoms. It seems to generally be working for her at the moment.

    I am on the other hand, fairly early on with fibro am trying to lose weight (it's not as easy as you get older!) but am on pregabalin . It's taken a little while to get used to but I do think it is generally helping somewhat.

    Unfortunately there is not a 'one size fits all' when dealing with fibro, it's a case of experimenting to see what works best for yourself.

  • Thanks so much for your help and great advice! :) I've started to have a look at my diet and working out ways to supplement things like fish(as I am allergic) with other foods. I guess it is an experimentation and not one size fits all like you said. Thanks again. 👍🏾

  • Chocolatemuncher has got it right with 'one size fits all' being the last thing that applies to Fibro. It must be horrific being diagnosed so early in life, but on the bright side you will probably see a cure in your lifetime.

    I have a niece who has had Fibro, coeliacs, CFS for years. She ended up in a wheelchair for six months when she was doing her GCSEs. She was very ill but nobody in the medical fraternity took her seriously because she was so young. They referred her to a psychiatrist in the end as try thought she was putting it all on! At least you have been taken seriously!

    She has learned to 'stand up' for herself. She will be completely honest with friends, and tell them that she can't do something because of her medical condition, and offers up an alternative they can all do. That would be a great tip to follow. She is never negative about her limitations, she turns it to her advantage. She is now 30 and is in complete control of her disabilities. She learned by trial and error. The same with her meds. She tried different things, went back to her GP when something wasn't working and discussed it with her. Half the battle is having a good Dr who understands what you are going through.

    I hop that has been of some help. Heat is my friend. If I'm in pain I apply heat. It will never take the pain away, but it makes it bearable. You may never get total relief, but any reduction in symptoms is a good thing. You will get there! 🐸

  • Thanks Sorebones, I realise it will be a struggle as my 'friends' are not the most accepting or supportive kind. Unfortunately they would not want to do the alternative ,but it is a blessing in disguise and it allows me to break away from them. None of them know as yet.

    My family is very supportive and thankfully so is my doctor. It has definitely has been help and allowed me to think about different aspects of my lifestyle.

    Sometime the cold helps sometimes the heat helps. I guess it's just a balancing act.:)

  • I'm afraid learning about life with Fibro is a continuous lesson. Trial and error. That includes treatments and meds too.

    I love a good massage, especially an aromatherapy massage. It is a gentle massage and suits me. Some members like a deeper massage which goes deep into the muscles. I used to love that, but can't take it any more so I stick to aromatherapy. It gives me a new lease of life, even if it is just for the rest of the day. 😀🐸

  • Aw great! Maybe I should try those.😋

  • Heya, hope your having a good day. Although you have fibro not ME, here is a link for benefits info from AYME, which might still be useful.

    ayme.org.uk/benefits

    Id say with fibro you have to find out what works for you, but most people find it helpful to work out roughly how many 'spoons' ( imaginary units of energy) you have on average per day, and try to stick to that. If you stop activity before your spoon limit is up, you will manage the illness better. Its frustrating when you want to do more, and sometimes its worth going over, but most days its a good idea to stick to it.

    I find warm water eases the pain, and stress reduction, such as gentle yoga, reiki or meditation.

    Make sure you always do something fun every day, and try not to put pressure on yourself, or accept other peoples pressure to do this or that. Make sure you have as much support as possible.

    Fibro can be horrible, but im sure you will find ways to manage it and reduce your pain.

    All the best xx

  • Wow thanks for the energy technique, it really gives me something to 'share' out my energy when doing daily activities. :) I really like yoga and light swimming so maybe I should get back into that. Thanks for your wonderful advice.

    All the best to you too xx

  • You're very welcome! Hope to see you around the board 😊 Xx

  • You too😋 Xx

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