Bad day

This is especially hard for me cause I know I don't have much future. I'm only 16. I'm stuck in bed till 12 most days before I force myself to go to school and even then the depression and anxiety that seem to come with it just make everything so hard. My doctors can't do much in terms of giving me pain relief either since I have haemophilia so I can't take ibuprofen or aspirin and my body is too used to paracetamol

I haven't left my bed today. It hurts especially bad when I have major depressive days :/

10 Replies

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  • Hey,

    I know it's so hard and I've been young and stuck with this illness but please don't say you don't have a future!!! Many of us on this site including myself have completed education, work full time and still enjoy our lives!

    I'm now 24 but was barely 19 when I got ill and I understand that it hits you like a tonne of bricks and everything changes and it's so hard to cope with but you shouldn't give up. You learn to cope so much better and you find out what works for you!! If you can't use tablets what do you use? Xxx

  • I've been dosing up on codeine at night but that's it really. Tried acupuncture but it was too painful. I only talked to a couple people about it but they don't understand so I get the "you'll be okay" or that rubbish. I just don't know what to do anymore and I don't understand why x

  • Hi Erinabrow2,

    I've had fibro for years & have days when I think what's the point but then I realise what I can do rather than worrying about what I can't. Like Danniellegemma said there is a future for us all but we need to learn about how our bodies work with fibro.

    I know it's hard but you can do it, don't give up. Xx

  • Okay so what do you enjoy? What was your thing before fibro? So I use a TENs machine which you stick onto the area that hurts and it sends gentle vibrations that stop nerve endings firing that works quite well. I use magnesium spray that helps me sleep at night and also Epsom salts in a hot bath is really good! I enjoy reading so when the pain is unbearable I try and throw myself into a book (not literally haha!) so you aren't alone now because you have all of us xxx

  • Hi hon iv had depression, anxiety and split personality disorder since I was 16 then the fibromyalgia came when I was 18 I am not 28 with kids I am married, iv had meny jobs and finished collage an school. U can do it sweet I no it's hard as even now it is for me to but u do have a future I can't say it will go away but it sort of becomes easyer, we are all here for u to talk to an this is the perfect place to do it, I hope it will become easyer on u an if u fancy a chat please message me love shibby xx

  • Hello and welcome to our lovely forum. There are lots of friendly lovely supportive people.

    Please do take a look at our mother site

    fmaul.org

    There is also some pinned posts on the home page.

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  • We can totally understand the despair you feel at being so young and looking at a life with pain and fatigue. Actually many of us looking back realise we too had fibro from an early age but have somehow managed to get an education and often hold down important jobs. Many of us have married and had children.

    I am no expert so I do not know how some of the fibro drugs would interest with your hemophilia but I wonder whether a referral to a rheumatologist or pain expert clinic would help. There is actually something called electro acupuncture where they go over the acupuncture points but there are no needles involved. I had acupuncture yesterday from someone versed in Chinese medicine as well as acupuncture. He is so careful in where he puts the needles. If a point hurts when he pressed he find somewhere else in that area to put it. He also explains how the body functions and talks about diet, rest etc I have learnt more off him that any GP or specialist.

    As others say so look at our mother site as there is masses of good information. The problem with stopping in bed too much is that the muscles weaken so when we try to move them they become even more painful. Sometimes something called hydrotherapy can work. There are masses of options out there. Do some research to see what you think k might be best for you. Let us know how you get on.x

  • Hello Erin love, I am so sorry to hear you’re feeling so down and in pain. I am assuming you have been diagnosed with fibro but you haven’t put too much information about what type of pain you are having or where it is. There are other treatments besides medication that may be of some benefit to you. Have you tried TENS therapy and/or applying heat pads etc. Also some people find soaking in a bath of Epsom salts gives some relief. There is a lot of information on this site that can help but maybe some members can put forward some alternative treatment suggestions to you and you can discuss these with your GP. Depression and anxiety don’t help with the pain and leave you with little motivation to do anything so are you getting help with this lovely? It is hard enough for us more experienced fibro sufferers to explain how we feel to others so I imagine it is even harder for you to get people to understand what you are going through. Is there a close family member, friend or teacher you can talk to who you trust and will listen to you? If you haven’t already, would you be able to speak to your GP as they can refer you to people who will be able to listen to you in confidence and offer some help on how to deal with your feelings. I know with me when I was first diagnosed I felt so low and the worse I felt the less I did and the less I did, the worse I felt. It is a vicious circle but it can spin the other way just by doing one positive thing a day. You have done that already by coming on this forum and sharing your experience. You do have a future ahead of you, the fact that you are still getting yourself to school means you are doing something towards this. The future is unpredictable and can be scary but you will find your own way I have no doubt. In the meantime you are not alone and we are all here to listen to you and support you. Take care my little sweet and I hope you feel better soon. xxx

  • Hi erinabrow2

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of your suffering and struggling my friend and I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • You poor bunny!! I am sorry you are feeling the way you do but there is a light at the end of the tunnel....learning how to cope and live with fibro is a long path but you made the first step by talking to us. Has your GP referred you to Pain Management or Rheumy? They can help you to sort out the meds you need with your condition to help you cope so you can live your life to it's fullest potential. It will all take time, but do keep chatting to us as I am sure you will find lots of helpful info here.....AND A GOOD GIGGLE AT TIMES IS MOST ESSENTIAL!!! Gentle Hug xx

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