Don't know what to do anymore?

[lisap85]

Hi I've been experiencing body aches really bad for 3 months now, my mum has fibromyalgia and the doctor is currently doing tests on me and has said for now it is just generalised myalgia! Some days I can barely even get up and my partners back has gone so I have been trying my best with my 2 children but I had to say after bathing my son yesterday that I couldnt do it tonight as I was in agony! I've been on tons of painkillers but nothing works and I feel so useless at the moment! The doctor has now done a 2nd blood test but I don't know what for, frustration is setting in, anyone else relate to these awful feelings?

[lou1065]

Sorry you are feeling so unwell just now, to try and answer part of your post I can only say that your GP is likely to be eliminating other conditions as this is all part of the diagnoses of fibromyalgia. Fibro shares symptoms with many other illnesses. Now when it comes to the children as long as they are happy and loved that's all that matters, a wash and brush up at the basin enough. So stop being so hard on yourself as it makes everything worse. Hope you get answers soon. Lou x

[millymolly72]

I was like that to the point I stopped going the Dr's for a bit and got on with it but then the excessive tiredness kicked in and had to do something but all the blood tests are to rule out other things x. You can ask what they are testing you for remember it is your body x

[TheAuthor]

I am so genuinely and sincerely sorry to read of your struggle and your pain, and I genuinely hope that you can find some resolution and relief to these issues. As lou says, your GP is probably trying to eliminate other illnesses before he can even think about Fibro. I wan to sincerely wish you all the best of luck in getting a diagnosis one way or the other.

All my hopes and dreams for you

Ken

[lisap85]

Hi and thanks for all your replies! I have read that there are numerous conditions under myalgia but there is no test exactly to diagnose fibromyalgia and the doctors took years to diagnose my mum! I just don't want to be left in pain for years! I have to sleep most days when my son has his nap as I'm exhausted most of the time, even getting dressed is a struggle half the time! As my partner can't see it sometimes I think he feels I'm putting it on as he asks what's wrong and I say nothing but when I tell him he huffs and says oh your always in pain! A burden comes to mind and it has a large effect on my mental state! I will ask the doctors Monday what they tested for and my care worker told me to ask how long it's likely to last (have read it doesn't go away you just manage it) and what treatments I could get to help! Need all this information as I'm paying for taxis to get daughter to school as I can't even walk there!

[Mdaisy in reply to lisap85]

Hello Lisap85,

Sorry that you are going through the diagnosis phase it can be frustrating & exasperating. This may not that this help that much but we all have been there, so can listen & you can know we do understand.

It seems being an informed patient regarding Fibro can be beneficial so you can be a part of your Healthcare rather than maybe feeling on the outside. Of course being aware of the other conditions (mentioned within link too) may be equally important and there are many other reputable sites where you can find information.

So, if I may provide you with this link with useful information from our website (fibroaction.org) which after reading you may then feel able to then ask the GP about future plans. As if you are like me i like to know about future plans in regards to tests etc.

healthunlocked.com/fibroact...

I hope this helps & please do keep us updated

Best Wishes

Emma

[Shazzzy]

Hi Lisa, I understand entirely how difficult if is dealing with children when you are in so much pain. Firstly I woulsd like to say keep on trying different medication til you find what works well for you, you dont need a diagnosis before pain treatment. As for your partner, his back is in pain, all muscles, ligaments tendons etc can cause pain in fibro, tell him to imagine waking up everyday to pain everywhere !! If you need to sleep during the day do so, your body needs the rest to recover. Fibro sleep is not the normal, deep restorative sleep that everyone else has, the body never recovers from yesterdays exertions before todays hit it. That is why you always feel you are lagging behind everyone else. The most important thing you can do is to take your own time doing things, cut corners, wherever you can make things easier for yourself, look at what and how you do things regularly and see if you can find an easier way to do things. One of my neighbours used to take my daughter to school along with his children when I couldn't. When your husband is fit gethim to take on the heavier jobs, make sure the workload is divided. And lastly be kind to yourself, treat yourself gently, this will all apply wether it is fibro or something else making you feel awful, all the best

[lisap85]

Thanks all for kind words and yes shazzy I have found it even worse today (having a bad day) had to set my alarm to get me up this afternoon and I could have slept all day! I have 2 sets of stairs before I reach my front door and I couldn't even make it up one in one go I had to stop for a bit and I feel awful for my little girl seeing me like that! I don't think anyone understands it if you haven't had it as I used to think my mum was mad saying her whole body hurt and that even getting a cup to her mouth was hard! Believe me I now know what she goes through and it's the most awful thing for a person to endure, it really debilitates you and they had me on morphine patches tramadol, cocodamol, paracetamol, naproxen, ibuprofen, no pain medication works! And because I have epilepsy they have to be careful about what they give me!