Recently Diagnosed

[Nadders]

Recently diagnosed. My life is changing by the minute. There's so much I can't do now yet I've been ill for years. I feel useless.

[Scottish-piglet]

Never feel useless, listen to your body and take each hour as it comes. If you feel low just post on here and everyone will rally round to make you see what you can do xx

[Nadders in reply to Scottish-piglet]

That's very kind. Gives me some hope as this illness can be terribly lonely. Although my husband is unbelievable and my kids are very understanding I still feel like I'm a prisoner in my own body.

I'm a singer and before we went on stage last night I mentioned the high frequency was killing my teeth in the sound check, my band member said "is there anything you haven't got?" I didn't answer but I was really hurt and upset.

I arrived home early hours and I only got out of bed 9pm this evening. I'm feeling really low with how much this illness controls my life.

Thanks for your message and making me so welcome 🤒

[Scottish-piglet in reply to Nadders]

If the band member says anything, tell him you haven't got his ignorance. To be able to sing is beautiful, I can't and have been told so many times.

The main thing is never give up or give into Fibro, we all try to keep fighting, it's very difficult to keep going especially when even small things hurt us or the slightest movement. I was told to set small daily goals, getting showered and dressed is one, another is doing the washing up, it's not much, nothing too strenuous just enough to keep me feeling human and in control for a little while. Hope you have a good night and pretty painless day xx

[BlueMermaid3 in reply to Scottish-piglet]

That's was an amazing comeback. Hopefully it would make anyone stop and think about what they've just said xx

[Katherineanne in reply to Scottish-piglet]

Great comeback. I've got to retain that one...says so much with so few words. Thanks

[Agora1 in reply to Nadders]

Oh, what the band member said had to hurt more than the body pain itself. I'm sorry. Yes, sounds and light can affect Fibro patients because of our sensitivity. I care, I understand. Sending a warm hug

your way.

[Nadders]

Wow you seem so strong. I love the fact your positive. I will keep in touch. Thank you for your kindness x

[Hollie121]

What a lovely photo of you and husband I don't suffer with fibro but my daughter does and she's only 15 but I know what it's like to lith with pain as I have chronic facial pain please believe me you will have good days and bad days but never give in x

[Nadders in reply to Hollie121]

Hi Hollie

Your poor Daughter. How does she cope?

My partner is incredible .

I've got Trigeminal Neuralgia is that what you have? I'm a singer and the high frequencies give me excruciating pain.

Thank you for making me welcome xxx

[Hollie121 in reply to Nadders]

Your more than welcome no I have a typical facial pain I've heard of TN do you see a chronic pain specialist as for my daughter she copes as best she can but as I tell her me and her dad are here to support her

[Fibromepainless]

Nadders .... Hello there, Some peoples ignorance hits us all , Your fellow band member, ? what on earth,... its a lonely place to be, on our own and no one to share our pain with ,and because we look ok ,these ignorant people cant see the pain we endure, ....Get some info on the condition and post it through his damn door, ignoramous ! ... ...................Take every day as it comes, We are all here to help. xx

[Nadders in reply to Fibromepainless]

Hee here that's funny. He actually posted me some fibro information the day before which suggested it was all in the mind. So I think I expected it.

Yes my partner is truly amazing. I will stay in touch with you all.

Thank you so much

[ukmsmi4 in reply to Nadders]

What an ignorant uncaring person this band member seems to be. Even if he does truly believe that it's all in your mind why the heck does he think posting you information on that misguided theory is going to help. If you did have mental issues that is hardly helpful behaviour, more likely to make things worse. Clearly he can't and won't understand anyone else's problems.

Perhaps you should also try and post him some info on how to have compassion and understanding for others, though I suspect you would be wasting your valuable energy. There's none so deaf as those that will not hear.

I'd be interested to know what this so called information was as I'd be happy to take it apart.

Margaret.xx

[Katherineanne in reply to Nadders]

What a jerk that person is. I know that's not politically correct, but actions always speak louder thsn words in situacions like that. Get that person out of your inner circle. I'm mad for you cuz I think we all have had so many do something of same circumstances towards us. Good in...bad out...if you truley can.

[Fibromepainless]

Not a problem, Post him some information on how and why, how many different levels, and how many Thousands off people suffer, It sounds like he doesn't believe you, , some people have Chronic pain and very rarely out off bed,.. Hope I haven't scaired u . .....

But there is the other information that some people can get over this condition,.. ,,

The Internet can fill us with some negative info ,

Try and stay positive , take every day as it comes,..xx

[TheAuthor]

I am so genuinely sorry to read that you are suffering and struggling with your Fibro and I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

[Hidden]

I agree with Scottish-piglet, you also done well getting up there in the first place, well done.xx

[Hidden]

Hi Nadders, I feel very much for you, I know how it is to feel useless. But we're not and you must come to really believe that. I too have an amazing man that I adore and understands me. Keep your chin up, you will find a way to cope with this, there's always a way.

I wish the very best for you and your family.

Love Anita xx

[Janet28]

Hi Nadders, wow what an ignorant person, as other's have pointed out. Also as someone else suggested there is plenty more positive information on the net that says it is a debilitating, complex medical condition, which you should post back to him and educate him.

I have had so much pain from my teeth, jaw over the years. Iv had most of them removed and still get pain. Can't wear my false teeth half the time because they are to hard and to painful. Can't eat with them in & only wear them when I have to venture out lol.

So yes girl, take no notice of people that are ignorant, they really don't have a clue. Not that I would wish this on anybody but I would love to say, "there you go, have my body for a week & see how you go" I'm sure that would stop the "not helpful remarks".

Your really not useless so don't think that honey, wow you can sing, how wonderful. Have you got anything uploaded on net so we can listen.

Keep Faith

Luv n light

Jan x

[Katherineanne in reply to Janet28]

Like your reply to member

[Katherineanne]

I understand your words and feelings. You are enough,valuable,useful and talented, inately, with singing. I always say ..I can sing...just not well. Fibromyalgia is 100% life affecting for us. You might want to consider not even acknowledging flippant,mean spirited comments like that sometimes or all the time...up to you of course. Sometimes responding to something so obviously unkind only gives life to the (mean comments) subject where it deserves none. Remember, anyone who wants to be with you on your journey... will and those who don't... Won't. Right now,where I'm at physically, is I can do most (not all) things,tasks etc. I just have to them differently or simple say "no", don't do it or get /ask for help. New normal is an adjustment...which I am still finding my way with as I go. Keep those that lift you near...all the others far,far away. You are precious...never forget that.

Katherine