Pain

[Mandy_lw]

Muy family are skeptical about my pain, I'm in agony - how can I convince them I'm in pain?

[TheAuthor]

I am so genuinely sorry to read this, and I sincerely hope that you can get them to believe that you are in so much pain. I can never understand a family not believing in the pain that their loved ones are suffering as they are supposed to be there for love and support? I always think that compassion comes before suspicion or disbelief and not the other way around? I have pasted you a link for a patients booklet that you could print off and give to your family to read? It contains a great deal of information about what Fibro is, and how it is treated.

fmauk.org/what-is-fm-highli...

I want to genuinely and sincerely wish you all the best of luck with getting them to listen to you.

All my hopes and dreams for you

Ken

[Mandy_lw in reply to TheAuthor]

Thank you for your kindness and the link for the booklet.

[Java_girl]

Mandy,

I'm so sorry to hear your family doesn't understand or are responding to you and your need in the wrong way. There are some great books on Fibromyalgia out there that help to explain what it is and how they can help support you. There is one fairly new that I came across. You only mentioned pain do you have other symptoms, too?

J

[Mandy_lw in reply to Java_girl]

I have stabbing pains, deep aches, my skin is oversensitive, I can't think straight really. Sometimes I can't think of the names of simple everyday things! Thank you for your help, it is appreciated.

[1TeiaMarie in reply to Mandy_lw]

This is how I feel!

[Scouser58]

Hello Mandy_lw,,,sadly people only understand what they can see,,,,they don't/don't to 'see' a condition they don't understand,,,,as others have said loads to read,,,

Or ask them about any pain they have had,,,,and where,,, describe your pain,,then pointor prod where your pain is at,,,then give them some pain,,by pinching or pressing hard on the point. People don't understand pain and how it affects the sick person,,, till they are in pain,,,so give them some pain,,,, understanding comes from feeling,,, they might start to listen to you,,,, ttfn from Karen.

[Mandy_lw in reply to Scouser58]

Thank you Karen, it's certainly an idea.

[Hidden]

So sorry to hear this, as others have said give them leaflets, show them stuff online. Sometimes loved ones go into denial and don't want to see it. I wish you luck.xx

[Mandy_lw in reply to Hidden]

Thank you for your response, it's all so tiring especially when you have no mental or physical energy.

[stripes64]

Hi Mandy

Give them the info Ken has linked for you, maybe a print out of the spoon theory as well. It took some members of my family sometime to take me seriously but after giving them the info things got better over time.

Lou

xx

[Mandy_lw in reply to stripes64]

Thank you for your suggestions, I will print some of the information out at some stage soon.

[Hidden]

The simple answer to your question Mandy is you can't. Nobody can feel your pain - except you. Others fall into two categories those that love you and imagine how bad your pain is - and imagination is usually far worse than the real thing, which hurts our loved ones seeing us suffer what they imagine our unbearable pain must be like. (and I for one would not like to inflict their perception of my pain upon anyone, especially someone I love so much) Then we have the second group - those who have never really felt their own pain, and so have become unfeeling towards the pain of others. No matter how you try and explain it - even giving it the usual score from 1 -10 (10 being the worse pain imaginable) doesn't evoke sympathy. But who needs sympathy anyway. I have lived with chronic pain since I was two - as I am now 67 - I think I know what I am on about. The only way of coping with the pain is to tell yourself you can get through this minute, hour, day, week, month, year - life - without having to try and get others to 'feel your pain' - they can't. On a personal level I will do anything - anything at all that will occupy my mind - I find that if I concentrate hard enough then the pain fades into the background and I can cope. Do NOT let the pain beat you. You are in an all out war to win over this thing. Telling others it hurts will not make your pain go away. I agree sometime there is pain no matter what you do to make it go away - some days I feel very sorry for myself and don't want to move because that causes pain too. Those days, I take the morphine (or what ever is your current pain reliever) I make myself as comfy as possible - avoid human contact (I neither want nor ask for pity or sympathy) and hide myself in my memories, I remember all the good things I have experienced, before long the pain doesn't matter and I go to sleep.

I am sorry if I appear brutally honest, but we each have to find our own 'best way' of coping with what ails us and above all getting on with life. I will also admit not coming on this site very often, because to read of so many people telling so many other people about their pain - well it just depresses me. I have lived long enough to know that I know what is best for me. I cannot tell you what is best for you. I do, however, wish you love, luck and happiness, these you will achieve in abundance once you get this ruddy pain caged. xxxx

[Mandy_lw in reply to Hidden]

Thank you for your wise words, I hope to get a grip soon so to speak, it's time for me to try to live my life instead of exist within my life. If I take one step at a time instead of trying to build Rome in a day like I used to, I will keep moving forward. Thank you x

[Hidden in reply to Mandy_lw]

I hope you didn't think my words were cruel, they weren't meant to be. You are so right, you must try to live your life one day at a time, leave the building of great monuments to others. Concentrate on the monument that is YOU. Devote your attention to the things that will make your life work for YOU. Only you know what you feel like, so only you can make things work for you to your best advantage. Good Luck Mandy, I hope you have a long and successful life ahead of you, despite everything that tries to stop you xx

[Mandy_lw in reply to Hidden]

Thank you so much

[Sarah-Jane]

You've had good advice here. But don't leave the leaflet to do later or you won't do it.

I have found the 'For Dummies' series very helpful for many topics including this.

Ask your family to prove they have a headache! We all get them. That's the only proof.

Now tell them Fibromyalgia is like flu, real flu, not a cold.

For yourself, get real help from a doctor that really understands and pace yourself, even when you're feeling well. You will achieve more that way.

Try meditation too. It does help. Message me if you want more specific information.

Try not to think of what you can no longer do. Celebrate the fact that you have done it. Look for what you want to do and how you can achieve it.

All the best.

[Mandy_lw in reply to Sarah-Jane]

Thank you, you are right. I will try to think about what I can do as opposed to what I can't

[Hidden]

I know what you mean huni as those closest to me think I am just a drama queen, it is hard to explain I tried the leaflet angle but unfortunately they didn't want to read it said reading it would be a waste of time as my so called pain was all in my mind and doesn't really affect them, so now I have made the decision to look after myself and put myself first and they will just have to find another mug to sponge off, so I sincerely hope that the leaflets work for you and that your lot are not as selfish and ignorant as mine I truly wish you all the very best

Hugs n stuff

Fluffy xx

[Hidden]

I'm sorry to hear that your family don't understand the pain you are experiencing but in my opinion a lot of people nowadays don't know how to show compassion,

but expect it from others when they are feeling poorly.

You only need to strike up a conversation with someone and within 20 seconds they have given you their whole medical history.

The only person you have to convince is your GP and rheumatologist.

Concentrate on yourself and don't let anyone bring you down, as stress won't help your condition. You know it's real, that's all that matters.

If they want proof tell them to consult your GP it will be down on your records. I'm past worrying what others think and I'm a lot happier for it.

You just try to keep positive and enjoy your good days.

Bless you X

[Mandy_lw in reply to Hidden]

Thank you, yes I need to try to ignore anything or anyone that stresses me. Do you ever feel left out and alone even in a room full of people? It's a lonely world sometimes.

[Hidden in reply to Mandy_lw]

I know exactly what you mean. I often felt isolated at times but decided a while back to find an interest that doesn't involve any of my family and am happy to say I've met some genuinely nice, caring people.

This website is also a great comfort to me. I wish you good health and happiness for 2016 x

[Mandy_lw in reply to Hidden]

Thank you. What is your interest or hobby?

[Hidden in reply to Mandy_lw]

Hi Mandy I taught myself crochet on u tube and joined a club which I enjoy. I Also go to a watercolour art class.

5 yrs ago I decided to go back to my faith which has been a great source of comfort to me and has given me a great deal of strength.

The friends I've met are genuine and invited me to various events, get togethers and even weekends away. They accept me for who I am and treat me with the utmost respect.

I've learned to do what makes me happy and would encourage anyone to do the same. 🎄😻🎄🙋🎄👼

[Mandy_lw in reply to Hidden]

Fantastic! Well done you. It's very difficult I think, for women in particular to think about themselves first and not feel guilty! However that is exactly what we fibro women have to do and crafting always was a source of comfort to me and I hope to get back to it asap. Take care, thank you for your response and your support, x

[1TeiaMarie]

I'm in the same boat as you. I have tried the books and internet and printing out things nothing has helped so far. I thank just some people are just not going to get it!

[rockyroad-123]

Sorry you had to get hit between the eyes with the reality that your family is not going to understand or even care to read a brief pamphlet regarding your pain and discomfort . Ive had Fibro for 15 years and gave up on my family year 6 . Instead like others on here I focus on the positive . So much so I was able to open my own Home Decor shop last month . Do I have awful days at times "yes" but they pass . You wont die from this illness nor will it affect your organs . Its very hard to cope at times I know but , feel blessed many people get illnesses that take everything from them .

Am I in pain? ..... yes 24/7 ....do I feel lonely at times , of course all fibro sufferers do . I have faith in you chin up and shoulders back !! Forget the family saga and do what you love !!

[Mandy_lw]

Yes. Many thanks, good advice. I need to grow a thicker skin

[ALKT]

stop trying to hide your pain in the first place putting a brave face on every day will not serve you well. and if some one doesnt believe that you are hurting tell them to go away in jerky movements . or you could get a copy of a medical info sheet and staple it to their hand. tongue in cheek suggestion. or you could ignore those who are to selfish to even think about your health and learn to say no when your having a really bad time. people really tend to notice when you refuse to do things that you would normally do for them without hesitation.

[Mandy_lw in reply to ALKT]

Well that made me laugh, thank you