Question from a member: How can I best support someone close to me that's been diagnosed with FM?

*Be there for them as someone who will listen. Provide opportunities for that to happen by offering to cook dinner or something nice like that, that feels impossible to do when upset and in pain! But don't push wanting to do too many things, because that could make them feel bad about not being able to do things themselves.

*Support, understand don't criticise help out when needed but don't take over.

*Not just to listen but hear what they say, patience, empathy & not to say they understand, but most of all love them.

*When the person becomes angry and depressed give a gentle hug its not them its the pain from the Fibromyalgia.

*To be there for them when they need you to help them out and also support them too, and just help them to do things that they are able to do as well as those that they can't do any more.

*Person above said just about what I was thinking. I have several pain conditions and I am married, all I ever really want is to be understood and not feel like I am letting him down when I am not up to doing everything he wants!

*Learn about Fibro, try to understand. Be there if they need you.

*After the initial shock, sourcing practical help. Maybe sourcing help from School nurses and Young Carers if they have children, benefits to help pay for domestic help etc. Professional emotional support. There is help out there but it's not always obvious to know where to get it from. Finding positive things for the future to do together.

*Look after yourself. It's really hard when you're watching someone you love go through hell, but if you don't take time out of caring to do nice things for yourself (even if your loved-one can't do them with you) you will eventually resent them, and be unable to be sympathetic and supportive when it's most needed.

*Allow them to be tired and in pain. Eliminate the guilt or at least diminish it. The best support for me was finding someone who understood that just because I look ok, doesn't mean I can get up and do the laundry, or wash the dishes.
Let that person have their bad days, pamper and let them know that you understand their pain is real and its OK to play hooky from the world when they need to. Help them to enjoy their rest instead of feeling bad about it. Rent a movie, get some take out.

*Buy them a comfy, fuzzy bathrobe they will love to snuggle up in.

*I would say be understanding. Even with my diagnoses, I feel when I am not feeling well or am sick that I have to PROVE it to the people around me. It probably comes from the fact that people never believed me growing up when I said I was hurting or sick.

*My hubby suffers from FM. I know there isn't much I can do when he is having a flair up, but I let him know that I don't think its all in his head and comfort him the best I can.

*I so relate to your statement. They still do not believe. I can see it in their eyes. If they walked in our bodies for just 24 hours they would run to a Dr, begging for narcotics. They could not handle it yet we are expected to work just as hard as normal people.
Getting disability is another major hurdle. My husband got gout in his ankle and now he has some idea what it is like to have incredible pain out of the blue.
We have it all the time. Sometimes We stumble, can't walk, can't stand but who cares? No-one! They think we are putting it on for pity. If I had my choice I would NEVER leave the house.

*Just believe them when they say they are exhausted and sore as many don't believe that Fibro exists, but it does as we all know that. Just be a good friend and accept your pal each day as she is.

*Having a big flare up this week and the nausea is just bad, carrying the "bucket" around with me. I was doing ok and then I felt it coming on. I got through Easter but this week is not good. my back is burning and even the bottom of my feet hurt.

*I would say ALL of the above n below. but you took the words out of my mouth, having someone who understands what its like to have a Silent Illness is invaluable. And you're right, we need the understanding that sometimes we need to play hooky from the world and know that's OK. But always lots of love and loads of gentle cuddles.

*I just want to say, thanks so much for asking! The fact that you want to know is a wonderful start!

*I think just be understanding, don't go on about it, don't try and smother her with help. Sometimes she will need to say "no" to you, or cancel unexpectedly. That's always a difficult one, but as I said, just be understanding and don't take offence.

*I understand you completely! I too had a difficult time growing up the same as you, why wasn't I believed? If I got upset and cried then I was definitely disbelieved! Strange! So I am always trying to PROVE when I'm having a flare up!

*What I always wanted most, was for my family & friends to actually "know" something about it without my having to tell them. When I have to cancel at the last minute because of pain, be understanding & not hateful to me. That only makes it worse. Learn as much as you can.

*Mine didn't have a clue and didn't want to seem to read about it to help! I left as it was too much for me!

*Same here, my kids know I got fibro and boyfriend, but they don't help me, they think I'm moaning all the time and all I want them to do is just help me a bit. Not look at me when I say I'm in pain and cant do it.

Partners and family don't know how to deal with a Fibromyalgia sufferer. They see you as looking healthy. They don't know you are trapped in a body, full of pain. I can't do the things I used to. I feel bad saying how ill I feel all the time.

*If you can't hire me a maid then, be one when I'm in a flare.

*Be patient and don't put any pressure on the person with FM. pre-empt what needs doing and do it. the less stress a person with FM has to live with, the better the quality of life will be. good luck.

*Just believe them when they say they can't do something, or when they say they're too sore/tired: help out without having to be nagged into it and don't abandon them because they're no fun any more.

*Do things for them. Chores, cooking, anything to help them out. We are so fatigued most the time those things don't get done. For instance, I haven't vacuumed my floor downstairs and my bedroom for a month.
My dog's fur is all over it. It is nasty. I know I can only do one thing in a day and I am exhausted. I can choose either to cook or go for a walk. I cant' do both.
Try to imagine how much it hurts. How it has taken their life away from them. How depressing that would be for them and how they hate to even get out of bed most days. And how it would feel to want to die cause the pain most days is unbearable. I have lost all my friends, (so called friends), except for one because I can't keep up with them.

*Most of all, take time to read and learn about FM. My father refuses to do so. He does know I hurt and am exhausted most the time. But he does not read and learn about Fibromyalgia.

*Listen and don't imply that it is in their head or that if they just try this or that they will get better. those of us with fibro have tried lots of things to see what works for us.

*Read up on Fibromyalgia, ask questions, try and be patient and understanding - even if you can't understand and THEY don't understand what's happening.
If they say that they can't do something, they probably can't - don't push them. Maybe help take them to their doctor's appointments - come and be supportive. If they need you to stay in the doctor's office with them.

*Listen when they are in pain and try to put yourself in their position and don't judge them and most of all be understanding.

*Treat them the way you were or would want to be treated, with love, understanding, guidance, support, never pity there is no power in pity just compassion.
Pass on information you have and learn together anything new. Gentle hugs to all.

*Believe what they say about how they feel regardless of how unlikely it sounds. It IS the truth.

What's the ONE piece of advise you would give to someone newly diagnosed with FM/CFS/ME?

*Educate yourself.

*Hot soaks in the tub every day.

*Be very patient.

*Find a good doctor you can speak freely to and trust!

*Make sure that you have a doctor that believes "in" you, that doesn't mean it's the doctor that diagnosed you, sometimes you will find it isn't that one.

*Heat packs become your new best friend.

*Learn how to pace yourself and deal better with stress!

*Know that you might have to fight to get the treatment you need.

*Make sure you have people around who TRULY support you.

*Detox your body on a regular basis.

*Don't feel guilty at all when others think you are being a moan or nag. Also keep at your GP/Consultant for the most up to date meds, And don't be afraid to ask for help.

*you are not alone.

*Educate yourself, Google is your best friend upon diagnosis, there's a wealth of advice and support out there, grab it with both hands, it will see you through the darker times.

*Education and self-awareness are key. Become your own advocate, *know* your body so you can describe symptoms and if the first doctor doesn't do it for you, find another one!

*I agree with finding an understanding doctor. Also don't push yourself too hard on the days when you are feeling good because you will pay for it.

*Exercise and Diet are the two biggest things you can do for yourself.

*Read all the info you can, stay positive, pace yourself.

*Pray

*Listen to your body

*Realize when you ARE being a nag and what YOU can do to help yourself.

*Maybe a food or foods may affect you or your pain levels.

*Often it could a much loved or constantly eaten food that's considered "wholesome" that could be hurting you.

*KNOW your body.

*Keep a journal and be brutally honest with it. How you feel, how the pain affects you, what makes you happy ... and be nice to yourself.

*Join patients like me

*Be honest do NOT look for someone or something else to blame.

*Try different medications to you find something that really helps you. also chat plenty to others that know what you are going through and can give you help and support.

*Stay away from stress and learn how to deal with it. Stress kills me and makes me flare every time.

*Be patient while you find your "new normal".

*Be ready to find out who your real friends are and what members of your family really care! Be patient with your spouse and children, it will take time for the household to adjust!

*Be ready to hurt, the pain never totally goes away, at least for me, but some days are better than others. Finding a good doctor is important, more meds are not always the answer. And most importantly, stay POSITIVE and willing to say NO, when you can't and don't push to hard on the days you can.

*You will adjust, I'm a young mum, with special needs boys. My house is never spotless, but everyone has what they need and we love one another, never taking today for granted!

*You are not alone

*You are not mad. At times you will think you are, you are not. Normal has just shifted a bit for you.

*Stay positive,take each day as it comes,join a group who supports rather than sit and whine with self pity, don't give up!

*You shouldn't feel embarrassed or ashamed for not being able to do the things you did before so don't push yourself just to seem 'normal' to others.

*Do some gentle stretches and relaxation, also join support groups as u ll find the majority of the time its friends from the support groups who are always there for u when your family & friends are not. Pace, ask for help, learn to say NO and educate yourself, Fibromyalgia 4 dummies is a good book, keep a daily diary.

*Join a support group, no one understands except a fellow suffer.

*Find Fibro friends if you can... And Ducks

*Join Fibroduck, it makes a difference!

*Take it one day at a time....on your bad days, take it one minute at a time. Try to pace yourself, because if you over due it on a good day, most likely the next day you will be in bed!

*Learn to pace your day, the spoon theory! Read it! Also a good support group.
Listen to your body and respect it. Eat right, take your vitamin d and do light exercise! Sleep Well! Find a support group and a doc that understands and believes in the illness.

*Know that lots of people are going to say they have a cure "if you would only _______" don't buy it or into it - if it was that easy we would all have been cured and jumping up and down a long time ago.

*It takes time to get the medication right, and not always what the Doc prescribes unfortunately. Keep a diary, and try not to get too stressed, you will get to know your body, when you have good and and bad days, Good luck.

*The year I was diagnosed, I was still trying to work full time and take care of our 6 year old son. My husband travelled and we didn't have family to help. I'd fall asleep as he tried to do homework. When I finally did go on disability, it was about 15 months after being really sick. I had to rest, rest and more rest. I'd get him ready for ... See more school, and go back to bed. I'd be ready for him when he came home. It's been almost 20 years, and although I have gotten worse (just some added degeneration of the illness), I rest when I can, and if there is something coming up, I try my best to go. I rest afterwards. No two people have the same symptoms as no two people got it the same way...just remember that one. It was confusing for me. And eat well! A supportive doctor(s) are so important. If they don't, go on to the other...and it does happen.

*Be flexible..........you can guarantee every time you plan something you will flare up, be spontaneous on your good days!

*I just have to say I agree with everything EVERYONE said...Never give up
Find a good Homoeopath. One who is qualified and registered. Start your healing journey gently and slowly.

*Read every bit of info you possibly can regarding Fibromyalgia.

*Pace yourself and get all of the support you can. Laugh and have fun whenever you can and rest when you need to.

*Realise you can't be who/what you were yesterday, accept, re-group and find out all you can about the disease to educate yourself, your family and, quite likely, your doctor too.

*How ever hard it may seem, keep a positive mental attitude. The mind is a powerful weapon but above all be kind to yourself (but not soft!). Comphrey oil is also excellent...known as knitbone!

*Pace yourself. Its the one thing that worked for me~when I stopped being stubborn & listened!

*Don't pretend its not happening !

*That its OK to be scared! but you are not alone

*Fantastic Advice, and So True, but its getting family, friends and other people to understand and accept that your still you. Just at a slower pace n with a few added tweaks n adjustment to your life.

*Finding the right Balance n loads of gentle Cuddles

*Educate yourself - even the good doctors aren't going to be as interested in the subject as you are! So don't be afraid to take them new info & ask questions or make suggestions.

*Most importantly DON'T overdo those good days or try & "push through" your symptoms- it WILL make you worse in the long run, but at the same time don't allow yourself to sit & vegetate.

*Sometimes all you can manage will be fetching a drink or some painkillers one time that day by yourself, instead of asking someone else to do it- but that little bit of activity can make all the difference over time in protecting your mobility & independence.

*Forgive yourself. You did NOT choose this.

*Don't do the energy boom and bust thing like I do. Take things nice and easy even when you feel well, otherwise you;ll pay the price later!

*Put yourself first. Love and cherish yourself. Never feel guilty. Know that you will get well again.

*Listen to your body but don't let FM take over!

*Learn to listen to your body, and re-assess your life to find out what is/who is good in your life.

*I couldn't get through this without my fantastic friends and family. They are my support network. They all support me in different ways, for example one takes DD to school and picks her up when I can't, one makes me go out at least once a week, one just listens. It's all important.

*Try to find a support group

*Learn to pace yourself from the start.

*wow, now that's a question! I think my advise would be to take your time! learn your own limits and if it takes a year of learning take a year. Listen to your body, if you need to stop, force yourself to stop! you have to learn all about your body all over again, take the time to do this.

*Find a support group or a meeting place on-line. It really helps to know you are not the only one with so many bizarre symptoms!

*All of the above.

*Never let anyone make you feel guilty, if you need a break take one!
I pity them. I have no good advice for them. It is like living in hell on earth day in and day.