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.

If your best mates came round and told you that you can have 24 hours of their time to use any way you want, what would you get them to do for you?

*Nothing, but sit down and have a nice cup of coffee and just talk, really talk!

*I agree with above

*make me smile as they always do

*I would love if someone would help me and motivate me to get my house back in order like help with dishes and cleaning the house ...not to mention after we got that done then we could sit down and watch movies for the rest of the time and just Veg!

*Just hang out and be with each other. Be silly, have fun and just enjoy each others company!

*make me laugh x

*I agree with you but add not having to get up and down for this or that, or answer phone for this or that.

*Take a walk in the woods & give me a massage!

*I would make them go to a health spar for the day as she has always been there to help me. I think she deserves to be pampered now.

*Help me clean and organize my bedroom!! Also, I don't get to spend a lot of time with my friends they all have busy lives and don't have time to visit me. I would love to just sit and talk.

*Just to be pain free and enjoy their company

*Just to be pain free and enjoying that with them

*Help me realise I'm not alone in the world, and make me see I'm going to be OK. but would need more than 24hrs to convince me at moment!

*Just hang out, chat, listen and give me hugs as needed.

*dig on the allotment ! so much to do so little time & I'm no use at all as I can`t dig so my partner has to do all the digging :(

*Since we all have fibro, we would just hang out and pamper one another.

*I think the consensus is that all we really want from our mates is some time and company. Fibro can be a really lonely condition. Having real mates round for a chat and a giggle is the best medicine for helping us to forget about our illness for a while.

*For my friends to feel free to talk to me about my fibro etc I have certainly found out my true friends through this awful time I am having.

*How true, the only "true" friends I have also have fibro, the "normals" whom I thought were friends ran years ago.

*I would really love for my garden to be done,I used to love gardening but with fibro so advanced I cant pull the simplest of weeds.

*Depends which ones, one is fab at reflexology, one makes great cakes and one just makes me laugh.

*My garden or my stairs decorated please x

*I'm lucky to have a spouse who helps around the house, even if he does get frustrated that I can't help out as much as he does. I would love to have all my friends over to just spend time with me, everyone could bring food so I wouldn't have to cook and we could all just have an amazing time!

*All the house work and play taxi driver! lol

*COOK, Clean, and hike several miles for me. Visit the animal shelter, shop and go out to eat. Haven't been able to do that in about a year due to the pain. I miss it.

*The first thing would be to sit down and talk with me. Have our favourite drink & snack. Then if there is time left, laundry, clean, & cook. But then they must stay for supper to eat and enjoy and watch a movie!

*I'd like a solid full-bore clean-out of my entire kitchen. All cabinets, both fridges, oven, microwave, all pots and pans, cups, utensils and dishes. If these best mates were still willing after all that (ha!), I have some landscape maintenance which really needs doing!

*Clean my house!!!!

*oh 24 hours then after cleaning house we could have a nice meal and watch the basketball tournaments and talk long into the night which is when I am usually awake!

*If my family /mates are reading this, please clean the house and sort out the garden! De clutter Steve if it's possible.

what online support would help you most, and have you found this anywhere?

*Help with tackling the Disability Living Allowance process! It's a nightmare!

*I have found great support and inspiration from the following groups:
Fibromyalgia--http://www.facebook.com/?ref=home#!/group.php?gid=51024203440

POP!--http://www.facebook.com/profile.php?ref=profile&id=1169391134#!/group.php?gid=233248270891

FibroMasters--http://www.facebook.com/profile.php?ref=profile&id=1169391134#!/pages/Fibromasters-Theres-No-Cure-For-Fibromyalgia-But-You-Can-Master-It/213351404789?ref=sgm

*FibroDuck (OF COURSE!)-- has helped me get out and become creative with my Fibro Awareness. It's been inspiring to see the other Duckies of the world! Plus, the more I talk about it in public to friends or strangers, the more people I realize I know who suffer with it!

*Great Question today! Can't wait to see what others have to say!

* www.ncodp.org.uk those people helped me with my benefits, they were very good and understood my problems.

*I've found facebook groups very helpful, have found fellow sufferers and can ask questions about new meds and dealing with symptoms

*I'm also struggling with DLA!

*DLA help, It's like batting my head on a brick wall!!

*A list of where we can get really good medical support for FMS from, it must be there somewhere!

*I agree DLA are a nightmare I'm sure they think we are trying to pull a fast one, they should try living with it for a week see how they get on.

*Yes - DLA and more info about research. I am an expert on Fibromyalgia as I live with it and have read loads about it. I wan to know more about what is being done re. treatment and cure.

*One for benefits help is:
http://www.facebook.com/group.php?gid=353769547720

*I asked my local DIAL group to come and help me fill in the DLA forms which was a great help. Definitely one in Leicestershire and similar in Derby, not certain about other areas.

*Here is the link:- My local group sent someone out to my house because I couldn't drive there.
http://www.dialuk.info/findadial/index.asp

*I'm struggling with DLA. I appealed original decision and have now asked for final appeal with me attending. I tried to ask DIAL for help with both but the Leeds branch is no help whatsoever! I emailed and rang and left message first time I contacted them and they couldn't help me before the deadline for 1st appeal. Then this time I emailed and they took over a week to respond and say I would have to ring them to make an appointment as they are too busy to respond to the email! Waiting for my appeal date now - unless they change the decision without a hearing - which I doubt!

*For anyone needing help and advice on benefits, I've found these guys to be a fantastic support:
http://www.facebook.com/?ref=home#!/group.php?gid=100236785459

*This is a great site with loads of easy to understand,practical advise.

*Does anyone know where you can get help for DLA in Belfast I have been turned down 3 different times, have been to CAB, they filled the form in for me again they didn't know enough about Fibro or how to explain it on the form against the questions they ask.

Many thanks if there is anyone who can help me I have had (fibro) full blast for 10 years, soft gentle hugs to everyone x

*Do you have such a thing as a welfare rights office? they should be able to help you as that is what they are paid to do. they helped me when I claimed DLA and they help every time I have to reapply.
good luck x

*The key to filling in the DLA forms is to fill them in as if it is one of your bad days. How would you cope on a really bad day? Don't think about how well you can cope on a good day. Where it asks how far you can walk be honest...can you walk at all without severe discomfort? It's not asking how far you can struggle to walk. Don't tick the boxes,but write little notes personal to you where you can't answer for definite. Make sure your personal statement at the end is as you would be on a bad day. No need to mention good days. It worked for me on my second application after someone told me how to approach it. Hope this helps x

*Each CAB is different but most of them can offer brilliant assistance with your application and can refer you to the right people to assist with appeals too. Try 'em!

*I get best on-line support from individual friends I met via on-line groups, I'm so grateful for all of them!

*In the USA, it helps to emphasize the depression aspect of disability/FM. Also, I was disgustingly honest on my forms including about not showering, etc. Both of those I think aided in my getting approved for disability.

*I have found on-line forums such as FMAUK really helpful. Lots of members who post about their health, symptoms, treatments, meds, GP and consultant experiences etc. Lots of advice and ALWAYS someone on-line to chat to, even at 3AM when the restless legs and pain are keeping you awake.

It is almost impossible in the UK to obtain DLA without form filling help from CAB or Benefits Advice services :(

*This forum and others like it have been my greatest help. Reading others real experiences helps me to cope with mine. It's nice to know I'm not crazy! Although I sincerely feel terrible for my fellow posters I feel better knowing I'm not alone.

*The forum its been invaluable to me when I have had questions or felt down. Its nice to speak to others who are experiencing the same as yourself, you feel part of a life line.

*in regards to ME just being able to share with fellow sufferers via FB is very helpful to me anyway

*I agree, but there is another side for me. I wish there were groups closer to me I could go to. I don't get out much and I would give anything to have friends to visit or get together with and talk in real life, not just on-line. Don't get me wrong, on-line is great ... but even my mental health clinition told me I need to have people around me, I need to get out more. Fibro friends would be so great in my life! Friends Fibro or not would be great to have in my life! :)