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Jowjo5

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I am new to the board for the reason that a family member has been diagnosed. I want to know from people who suffer with this illness what can I do to help someone with fibromyalgia?

I have asked my sister what I can do to help, but she won't say. I try to be there as much as I can if she needs me, but she won't let us help all that much.


I have started reading as much as I can so I can be more understanding for her, and just to listen if she needs to talk.

What can you recommend for me to do, or to start doing to help her? Do I just let her initiate things if she needs help and I stand back a bit? Or is there something that I can do that you think could help her out.

Thanks for the help. My first thing to help is to learn about the illness and then be there for her. But beyond that, I don't know if I should be doing more.
 

twiztc

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Well I have found we Fibro folk can be stubborn so and so's and if she is newly diagnosed she probably doesn't want to admit she can't do the same as she has always done.. I know I didn't for a long time.
It took my husband shouting at me struggling with something one day that it's ok to have him help me sometimes.
I suggest to hold back a bit... I know it's hard, butt in if it's obvious she gonna hurt herself but otherwise let her know you are there to step in when she wants it.
 

Janet L

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I think the fact that you care and will listen will be huge. The fact you believe and are learning. One of the worst things with Fibromyalgia is the constant thoughts from those you love that you're lazy, or it's not real, it's in your head. It might be cliche, but this can hurt more than the pain sometimes, because it's so frustrating.

Your sister might want to "vent" sometimes, and it might be difficult to listen, but if you can, let her get it off her chest, and then encourage her not to give up and to try and find the smallest of enjoyments out of each day or week, it'll help refocus her attention more positively.

I also can't stress the importance of exercise. Don't let your sister fall into the initial trap of depression where she doesn't exercise and doesn't try to accomplish something, this can become a very slippery slope in my experience which leads to more bad feelings.
 

Donna10112

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What a great sister you are! You can do a lot of things to help your sister, both now and in the years to come. The first thing I would suggest is to find a Support Group for FMS, CFS or a Pain Group, or a Care Givers Group. All of these welcome family members and they are an excellent way for you to hear first hand what these conditions are like. If your sister is newly diagnosed, she will have to go through the period of acceptance. We grieve the loss of our old lives and the loss of friends, jobs, etc. The best thing you can do for your sister right now is to let her know that you are "there for her". Your attempt to understand what she is going through is love in it's purest form and compassion in action.

One thing I found especially important for me was a friend that wouldn't let me sit around. She'd come over and we'd just sit and talk, or we'd go for drives in the car to the parks and walk. She'd get me outdoors somehow, and it made a difference. You are a winner all ready. You'll have people lining up to join your family just to gain you as a sister. I wish you and your sister all the very best.
 

Janet L

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Jowjo, let me know if you hear of a good support group in your area, I'd love to add it to the support group listings: Support Group Listings | Fibromyalgia Forum and Support Group

I asked David to create the listing so I wanted to keep it updated as much as possible so that it's a useful resource for people with fibromyalgia.
 

1sweed

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Jowjo, Your sister is very lucky to have you in her corner willing to help.

While it is true that we fight to do all we can by ourselves, it is not always about wanting to do, it sometimes is we don't want to be a bother to our family and friends. So we struggle to get things done because it is hard to admit to yourself you need help and the feeling that people are going to get tired hearing our health problems and complaints.

So go gentle with her at first and invite her out to lunch or over to your home for a visit. Don't let her wallow in self pity as depression can come on quickly when a person can not do the things they want to do. Be her friend, as well as, her sister, and don't give up on her. There is always the danger that some of her friends will stop calling or spending time with her, so try to fill that void.

With all illness, caregivers must have a lot of patience and understand. We with fibro, need a shoulder to cry on and a hand always reaching out to help. Just listening to her could be the best gift she could receive from you.

Reading on this forum should help you give her some coping skills and ways to enjoy life.

And bless you girl, for loving and caring about your sister.
 

Yatte

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You are a sister worth a million, my sister also has fibro, and in the beginning it was quite a battle. This is what I found. I hope it is not to harsh.

1. Give her time to accept and come to terms with the disease. it is a terrible shock to hear you are going to be sick and feel bad for the rest of your life. it takes some time and acceptance to get used to the idea. let her go through the phases she needs to go through to find that acceptance, and part of the battle will be done.

2. People with chronic illnesses are still people. We don't want sympathy or pity we want to be understood. We do not want to feel incapable of living a normal life of or being helpless. We want to do things ourselves, it is a morale booster to accomplish something difficult we initially thought impossible. We need friends, not a nanny or people fussing over everything. But most of all we want to be treated like normal human beings, not some sick wilted form of a human.

3. Only help her when she asks you to.

4. Do not bombard her with questions or answers she does not want to answer or seek the answer to. For some people denial are a way of coping.

5. The most important thing to do is be there when she needs you, invite her to join you in your activities. And treat her like a normal person.
 

Yatte

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You are a sister worth a million, my sister also has fibro, and in the beginning it was quite a battle. This is what I found. I hope it is not to harsh.

1. Give her time to accept and come to terms with the disease. it is a terrible shock to hear you are going to be sick and feel bad for the rest of your life. it takes some time and acceptance to get used to the idea. let her go through the phases she needs to go through to find that acceptance, and part of the battle will be done.

2. People with chronic illnesses are still people. We don't want sympathy or pity we want to be understood. We do not want to feel incapable of living a normal life of or being helpless. We want to do things ourselves, it is a morale booster to accomplish something difficult we initially thought impossible. We need friends, not a nanny or people fussing over everything. But most of all we want to be treated like normal human beings, not some sick wilted form of a human.

3. Only help her when she asks you to.

4. Do not bombard her with questions or answers she does not want to answer or seek the answer to. For some people denial are a way of coping.

5. The most important thing to do is be there when she needs you, invite her to join you in your activities. And treat her like a normal person.
 

Moxie

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I agree with the replies here, you are an awesome sister and a great person for actively seeking ways to help her.

I also agree with all of the points made, especially about the time of mourning for our old lives. I know that I have hurt myself trying to push myself to limits I used to be able to easily meet, but I had to go through that. If I'd had people forcing their help on me I might have become bitter, still believing that "If people would only let me...". The eventual result is that now I am becoming better about admitting when something I used to be able to do with ease is a little out of my reach, and because I have had wonderful people, like yourself, who have never judged me, I am getting much better about asking for help. We even joke now, using that line from Analyze That "It's a process."

Education is awesome. It's important for you to know, though, that fibromyalgia is a complicated thing, and it seems that no two people have it quite the same. There are a ton of similarities, though. You could broach a conversation with her about which of the symptoms she has.

Be careful about offering "cures". I had one friend who, while she was well meaning, told me so many times that if I went gluten free I wouldn't ever have another symptom that I stopped talking to her for a bit. I had told her that I tried it, and she told me I must have cheated. Sometimes people get so excited about what worked for them that they assume that if it doesn't work for you that you must have done it wrong.

Definitely keep an eye on her to monitor for depression. A lot of us suffer in silence because we don't want to burden our loved ones, even when they say and show that they are willingly to go on our new journey with us. Don't be too insistent, sometimes we just have to cry it out, but keep it in mind.

Offer to do things with her that she might like, and if she cancels on you, offer her a low-energy alternative. Instead of going for the planned walk, offer to come over and play a game, or even watch TV and chat. Be forgiving with her about being late to things, as much as is possible, but don't cut her a mile of slack all the time, especially after a few months. Sometimes it takes extra time to curl our hair, or get out the door, especially when it's all so new, but I found that, with my super-forgiving friends, I was starting to take it for granted, and was trying a little less. I started canceling plans hours after I was supposed to show up, when people were waiting for me to start something. I was gently talked to about this, and it made me realize how selfish I was accidentally being. Now I know to cancel early on, and to always keep someone informed of how I'm feeling, just in case I need to be significantly late.

Sincerely compliment her, when it's appropriate. If she looks nice, tell her. If she cooks something tasty, let her know. Sometimes these things take a great deal more effort for us to achieve, so when we hear the benefit, we are motivated to keep going, to do it again. If we feel that no one cares, then why should we spend all that extra energy? Don't over do it, or be saccharine about it, though. No one likes to be patronized >XD

That's all I have off the top of my head, but I'll say it again. You rock!
 
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