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AnonymousJane

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I have a 39-yo sister who has fibromyalgia. She was diagnosed a year ago. I love her to death though most of the time she drives me nuts! Every single day, she complains about her pain, how she fell asleep on her job, etc...and she gets irritated at me when she's in pain, has a headache because of a strong perfume that her co-worker was wearing, or a restaurant having a stinky smell. I'm learning how to take things seriously with her, but not personally. She's on a few medications (neurontin and tramadol). She hardly exercise though I give her credit for walking the dogs at night and choosing to eat healthier. She has cut back on smoking cigarettes and has lost weight.

I'm SO concerned that she may not live past 45 years because of how this illness is affecting her. She doesn't want to do anything but sleep most of the time-- on her days off, when she comes home from work. We hardly do anything together. No physical activity at all.

How can I help her? Whenever I encourage her to do this or that, she always has "an excuse" not to do it. She is a bit pessimistic and I feel like walking on egg shells. Our conversation can be depressing that sometimes, I'd rather not talk to her because she brings me down. I would be forever grateful for any guidance and support that this forum can provide.
 
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I know its hard but try to accept every word she says as the plain simple truth - and not think about exaggeration or excuses. Fibro can make a person feel so awful that they themselves cannot believe how bad it was when things are less bad. To give you an idea a few years ago I fell and broke my ankle - by which I mean I broke the bones in three places, ruptured every ligament, and dislocated the joint spectacularly. Other than a brief 30 seconds immediately after when I went fuzzy headed the pain from the injury was less than that from the fibro. Even my doctor was shocked when I told him I could now give him a pain comparison (I avoid painkillers as much as possible because they dont do a lot for fibro pain anyway) because despite being a good doctor he had never had the pain put bluntly before - fibro (and I am far from the most serious case) is worse than the pain from a broken dislocated joint.

Try and let your sister lead - make it really clear that if she is willing to try something you will not be angry or upset if you have to stop it and try not to go down the "its just an extra hundred yards, 10 minutes, a bit of music or whatever road. As soon as your sister says enough try and make so it takes as little as possible to get back home. There are times when the extra distance, time, stimulation are too much. Lots of people with fibro get hypersensitive to sensory input - sight sound smell taste touch. I have times I can hear the electric in the walls - a radio on quiet is just sheer torture. The trouble with this is if someone invites me out I might want to go but at the same time am worried I might burn out and need to stop and I dont want to ruin their trip. When someone says "its one another" it make me feel guilty and if I am worried this might happen I may say no to going out in the first place just in case it happens. I need to trust that the person I am with be OK to stop as soon as I say its necessary - that they accept what I say as simply truth
 
As a woman who is about to be 49 years old in a couple of weeks, I can tell you that your sister will not die from Fibromyalgia, but she may make her symptoms more pronounced if she doesn't do some of the things that might actually make her feel better with this condition such as taking care of herself with her Fibromyalgia and the symptoms that she has. It sounds like she is doing some good things to help herself, but it takes a daily commitment to really figure out what things might be affecting her symptoms more.

It's great that she has such a supportive sister and family that really seems to care about her, a lot of people don't have that support system. I don't have any family except for my son and I want to say that emotional support whether it comes from friends, family, or strangers is a very important part of dealing effectively with this condition. Stress is one of the main culprits to rob you of your health and it can create many other health problems besides Fibromyalgia.

In the end, you can lead a horse to water, but you can't make them drink. I do know that I feel better now than I did when I was first diagnosed with Fibromyalgia 4 years ago. I lost 45 lbs., started sleeping better, and started exercising on a consistent basis. I also changed my diet from processed foods to whole ones and the difference is amazing! I hope your sister will maybe try some of these ideas for herself to get some of her symptoms under control a little bit more. It takes effort and research to be able to deal with this condition and approaching it from several angles is one of the best ways to decrease some of the symptoms that she may have.
 
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