Supporting my sister with Fibromyalgia - Fibromyalgia Message Board

laurawithcats · 08-22-2004, 12:55 AM

Hi all! I hope you can give me some advice on how to support my sister. She's a 31 year old mother of 2 grade schoolers, and she was just diagnosed with Fibromyalgia.

There's a debate going on in my family right now with two opposing sides: 1)give her extra help with the kids, housework, and responsibilities in general because she's sick and needs to rest; offer her unending sympathy, even when her parenting seems negligent and her mood turns nasty. 2)tough love; suggest she get off her butt and do what she has to do as a mother, wife, and member of society.

I personally feel there must be a better alternative to either of these. So far, though, I've been sticking with option #1 until I get some more information.

Can anyone give me advice on how best to support my sister while she deals with this disease? I want her to feel as well as she can, and I want her to feel loved and understood.

Thanks,
Laura

taurus3 · 08-22-2004, 01:18 AM

First let me say you are a rare and special person to take the time to even ask the question. I think it depends on how severe your sister's symptoms are and what kind of treatment she is receiving. I am a Mom and know what it's like to try to care for a child and be sick yourself.

In my case and in many cases I think we all try to do as much as we can because none of us enjoy our limitations. I have learned to modify many tasks to accomodate what I can't do. But if your sister is in lots of pain and not getting any help with meds or anti-depressants she may not have the will right now to give it her all.

But option #2 on your families list is ridiculous and cruel. Let them feel her pain for a few days and see how much they get done.

For starters I would find out what symptoms she's having and how the doctor is treating her. This will help you see where she's at with things.

Hope that helps and once again thank you for caring enough about her to ask the questions.

Andy

Icefire · 08-22-2004, 08:46 AM

I agree with Andy that you are a sweet sister for inquiring about your sister's illness.
A lot of people can't deal with things that are unknown to them, one being an illness that can't really be seen. If the person looks healthy, they must be, right?
I personally am tired of hearing, if you'd just push yourself. Well, if I could push myself I would. I miss riding horses, climbing mountains, walking the entire boardwalk at the beach just to name a few.
Just try to support your sister the best way that you can, and give her time, she may be able to bounce back and be OK for awhile. If not, just remember it's easy to have opinions of someone, but unless you walk a mile in their shoes, keep your opinions to yourself.

Good Luck
Chris

laurawithcats · 08-23-2004, 12:10 AM

Thanks for the advice, Andy and Chris. As a person who deals with chronic nerve pain, I have some inkling of what you're saying. Only an inkling, though, because what I'm learning about Fibro shows it to be a very frustrating diagnosis. I can only begin to imagine what you all go through each day and I admire you for dealing with it as well as you can.

Today, I'm taking my sister and her kids school clothes shopping. I figure that's a struggle for healthy parents, let alone someone fatigued and in pain. I hope I can help ease the load a bit.

However, in the end, my sis has to go be Mom (not to mention all the other roles we all play) all by herself. It must be so overwhelming. She likes her doctor, who is giving her small steps at a time in order to see what works and what doesn't. He recommends warm-pool excercise, paraffin treatments, Celebrex, an anger-management class, and a new med whose name I forget but is primarily an anti-seizure. In six weeks, he'll see her again to adjust the treatment according to how she's feeling. Does this sound about right to you? To me, yes; but again, I don't have Fibro.

I do have a couple of more questions, too, if you don't mind. My sis's ANA test came back positive in a speckled pattern. I thought this indicates Lupus, but the doc says he doesn't want to say yes or no to that yet. Any experience there? Also, he didn't suggest any particular vitamin or nutrition plan. Have you had any help from something like that? Finally, are there any books on Fibro that you really found helpful (or any we should avoid?)

I will try to encourage my sister to look at this message board. I imagine having a support system can be helpful.

Again, thanks for your feedback. This is a disease I know almost nothing about (except for the unfair stereotypes that I'm sure you're familiar with). I want to be informed enough to counteract all arguments for option #2, and to get my whole family behind my sister in a positive way. You will be in my prayers.

-Laura

taurus3 · 08-23-2004, 11:14 AM

Hi Laura,

Taking your sister and her kids school shopping will be a huge help. That is a chore, I didn't even like it when I was a kid, mine is too little for school yet but it's definitely not something I look forward to. Maybe by then I'll come up with some bright idea to make it fun. Of course I won't make him get powder blue chorduroy pants either like my Mom did when I was a kid. LOL I was the chubby kid so chorduroy meant "hey everybody, listen to my thighs rub together!"

It sounds like your sister's doc is doing a good job trying to treat her. He is probably giving her neurontin (anti-siezure) but that's just a guess. Lots of fibromites take neurontin. I also have lupus so I am familiar with the ANA test. You can have a positive and not have lupus. He will probably be keeping an eye on her white count and sed rate to see if he thinks she's having any of the strictly lupus type of symptoms. It's common to have lupus and fibro together. Has your sister had any strange rashes on her face and body at any point?

My lupus has been in remission for about four years. My fibro didn't go acute until about two years ago and all my symptoms are from it.

It would help your sister to avoid sugar as much as possible as it builds yeast in the body which aggravates fibro. Eat more fresh vs. processed food and take at least a multivitamin daily. A calcium/magnesium/zinc tablet two to three times per day helps with the muscle spasms and cramping in the legs. Eating yogurt every day can help with the yeast too. Plus it's good for you.

There are lots of good books out there on fibro. There are fibromylagia cookbooks and trigger point therapy workbooks. I don't know of any that are BAD per say. The best thing to do is go to a good bookstore and look at them yourself. You sound like a sensible person so if you read the outline and it sounds reasonable it's a keeper.

I hope that helps some. Check out a post about 2 or 3 pages back called The Best Supplements. A bunch of us posted all of our herbal/vitamin remedies that we've tried. What works, what doesn't.

Good luck Laura (especially with school shopping) - Andy