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Ignored the pain
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morningstar6 posted:
I was diagnosed with fybromyalgia 6 years ago.was able to ignore the pain for the most part or either i told myself i was. The past 6 months have basically been unbearable to me. I have not been able to do much & my children think I don't care about them because I can't play with them. I am so tired & in so much pain. My Dr. Put me on Lyrica so I am hoping that it will help. I am 40 yrs old but feel like I am 70 and should be in a nursing home. I just want to be able to play with my kids & go to work.
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missist responded:
Hi Morning star.. I had fibro back in the years my children were young so I was thinking maybe I could tell you some of what worked for me.

first off-- prioritize. if you want to be with your little ones and spend time playing-- you will need to take a new look at other things you do-- for me it was give up the picky housework-- simplify everything you do.

then--pace yourself-- so if you play a little bit-- then rest somehow. I'm not sure how old the kids are--if they are very little --use the tv as a routine way to get a little break--and naps. Take short walks with them, read them stories but don't do a lot at once. I babysit my grandchildren--we have a simple schedule and they are happy with it.

Find other folks who can fill some of the time-- I take the kiddos to library story time and bring them home for lunch--maybe stop and take my trash and get groceries while they are with me--then it is nap time and I nap too.
for an hour--just so I don't oversleep.

you don't have to do everything with them all the time-- a little bit and a rest is a good pattern. They need time to just learn to play by themselves too and they love to do that once they get going on it. Get them things that are for building like blocks or a big doll house etc.. things that require imagination.

As for pain-- I have never tried lyrica--I hear it is spendy I use gabapentin - same sort of thing but cheap and old. It helps me but it is not the only thing I use. I also take Vitamin D and B vitamins and I have also used an anti deppresant in a low dose in the past--I used an older cheap tricyclic rather than spendy new Cymbalta. Dr's need to help you to 'think outside the box' a little cuz there are 3 new drugs--which may or may not work for fibro-- and they are all spendy. depends on your insurance I guess. Some folks can handle it w/ no pain meds. But if you are using them-- you may need to try a few.

Make sure you get sleep --and if you don't sleep well--tell the Dr to help with it.

Hope that helps a little.
God Bless,
Mary
 
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missist replied to missist's response:
Oh also-- my daughter told me last week she felt the same way--like she wasn't spending enough time with her little ones I baby sit them because she is working her hubby through school.

I told her they are FINE. They love her to pieces and do not mind one bit. She is with them evenings. Little ones need Mom--but not every minute.
 
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Anon_10089 responded:
Hello and sorry for what you're going through. You are probably experiencing a bad flare. There is probably light at the end of your tunnel, although it seems impossible right now. Meds can take a few weeks to kick in, and sometimes it can take awhile to figure out the right combination. But things CAN get better. As you know, the pain will probably never be gone, but it can be better than it is now.

How is your sleep? You're 40, so are your hormones in a state of flux? If your sleep/quality of sleep has changed, that can greatly impact your pain. Doctors have seen a connection between pre-menopause and menopause with either the onset of FM or the worsening of symptoms. I'm not trying to be intrusive, I'm just throwing out ideas, so no need to actually respond to my (personal) questions!!

It could be, that after this flare subsides, you might not be able to ignore the pain like you used to, or else you'll have these kinds of flares again. There is a precarious balance of pacing that I think we all struggle to maintain.

This place is great for support and information. I'm sure others will post suggestions but there is also tons of information in older posts, too. I hope things get better for you soon!

--JR
 
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meg_k replied to Anon_10089's response:
Morningstar, I am 42 and in much the same situation. You are not alone. I have been battling this for a long time. Probably 7-8 years if I think about it. I feel much better now than I have in a long time, and that is in large part bc of the advice I've received on this site, and good doctors. My message is you CAN and WILL feel better than you do today.

Mary gave you some good advice above about pacing. Also, guilt is counterproductive. Just do the best you can. Your kids will not benefit from you pushing yourself because the more you pace, the less "push-crash" you will get. Moderation in activity level is key.

For pain relief, I recommend: Cymbalta, neurontin, warm baths, massage, any kind of mattress topper, heating pads, acupuncture. Also, get your vitamin D tested. I felt much better when my Vit D was in the 50-60 range. Many of us have to take massive doses of D to get our levels up.

Mostly, you need to find a good Dr. and work trial and error until you find a pattern of treatments and medications and lifestyle changes that lessen your pain. You can't keep living like this -- with such a low quality of life. Make addressing your pain issues a top priority and the rest will fall into place better.

Take good care! Hang in there,
Meg K
 
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bette_kaffitz responded:
Morningstar,

Where is it written that you have to keep a spotless house and be supermom to boot? Every parent has regrets. There are always the "what ifs?"

Can you honestly say that you are deliberately neglecting your children? You're trading mommy time for pedicure time? You turn your back on them. Never read a bedtime story. Never give a hug. Then you have every right to feel miserable.

On the other hand, if you make every effort to spend time with your children, if you do all that your poor, pain-wracked body will allow, then please, please, PLEASE, stop beating yourself up.

We all have different gifts to share with our children. I was a master at storytime. My husband gave the piggyback rides. My lap was always there for gentle rocking and cuddles. DH did the active play. The boys may not have know why we had this particular division of labor, but they learned that we both loved them and gave all we could.

Our younger son is mentally ill. He was always in classes for the emotionally disturbed. I blamed myself--until his teacher told me, "Anyone can see that child is loved. It is obvious to anyone who talks with him. You are responsible for all the good, all the happiness he finds in his life." What a relief!
Today, William always tells me--until I am almost tired of hearing it--almost, but not quite--"You're such a good Mom."
(I think that in his group home he has met many who cannot say that.) It still feels good.

Do all you feel comfortable with for your kids. Please don't worry about not being able to help with today's homework. As a former teacher, I would much rather a child figure things out for himself/herself. That's how adults learn to solve problems in their lives.

The time may come when your fibro is better controlled. You may actually SLEEP at night. You have no idea how much of a difference that can make in your fibrofog. And think, you're kids will be saying, "Gee, Mom, I don't know how you got so smart." (My older son had trouble with his first year of algebra. You have no idea how GREAT it felt to be able to demystify that discipline for him! Now, if it had been Spanish, he would have been on his own. I took Latin and German.)

See, we all have gifts. We all have wisdom to share. We just have to stay within our limits.

Bette
 
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fibrofran17 replied to meg_k's response:
Meg, I see you mentioned that you take Cymbalta. I'm thinking about it now that it's going generic and can maybe afford it? I am curious how it works for you and can you compare it to others like Lyrica or Savella or others? Side effects you experience,
thank you fibrofran


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