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Old 05-23-2007, 11:49 PM   #1
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Lots of questions from a first time lister

Hello fellow fibromyalgians!
I have been suffering from the pain of fibromyalgia since I was 23. I am now 37. I am determined to find something that will make this go away. I have tried hypnosis, glucosamine/condroitin, MSM, SamE, antidepressents, exercise, losing weight, acai berry drink "Mona Vie," "Dr. Frank's No Pain Spray," and so many more things that my foggy brain can't remember! So far I haven't been cured, but I have lots of hope. Has anyone tried guaifenisin (guaifenicin?sp???)?
I am currently using a CPAP sleep apnea breathing mask at night when I sleep. Has anyone tried that with any positive result? I have had the CPAP for three days.
Does anyone have REALLY dry eyes when they wake up in the morning?
My pain is omnipresent, but is much more intense in the evening and first thing in the a.m. Is that the experience some of you have?
I am just so curious. None of my friends have this and I really have no one to talk to about it. My husband is a sweetheart and is very understanding. I am very blessed. It would just be nice to be able to talk about it with people who really understand.
When my girls sit on my lap sometimes it really hurts. Is that part of the whole fibromyalgia thing? It must be.
Thank you for tolerating my stream of conciousness! I am so happy I found this list. I feel like I am not alone.
Love,
Fousey
p.s How do you move the cute little smiley faces over to the text? I am technologically lame. (can I blame that on fibromyalgia? )

 
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Old 05-24-2007, 05:14 AM   #2
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Re: Lots of questions from a first time lister

welcome fousey, welcome!
sanctuary is yours. we are a good group of kids, ha! i am one of the oldies, tee hee.
yes fibro causes pain when pressure, like a child sitting on you, occurs. i learned to snuggle down on the couch with my grandchildren by my side. easier and fun.
dry eyes, good grief yes. get the eye drops for dry eye. they really help. never tried a sleep mask. i take ambien, benadryl and neurontin at bedtime. i have had this for what seems like all my life but is in reality only 13 years.
i quit wasting my energy hoping and searching for a "cure". for myself what it took was evolving with my body. since i was clueless i got a head shrinker to help me adapt, evolve, embrace, and love me, as my body and i are.
the pain is mostly always with me. attitude. my saving grace. attitude. even on the really hard days i remember to laugh at myself and my situation. if i woke up and i am aware of waking, it is enough to make it a perfect day for me.
i have tried it all i think. not the clinics tho. to extreme for me. use the guaf. it helps others here.
the best medicine i found for myself is exercise and dance regularly and drink my water. i started out in a heated pool with physical therapy. i must interject that i have had strokes and some of that therapy was learning stuff i used to know. like how to walk without doing the frankenstein thing. you should see me now. no one would ever know. attitude and determination. not to be well or cured, just to be the best i can be today.
it is hard being alone with this. i also am the only person i know with it in my peer group. one of my daughters has fibro. i am her support. i spent 9 years with a shrink learning how to stand alone with fibro. worth it.
when i require an ear that is filled with understanding i come here. mostly i come to support others on their journey with fibro. 13 years ago i never would have thought i could love having fibro, yet it is one of the best things to ever come into my life. slowed me down. now i stop and smell those flowers i used to rush by in my hurry to be supermom or superwife or superemployee, ya know?
you can do this. with all of us here standing by your side, holding you up when you need it, listening with open minds and hearts. so, you now have a lot of friends with fibro. all of us!
peace,
bluelakelady
ps. you will get the hang of the toys here. smileys and such.

 
Old 05-24-2007, 06:36 AM   #3
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Re: Lots of questions from a first time lister

Thank you bluelakelady!!
Waking up to your post this a.m. has made my day! I really don't feel alone now! Like you, I am one of those super-mom, super-wife ladies. The fibro slows me down and it makes me so mad sometimes. I have so much to do, and I don't want to slow down. I have a very energetic spirit. Maybe there is a hidden lesson in all this for me. Thank you for taking the time to respond to me. It means so much to me. I hope you have a great day ! Thanks again!
Love, Fousey

 
Old 05-24-2007, 06:45 AM   #4
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Re: Lots of questions from a first time lister

you are most welcome.
i am no longer superanything. just me. easier. try not to get angry when your energy is low. it only make it worse and makes it last longer. anger is not your friend. it is a favorite delicacy of fibro. fibro eats our fear, anger, frustration and turns it into pain. so, try to show your body the same love and care you gift your children with. if your child was feeling this way what would you do? do that for yourself. children learn by example. you have a perfect opportunity to teach your children so much about the power of life.
hope you have a grand day too. me? i am doing that spring thing. my brother and i are rearranging our space, painting and gardening.
take care my new friend.
peace,
bluelakelady
ps i just use the quick reply button. it is easier. no cute faces to play with, tho. hit it first and it will open the box below so you can write in it.

 
Old 05-24-2007, 06:42 PM   #5
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Re: Lots of questions from a first time lister

Welcome fousey, I to still get mad because i cant do the things i want to do.
And my pain is also more in the am and eve. i try to stay active, but after a few active days i need a rest day, or two. hang in there.

 
Old 06-02-2007, 10:53 AM   #6
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Re: Lots of questions from a first time lister

Hi Tammy!
Thank you for your words of encouragement ! Even though I am so exhausted, I am always on the go. I don't usually tell people how my body feels on the inside, and I am very good at faking feeling well. You are so right about taking it easy after a busy few days. I need to learn how to do that! I feel like I am not allowed to rest myself until "it" is all done, and of course it's never, ever done!
I am going to take your advise. Bluelake lady suggested the same thing. I am so grateful to you girls! I'm almost teary as I sit here and write because I don't feel alone anymore. Bless you!
Love,
Fousie

 
Old 06-02-2007, 10:58 AM   #7
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Re: Lots of questions from a first time lister

Hi Bluelake lady!
You are so wise! My girls, ages 5 and 8, need to learn how to take care of themselves by watching me take care of myself. I really never thought of it that way. So I will make a commitment to you today. Today, after I take my girls to a birthday party, I will spend 30 minutes on the couch reading a magazine. I will also cook an easy-breezy dinner.
Thank you for your wisdom and concern.
I hope the painting and gardening are going well
Love,
Fousie

 
Old 06-02-2007, 01:16 PM   #8
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Re: Lots of questions from a first time lister

Hi Fousey, welcome to the boards. Like blue I take ambien, benadryl and baclofen for the fibro. I try to exercise in some way everyday and I try to take it one day at a time. Like you I too went through the have to be supermom etc. and especially the I have to get 'IT' done. When I learned to accept the fact that 'it' doesn't have to be done 'right now' that 'it' will still be waiting for me when I get around to it, my life became so much simpler.

My pain is always worse in the evenings but sometimes the mornings can be cruel, that is when I know it will be a day of rest and relaxation. I am past the years to have to take care of my children, my hubby and I took early retirement so I have some advantage in the rest all day dept. I do have the hurt'n when our 4 yr. old grandson wants to sit on my lap though. My skin and muscles always hurt when I am touched, most people don't understand that.

We have started some major remodeling on our home. We are not doing the remodeling work, just the clean up and organizing and scheduling. I think the scheduling is the hardest. Anyway, we are moving so slow with it and my spring cleaning is so far behind, about 2years behind.....giggle! That's ok though, it will get done sooner or later. Like blue says, attitude is everything. It took me a long time but fibro has taught me to slow down and enjoy life along the way, not to stress over the small stuff, and to say 'NO'. Seriously, saying no when you are ask to do things that will stress you and overcrowd your schedule has been such an uplift for me. Without the fibro and the overwhelming fatigue, I would never have learned to do it.

So come here and join in the fun and vent when you are having a bad day, we are here for you.

Glojer

Last edited by Glojer; 06-02-2007 at 01:18 PM.

 
Old 06-03-2007, 06:41 AM   #9
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Re: Lots of questions from a first time lister

I know how you feel about having no one to talk to about your "disease"(this is my mother's little pet name for FM - which is a long story in its self). My friend told me about the boards and I really wasn't interested at first. But, after I got my first response to a post I cried for hours. It was such a relief to have somewhere to vent and have other who felt the same and struggled the same as you.
I have been seriously suffering for over 5years now and with in the last 2 years it has really gotten to me mentally. All the test, the pain, and everyone questioning/believing you. After I found these boards I started doing more research and was determined to find a solution for me. I didn't want to be a victim of this "disease" anymore. I too am a "supermom" and can't except being slowed down by pain. The thought of having to change my life for this was killing me.
I wasn't getting any answers from my rheumy so I went to a new doctor at a teaching hospital. He really listened to me, reviewed everything in my chart, and confirmed everything I have been researching. They are currently treating me for FM with the possibility of future scleroderma based on blood test. I have arthritis issues through out my body and I started a routine of supplements and fish oil. That with new meds and keeping active have really changed things around for me.
Its a double edged sweard with FM and you just need to find whats right for you. Some people say slow down take it easy but for me that wasn't the answer. My new moto is "just keep moving, no matter what". Some days I just want to lay down and dye but I know I can't or I will be right back in that mental dumpster again.
It is good to come to the board, read, vent, and learn.
Take care.

 
Old 06-19-2008, 06:55 PM   #10
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Re: Lots of questions from a first time lister

Hi Fousey
If you haven't been on Mona Vie for an extended period it wont work. I had degenetrive ageing in both my knees and in two weeks I was pain free. After two months on Mona Vie my insulin intake went from 37 units to 8 units. What I'm saying I suppose is that this is not an over-nighter so give it time. In any case there is a way of getting it for free.

Thanks and God bless
Kevin

 
Old 06-19-2008, 08:30 PM   #11
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Re: Lots of questions from a first time lister

Welcome to newcomers!

I have had FM for over 15 years. My pain is worse in the evening, and if I have a poor night's rest, then I ache in the morning as well. I have extremely disturbed sleep and this impacts how much energy I have dramatically.

I have tried the Mona Vie, for about 4 months, didn't do much for me, but everyone is different. It's pretty expensive stuff and I was disappointed that I didn't get the miraculous results that some report. I do agree that supplements can be helpful, but you must be careful. There is no FDA regulation on these products, and the difference in production, blends, etc., can result in a tremendous variance in potency, even within a given product. In some cases, there is no information regarding long-term studies on side effects. You remember the "natural" weight loss product, Ephedra (aka Ma Huang)? It ended up causing strokes and heart attacks in many users before it was taken off the market. You also have to be careful how these products interact with pharmaceuticals. Do as much research as you can before you risk your safety taking some of these things.

Of course, that being said, legitimate medications prescribed by your doctor can cause health problems due to the side effects, so you must really pay attention to your body and how it reacts to things.

When I was first diagnosed, I kept a diary....tracking things like pain levels, what I ate, how I slept, etc., in an effort to work more effectively with my doctor on what worked, what made things worse, etc. I think it's worth the effort for everyone at some point in their illness. You will get to know what provokes a flare, although, if you are continuing to attempt to be supermom/superwife/superwoman, you will likely suffer more flares than if you try to rest as much as you can. Your kids will not remember how clean the house was when they were growing up, but how much time you spent with them. They will learn how to take it easy on you only when you take it easy on yourself! I left my career 5 years ago due to trying to keep up with it all, and I think my health really suffered as a result. Like blue says, we will never be the same, and I've slowly learned to accept that. My identity did not come from my job, but it took a while for me to realize that not bringing in a good income had no impact on my value as a person. As for those who question the validity of our illness....I cannot say how I feel about them without being banned for the use of profanity. It continues to be a problem for most of us and is never easy to deal with.

Try to take it easy and listen to your body....and leave the dustbunnies where they are....you're still wonderful and valuable!

Blessings,
TexMom

 
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