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  #161 (permalink)  
Old 08-01-2002, 06:54 PM
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Finally I am feeling better! I had a time of it with this last flare up. Between the pain, nausea, IBS, brain fog, and insomina it was rough, as you all know so well....well I am always getting this info...exercise, it helps with the pain receptors...I don't know how true it is but I have started to exercise everyday, baby steps, but more than I did the day before! Now I noticed....I feel better! Any thoughts anyone?

I pray we are all having a great day!

janet
  #162 (permalink)  
Old 08-01-2002, 07:25 PM
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The one thing I have found out with this forum is there are so many more sufferers with FMS, that are worse than me, so I shouldn't whine!!! Thank you all for teaching me not to complain! I pray we all have a pain free day soon!

Humbly,

janet
  #163 (permalink)  
Old 08-02-2002, 05:44 AM
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To Janet: I am glad you are having a good day! Yea! Many more.



:p To Carie: My last job 8 mo. ago was in Retail fine jewelry/diamond sales sales for a major chain that starts with Z****. I couldn't walk in to work and say"Sorry I can't sell today, sore jaw." I was having horrible problems with TMJ. Probibly related to fibro. Insurance would not touch it, and I couldn't afford their dental plan, so no go that way too. I had an hr. commute. I would wake up with my jaw so tightly clenched every morning that I could barely move it. But I figured hey I have all this time while driving. I would do "jaw arobics" I would crank up the music and start out slow I know it is really painful when your muscles are so tight. since the right side of my jaw was worse that my left, and I slept on my right side. I would start
there and slowly try to open my jaw up concentrating on working the muscles on the right side of my jaw. It was pretty painful at first.First I would start with a quarter inch. Open then close,open then close. then a half inch.Try to get to the point where I could open my mouth up 1" usually at about 1/2" to 3/4" my jaw on the right side would pop. Feel a little better.I would massage my jaw on the right side a little. But I didn't do that too long because I don't feel comfortable driving left handed for long.(No, I swear I am not making this up... I did this every day I worked driving in for 17 mo. 5 or 6 days a week. )Then I would try to get some lateral movement going and wiggle my bottom jaw back and forth till I could wiggle it pretty fast,then fast for at least 2 minutes. With my jaw loose enough to talk I would practice saying a,e,i,o,u over and over because you have open your mouth wide for vowels. All this"jaw arobics" would take about 45 min. By this time I was in a pretty good mood, partially because I didn't stew about work,or kids or husband,or money problems or pain or whatever. I knew I looked absurd doing these excercises LOL And believe me I did get some looks from other drivers ... and that made it even funnier! They weren't having as much fun as I was! Usually for the last 15 min. of my commute into work I would sing to rock,country,opera whatever it didn't matter. By the time I got to work I was ready to 'talk' and 'sell' and I was relaxed too.

Leslie9220

P.S. I never did this except if I was commuting alone.
  #164 (permalink)  
Old 08-02-2002, 01:56 PM
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Fibromyalgia, etc.

To Leslie9220:

Thanks for the story of how you did your jaw exercises! I love it!! I can just imagine the other commuters' faces.....!!!!!!!! I used to live in L.A. so that would have been pretty strange even for there. But I will try what you have done, and I am sure it will help. I do not have the problem as severely as you do, but still want to keep it from getting worse, so there's another exercise routine for me!

Seriously, if I don't keep moving in some way I am so sore I could just scream, so the more movement the better! Maybe that's why my house is clean...??? (Really, it's not that clean!)

To all the other great people on this post, thanks so much for the stories, venting, encouragement and ideas. I wish I could be at this post several times a day but am doing well if I get here once. But that's okay, because I'm doing the best that I can do.

It's time to fix supper, so will close for now. Again, thanks Leslie, and everyone else, for your prayers and support.

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  #165 (permalink)  
Old 08-02-2002, 02:00 PM
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I read a study on a medical website yesterday (www.medpulse.com) that reported that women with Fibromyalgia did a lot better with an aerobic exercise regimine than with a stretching and conditioning regimine. The study reported that over a 12 month period, the women had far greater relief from pain and greater improvement in sleep paterns and over-all reports of a sense of "well-being" in the aerobic group as opposed to the stretching group. The only problem was that the PAIN of starting up and sticking to the aerobic program was very difficult for the participants. The researchers also made it clear that their population did NOT include any Fibromyalgia patients that also suffered from anyother conditions. (Like so many of us do.)

Now ladies...could we have saved the medical community a lot of research money? I know I would feel so much better if I could exercise regularly. But I am one of the wimpy ones who can't stick with it because of the pain. I also have other medical conditions. I think we should invite the Journal of the American Medical Association and the American College of Rhumatology to participate in our board discussions here. I think we could have told them that we feel better when we exercise, but it HURTS us to do it, and it takes A LOT of discipline to continue to move in spite of the pain.

But for those of you who can move...I thought I'd share the latest news ... happy aroebicizing!


  #166 (permalink)  
Old 08-02-2002, 04:47 PM
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Pinkie Winky Try to keep moving

I know I feel better if I force myself to get out of bed every morning but some days its just too much. I always remember a saying that my dh dad used to say. "Do what you can, can what you can, and then put a lid on it" When I am having a bad day I think of that saying and do what I can, can what I can, and then I put a lid on it and I do not feel guilty for not being able to do more. ;-)

I do wish someone from the medical association would visit this thread and read the different problems we all have and then work on better meds, exercises, whatever, to help us live more productive lives.

If they could just lessen one of the symptoms, like the cramps, the aches, the headaches, the tmj, the sleepless nights, the utter exhaustion, anything, I know we'd all be extremely grateful.
  #167 (permalink)  
Old 08-02-2002, 08:11 PM
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My biggest complaint is that my "DH" gets so ANGRY at me whe I am in bad shape. I wish I could get support, compassion or at least understanding, but instead he just gets angry. It's an awful feeling. I know he feels overwhelmed at hving to pick up my end of the work-load, but still...a little sympathy for what I'm dealing with would go a long way to me feeling compassion for him too!

Wednesday I pulled out my back again while putting on a pair of socks! I hate that I have a bad back... Along with that, any time my back acts up it always causes the fibro to flare up. To top it all off I have a house full of people comming over tomorrow for my daughter's 12th birthday, and I can hardly move.

So I'm swallowing skelaxin and maxidone, and shuffling around like Igor in a bad remake of young Frankenstein, trying to get the place together for my daughter's big day.

So aerobics is out of the question for sure, no matter what the latest studies show...I'm just trying to survive physical therapy appointments! LOL!!!


I think I'll just lie here and practice those jaw exercises...at least it will keep the kids entertained....
  #168 (permalink)  
Old 08-03-2002, 04:02 AM
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I just read your post about doing the jaw exercises and stating at least it will entertain the children. I am so proud of you. You were in so much pain that you wanted to just curl up in a ball and hide but you found some humor, took some meds, and plowed on. I wish there was a blue ribbon icon I could put in here. You do realize that if you were not a woman, you would have curled up in a ball and hid.

As far as compassion from anyone not having this disease, I don't think it's gonna happen. They can't understand how some days we can function somewhat normally but other days we can't. They do not realize we'd give almost anything not to feel the way we do. My doctors for years just told me it was all in my head. I've cried a river over thinking I was inflicting this pain on myself because it was all in my head.

Try to keep in mind that even tho the hubby or the children or the parents or the friends do not understand and have compassion for you, there are hundreds of us that do understand and do feel your pain.
  #169 (permalink)  
Old 08-03-2002, 06:36 AM
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Ladyinmaille

Thank you, Linda,

Your words of support mean more to me than you know
Val
  #170 (permalink)  
Old 08-03-2002, 02:55 PM
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I am so glad that we have this thread to share our stories with eac other because it is only those who live with this stupid diease that truely can understand what we are going through. It hurt to breath some days and then other ddays I feel like I could walk a mile. I know better than to try that because I would be down for a month if I did.

Thank you for being here. I know that I can always come here and find someone who can support me.

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A friend is one to whom one may pour out all the contents of one's heart, chaff and grain together, knowing that gentle hands will take and sift it, keep what is worth keeping and, with a breath of kindness, blow the rest away.
 
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