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  #121 (permalink)  
Old 07-25-2002, 09:13 AM
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Dear Kelpie,

Wow, I didn't know Dr. Staud actually saw patients! I only actually saw him when he came to talk to the support group. I see Dr. Scott about every 4wks when my pain is bad, but when things are calm, about every 3-4 months. I know he takes new patients.

The support group is for anyone. The meetings are usually the 2nd Sat. of the month from 2:00 to 4:00 and they meet in the basement of N. Fla Regional Womens Ctr. The lady who runs them is Donna at dws7gru.net. She just changed her e-mail and this is the new one she gave us. I don't know if there is a meeting in August or not. I found out about them because I took a fibro self-help course through the arthritis foundation and Donna was one of the instructors. I would highly recommend to all ya'll fibro sufferers out there to check with your local arthritis foundation to see if they have this fibromyalgia course. It was a 6 or 8 week course. ( I can't remember ) You buy this great book called, " Your Personal Guide to Living Well with Fibromyalgia." You can get this from the arthritis people even without the course and it is a great book full of info, exercises, coping etc. at www.arthritis.org. Anyway the course was really good, very useful, I met some nice people, and found out about the group. Apparently if there is not a group in your area and you are interested in having one, the arthritis foundation will help out with organizing one. Even though we are in Gainesville, it is Jacksonville that is our "local" chapter.

Hope this helps. I'm really stiff and sore and tired today and so many muscles are complaining. I keep trying to think of all the parts of my body that feel good. At least I know it doesn't feel like this forever. A few nights of Ambien always makes things feel alot better for me. Take care. My husband is in Lake City today:p
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  #122 (permalink)  
Old 07-25-2002, 10:01 AM
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Hi, Migrainemama,

I found out about Dr. Staud last October on the internet because he had seen a patient from Lake City and published the article. His office asked for all my records and, after he had looked at them, they said I qualified for entry into the clinic, but the first appointment they had for new patients was for March 27th of this year I had another followup appt in July and my next appt. is in November, so there is about a 4-5 month wait between visits. However, he is very thorough and has done a lot of research into this illness, so I can say his recommendations have been a lot of help to me. One of his recommendations is for water therapy. My 1st cousin also has this illness and she said that the water therapy exercises made a huge difference for her.

Thanks for the info about the support group and the self-help course. I'm going to follow up on both of them!

I truly sympathize with how you feel today...I've had a rough week, too. I have to rely on a transportation service to take me to dr. appts. and last week on my way to an appt., my driver had an accident. Bad enough to be sick, but worse to be sick and wrecked! After the accident, my stomach was extremely upset all week and I ended up having spasms & cramps and had to go to the ER. However, ER dr. came up with something new to me...said he had heard that Zantac might help with the stomach thing that goes along with Fibro. It is his theory that dealing with the Fibro pain causes a person to have excess stomach acid from the stress & pain and, while it might not help, it certainly wouldn't hurt. So far I think it is helping, but it may just be wishful thinking!

Hope you feel better soon!

P.S. Does your husband know an Eleanor Cain who works at DOT here in Lake City? She is a close neighbor of mine.
  #123 (permalink)  
Old 07-25-2002, 10:25 AM
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Kelpie, You got the right info from the ER doc. My family doctor says the same thing...I take Pepcid Complete...its over the counter now, and I only take one. (2 a day is the most you can take.) It helps me with my queasy stomach. Of course, ask your own Doctor first. If its not time for a check-up,call and have the nurse ask if you can try this...

Hope we all have a pain-free day today!

janet
  #124 (permalink)  
Old 07-25-2002, 09:34 PM
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Fibromyalgia

Ladies,

Thanks so much for the wonderful ideas, prayers, websites, and just plain good info on this and related diseases! I also want my mommy!! She died about 20 months ago, and I just lost my mother in law (who was like my mom and lived with us over 2 years) about 6 weeks ago. My dad died in 1973, so I've not had parents for awhile, really.

Another factor to consider is the effect foods like white sugar, white flour and aspartame have on fibro. I've heard there's a lot of research on the dietary aspect; I just have not been physically able to do my homework on that. Also, I've just been diagnosed with Epstein-Barr Virus and so am even more achey and dragged out. Yuck!

I am going to turn in for the night, but wanted to thank all of you for the wonderful support and care you're showing to all of us in this discussion group. It really does help to vent, doesn't it?

Sorry this has to be short but I am not feeling at all well...!!

Blessings and Prayers!
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  #125 (permalink)  
Old 07-26-2002, 08:05 AM
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Fibromyalgia

Hi Carie,
I'm sorry you have been feeling so bad. I know how you feel though because I was diagnosed with Epstein-Barr too..I have been doing some reading on the white sugar,white flour, and other things that can make our disease worse. I bought the book The Yeast Connection and the the things Dr. Crook writes in there are really interesting. I know some of the others on this list have gone on this diet and it has helped them so I'm going to try it myself. I'm just not ready to give up on life if there's something I can do to make life better. I'm tired of being sick and tired.I know we all are.
I hope you feel beter soon..God bless you all..
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  #126 (permalink)  
Old 07-26-2002, 05:33 PM
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Fibromyalgia

Anita, thanks for the kind thoughts. Could you please tell me where I could find out some more on the yeast diet and the book Dr. Crook has wrote?

Thanks so much! I feel lousy so must rest, but thanks so much again!

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  #127 (permalink)  
Old 07-26-2002, 06:10 PM
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Well, Social Security disability refered to my Fibromyalgia as "some soreness and stiffness" ... what are my doctors writing in my chart?!?!?

I am now in the appeals process...I earned a grand total of $2,800 dollars in 1999, ( the last year I was able to work)...due in large part to this friggin' syndrome.

Soreness and stiffness??? I'd like the examiner who turned down my application to have a week or two of the "soreness and stiffness" I have every day, not to mention the fatigue and "brain fog".... Let's see her do HER job effectively.

OK ladies..I'm declaring war...it may take the next five years of my life, but I'm on a mission. I'm taking back all that FICA I've forked over for the past 23 years of my working life....It's my damn disability insurance policy, and I want it back.

Viva la revolution!:mad:
  #128 (permalink)  
Old 07-26-2002, 06:36 PM
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Lifestar, I didn't know about SSI? I thought if youare able to something, like answer a phone, this disqualifies you for a disability? My Dr. never mentioned this, how bad do you have to be?

janet
  #129 (permalink)  
Old 07-26-2002, 06:38 PM
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Hi Carrie, The Yeast diet you are talking about sounds like something I would like to try. I too have the symptoms and so many docs are not knowledgeable of the disease to treat it. It seems there is always another reason they come up with for the symptoms. ie: menopause, weight (duh), not enough exercise and on and on etc.. I am also on Wellbutrin and Paxil to help with the anxiety from the pain and frustration due to the fatigue. My mind wants to get up and go but the 'ol body just cannot muster up enough energy. Most mornings I wake up and swear someone beat me with a baseball bat during the night. Everyone has so many interesting ways of trying to deal with this disease and it's wonderful to have someone else to talk to about it that knows it really does exist and not in our heads.
Any help we can get is beneficial because somewhere along the way some scientist will come up with something that will really work at relieving the horrible effects of it. And prayerfully cure it. Babsheart:
  #130 (permalink)  
Old 07-26-2002, 06:41 PM
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chuckle

I don't know why heart was attached to babs.. LOL I wanted the little pink heart
Babs
 
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