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Old 05-19-2004, 08:21 PM   #1
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typingterror HB User
Fibro support group

Went to rheumatoid arthritis seminar tonight so I could get a good look at rheumatologist who I will be seeing next week. I really like her as she stated that when you ask your doctor questions and cannot get an answer it is time to change doctors until you find one who will give you the answer. I met a wonderful fibro pal who is determined as I am to start local fibro support group. We are going to call it PIP (Partners in Pain). The rheumatologist stated she would not address fibro at seminar as it was for rheumatoid arthritis and fibro was too big of an issue to address which I respected her for. We met with her for a few minutes after and she stated she would be glad to give a seminar on fibro. Also, found out there is a neurologist who comes into town once a week and he will be happy to give a seminar. Someone asked her about benefits of cherry juice. She said she is bombarded with this question daily and stated to go ahead and drink it if it makes you feel better as it would do no harm which she is sure would make the cherry manufacturers happy. However, she would not endorse this product as she feels that it is just the latest fad and will soon be replaced by something else. (TT)

 
Old 05-23-2004, 02:20 PM   #2
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mollymadison HB User
Re: Fibro support group

Great! What city is this going to be? I would love to learn more about fibro

 
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Old 05-25-2004, 05:54 AM   #3
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typingterror HB User
Re: Fibro support group

This will be in Fond du lac, Wi. However, I will have to temporarily put on hold until I get more stable healthwise as girl who was originally so interested apparently has lost interest and this is an impossible task for one fibro patient to take on alone.

 
Old 05-26-2004, 08:37 AM   #4
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WICHRIS HB User
Re: Fibro support group

Hey TT I was wondering how your appt. with the rheumatologist went- from
what you have posted about the seminar you attended she seems at least
initially to be a compassionate,open doc so I am hoping she will be able to help you out. I am not far from Fond du Lac so I also would be interested
in a local fibro support group. I may be able to even help you out some with
the set up,etc.I am a health care worker myself so I have set up seminars,etc
with medical speakers before back in college.However, I am somewhat limited
lately as I had an MRI a couple weeks back and I have a cervical disk that is herniated with spinal cord involvement so I am waiting for upcoming tests-EMG,etc to see if surgery is warranted. Take Care TT and let me know how
your appt. went...

Chris

 
Old 05-26-2004, 11:04 AM   #5
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typingterror HB User
Re: Fibro support group

Thanks, Chris. I have my appointment tomorrow with rheumatologist. Initially I called hospital about meeting room there as I figured everyone could find hospital. No room at the inn basically unless they sponser support group. I then called something like welcome center for ideas and they gave me several suggestions, however it would probably be better to meet at restaurant that has meeting rooms, but have not checked out very few available as of yet. That is problem with fibro as sometimes you sink so far down that you are lucky to get dressed with your pants on right way. I have earmarked places to advertise for people interested if rheumatologist can help me get my act together where I am at least stable. Keep us posted on your test results. I certainly hope they find a solution without surgery. What city do you live in? (TT)

 
Old 05-26-2004, 01:46 PM   #6
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WICHRIS HB User
Re: Fibro support group

Hey TT I hear ya about the ups & downs of this illness..unfortunately I seem
to have much more downs... are you currently taking any medications right
now for your fibro ? I have heard there are some new meds coming out
specifically to be used on fibro but I will believe it when I seen the clinical
trial data. As to your question I live in Thiensville ( a suburb of Milw. )- I
have passed Fond du Lac many times on 45 on my way to Green Bay. Are
you a Packers fan as well?..Take Care & I hope your rheumatologist appt.
goes well tomorrow ....

Chris

 
Old 05-27-2004, 06:20 PM   #7
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tkgoodspirit HB Usertkgoodspirit HB User
Re: Fibro support group

typingterror, I know that if you search the Internet you can join support groups online. I know of online support groups that zero in on Fibromyalgia. Granted, some of them may depress you more than help you, but there ARE some really good ones there. Try to search around the Internet and see what comes up.

There is a Fibro support group at one of the hospitals near me (well, not really near, it's over 20 miles, but I live in the boonies!) that meets once a month. I haven't gone, basically cuz it's at 7:00 p.m. and the drive is so far, but at least I know it's there.

Anyhoo, try to find one online.

Good luck
tk

 
Old 05-28-2004, 07:25 AM   #8
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typingterror HB User
Re: Fibro support group

Thanks. The rheumatologist also stated that I would get support at aquatic therapy. However, their heater is presently not working so will have to keep calling back until it is fixed. I stay away from big internet support groups as they are too overwhelming to me and then I just sit and cry about everyone else's intensive problems which does me more harm than good. I also stay away from support groups that are overly religious as one faith falters immensely when in so much pain all the time. In fact, one doctor told me to stay off the internet. In actuality I should have just stayed away from her which would have done wonders for me. The Flexeril did help last night with me getting more sleep so symptoms have subsided greatly today getting rid of extreme constant nausea especially which gives me hope for some stability finally. (TT)

 
Old 05-28-2004, 07:39 AM   #9
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taurus3 HB User
Re: Fibro support group

So glad to hear the flexaril is helping. It's one of my favorites. I know what you mean about losing faith sometimes. I'm not a very religous person but I've always been spiritual. Suffering for days and days with no relief can turn me into a crying, life hating basket case once in awhile. And it's so hard to have patience with other people.

I hope you get to go hot tubbing soon.

Good Day - Andy

 
Old 05-28-2004, 09:05 AM   #10
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tkgoodspirit HB Usertkgoodspirit HB User
Re: Fibro support group

Quote:
Originally Posted by typingterror
Thanks. The rheumatologist also stated that I would get support at aquatic therapy. However, their heater is presently not working so will have to keep calling back until it is fixed. I stay away from big internet support groups as they are too overwhelming to me and then I just sit and cry about everyone else's intensive problems which does me more harm than good. I also stay away from support groups that are overly religious as one faith falters immensely when in so much pain all the time. In fact, one doctor told me to stay off the internet. In actuality I should have just stayed away from her which would have done wonders for me. The Flexeril did help last night with me getting more sleep so symptoms have subsided greatly today getting rid of extreme constant nausea especially which gives me hope for some stability finally. (TT)
Boy too bad about the heater in the pool. I have been to Pool Therapy before, and it's nice. That warm water feels good. It is SO nice to be able to talk to other people who know how you feel. I agree with you about some of the support groups on the Internet. They can be depressing and the religous ones are too controversial. (spelling?) Let's face it, not everyone's faith is the same, and there are too many folks out there that want everyone to believe what they believe. My personal thought on all that is, if we all believed the same thing, how boring would that be, no one religion is better than the other, and I like the idea of learning about other people's beliefs, it broadens my persepective on life.

That is great about you getting some sleep. I know that makes a big difference. Hopefully soon you can get a regiment of meds that will stabalize your symptoms. I know Klonopin is another good med to take at night. It's an anti-anxiety med and it's pretty strong, I only take 1mg at bedtime. I do take Flexeril, 4mg three times daily, but I've been on it so long, I am going to ask my rhuemy about Soma next time I see her. Isn't this fun? All these meds! Like Russian Roulette! I know that there are studies for a couple of meds specifically for Fibro and hopefully they will be approved soon. It will be nice to have our "own" meds, it'll at least make our condition one step closer to being treated with more respect in the medical field.

Wishing you a pain free day!
tk

 
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