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  #21 (permalink)  
Old 08-10-2004, 09:06 AM
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I received this in my email this morning..since Fibro, and inflammatory arthritis are in the same family..I found it interesting..myself I also crave oranges.

Does anyone else?


The study, performed at the University of Manchester in the United Kingdom, focused on the development of inflammatory polyarthritis, a type of rheumatoid arthritis involving more than one joint.

Scientists found that participants who consumed the most vitamin C from fruit and vegetable sources were three times less likely to develop inflammatory polyarthritis than those who consumed the least vitamin C.

Janet
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  #22 (permalink)  
Old 08-11-2004, 12:45 PM
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Obviously, nutrition contributes a great deal to our health in many, many ways!

I have always enjoyed citrus fruits, and often find myself "craving" lemonade or oranges. You should have seen me in my first pregnancy! LOL! I craved Grape-Nuts with fresh orange slices and shredded coconut on top!

In the meantime, I'm gonna keep on taking my Guai!

Cheerio!
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  #23 (permalink)  
Old 08-18-2004, 01:30 AM
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Tortoise Pace

I also have FM with several other coexisting conditions. I was diagnosed 4 years ago when my "flu" symptoms lasted for 4 months. If I hadn't had that hysterectomy I could have sworn I was pregnant! I've had to quit work and if it wasn't for my 4 darling sons and an even greater husband, I wouldn't have survived staying home. My escape is crafting & movies.
My biggest problem right now, is that I've developed a social anxiety disorder and have stopped all contact with people I know. I don't have a problem with strangers (they know nothing about me) but to walk into a grocery store with the possibility of running into people I know, I panic and my FM flares up that night! Along with this comes the depression and the paranoia.
Right now, my med treatment is just status quo and I'm afraid to try anything new because it took so long to get to this point. I read about guaifenisen several years ago and actually talked with a doctor in Washington who was involved a study that is to be published in the JAMA. She said that once findings are published here, most doctors accept it. (like their bible). I had one doctor roll her eyes when I mentioned this as a plausible treatment. I found another doctor.
I found a very good doctor (Internist) here in SLC that helped me a great deal as she specializes in FM and she has spoken all over about her efforts and findings. Her website is very informative. www.offerutah.org and her motto for all her patients is not baby steps but tortoise steps. Slow, steady and determined win the race. Here is another site I found that is very good. http://www.fmaware.org/fmOnlineNewsl...alingPower.htm and http://www.fmnetnews.com/
Vioxx helps with my pain but nothing touches the neuralmyalgia (pain along the nerve endings). They pop up when I'm stressed (like cold sores and canker sores) and travel along the nerves and can last for days. These spots feel as if I've been burned by a hot poker. The worst is around my eyes!
Does anyone suffer headaches (migraine-like) and what treatments have been effective?
Hope to find a friendly voice.
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  #24 (permalink)  
Old 08-18-2004, 03:30 AM
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Cyn -

I've found, for me, the Guai made more difference than anything else I've tried. I'm fortunate to not have the same problems you do, or too many other conditions - I do have hypertension, but that's "fixable" with medication.

I'm sure your docs are helping you with your social anxiety disorder (SAD). I'm sure you have done some research yourself and found that over 70% of SAD patients are helped with medication. Paxil, Zoloft and Effexor are the drugs of choice, and approved by the FDA, for treatment of SAD. But drugs alone are not "the" answer. It requires some therapy and some determination on your part to work on it. It's very understandable if someone is afraid or reluctant to put themselves in the situation of experiencing the horrors of those "panic" feelings! It's really hard to get past that.

It is entirely too easy to become isolated when we have a chronic disease - and fibro is worse than many because of the fatigue along with the pain. Do you have the problem I did with friends and relatives telling you there was nothing wrong with you when you knew inside yourself that there was something very, very wrong? It made me want to not be around them for a long time, but with the increased awareness of fibro that has become much less of a problem.

I struggled for along time with anger and resentment, but finally came out of my funk, and just accept the fact that this is my particular burden to carry. If people don't understand or accept, that's their problem, and will eventually turn back on them.

I work from home but have much contact with people via phone and internet. I'm able to get out and about much more, now, and finding that I'm a little uncertain at times. Having to relearn some social skills!

I feel for you, and hope you find some answers. My exercise program is now helping some. The exercises are very hard to make myself do, but when I do them I do feel better (the first 2 weeks were awful). I've found it is very, very important to do thorough stretching before I start exercising, however. If I don't, I end up with miserable muscle spasms and leg cramping.

Cheerio!
Elizabeth
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  #25 (permalink)  
Old 08-18-2004, 03:59 AM
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Welcome Cyn,

Glad you found this thread and thank you for the added sites to go and check out.

I have heard of alot of FMS sufferers that do extremely well with the guaifenisen treatment. It doesn't work for me.

I feel very fortunate that I get by now with 2-500mgs. of Naprelean at bedtime. It is prescription strength Naproxen, similar to Aleve. The vehicle compound is somewhat different.

I know exactly what you mean about the "hot poker" feelings, I have a place on my back that acts like that. I think that is alot easier to live with than yours..around your eyes? Yikes! That has to be so much discomfort for you..sorry.

I had horrible migraine-headaches when I was first ill for about 2 yrs. they would come on and I would have to leave work and get home before I couldn't drive...a few times my husband had to come and get me...I would come home, and take ice paks and head to bed..My hubby would cover me with as many blankets as he could, for the ice was so chilling on my head. It helped me, and I was able to cry myself to sleep. They seemed to get much better after 2 yrs...I still get them, but not like that...and I also found out a hot shower with the water running on my head, helps too...

I hope today is a pain free day for you.

Best Wishes,
Janet
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  #26 (permalink)  
Old 08-18-2004, 06:19 PM
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Hi Cyn,


Oh I do understand a lot of what you're talking about... I developed socia; naxiety disordder after my initial injury and becoming housebound. I used to check before going to the mailbox, in fear I'd see someone I knew in the street.. I've pretty much totally recovered.. although on "bad days" I really have to make myself et out there.. But I do it!



Unfortunately the Guai didn't work for me. But it did clear up my sinuses!! The "hot poker" feelings and the radiating chronic pain.. the feeling like a blow torch was being fired up aling the nerve paths.. the fassiculations.. all that improved when I started taking neurontin. it also improved my moods. I also take welbutrin, and I take topamax to prevent migraines.. because i was beginning to get basilar migraines, which affected my balance, and made it impossinle fo rme to stand or walk.. never mind pain...


Even though these drugs are "cotraindicated" in conjunction with oneanother.. I've had no illeffects, and still need occcasional medication for my other chronic pain conditions...


I also have a 9 yr old that has been diagnosed with fibromyalgia and JRA.. She used naproxyn... it works very well for her.


Glad you found us..
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  #27 (permalink)  
Old 08-18-2004, 08:34 PM
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I'm glad I found you all too!

Thanks for sharing and for giving me more options to mention to my doc, next time I see her.

On bad days I have a problem with cognitive functions and really have to concentrate hard to remember what I was doing and why. And try talking on the phone, I sound drunk.

I wanted to mention that a year ago, I was accepted into a study group for FM and CFS. My doc wanted to study the effects of massage therapy on her patients. I was accepted into the A group where I received 12 hour long massages over the summer. I didn't notice any difference until the 7th week and I felt great. My mother came to visit after that and I was able to keep up with her, and when she left, I crashed. But at the time, my bad flare up didn't last very long. I haven't had a good message in a year and I can feel great pain on the pressure points at the base of skull, neck, shoulders and inside thighs. My insurance will not cover this kind of treatment but they will cover chiropractors. I just found a chiropractor who uses message therapy in his treatment! I'm a little leary of them since the last one caused more damage to my ruptured discs. So in addition to FM, I have depression (Zoloft), obstructive sleep apnea (Cpap mask at night & trazadone), liver dysfunction (steato hepatitis & fatty liver), insulin resistance (glucophage), deteriorating disc disease (surgery). Somedays I feel like a mess and other days I can chalk it up to life on earth.

And yes, I've had many frustrating conversations with family and friends about my limitations. And the attitude was "it's in your head and your doctors are quacks!" I finally told them that until the letters MD followed their names, they spent upteen years in school, had a successful practice and developed a better bedside manner, I wouldn't listen to their opinions. So, now when they ask how I'm doing, I say "fine" which really stands for (frustrated, insecure, neurotic and emotional)!

Tell me, guys, what are some coping skills you've developed (besides talking with psych and meds) that helps you through the depression when you dwell on your body not able to do what you used to do or what your friends are still able to do. I feel so left out and frustrated. I get so angry with myself because my illness wreaks havoc on my emotions and I feel like I'm so raw and vulnerable that it's a blessing I stay at home. sorry, guys, just a down moment. I need to get back to my painting & crafts. It's my therapy.
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  #28 (permalink)  
Old 08-19-2004, 02:28 AM
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And yes, I've had many frustrating conversations with family and friends about my limitations. And the attitude was "it's in your head and your doctors are quacks!" I finally told them that until the letters MD followed their names, they spent upteen years in school, had a successful practice and developed a better bedside manner, I wouldn't listen to their opinions. So, now when they ask how I'm doing, I say "fine" which really stands for (frustrated, insecure, neurotic and emotional)!

Tell me, guys, what are some coping skills you've developed (besides talking with psych and meds) that helps you through the depression when you dwell on your body not able to do what you used to do or what your friends are still able to do. I feel so left out and frustrated. I get so angry with myself because my illness wreaks havoc on my emotions and I feel like I'm so raw and vulnerable that it's a blessing I stay at home. sorry, guys, just a down moment. I need to get back to my painting & crafts. It's my therapy.
I love your response to your so-called friends! I'm gonna use it! "Fine," indeed! LOL!

Coping skills? Cy, you've already listed some important ones - maintain a sense of humor as best you can. Hobbies. Distraction.

The pain and fatigue of FM / CFS affects each person just a little differently. When I get "down" I check in with one of my e-lists. There is always something to cheer me up (or someone who is going through something worse than I am whom I can cheer up). Focus as much as you can on things and people other than yourself.

Force yourself to do the things you know you need to do. Stretch throughly every morning when you get up and every time you have been sitting or lying down for more than 30 minutes. Stretching those muscles helps keep them from getting "frozen" or "gelled" - that's how I describe my muscles when they've been still too long - they just don't want to work.

Keep as active as you can. Yes, there are days you won't be able to do anything, but there are times that if you "push" yourself just a little, you can get a lot done and you'll feel better afterward.

Today is one of those days when I hurt every time I move and am so tired and fogged I am having a lot of trouble concentrating. This is NOT a day I will review the complexities of a complicated case! But it is a day I can organize a case, put it into notebooks, tab it and add page numbers. It isn't a day I will try to study or write on the article I'm working on, but it is a day I can call friends and listen to them. I'll get up after each 30 minutes of sitting (yes, I set a "flylady" timer!) and stretch. I'll go down in the workshop and set up for making pens tonight. I'll clean up the kitty box. And between tasks I will pray and take short naps. But even with frequent naps, I will keep as busy as I can, and focus elsewhere than on the cramping, fasciculations, and twitching of muscles and the pain and fatigue.

There is no "magic bullet" there is no magic cure. It just falls to each of us to learn which coping mechanisms help. And it falls to each of us to cope, positively, on a minute-to-minute, hour-to-hour, day-to-day basis.

Keep telling people you ar "fine." Eventually you will believe it yourself - to a degree. Keep redirecting your thoughts - when you catch yourself getting into a downward spiral, redirect to something positive. Remember to thank God - even for your fibro! We may not be able to see it from here, but even this can be a part of God's long term plan if we let it be. God does not send stuff like this to us - He allows things to happen through our own actions and stubborness, but will transform them to further His Will if we give them to Him. So I sometimes have to give them back to Him several times a day. I ain't perfect by any means!

So, keep on truckin'!

Cheerio!
Elizabeth
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  #29 (permalink)  
Old 08-19-2004, 03:14 AM
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Yup.. everything elizabeth said!!












No seriously.. I do say ditto to everything .. I get the brain fogs.. I avoid the phone. ( and sometimes people like crazy) my brain screams at me you idiot!! lol)

I love your response to people ( I have to write it down) and as fas as coping if anyone can think of more stratagies than the ones just listed.. please share...

One I have been trying is a self-help stratagy by Dr. Albert Ellis, called ERBT Emotional Rational Behavioral Therapy.. It's essentially a self-talk cognative behavioral therapy.

It teaches you to accept yourself unconditionally

You are NOT your diseases.. you are who you are.. all the wonders and the foibles. Accept yourself forgive your limitations and know that you LIVE WITH a disease... you are NOT the disease.

it helps when you can remember to use it, and it takes practice.

The book i'm working with is called "how to make yourself happy nad remarkably less disturbable" odd title, I know, but it has worked wonders in helping me break outof my miserable funk.. I wasn't even on these boards for months..

Gotta go drive shorty bomb to volleyball
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Old 08-19-2004, 09:01 PM
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Thanks guys!

thanks for all the great advise. It helps to know that others are working through their own issues and have found many successful ways to do so.

I am now having to deal with a carpool mess. And now I have a neighbor acussing me of being deceitful, lying, manipulative and selfish. I told her she didn't know me well enough to say these things and it was not deceit but utter confusion on my part. Wow, but she wrote a rip-roaring letter to me and now the upset has caused pain in my face. I wrote a nice letter back and told her she was missing out on a great friendship with me, because in spite of my faults, I at least was good for a laugh! because of my faults. Wow, to finally admit that I'm human - it's liberating and a little scary because now...everyone else knows. Yikes. LOL
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