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10/14/12 6:55 P

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10/9/12 9:06 P

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I am on a maintenance dose of D-3 3000 IU per day. That are studies out there that are tell us when we are using the sunscreen thus blocking nature's way of providing Vit. D. Everyone should have a baseline test & go from there. It may or may not affect the FM pain but it is a necessary component for our health.

Eileen

Slow & steady makes a winner of us. Even if we hit pitfalls, get up. Know that a new day is right around the corner.
Try to be all that you can be. Work at it a day at a time.

"Be not afraid of going slow; be afraid if standing still" (Chinese Proverb)

With God all things are possible.

If you have the courage to begin, you have the courage to succeed.
~ David Viscott

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TOPAZ-TURTLE's Photo TOPAZ-TURTLE Posts: 489
10/9/12 12:37 P

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Before I was even diagnosed with fibro, my gynecologist tested my Vitamin D levels. He had participated in a study that suggested the prevalency of Vitamin D deficiency, and he automatically started testing all of his patients. My levels were very low (I can't remember the number), and he put me on a 50,000mg prescription dose - 1 pill a week for 10 weeks. Tested again, levels were still low. After another 10 weeks on the 50,000mg dose, my levels were finally in the right range. Then we tried a daily dose of 2000mg. Periodic testing showed that dosage keeps me in the right range, and he told me to remain on that for the rest of my life.

As I said, this was before I was diagnosed with fibro although I had a lot of pain. I asked him if the Vitamin D would help alleviate my pain, and he said probably not. He was right. So, while the proper Vitamin D level is crucial for your health, it may not make you feel too much better.

Edited by: TOPAZ-TURTLE at: 10/9/2012 (16:51)
Cathy, Co-Leader
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10/9/12 12:15 P

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Stupid Internet. emoticon

Well! I had crafted an insanely long response about an hour ago, only to have the interweb gnomes time out the page without actually posting, and now it seems to be lost forever. And lord knows I can't remember half of what I had to say now! LOL

But since then I came across this. Ask and you shall receive! emoticon

www.wholehealthchicago.com/1648/vita
mi
n-d-and-pain-control/


JUST-DUCKY, I.M.MAGIC is right. Most docs do not possess even basic nutrition training. I am lucky to have found an integrative doc (and a fibro specialist, at that!) who uses supplements and diet advice along with my pain control meds. We're still unlocking the right combinations for me, but at least he doesn't blow me off or think I'm crazy!

I've been taking a powdered capsule form of D-3, 1,000 IU in spring/summer and 2,000 IU in fall/winter, and my levels are in range, but after reading the article above, I'm going to look into the therapeutic (5,000 IU) dose in a liquid form (I have my BF on it, because his levels were shockingly low as well!) because it is indeed more bioavailable.

~*~
Angie
~*~


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
10/8/12 11:16 P

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JUST-DUCKY,
Keep pushing your doctor when you have a question like this. You don't have to be a hypochondriac, but the amount of nutrition training most doctors have is pretty minimal because they have so much other stuff to cover... I believe it's part of a doctor's job to answer your questions and help you educate yourself. You may want to consider a naturopath, they are more into the nutritional, holistic approach.

Personally, I see a number of specialists, and even they don't know all of it, they are constantly referring me to a nutritionist or my kidney specialist for this kind of issue... lol

I know, being a kidney patient with a profound deficiency ( and I live in a RAINY climate!), and actually have to take a prescription only vitamin D hormone because my body can't use the oral stuff very effectively... I went through all that and now for the first time in six years, my D levels are actually NORMAL! lol

Just a quick note though... if you're taking OTC Vitamin D supplements, be sure it's the Vitamin D-3. It's more biochemically available, and you won't need to take as much--which will also be cheaper for you in the long run!...

Kathy
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"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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10/8/12 8:24 P

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GIRANIMAL - my vitamin D was 13. My dr was reluctant to check it as he said vitamin D deficiency doesn't cause any of my symptoms. I has researched and knew different so had him check. He keeps telling me I need only to take the minimum. Drs really don't like us to feel better, I think.

I have been trying to have more veggies and fruit and less caffeine/artificial sweeteners. It's tough. I miss my soda.


~~Tina ~~


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10/8/12 5:26 P

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I am going to be looking at a different carbonated drink when we get settled in for the winter. I have found a lemon powder that is really tasty. I forget to take it with me when we eat out most the time but it flavors water very well. The tartness depends on the amount of powder you use.
Very busy 2 weeks for us here, trying to get everything done we need to. We are taking care of granddaughters in the midst of everything else. They are so fun & we miss them when we are gone!! Good thing there is Skype!

Eileen

Slow & steady makes a winner of us. Even if we hit pitfalls, get up. Know that a new day is right around the corner.
Try to be all that you can be. Work at it a day at a time.

"Be not afraid of going slow; be afraid if standing still" (Chinese Proverb)

With God all things are possible.

If you have the courage to begin, you have the courage to succeed.
~ David Viscott

MN. Sparks Fat Kickers Team Leader www.sparkpeople.com/myspark/


 
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10/8/12 1:19 P

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Hi all!

Sorry I'm so late to the party with this thread emoticon but I still wanted to chime in!

I can attest to the MSG and aspartame as pain triggers. They give me violent migraines, and many fibro suffers have what's called Multiple Chemical Sensitivity, so yes, most of us are the very people who should stay away from it! You have to read labels ... it's in soooo many things. Eileen (and others!) try some plain sparkling or mineral water (such as La Croix or even Perrier if you're feeling fancy and/or catch a sale) :) with a little juice mixed in, like someone else said. I'll use a lemon or lime wedge, or just a shot of PURE pomegranate juice. It's so expensive but lasts a long time that way! I would think that little bit might not be enough to mess with your blood sugar? Hopefully?

I have been gluten-free (and casein-, soy-, and egg-free) for about a year and a half. This was following a mini-cleanse where I went through major sugar withdrawal, so while I too would rather have a little of the real thing, it REALLY opened my eyes to how much sugar is lurking in everything! And research is showing it can exacerbate pain too. It ramps up inflammation in the body.

I am not sure if omitting gluten has really helped my body pain, because I have not dared to reintroduce it for comparison, but drastically cleaning up my diet has greatly reduced my headaches (including migraines) and most of my really painful digestive issues, though the latter took a VERY long time (almost a year!). I am happy to report I have recently reintroduced eggs and seem to be OK.

As for supplements, if I am off my fish oil for more than a week, I notice my pain ramp up right away. St. John's Wort works well for depression (but please work with your doc if you're on any kind of antidepressant already). Magnesium is also supposed to be important but I forget exactly why...muscle cramping? And I always, always take a B Complex to help with stress.

Also, get your vitamin D levels checked! Most of us need to supplement, and D is important for fibro pain, fatigue and depression. I also swear by a probiotic for general health, but esp. if you have the IBS-like symptoms or food intolerances that so often come with fibro.

JUICING: Been meaning to try it myself but it just feels so expensive! I even received a gently used juicer from a dear friend but have yet to use it much. However, anyone interested in juicing really should look up Kris Carr. She believes -- and her docs seem to agree -- she has halted her very rare cancer with a mostly raw foods diet! And she's just very upbeat and inspirational. Check out her website: kriscarr.com .

So there's my (probably more than) 2 cents! I know everybody's different, but hopefully that will help some of you!

~*~
Angie
~*~


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10/6/12 5:12 P

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After talking with my Dr. we are going to change things with meds as I "wean" off some and add tramadol. It is a work in progress.

I do use artificial sweeteners sparingly. I love sparkling peach water and that has one. Not sure what I am going to look for bu I do need the carbonation to thirst satisfaction. I don't drink soda pop so not a problem. I would say most of my other foods etc. are with real sugars and I like it a lot better. The blood sugars and A1C stay in a great range.I find the more fresh fruits I eat, the higher my blood sugars go so even though, I eat fresh when I can get my hands on it and as we head for our winter home in the orange & grapefruit tree land, I am going to continue enjoying even more as we get tree picked fruits.

Have a great day as well as tomorrow. Gentle hugs to all!! emoticon emoticon

Eileen

Slow & steady makes a winner of us. Even if we hit pitfalls, get up. Know that a new day is right around the corner.
Try to be all that you can be. Work at it a day at a time.

"Be not afraid of going slow; be afraid if standing still" (Chinese Proverb)

With God all things are possible.

If you have the courage to begin, you have the courage to succeed.
~ David Viscott

MN. Sparks Fat Kickers Team Leader www.sparkpeople.com/myspark/


 
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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
10/6/12 5:24 A

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I'm a what? Oh, my goodness! LOL

Thank you, CCIARROCC! You made my day!
Kathy
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"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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JUST-DUCKY's Photo JUST-DUCKY Posts: 15,335
10/5/12 12:40 P

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Great tip for the water! I should do that for my 4 year old too.

I read somewhere that water with cucumber and a little lime in it is really good too.

It's funny the little things we cling to that are so bad for us!

~~Tina ~~


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TOPAZ-TURTLE's Photo TOPAZ-TURTLE Posts: 489
10/5/12 12:09 P

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Hi Kathy,

I love your attitude -- sometimes laughter is the best medicine!!! And your advice is great too. Guess that's why you're a SPARK MOTIVATOR!!!

Cheers!
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Cathy, Co-Leader
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"Any day that my gratitudes exceed my expectations is a good day..."


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TOPAZ-TURTLE's Photo TOPAZ-TURTLE Posts: 489
10/5/12 12:03 P

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Hi Tina,

If I'm looking for something to drink other than plain water -- it does get boring -- I dilute some real fruit juice (not "diet" versions) with water, like cranberry, orange or grape juice. These are usually too sweet for me to drink full strength anyway. You might be surprised how little juice you need to make your water a bit tastier.

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Cathy, Co-Leader
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"Any day that my gratitudes exceed my expectations is a good day..."


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10/5/12 11:29 A

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Kathy,

I have been aware of sugar-free things causing problems probably for years and is it sad that it's one of the things I would probably have the hardest time with? I don't even like regular soda anymore and crystal light is a staple. I know without a doubt that I feel better without it but it's SO hard.

I'm finishing out my box of soda and not getting anymore. I've done it before and felt better for it, so I know I can do it again. The crystal light will be harder, as I really don't like plain water. I know most people learn to love water though and so that's my hope!

Thanks for all the advice. Such good stuff here.

~~Tina ~~


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
10/5/12 11:03 A

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A lot of folks with fibro advocate no gluten, too... but it's like everything in this world. We are all such a unique blend of traits,, and the fibro is the same way. We may have similar experiences but what we tolerate can be all over the place! LOL

I tried gluten free... no difference.

I'm diabetic and had been in the habit of using sugar free products. I didn't CHOOSE to stay away from them, but for one reason or another I had a period where the only "sweet" I was getting was from fresh produce. Then Thanksgiving rolled around and my dear MIL made some "sugar free" desserts specifically for me. I didn't even hesitate! LOL

For THREE DAYS, I was in a major flare-up. I didn't correlate the sweeteners with the flare-up-- until it happened again at Christmas...

emoticon AHhh... so THAT'S it! LOL

Diabetic or not, I DO NOT USE artificial sweeteners of any kind. I use real sugar. Yep... and my blood sugar has actually improved, too! LOL

My advice? If you're going to drink soda or any of that other stuff, don't drink sugar free. Artificial anything is not a good thing--and start looking at the labels, because the sugar in a single drink--not to mention the chemicals... Wow. You might as well eat a candy bar, it's probably healthier!

I know how hard a habit that can be to kick... but having a life that is more fun and more energizing would be worth it, don't you think?

My other tools for this have nothing to do with diet and more with attitude. Lack of activity, the wrong foods to eat, depression instead of laughter... hm.

If I stay focused on the outcome I'm looking for, it really helps me get through the temptations. Do I WANT this thing that is bad for me more than I want my life back?

That's an easy question to answer, isn't it? Doing something about it may not be QUITE as easy, but with that question in mind, it's easier than I thought it would be! LOL

Kathy emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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10/4/12 9:47 P

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Oh wow Eileen, I hope you get some good advice. As you can see, I'm not experienced..lol.

I'm excited to try this. I need to lose weight, but right now my focus is my health. I figure once I get feeling more normal again, I can get back to the weight loss.

Thanks for all the great advice.

~~Tina ~~


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JAMER123's Photo JAMER123 SparkPoints: (209,478)
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10/4/12 8:42 P

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A very interesting thread and I would love to try some of the suggestions, BUT, my question is what happens when a person has many food allergies and also on blood thinners where you "don't eat green". In other words, no foods with Vit. K.

I have allergies to tree nuts, bell peppers, cantaloupe, watermelon, plus other food intolerance's. I am trying to eat healthy and it is somewhat difficult. I take a multivitamin and the market removed any without Vit. K. so the blood thinner had to be increased. Now, I have found a multivit called Hair, Nail & Skin.

And yes, I am addicted to chocolate,sparkling flavored waters, and coffee. What a mess!! I do what I can and read lots to see what I can change or continue doing. Each of us seem to have different things that work for each one. I have talked with my Dr. and we are changing several meds to see if that is the answer for me.

Good luck for you all that have juicing help!! Sounds like a dream!! emoticon

Eileen

Slow & steady makes a winner of us. Even if we hit pitfalls, get up. Know that a new day is right around the corner.
Try to be all that you can be. Work at it a day at a time.

"Be not afraid of going slow; be afraid if standing still" (Chinese Proverb)

With God all things are possible.

If you have the courage to begin, you have the courage to succeed.
~ David Viscott

MN. Sparks Fat Kickers Team Leader www.sparkpeople.com/myspark/


 
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10/4/12 12:58 P

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Hi Tina,

I juiced for about two weeks for breakfast only. Then I ate veggies and fruits. I do green smoothies now, but really want to do the juicing again!
I don't like to cook that much eitherLOL.

I shredded carrots and raw almonds, then I added finely diced green peppers, celery, onion and some raw corn in the cob, ( I didn't know I could eat eaw corn. .so good) :) I think I added a few more veggies but I can't remember and stuffed them into a raw green pepper! Oh my so good. My meat- eating husband asked me this week if we could have that stuffed carrot, almond thing again! Hee hee!
Truthfully, I didn't know if I could do it either. That is why I am so amazed! I had been on a bread and sugar spree for a month previously knowing I was going to change my eating habits. duh! That's why I was surprised that I had no withdrawals.
No, you don't have to cook a lot with raw foods, because it's all raw. I did find I had a lot more dishes to do, though! Ha, but NO dirty pans. :)
I'm trying to think of sites I used. I just looked up raw foods. I did get a few books on raw eating. Again, I did attend a raw foods workshop. It was very minimal and not well done, but it spurred me on to victory!
Had to stop writing for a minute, a friend just stopped by to hand me a raw foods DVD, since I haven't watched it yet, I won't recommend it.
Tina, green leafy veggies are wonderful. Why don't you send me a spark email with your email on it and I'll send you mine. I can forward some receipes on it and photos of the food, too. We can chat more. I am using an IPad, so can't post my photos etc.
I'll try to help you with this as best as I can. i really do understand! Oh! Just thought of a site. Veggiekate. She is on SP and FB. I think her sp is Kashi. She is a registerd Dietician, vegan and writes the best receipes ever. We've been in touch for months. If her site name is not correct, let me know and I'll look it up. I'm afraid, if I close this to look, I'll lose what I have written!! Barb
emoticon

Edited by: SHIHJABO at: 10/4/2012 (13:01)
The scale doesn't determine who I am. It is made of metal, nuts and bolts. It has no feelings, no compassion.

My worth comes from who I am in Christ Jesus. I mess up too much on my own, but I can do everything with God's help.
TOPAZ-TURTLE's Photo TOPAZ-TURTLE Posts: 489
10/4/12 12:25 P

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Hi Tina... I just read the Summer 2012 issue of Fibromyalgia Network magazine, and there was an article about avoiding three food additives to improve fibro symtoms. They are glutamate (MSG), aspartate (found in NutraSweet and other artificial sweeteners), and cysteine (used as an improving agent in flour, baked goods, and in meat flavorings like boullion cubes). All three compounds are amino acids that are found naturally in protein, and in their natural, unprocessed form they don't do any harm. But when they are added as flavor-enhancers to processed foods, their blood levels can rise rapidly. Blood glutamate levels in particular are known to be linked to greater FM muscle pain. (This is just a summary of the article's key points.)

If this is true, it could explain why switching to a vegan or raw food diet might help alleviate FM pain. No processed foods - no additives!

That said, I haven't gone that route, but I do try to limit processed foods like lunch meats, canned soups, diet sodas, etc. Has it helped my pain? I don't think so, but It just seems like a healthier way to eat.

I wish you the best in finding what works for you. Hopefully, you are going through a temporary flare and will get back to a tolerable pain level.
emoticon emoticon emoticon emoticon emoticon

Cathy, Co-Leader
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"Any day that my gratitudes exceed my expectations is a good day..."


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10/4/12 12:07 P

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Thanks so much for the responses.

Barb, I literally am in tears right now. Your post moved me so much. I am so incredibly happy for you! I have so many questions though...lol. How long did you juice? Was juice all you had for each day? Do you have any sites that helped you make this transformation? I've heard that going vegan/vegetarian has helped so many others, I just don't know if I can! I need some help to try. I don't really enjoy cooking, don't you have to cook a lot with having only raw foods?

Sorry, I know that was a lot of questions.

~~Tina ~~


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10/4/12 11:41 A

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I was hypnotized to think of chocolate as discusting years ago by Paul McKEnna. Look up his web site. He can hypnotize you over the net for free if you are suggestable. It works for any food addiction.

"People will forget what you said, people will forget what you did, but people will never forget how you made them feel." ~Maya Angelou

http://www.mckenna.com/default.aspx?pi
d=9


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10/4/12 11:36 A

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This is a tough one, isn't it? I have FINALLY found something that has helped me. I have had Fibro for 20+ years and also RA etc. Because of the pain,I had finally resolved myself to a life of sitting and staring out of my window. In early August of this year, I changed that. I went cold turkey with my eating.
I went to a raw foods seminar and started juicing the next day ( cucumber, spinach, celery, apple, carrot, water and ground flax seeds) . Then I ate only raw veggies and fruits, no bread, dairy, sugars etc. I did drink coffee and tea, but only 1cup a day. I could NOT believe the difference. I thought I would go through sugar/bread withdrawals etc. NOTHING.
I started to feel good almost immediately. The first month, I didn't have the energy I thought I would have, but continued. After about three weeks, I added some cooked veggies, more beans and soy etc. I did go back to some bread products after six weeks.
I am now eating vegan and really loving it. Who knew???
My pain has STOPPED. I am alert. I am no longer depressed and I am back doing my volunteer police work. Allof this in two months! I still can't believe it.
I am taking 25 mg of Savella and some other meds.
I do eat nuts, soy, lentils, tofu etc. I have had three eggs in the 2 months just because, so I haven't been 100% vegan, but there IS a difference!!!
My friends had just about given up on me because of my pain and chronic suffering. Now people are saying, wow you look different. Your eyes are different. Your eyes are shining again. I mean I'm still very overweight, but my eyes and movements are telling the transformation.
I thought I would feel deprived, but not at all. I am actually LOVING this delicious food and more so LOVING feeling like a person again. TWO months and there IS a big difference. I am so amazes I could weep!
Of course, I have given you the general outline. I have seen my doctor 3x since the first of August. My first 3 appointments all I could do was cry, I was in so much pain etc.
This past Monday I saw him agai and he was amazed. My B/P was down30 points. My blood sugars are way down. No swelling in my ankles and I was laughing. He ran across the room and hugged me and said I was doing great and not to come back for six months! YES!!
I really do understand what you are going through as does everyone in this group. Talk to your doctor, but I would suggest going raw, vegan/vegetarian. I am a new person, literally and don't want to go back to my other way of eating because now I have a life. FINALLY!!

Gentle hug to you, Barb

Edited by: SHIHJABO at: 10/4/2012 (11:37)
The scale doesn't determine who I am. It is made of metal, nuts and bolts. It has no feelings, no compassion.

My worth comes from who I am in Christ Jesus. I mess up too much on my own, but I can do everything with God's help.
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10/4/12 10:57 A

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I know that the foods fibro patients can eat vary person to person, but I wanted to get a general idea of what foods to avoid that help you.

In the past, my fibro wasn't so bad but just lately I am in so much pain every single day. Sleep is hard to come by because I am in pain and get achy after being in a position for long. Daily activity is tough.

I was on desipramine (I don't know if I spelled that right) but my Dr cut the dose by 2/3 for some reason. It wasn't helping all that much anyway, but I definitely notice it's worse now.

I was thinking of trying to get off the med altogether and control this with diet,exercise and supplements (which I need to look up too since I'm not on any) so woul love some advice on that.

I know chocolate, caffeine, alcohol, and carbs are somethings I read to cut back on. I don't drink so that's not an issue but am addicted to diet pepsi, chocolate and carbs. If cutting these have helped others though, I'm up for anything. I just want my life back.

Thanks!

~~Tina ~~


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Anyone find anything that helps w/ fatigue?? 7/13/2013 4:37:54 AM
is everyone ok? 3/3/2014 10:07:10 PM
I'm back! 3/27/2014 11:18:15 PM
Web MD article... 7/30/2013 11:50:53 PM
Request for Poem 12/31/2013 11:16:17 AM

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