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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
2/13/12 6:50 P

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LOL


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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,513
2/13/12 5:17 P

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Thanks Bekahbell, Postdocfromsf, and CWpraiscj1’. I too, like to see what others are getting.

As for docs I have both. They compliment each field with information and options. I do declare and discuss with each and both which option I choose to take. This can become a political nightmare and mostly they are allowing me to choose the least painful and cleanest ones.

Alaskasky- are there any books from your perspective I should know about?
emoticon

The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
2/12/12 9:45 P

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Naturopathic or Endo?

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ALASKASKY's Photo ALASKASKY Posts: 6,159
2/11/12 2:00 P

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I will have to check out this book. Thanks.

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2/8/12 11:43 A

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I took the advice in that book I read "fighting fibromyalgia" and keep it simple for now (and this was approved by my Dr, who also gave me a couple other suggestions, but when I did my own reasearch, found that they probably wouldn't do much good for me)
I take a Triple Omega (3-6-9) only twice a day right now, but will be upping it to 3 times a day, as recomended.
Super B-Complex (B6 and B12)
and Vitamin D3 (2000i.u.)
all in pill form (liquid gels except for the B Complex) My sister is working on some circulatory herbs for me, and I currently take liquid Devil's Clove morning & night because I'm trying to reduce an ovarian cyst. So keeping it simple has been difficult for me, because it still seems like a lot! I take everything in the morning with breakfast, and then another omega and the devils clove with dinner. I am also still taking Meloxicam (because I'm scared not to, even though after reading about that it is probably not really helping me) morning and dinner.

Bekah :o)



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POSTDOCFROMSF's Photo POSTDOCFROMSF Posts: 139
2/5/12 9:13 A

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Thank you so much Margie for taking the time to share your regimen. It really helps me a lot to see how you handle your supplements, nutrition, and rest. I feel less overwhelmed by my own regimen knowing that the complexity can be managed. I greatly appreciate your kindness.

B

"It is not the power of the curse, it is the power you give to the curse." -- From "Penelope" by Leslie Caveny ninamatsumoto.wordpress.com/2010/12/
18/athletic-body-diversity-reference-f
or-artists/#wpcom-carousel-1869
tinyurl.com/6pldo89


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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,513
2/4/12 2:24 P

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Yes, this is a personal question. I am not a doctor but I like to help. Here is my honest answer. My program has “B”; “C”; “D”; “E”; AND “K” with minerals and amino acids and enzymes in various forms. I take them with food; as directed by my Doctor of Nutrition. One single multi-vitamin is usually laced with something I must avoid and as a whole day power it missed too much. I do not consume stimulants like caffeine so calcium is digested not flushed out with each cup of coffee or green tea or other digestive canceling stimulant. I like to eat some food then swallow a set of pills capsules and whatever potions then finish a meal. I get queasy and nauseous if strong things go into an empty stomach. Sometimes when I take a fish oil it will dissolve the capsule encasing to open before hitting my stomach. I like to push it down with the last bites of whatever.

I was once told to take in no more than 600 mg of calcium average in a meal or the rest just goes out the other side undigested. Mine is a citrate chelation carrier with only fillers I can tolerate. I take my magnesium in the after noon or late in the day and calcium citrate last evening (sometimes midnight) snack with a genuine time separation between the two. It is so important for pain control to have calcium and magnesium daily.

Eating less in each session is a form of lowered stress. I have grown very comfortable putting nutrient dense clean food in more timely events per day (three light meals with two snacks) works for me. Sometimes my ritual is to serve each course separately one at a time instead of mixed together and wolfing it down in shovelfuls.

My pattern is one fish oil; one (B5) Pantothenic; one 5-HTP; and one Malic acid for each set; since these need separations for my body to best absorb them. It disperses great fatty acid capsule; a little pain reliever, and a soothing brain neurotransmitter co-enzyme capsules every few hours. The other assorted supplements are one or two per day and the placement depends on doctors’ suggestions, laboratory blood work results; and signs of comfort to my circadian rhythm.

My vitamin “B” complex has a higher than FDA ‘normal person’ guidelines. I take; 5000% of “B1” and 1250% of “B12” with assorted other “B” forms including PABA, Choline, and inositol in small amounts each day in my once daily capsule.

My vitamin “C” comes in a dehydrated powder. This vitamin should not be taken with sweets-as in chewable sugar pills. They cancel out and make digesting and absorbing harder. Too much of this can cause gut issues and diarrhea. This gut issue is soothed with catnip capsules: 2 every other hour until signs are gone then back to preventative dose again. I scoop 1 gram each day more on infection days. Some people are so hungry for “C” they can take in 12 scoops for days! I also use this powder for ‘preserving fruits and veggies for freezer storage since I am so intolerant of commercially preserved foods and medicines.

I was taking in three small doses of vitamin “D3” to a total of 3,000 mg (3grams of 1,00mg per capsule). To allow for a cheaper cost (again doctor suggested) I tried to consume a single capsule of Vitamin “D3” 5,000 mg (5grams) in a single daily dose to find a serious ouch.

My system is very sensitive and I have learned to read the signs. A structural altering is a bump in the road for a week or two and through phone calls to my doctor adjustments can be tolerated gradually.

My body likes the gradual small doses not monster amounts all at once. I take bioidentical hormones but everyone is different so I have not mentioned what and how much here. Either way the goal is better health that includes deep sleep; low stress; and over all pain-free health. Does this give you some idea of the non-solo doctor supervised steps to the best me? I can be stubborn and do it all myself but through channels of know-how and readily available advice my own confidence in areas of self care will improve.
emoticon

The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/29/12 6:46 P

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Good question; I feel that way too! emoticon

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POSTDOCFROMSF's Photo POSTDOCFROMSF Posts: 139
1/29/12 6:32 P

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Yes. Thank you so much for the info Margie100%Pure. It helps me refine my own regimen. It does help to know that I am not the only one who must live 100% pure.

BT

By the Way: If it is not too personal a request, I would be very interested to know how you schedule your supplements throughout the day. I feel overwhelmed sometimes taking all of my supplements in a day.

Edited by: POSTDOCFROMSF at: 1/29/2012 (18:42)
"It is not the power of the curse, it is the power you give to the curse." -- From "Penelope" by Leslie Caveny ninamatsumoto.wordpress.com/2010/12/
18/athletic-body-diversity-reference-f
or-artists/#wpcom-carousel-1869
tinyurl.com/6pldo89


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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/29/12 4:30 P

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Wow! Alot of great information; THANK YOU!
Cindy

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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,513
1/29/12 4:08 P

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Hi, everyone, and welcome newbies.
From my perspective; I totally understand that ‘tired of tired’ and ‘tired of pain’ realities. I use a natural approach. The supplements are winning at curbing pain day and night. It is part of my personal strategy with my special ‘Find it and Stop that’ diet. It is a best for my low glycemic; Gluten-Free; artificial anything-free; and very important sulfite-free cook at home program. My Naturopath has me on Malic acid and Pantothenic (vitamin “B”5) to complement my array of assorted supplements including; whole “B” complex, extra vitamin”E” with EPD and DHA (of full potential in every capsule of the fish oils). It is wonderfully effective with my improving daily habit to find what cause me pain and swelling then stop doing it and taking it in. If I do not eat foods that cause inflammation, stimulation, or high glycemic spike then the world is sweeter for me. This is where supplementation is balanced to replace the foods I can not eat.

Here is my current testing improvement; I went to a Golden Corral Restaurant to just be with the family eaters when getting out of the car a great feeling came over me. We have visited this buffet style restaurant a dozen times before. This time the awkward feeling of not eating with them has settled to a light annoyance. The over-all body ache was deliciously missing. The head aches have become so mild I had to think about the low level. The usual tongue rubbing a sore-like action (of testing my pain depth every other moment) detected genuine dull ache but not to the point of evading conversation with a scowl on my face. My brain fog-funk has lifted, too! I was witty and laughed with them and brought up a few interesting points in the talks. I never eat in restaurants anymore. The results always haunt me. The ‘approved for public’ foods are poison to me.

I have hit a stride with daily quotas. I have learned to not make the toxins beyond my body’s ability to process them. Now I avoid eating my wrong foods, beverages and medicines. And I do not feel the pain generated from ingesting them. I have a slightly better handle in family structure and can avoid doing the serving and mixing and cleaning that spends what little genuine energy I can make under my old hostess hat. I stop electronic everything 1-2 hours before bedtime. I avoid eating in restaurants completely. Learning to scratch cook everything was hell. If an event is planned for a public place I bring my own so I know where it has been and cross-contamination is less possible. I can measure out as needed any Co-Q10; Ribose; 5-HTP; and live with out visiting pain needlessly; thanks to my dedicated professionals who advise me.

I am not using prescription pad: sleep aids, pain meds, or inflammation teasers, or antidepressants. My supplements are never insurance or government sponsored or provided, yet! I sleep 5 and sometimes more continues hours per 24 cycles. This is working for me! I attempt to recline without electronic or external stimulation for 30 minutes twice per day. This and many of the habits and tools I have for this combination diagnosed Fibro/Chronic Fatigue/ and Adrenal Fatigue Syndromes are straight out of the books. I have learned to wean the toxin making of food medicines and extra motions down to a science.

The body makes toxins but can process without pain, normally. I have found my normal. It is extremely well below the motion radar of FDA ‘normal’. It sits on the side of couch potato. My support from Doctors of Nutrition, Chiropractic Specialist, and Endocrinologist do their best but it seems to never be enough. I must find my own happy. The old rules I once used successfully in life are not effective. I ask tons of questions.

I avoid wheat-corn-rye-barley-soy-buckwheat-nuts-d
airy-hormone and antibiotic laced proteins-most legumes in processed and organic forms known as environmental allergy irritants. I avoid all prescription medications with the contradiction in this therapy in supplements and hormones of bioidentical forms; they are so concentrated, pure, and free of fillers, colors, flavors they are called pharmaceutical grade and compounded formulas. These are expensive but the results are nearly painless everyday. And toxin control is much better. I make no more than my body can handle. This is a big positive side-effect …I can sleep!

Sulfites and citric acids are real and found in every food group in the food pyramid.
See the hyperlink …
These I sort of understand, am learning more everyday, and have avoided in amounts higher than about 6-parts-per-million-per day as a goal. The FDA assumes and approves of 10 ppm in each dose or serving in food and medicine and in preservatives on the market today. This is a biggie to me.
My keeping tabs with limiting motion and controlling sulfite intake are currently my two meanest weaknesses. These are the topics most doctors do not guide very well. Are you avoiding sulfites? Fibromyalgia people understand the need to limit motion and do not know or fully comprehend the chemical and mechanical whys and often exceed this limit. Like a child we all too often test the boundaries. I am more motivated to follow the ruling when I realize the reasons why my body needs the changes. The Krebs cycle is taught in health science for professionals and should be explained to people with energy weakness.

Are you aware of the human immune weakness 2 out of every 4 week time period?
This cycling is assumed to be a hormonal moon-time; felt by females and males of mammal origin. This also is the hardest hit ‘ouch time’ for adrenal and immune weakened individuals. It is more common to catch a cold or flu on this down side of the cycle or month. When we feel okay we tend to do more than we should and sometimes we can get away with it. The times we do not slide past without undue pain are usually within those 2 weeks of immune lowest in a 28 to 30 day cycling. The cycles are measurable. Fertility specialists have people measure body temperatures. Temps below 98.2 are danger zones as proven in scientific studies; termed Wilson’s Temperature Syndrome (different Dr. Wilson). Knowing your own cycles can help find the best times and hunker down before the bad ones hit.

My favorite books to lead to this glory are:
Treating and Beating Fibromyalgia, by Dr. Murphree
Adrenal Fatigue, The stress syndrome of the 21st century, by Dr. Wilson.

See Krebs cycle, also known as Citric Acid cycle to better understand energy creation in the body. Knowing this and reading these books have sure helped me.
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Edited by: MARGIE100%PURE at: 1/29/2012 (16:41)
The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/28/12 9:43 P

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BT, I agree with you. We do not do this for attention; why in the world would we? This is awful! I wish you good luck, hun. Looking forward to sharing thoughts and ideas with you.
Cindy

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POSTDOCFROMSF's Photo POSTDOCFROMSF Posts: 139
1/28/12 9:24 P

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Thank you all for your comments. I have had CF/Fibro for many years. I been through many of the treatments, even twice in some cases. Lately, I had been doing so much better because I had identified and eliminated all the foods I am allergic to, and avoided as well as possible the airborne allergens that I am exposed to. I was exercising and taking my supplements. I was feeling pretty good. Occasionally, I had to deal with a few mild asthma episodes but that was it.

Then I went on a date. I had not been to the restaurant in a few years. When I walked in, I felt that it was a little run-down looking, but I shrugged it off. I picked the item on the menu that was least likely to contain allergens. I double checked with the waitress and told her that I had food allergies. Just like many times before, I was ASSURED that the meal was allergen-free. A few hours after getting home, I was hurling. I was worshiping at the porcelain throne for six hours.

I was weak as a kitten for the next three days. I was slow-walking three days after that. I finally felt up to exercising after a week of recuperating and all went well. I felt okay. I walked again the next day and still felt okay. I thought, "Hey I can probably get back on my training routine again." So the next day I went out to play nine-holes. I was digging divots by the fifth hole. By the afternoon the fatigue had me. By the next day, the pain was surreal.

I had to cancel everything. As it has been said before on this thread, I am tired of being tired and I am tired of being in chronic pain. The pain is subsiding slowly. I feel like I am starting from square one again. I hope I don't need to start getting shots again, but I will if I have too.

I suppose it makes it harder when friends and family try to tell me that it must be "something else". I am so bloody tired of living with a chronic condition that most people think of as psychosomatic. This is not a game. This is not a choice. I am not trying to manipulate people. I do not want to win attention with this. I like my life so much better when I am not having a flare up. I think I got caught this time because I was trying to act like a normie. I am so tired of not being normal. Yet another life lesson about being who you are.

BT



"It is not the power of the curse, it is the power you give to the curse." -- From "Penelope" by Leslie Caveny ninamatsumoto.wordpress.com/2010/12/
18/athletic-body-diversity-reference-f
or-artists/#wpcom-carousel-1869
tinyurl.com/6pldo89


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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/16/12 3:02 A

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LOL Kathy! So now my pain specialist has put me on Gabipenton (sp) and the side effects are half a page long! I am thinking ok, well I am taking it for 'now' (its been about 10 days now) but it is not going to be a long time thing. Even if I have to have neurotransmitters or surgery, it is better than being on these pills. I see my pain specialist again on the first of Feb.
Cindy

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
1/16/12 1:54 A

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Cymbalta? Let me see... nausea... vomiting... dizzy... blood pressure problems... DEEP depression... no thank you!

I'm sensitive too... a problem a lot of us seem to have...
'

Kathy emoticon 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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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/15/12 9:27 P

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Ha! You sound like me! The side effects were far worse than the pill!

I have anxiety from the other prescriptions that I am taking and I hate it. I am always trying to figure out a way that I don't have to take the pills but am presently only taking the ones that I think I really need to take.

I haven't had as many 'crashes' in the last few days so I hope I am on the right track. I would love to be able to help others in this 'fatigue war'. I hate feeling like this as I know you are and everyone else on this site.

Hope to keep in touch with you and see how you are doing! emoticon
Cindy

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ALASKASKY's Photo ALASKASKY Posts: 6,159
1/15/12 1:20 P

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I took Cymbalta for about 8 months, more for depression than fibro. I had all kinds of symptoms and my doctor at the time told me i needed to stay on it for at least a year in order to get the depression under control. I decided I couln't deal with the side effects and went through a nasty withdrawal. I know this is never the right thing to do with any medication, but I wanted to get off. Now I depend on other techiques to deal with the depression and so far it hasn't gotten too bad.



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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/13/12 1:37 P

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I took the Cymbalta for about 6 months or so. When I got the 'brain fog', is when I quit taking the Cymbalta, the Vicodin, and several others that my doctors had me on, I was so desperate I felt like I had to do something. I walked around all the time like a zombie, sweating cold sweats and could barely concentrate, almost passing out all the time, extreme anxiety and confusion. This went on for about 2 years before I really knew that something in my body 'broke."
I am without the brain fog now, (thank you God,) grilling the doctors with what they attempt to give me and being ever so careful with what I put in my body. Doctors do not always know what is best and I learned the hard way. I think it almost cost me my life.

Edited by: CWPRAISINJC1 at: 1/13/2012 (13:39)
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1/13/12 10:58 A

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I was taking Cymbalta for a year and had episodes of fainting after standing. The Cymbalta did make me feel better at first. My doctor said the Cymbalta could not have caused it so I kept taking the Cymbalta. Then I stood up quickly, fainted and broke two toes. I Googled Cymbalta and fainting and found pages and pages of discussion. The discussions also talked about increasing fatigue and Cymbalta. I weaned myself off of the Cymbalta and had more energy than I had in years. I was sleeping 12 or so hours at night and then taking a 2 hour nap. I now sleep 8 hours a night and usually don't need a nap. Right now I am in a flare and have pain and not so much energy, but I know I feel better than with the Cymbalta. Let's hope we can all feel better this New Year!!!

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/13/12 8:37 A

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This is the first time that I heard that Vicodin made Fibro worse too. But for whatever the reason, my body built up a resistence to it and it didn't help anymore anyway. (I had been on it for over 20 years) I, for one was happy to get off of it. I hated it. I would love to get off of all of them. I actually tried to but had to come back and get on some pain meds anyway. (darn) I went cold turkey in October and took myself off of all my medications. I at least feel better than I did then but would not suggest anyone else doing that. whew!

Edited by: CWPRAISINJC1 at: 1/13/2012 (08:38)
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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
1/13/12 3:49 A

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I have never heard that Vicodin (hydrocodone is the generic) made fibro worse--only that it didn't really help most fibro patienst, that a lot of people with fibro have a resistance to it, so it may make them sleepy at first, but they often will end up taking more and more of it (and often without consulting their medical team first!) in a desperate attempt to dull the pain, until the acetaminaphen in it damages their livers... I've also heard that steroids are no help with fibro--but I've been prescribed them on occasion when other things flare up and it always helps the fibro too. I just can't STAY on THEM, y'know? LOL

The Vicodin actually helps me... but I don't take enough to kill the pain. I don't WANT to live my life in la-la land. LOL

I take enough to take the edge off so I can function, extra only during a flare, and that only because nothing else we've tried has worked.

Kathy emoticon

Edited by: I.M.MAGIC at: 1/13/2012 (03:51)
"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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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/11/12 3:26 P

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Hi Mark! Well for what its worth I was able to sleep more last night. I did go in for the last of my IV Therapy yesterday so that may have had something to do with it. I have to pick up my bio identical hormone that is in place of this estrogen that I have been on for over 10 years. Hope that one helps too. (my family hopes so too) lol
Cindy emoticon
Seems like all of these prescriptions tend on add on weight though; whats up with that?

Edited by: CWPRAISINJC1 at: 1/11/2012 (15:28)
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
1/11/12 1:11 P

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Cindy, it sure does. I wish it would make all the fatigue go away but it does help me. The first couple of nights I took it I had problems sleeping because it did give me a boost. But I guess I then adjusted to it.

Mark
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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/10/12 1:03 P

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Hi Mark.
I never got dependent on the Hydrocodone; the doc just said (for what its worth) that it makes the Fibro worse (he did not explain why). But I never took it at night. It would make me have more energy. Wow. I have never heard of anyone taking it at night to sleep but if it works for you that way, go for it. A good nights sleep would be wonderful. I tend to catnap all night and never get more than a couple of hours sleep. I bet you feel better being able to sleep at night! That makes a world of difference, doesn't it? emoticon
Cindy

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1/10/12 12:10 P

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Yes I have, If you become dependent on it then you start having to take more and more of it to relive your pain. What my doctor wants me to do is to just take it at night before going to bed so it well help me to sleep. I also have sever arthritis that causes a lot of pain and would wake me up at night. The purpose of taking it just at bed time is so that I get a better sleep and thus well not have the fatigue during the day. Being woken up from the pain multiple times a night was disrupting my sleep and increasing my fatigue. So by reducing the pain at night it has improved my fatigue during the day.

Mark
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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/9/12 1:42 P

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Hi Mark! My Pain Specialist just took me off of hydrocodone last week. He said that it worsens the Fibromyalgia. Heard anything like that before?
Cindy

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1/9/12 11:37 A

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Kathy did a good job describing pernicous anemia. There are many other anemias that can affect you also. But sounds like you have had a good work up to find any. Lack of good sleep at night is another contributing factor for the fatigue and it sounds like that is one of your problems. About for months ago my Rheumatologist prescribed Hydrocodone for me to take at night to reduce my pain so I could sleep. That has helped me to get better sleep at night so I am less fatigued in the day.


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
1/8/12 8:17 P

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Been there! LOL

"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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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/8/12 6:44 P

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I understand. I will check out your page. Hope you get to where you are feeling better.
We went to church this morning and it was all I could do to not fall out of my seat and sleep in the isle. lol It was a good speaker too but I was miserable.

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
1/8/12 6:38 P

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I did for a while... it was good then. but that was a different city, a different time... different needs.

I have an internal medicine doctor for my PCP, and NINE SPECIALISTS... I have all that stuff going on... and a naturopath would still have to refer me to a bunch of specialists anyway, so... LOL

Check out my SparkPage, you'll see what I mean! 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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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/7/12 8:31 P

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Speaking for myself, I have had the tests run and I have plenty of B12, don't know about everyone else on here. I was getting the injections whenever I went to see my doctors office but am ok now. I am low on the other things though, if you read my messages. Still feeling so run down though. Hate it! Do you see a Naturopath too?
I am a Vegan so I don't eat meat except chicken, eggs and dairy-no red meat.
Cindy

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
1/7/12 8:01 P

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"The body needs vitamin B12 to make red blood cells. To provide vitamin B12 to your blood cells, you need to eat enough foods containing vitamin B12, such as meat, poultry, shellfish, eggs, and dairy products.

To absorb vitamin B12, your body uses a special protein called intrinsic factor, which is released by cells in the stomach. The combination of vitamin B12 bound to intrinsic factor is absorbed in the last part of the small intestine.

When the stomach does not make enough intrinsic factor, the intestine cannot properly absorb vitamin B12."

It runs in my mother's family, my aunt and cousin both have it, and I have a minor issue... I'm under treatment now for a B12 deficiency... here's a link if you want to know more:

health.nytimes.com/health/guides/dis
ea
se/pernicious-anemia/overview.html




Edited by: I.M.MAGIC at: 1/7/2012 (20:02)
"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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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/6/12 3:02 P

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I agree about the work thing. I used to work and now, I don't know how I would. I can barely get around. I really would like to go back to work though 'when' I get better. emoticon
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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/6/12 2:59 P

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I, too take a nap in the morning (since I catnap all night and don't sleep) and then one in the afternoon. I am really feeling sluggish today. I had pasta last night for dinner. Do you know if that is a no-no? Something has got me feeling really down again. I am great right now on my B12. I have been getting the shots with my IV Therapy. What is pernicous anemia?

Cindy

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1/6/12 2:15 P

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I find that a good nap is a necessary for me every day. But my naps are usually like two hours in the afternoon which makes some people complain. But that is what my body needs. It seems to make the fatigue easier to deal with. Also when I start to have a brain fog I know it is time to go lay down. Since I have been taking B12 shots it has greatly helped my fatigue. They found that I had pernicious anemia.

Mark
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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/5/12 2:55 P

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I agree! Sometimes the fatigue is worse than dealing with the pain. My adrenal fatigue adds to the pot, along with my back pain. How do you deal with your pain and fatigue? Cindy

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BEKAHBELL's Photo BEKAHBELL SparkPoints: (7,387)
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1/4/12 12:42 A

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that's me too, the fatigue is harder to deal with for me. When it gets bad, or I've over done things, I just feel almost paralized. I just park myself on the couch and rest. I really don't know how people work with fibro. I really don't think I could keep up!!

Bekah :o)



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1/3/12 3:49 P

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In some ways, I think the fatigue impacts my life more severely than the pain. I can push through the pain, gritting my teeth, much of the time. But on days where the fatigue is so bad that just holding my head up on the top of my neck or picking one foot up at a time is a monumental task there seems to be no way to forcibly push through that. Although, I guess that when the pain is bad enough to keep me from sleeping, the pain would be viewed as just as much of a problem, since they are interrelated.

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1/2/12 11:27 A

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Is this a 'forever' thing? OMG, what a way to live! emoticon
Cindy

Edited by: CWPRAISINJC1 at: 1/2/2012 (11:27)
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1/2/12 11:25 A

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Good morning. I connected with you when I read that you are tired of being sick and tired. I, too have fibromyalgia and I have Adrenal Fatigue Syndrome. I have been dragging around for the past 6 months but have had this for God knows how long, looking back on it. I hope you are feeling better today. I know every day (every minute) is different.
I did drink a green smoothie and as badly as I wanted to, I made it and it wasn't so bad and I felt a little better. (the first time in months) I don't know if you would want to consider this or not. Anyway, good luck to you and God bless you.
Cindy

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KJSUPERMOM01's Photo KJSUPERMOM01 SparkPoints: (3,570)
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12/21/11 1:29 P

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You are not alone, Most mornings I wake up and really have to push myself to get going and get to work, if I manage to have the time for a walk around the block or two , i usually feel a little better. It's most likely the boost in feel good brain chemicals.
If I take a break or two or three on the weekends , i can manage more,but if I push too hard, I end up flat out exhausted and do nothing the rest of the weekend.
I work at a desk and Im not sure if it helps or hurts most of the time. My back side says it hurts.lol emoticon

One day at a time sweet Jesus!


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
9/8/11 4:07 P

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I agree, It is hard to not do to much on good days and then regret it later. Just have to learn to pace ourselves.

Mark
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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
9/8/11 2:48 A

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Me too. It's that fine line between doing enough to make a difference and doing too much that gets me... LOL

I just keep working at it... and it does help!

"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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LUCKYLADYKATIE's Photo LUCKYLADYKATIE SparkPoints: (14,548)
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9/8/11 1:07 A

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My fatigue has really spiked the past couple of days. This morning the depression finally hit after spending several days unable to do much more than walk from bed to bathroom. I decided to go outside to get some sunshine and fresh air. After sitting in the sun for a while I decided to walk around the block. That went well enough that I decided to walk a little further. I don't know about anyone else but exercise helps me pull through the fatigue. If I can just take some baby steps and move a little I can get through it.

Are you highly sensitive? Team Highly Sensitive People www.sparkpeople.com/myspark/groups_i
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9/7/11 12:20 P

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BJ, your not complaining....were all here for you. emoticon I am also fatigue all the time with CFS/Fibro. Been diagnosed with both for almost 2 years now, but feel that I have had it for much longer then that.

Thanks for the tip on the D-Ribose KERRIE, I have heard about that by others on this site. I think that I will check it out. Even a little bit of energy would be a blessing.

My doctor has me taking B-12 shots everyweek. But I am not seeing a difference at all.

HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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9/6/11 3:06 P

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BJQUEST, you should talk to your doctors about it, See if they can find the cause and see if you can get help for it.

Kerrie, that is good information about the D-Ribose. I need to look into it


Mark
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KERRIET3 SparkPoints: (2,096)
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9/6/11 2:37 A

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One thing that helped me with my fatigue is D-Ribose. It's a sugar and our bodies use it to make ATP which is what our cells use for energy. I went off it once to see if I still needed it and my energy levels bottomed out again. When I first started taking it, it took a few weeks for me to notice anything. It may not work for everyone, but I think it's made a big difference to my life.


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9/4/11 10:23 P

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Hi all, yes I am fatigued every day. I'm getting so tired of being tired all the time. the 1st of sept. and the 2nd were my worst days in a while. I was also in so much pain I could hardly walk. and I had so many errand to run. I don't have family or any real friends around to help. So it's just me. I was at Fred Meyer's yesterday and some woman sitting out side. asked me if I had had surgery, because I was walking sooo slow. I talked for a min. She said I looked like I was walking like I was 100. I feel like it!!! but what gets me most is no one that knows me believes I am not well. this fibromyalgia is hard. one min. I'm 1/2 way ok, then I sleep for hours some times and can fall asleep so fast after being out and about for just an hr. or so. some times I have to get home fast because I'll fall asleep before I get home. I do also have vitamin D deficiency. but can't afford to buy the vitamins. medicare won't pay for them. but I have been in so much pain and fatigued lately, the I guess I will go back to the Dr. and see what they can or will do. So far no one has prescribed me any kind of meds. for this. and I don't know why.I was first diagnosed 4 yrs ago. So I am glad I found this sight. now I know there are meds. to take and I'm not alone. Sorry I'm winning today. But It's a holiday wk. end and absolutely beautiful out. but I have no one to hang out with and I'm in to much pain anyway. this wk end. that it's got me just a bit bummed. Well I have you guys at least, if you'll but up with this one article of mopping? Thax any one who read this. Sorry any one of you have this Fibromyalia and I wish you much help and fellowship. emoticon

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9/4/11 1:46 P

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I stay so tired everyday.Can not do much of anything. emoticon emoticon emoticon

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9/3/11 9:25 P

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I also suffer from B12 levels being to low and take a supplement for this.

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9/3/11 9:04 A

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I hope the B12 does help you. It did make a difference for me.

Mark
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9/3/11 5:10 A

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Too true. I was just recently diagnosed with a "profound" B12 deficiency, and I am filling a prescription today... I'm hoping it will help, because between that and the Vitamin D deficiency I've been struggling with the last three years... it will be nice to have even a LITTLE energy! LOL

I'm going to CELEBRATE, first chance I get! emoticon 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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XXICYLADYXX's Photo XXICYLADYXX Posts: 92
9/2/11 1:08 P

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I've been trying to take some sublingual B12 vitamins but I haven't been very faithful with it. I should really give it a shot so see if it can help.

***Goals for July***
- lose 4 lbs
at -1
- daily stretches
- 10 mins exercise a day
- eat a fruit after every meal
- eat 1 salad a day!

Currently: -0 lbs

Final goal: -35 lbs by may 2015


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
9/2/11 8:56 A

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XXICYLADYXX, Fatigue goes along with Fibro, So it is hard to determine if it is CFS or just the Fibro causing the fatigue. Also you should be checked for any anemia. I was B12 anemic and now with B12 injections my fatigue is not as bad, but I still have problems with it.

Mark
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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
9/2/11 12:40 A

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I do know that if you are on any medication other than insulin, they won't accept donation: the drugs cannot always be filtered out, and those poor patients would be getting doses they didn't count on... ouch. LOL

I can't even be an organ donor, though: long term diabetes damages all the organs... oh, well, there are other ways to contribute, if you look for them...

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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NIKKO2003 Posts: 7
9/1/11 10:52 P

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They do not want people with CFS or Fibromyalgia to give blood because the CDC and others do not know what the potential virus is and do not want this to be transferred via blood to others.

SASSYTHING52's Photo SASSYTHING52 Posts: 10,779
9/1/11 9:54 P

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wonder why if you got cfs you cant give blood it used not matter now you have read before u give blood and then leave thats sad emoticon does anyone know why

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XXICYLADYXX's Photo XXICYLADYXX Posts: 92
9/1/11 6:17 P

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So my fibromyalgia is pretty well controlled being on cymbalta. I have few flare ups and usually not very bad WAAAAAY better than the constant pain I was in before the meds. anyway the only problem I still have is the constant fatigue. I've slept for 18hrs straight on bad days and even on my best day after 10hrs of sleep i'm slumping over in all my classes.

I know chronic fatigue syndrome and fibro are linked but I was wondering if others had the same issue and how they were diagnosed or solved the issue? I haven't been diagnosed with CFS but I have for fibro and I don't really care what they call me as long as I can stay awake in school.

***Goals for July***
- lose 4 lbs
at -1
- daily stretches
- 10 mins exercise a day
- eat a fruit after every meal
- eat 1 salad a day!

Currently: -0 lbs

Final goal: -35 lbs by may 2015


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