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Fibromyalgia


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#1 eeyore

 
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Posted 25 February 2010 - 07:43 AM

I've just recently been diagnosed with this ...does anyone know any effective treatment methods?
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#2 tarnalberry

 
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Posted 25 February 2010 - 09:02 AM

Pharmaceutically, I used a combination of mirapex (as a sleep study determined I had restless leg which impacted my sleep which had a HUGE impact on my fibro symptoms) and cymbalta (as a meeting with a pain-specialist psychologist determined I had cocommitant mild-moderate depression). Both those did help.

But it is VITAL to keep up with the non-pharmaceutical things just as religiously as the pharmaceutical ones (if you go that route).

1) Learn to say no. This means that you might be tempted to do a lot in your day, but don't. It'll come back and bite you. Find out - HONESTLY - what your capacity is, and honor and respect it. It may mean that you're not going out with friends most nights of the weeks, but you'll have enough energy and little enough pain that you can do so on the weekend. It may mean that you don't get the house as scrubbed clean as you did before, but it gives you enough energy to make it through what you can without extra pain.

2) Get regular (daily, if possible) exercise of some variety. We all know I'm biased since I teach it, but yoga can be a GREAT option here. Swimming is also excellent. And walking is fabulous. If it's only 10 minutes a day, do it. If you can do it 20-30 minutes twice a day, GREAT, but don't beat yourself up if you need to do less. Do what you can, but DO some. Exercise is important to keep the joints well lubricated and the muscles from stiffening. Obviously, this is kind of important when dealing with fibromyalgia! :)

3) If you haven't, "clean up" your diet. Obviously, minimizing any processed foods is an important start. But you may find you need to reduce sugar, or determine if you have other food intolerances that are playing a role. This is a long process, cleaning up the diet so it's optimal for you, and there is no universal answer that'll fit most people. So be patient with it.

4) Investigate what supplements you want to take and will work for you. There are a number that are thought to help with fibromyalgia, and I would start by looking into:

* malic acid (I get it in the form of magnesium malate; it's what I could find) which is thought to be effective at doses between 1600mg and 2400mg per day

* CoQ10, though you may need to find the right dose for you and it's not effective for everyone

* a B-complex supplement, but I wouldn't overdo the dosages too high either

* vitamin D

* omega-3 supplement, and probably a larger dose than you'd otherwise take - I take 6grams per day for anti-inflammatory purposes

* some people have suggested 5-HTP for fibromyalgia; I didn't try it since I opted to try the cymbalta (the two are contraindicated together), but it's another one to look into


5) Consider acupuncture. Recent studies suggest that it may be effective (for some, not all) in treating fibromyalgia - certainly better than a placebo in it's efficacy rates. It helps me. :)

6) Sleep. Do not say "oh, I'll catch up on sleep later". Do not say "oh, I'll just stay up another hour". Stay committed to dedicating time to sleeping, just like you dedicate time to other activities in your life. If you find you NEED a nap, give yourself permission to take one and find a way to make it happen. Maybe not a five hour nap that will mess with your regular sleep schedule, but an hour. Yes, it might be inconvenient (especially with kids), but you can usually find a way to make it happen, at least some of the time.

7) Reduce stress. Everyone reads this advice, and most people, for the most part, blow it off. "Oh, well, today was stressful, but I'll get some sleep." or "I can't eliminate any more of the stress from my life; this much is normal." I call BS on that. There are two ways to reduce stress - change your attitude to the situation and change the situation. Some situations will make us stressed for various reasons, but we can change our approach and learn to not be so stressed by them. Counseling can help with this, as can a number of other techniques. (My years working with a psychologist and my years of yoga philosophy studies have been a HUGE help in this department for me.) Changing the situation is always within your power, but may take more effort than you think you want to do. (My job was my primary source of stress; I got laid off - and losing half your family income is certain another stressor - but even without the pharmaceuticals, I have had far fewer fibro flares than I used to.) What I really learned is that stress is not stress; there are some kinds of stress that any individual can cope well with, and there are other kinds that the same person won't cope so well with. Do your best to change the situations you can't cope with, and improve your coping in all the situations. I cannot stress enough how important it is to REALLY, ACTIVELY change your life/mind in ways to reduce stress. (Some of the more lasting theories of fibromyalgia lean towards it being caused by an overactive sympathetic nervous system (the fight or flight stress response) and a burnt-out/overworked parasympathetic nervous system (the relaxation response). What type of stress brings this on (emotional, chemical, physical, etc.) is different for everyone of course, but it's looking like it plays a role. That's why stress management is so vital.)

Clearly, work with your doctor (usually a rheumatologist) and make sure to get any supplementary/followup testing (nutrient levels, sleep study, etc.) to see if something is contributing to the problem.

This is what I found worked fairly well for me. I'd say that it was an even bigger lifestyle change than going gluten free - because it was about far far more than eating. But it's worked fairly well (my symptoms are certainly manageable!) and it's improved my quality of life significantly.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 Ahorsesoul

 
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Posted 26 February 2010 - 08:11 AM

I was treated using Dr Teilebaums methods. I found an excellent doctor who saved me from feeling like I was less of a person because I had fibromyalgia. It's real and not in your head.
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1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#4 soblessed128

 
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Posted 03 March 2010 - 11:41 AM

I have not been diagnosed with Fybro yet but am pretty sure I have it. I have the burning eyes, aching muscles/joints,and other gastro issues. I also have had tremendous weight loss. As long as I avoid wheat/gluten, take supplements, and get rest will the symptoms subside? I go the rheumatologist March 17th. I have been trying to eliminate the foods I tend to be allergic to and have a positive attitude. I also take a good powdered multi-v with b-complex. ANy other recommendations?
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#5 txplowgirl

 
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Posted 03 March 2010 - 03:40 PM

Hi Eeyore,
I have been dx'd with fibro, but unfortuneatly, I guess I am an unusual case because none of the meds have helped me at all. They only made everything worse. Doing research on fibro I found that almost 75% of patients with fibro have food intolerances, doing more research is what led me to this site, plus with my rhuematoid arthritis, not only am I gluten free but I can't have the nightshade vegetables which also aggravate and cause my arthritis to flare causing pain and swelling. Dairy also causes tummy problems as well as headaches, and then soy which also causes me pain, anxiety and depression.
I wish I had known all of this as a kid, It would have made life a lot easier.
I take at the moment 10 mgs of Melatonin and 200 mgs of 5-HTP for sleep at bedtime, I take during the day a good B-12 sublingual, 10000 a dose, Vit D, 5000 Iu's a day. I take 2000 mgs of L-Glutamine a day to repair my intestines and it also helps if you get glutened and papaya enzymes to help with digestion. My pain levels have gone from a daily 7-8 to 2-3. My fatigue levels are still the pits but I have started to notice a little improvement finally after almost a year. I don't know if this will help you any but it helpd me.
I wish you good luck.
Vicky
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#6 Reba32

 
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Posted 03 March 2010 - 05:39 PM

if you're Celiac with fibro, then following the gluten free diet will get rid of some of the fibro symptoms as well. I was diagnosed with fibro first, (in 1993) and no drugs ever worked long term. So I'd have 6 week scripts and then go off them, then try something else.

Then when I started the Atkins diet (which is naturally gluten free for the early phases) I noticed my fibro getting much better. Then it all went to crap again when I did the gluten challenge!

Eliminate refined sugars. All of 'em. They're inflammatory and poison and have no nutritional value. There are other options for sweetening your foods that won't poison you. Stevia, honey, agave, etc. I use stevia pretty much exclusively.

Eat fresh, whole, natural foods, not packaged manufactured foods. As close as to how Mother Nature intended them is best. Stick to the outside aisles when you're shopping, not the inside aisles. The only things you'll need on the inside aisles is the gluten free flours for baking. Bake from scratch, rather than packaged mixes. I use almond flour and coconut flour (I'm a low carber, so I don't use rice flour or potato flour at all) for baking. Cakes, cookies, lots of yummy stuff!

Fish oil omega 3s are anti-inflammatory. There are some cooking oils that are highly INflammatory, so don't use those. Omega 9s are inflammatory, avoid regular safflower and sunflower oils, corn oil, cottonseed oil, and mixed vegetable oils.

And avoid ALL trans-fats! Anything that says hydrogenated or partially hydrogenated vegetable oil on it is a trans-fat, regardless of what the front of the label may tout! The FDA allows them to label foods as zero trans-fats if it is less than .5 per suggested serving. And the suggested serving us usually less than anyone is going to eat in one sitting, so you're really getting lots of trans-fats. ANY amount is too much!

Make sure you get pleny of dietary healthy fats in your day. There are fat soluble vitimins that if you eat a low fat diet, you're not getting those vitimins, and they're very important! A, D, E and K are fat soluble. The Bs and C are water soluble, so you need plenty of water too.

Don't pay attention to the health department food pyramid. It's backwards. And isn't scientifically or anthropologically sound.
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