What supplements do you take?

I'm always interested to hear about the holistic/natural things people are doing to help encourage healing and general well being.

Here's my list:
Morning:
1 oz of noni juice - for digestion
1 dropper of liquid B-12 - I've read that vegetarians don't get enough B-12
4 Thorne Traumogen multi-v's with Vitamin C, Zinc and some other stuff to promote healing - got this one from my doctor
2 Vitamin D (1000 icu) - heard that we North Easterners don't get enough sunlight

Evening:
2 Calcium/Magnesium supplements - I heard that magnesium has a calming effect and it's easier to absorb these two at night
2 PS-100 - to aid sleep, it's supposed to help calm as well
2 GABA - to aid sleep
1 teaspoon inositol - to aid sleep

What are you taking? Anything you recommend as a must have for EDS'ers and hypermobile people?

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I thought Inositol was a non shell fish calcium?
But I do love the flavor, and hummmn...

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Inositol was one of the supplements my doctor gave me because he said it aids sleep. I'm not sure if it does the job alone, but I've definitely been feeling calmer after taking the night time supplements.

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I take 800 mg Folic Acid twice daily to combat the side effects of Methotrexate. I also take Citracal daily. I have a prescription to take 50,000 IU of Vitamin D once a week, because my levels are chronically low.

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Wow, 50,000 iu of Vitamin D! Is it helping your levels?

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1. Blackmores Slow release multivitamins
2. BioOrganics Vit D3 1000IU. Doctor ordered test showed deficiency of Vitamin D in spite of living in sunny tropical Queensland,
Australia.
3. Calcium and Magnesium
4. BioOrganics Arthri-Eze. Contains fish oil, primrose oil, EPA, DHA, Vit E, Glucosamine, cod liver oil plus a lot of other stuff.

I am 58 years old, and try to eat a low tyramine diet eg: www.fdnow.org, no preservatives, fresh food, avoid tinned food [BPA] and substitute with fresh ingredients eg: tinned tomatoes. I also eat homemade yeast free bread or freshly baked bakers bread. Supermarket bread brings on migraines, though not sure why exactly. I also try to eat fresh seafood 2-3 times a week. Also now buy meat at butchers, not supermarkets due to tyramine levels in their meat - see 'RPAH failsafe diet' for details. Tyramine is bad news for the dysautonomia we have and one of its symptoms - migraine.

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I take 500 mg two times per day for chiari, as a result of the EDS, but that's it for prescription drugs...the rest are B12 dots sublingual (low b12) Vitamin D3 1000 IU per day, and the next ingredient is from research...L-Carnitine combined with Alpha Lipoic Acid...this helps to create healthier mitochondria in the cells...and help oxygenate the cells..and convert carbs into energy...which sometimes I feel tired due to the constant b12 issues. Warning...this will boost your energy levels.. A LOT. I also avoid gluten..gluten free diet, which I think the gluten plays a huge part in the malabsorbotion issues with vitamins, which contribute to the issues with EDS.

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I stopped taking a multivitamin because it made my joints more sore. I had trouble going up the stairs too. I take Calcium Citrate with vitamin D, Vitamins C and E, and Tri-Flex Fast acting (Glucosamin, Chondroitin, MSM). I also do stretching exercises and work out at fitness center to try to strengthen my muscles slowly with hope that I will feel better. I eat a lot of vegetables, fruit, whole grains, lean meat, less beef (ground turkey instead) and stay away from dairy due to sinus and migraine issues.

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I'm gluten and dairy free. I take:
2,000 IU of D3
1 fish oil
calcium citrate plus magensium
B-complex 100
Curcumin/tumeric
Ester-C 500 mg

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the b-12 and vitamin D3 seem to be a common denominator here. I know I can't get my b-12 levels up unless I take it sublingually or given to me by a shot in the arm...which tells me that the digestive tract is not doing it's work correctly. This is why I started the gluten free diet...apparently the gluten will coat the inside lining of the digestive tract like glue if you can not digest it properly, causing malabsorption issues with vitamins. I've gotten my b12 levels up to 650 from 200...and D's have gone up a little bit. But what is really confusing is I have very low cholesterol...total cholesterol of 130, and my daughter's was a total of 85..which makes me think the lipids aren't being absorbed, processed, properly as well...any of you with low cholesterol issues?

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karbry,
I have low/normal cholesterol, (145), but It was higher in my teens and 20's (180s), and high cholesterol runs in my family. I have some autoimmune issues (nothing with a precise label yet), but I understand low cholesterol may be related. Your body uses much more cholesterol when there is disease and inflammation. Cholesterol below 140 can cause symptoms including depression. Your blood lipids have very little to do with the cholesterol or even fats you are ingesting. ( I eat plenty of animal fat). It has more to do with how much your liver makes, and how much is used by your brain and elsewhere. Contrary to popular medical opinion, unusually low cholesterol is not a good thing, especially in women.

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I know the cholesterol is used by the nervous system...as a "pavement" for the neurotransmitter...just really concerned about my daughters being an 85, and she's 100lbs over weight. :( but doctor doesn't think it is an issue...I just think there is something wrong with it. She has EDS, and has symptoms of a chiari, but I haven't had the mri done yet to confirm the chiari. She also has terrible digestive issues and she's only 22 :(

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Re: question asked about the 50,000 units dose of Vitamin D. This amount can only be obtained with doctor's prescription, after that doctor has done a serum blood level for Vit. D. and found patient to be deficient in this vitamin. From 2000 until 2006 I had to use a cane due to increasing weakness/balance problems everyone assumed as due to my neuropathy due to very well documented MULTIPLE problems with vertebra/spine/stenosis. However, I finally saw a rheumatologist who for the first time ever, tested my Vit. D. level which was 17 (low normal is 30). Within 6 weeks of starting the high dose Vitamin D, I did not need the cane anymore! Turned out that low D can eventually cause a neuro problem which weakens the thigh muscles. Who knew? No one apparently. Even the rheumatologist didn't expect me to get rid of my cane! That 50,000 iu dose sounds like it will overdose you, but what I learned was this: while Vitamin D is fat-soluble and therefore is stored in the body, it is hard to really take enough supplements to wind up with Vit D. toxicity. My doctor told me that you'd have to have a level over 60 to be toxic. Most of the docs really "up" on all the findings about low D and how very prevalent it is turning out to be are recommending ideal D levels be significantly higher than the 30 number. My doc worked with my D. supplement dosage for a long time until he finally got it to between 40 and 45 which is what he recommends. And I have to take 50,000 units twice a month AND the over the counter variety of D (called D3) 1000mg every day to get to the level he wants. I don't know why. Much research is being done about this now, since until very recently no one knew there were so many people out there with D deficiency--what was believed was that as long as you get about 10 minutes in direct sunlight a few times a week with sun on your bare skin of your arms, face, that would be enough to maintain normal D levels. NOT! I did come across a recently article suggesting that a tendency to low D may for some people be an inherited tendency...making me wonder about any EDS connection, but don't know if there is or not. But it is interesting that there is this skin connection to how we make enough D (or not, as the case may be). And my brother recently tested deficient for D as well. D is terribly important and has been implicated in involvement with immunity, cardiovascular health, resistance to certain cancers, and to PAIN LEVELS, and a bunch of other stuff I can't remember offhand. I have also read in more than one place that all elderly people should be tested because low D is implicated in increasing balance problems with age....and I have said what happened to me needing a cane when I became very deficient. And so many EDSers talk about balance problems...don't know how many if any are vit D deficiency-related since there are other EDS related disorders that can definitely affect balance. I heard from my rheumatologist that it was this specialty that first hit on the Vitamin d/pain connection when they began to find a whole lot of rheumatoid arthritis pts to be low in D, and noted that when this defiency was corrected, pts reported lower pain levels. but now it has become clear this is a nationwide problem (?worldwide) called by some an "epidemic" and most internists are now testing (hopefully) most if not all pts' Vit D levels at some point.
Sorry to have gone into such detail on one supplement, but because of my dramatic improvement and the prevalence of this deficiency, wanted to share this.

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B complex, vit. C, Salmon Oil, Panthothenic acid, Biotin, lipoic acid (just added a few months ago), digestive tablets with each meal, I always get a very good brand of vitamins because the cheap ones have fillers, allergenic stuff like dairy, wheat, corn etc. TwinLab, Solaray, and NOW are good brands. Also get deep water salmon oil- a good one is Carlson. (I do not sell vitamins as a disclaimer here. ) I also am almost gluten free, no dairy except tiny amounts of organic cheese and no red meat..very little other meat..maybe once a week or so. Tried to go organic with veggies, etc. for many years now.
No need for Vit. D as my levels are good and I live in the sunny southern part of CA. I have terrible arthritis, a terrible spine from top to bottom, two blown out knees, both sides of jaw, thumb/wrist and one shoulder and still manage to stay off pain medicine most of the time. May be due to diet, genetics, food, meditation, who knows? I manage to walk everyday almost with my dogs but no other exercise as it hurts. Oh and a glass of wine with lunch doesn't hurt either.

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Mandybear, your post totally resonates with the way I try to treat myself holistically...

I avoid dairy and gluten as well. Have you noticed improvements from removing either of those things?
Good to hear that you manage to stay off pain medications. Me, too. But I do take Tylenol and use heat when I need it.

And I'm so jealous that you live in sunny Southern California. I'm always wondering if climate would help our condition.

Your post also mentions that you don't exercise other than walking. Me too! But I wonder if I'm missing out by not doing anything else. If maybe a little light weight training would help speed my healing process while I get prolo treatments.

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Since EDS involves a collagen issue..... is there any benefit to taking collagen supplements?

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