Hi, I' new here, but I was wondering if anyone found taking vitamins/supplements helped them and which vitamins. I have iron, calcium, vitamin d and glucosamine sulfate, and I didn't think they were doing much, but since I stopped taking them I feel really lethargic. Has anyone had any success? I've heard quite a bit about Magnesium as well. I'm a student and supplements are expensive so I'm hoping to get some advice prior to purchase. Thanks!
Vitmains/minerals/supplements and fatigue - LUPUS UK
Vitmains/minerals/supplements and fatigue
Hi keenziie and welcome. I take vit d, b12, glucosamine and magnesium. It does help some with achiness. Hope this is helpful. hugs
You could ask your doctor to check your iron, vit D, calcium and vit B levels - if they are not right he may then provide those supplements on prescription. Having your blood magnesium level checked won't tell you much, it is stored in the body but your blood level will be OK until you are really depleted but the tissue level may be low enough to cause muscle cramps for example.
If you are on certain medications it may be a good idea to ask if you can have a dexascan done to look at your bone density - taking calcium isn't always a good idea unless you need it and you do need magnesium and vit D for it to be of any real use to get into your bones.
Be careful with supplements - because too much of some can be worse for you than not enough. And if you are on medications or supplements (prescription and OTC) always check with your pharmacist - not the counter staff - to be sure there are no interactions. They are more common that you would think.
Bone broth (gelatin) is good for joints, just make sure you aren't taking an acid blocker at the time. Melatonin is said to help with sleep. Magnesium is a common deficiency (70% of people)-it is in egg whites and chocolate. If you're being treated for lupus you're on sun avoidance do you'll need to take Vit D3. I take 10,000 IUs once a week and its also in high EPA oil fish (I prefer mackerel, chunk tuna and sardines to save money). Other than that follow general healthy eating instructions.
I take a good probiotic as they have been shown to reduce flares. Magnesium to reduce headaches and fatigue. Iron as had mine checked and was really low. Kelp for thyroid support. Siberian ginseng great for fatigue. Cherry turmeric complex instead of glucosamine. Calcium/vit d complex.
All good but no amount of supplements will help if you Are eating the wrong things. Pay special attention to your diet. Give up gluten and dairy and refined sugars. Avoid nutritionless calories.
I see people say this kind of thing, but as a student who can barely make ends meet its awfully hard to be that restrictive with my diet.
I can't digest dairy well anyway so I have mostly lactofree, and eat plenty of fruit and vegetables and have a healthy diet. I am not worried about my diet.
I would say a healthy balanced diet is fine. Unless you have been diagnosed with a specific allergy or your doctors have recommended something, well that's different. But I have asked my doctors and they all say a balanced diet. I know it's tough financially as a student so as long as you are eating your fruit and veg and you are aware of healthy eating, I think you are doing well.
Hi Kenzie I take Glucosamine, MSM & Chondroitin in one tablet which help to keep joints supple. I also take Cod Liver Oil & Evening Primrose Oil, and also A_Z Multivitamins & Minerals.
The Vitamins & Minerals I started taking because I was getting one cold after the other and they have worked in stopping that.
The others were recommended by a friend as they help with joints. The ones I take which are Wilkowellbeing also contain Manganese which contributes to the normal formation of connective tissue.
I take vit d, vit c ( to keep my immune up to prevent getting sick), B12, someone just told me B6 is good too. I think the Bs are good altogether. I take magnesium. There are many different kinds. Research which one will help you. I also take turmeric to help reduce inflammation. Helps my arthritis a little, not completely. I take vit d, 4000 iu daily during the winter. I have terrible winter depression, and it helps a lot.
I take passionflower for calming and anxiety when needed. And I take lemon balm for depression , when needed( which I ran out of and need to get more). Thera tears for dry eye works real well. It is a combination of fish oil and flaxseed oil, I believe.
I also use oils. Lavender and coconut oil to help me sleep, as I have fibromyalgia now. And a formula 303 from chiropractor for tightness in my muscles in my back. Combination of magnesium, passionflora, and valerian root.
Yes, all these vitamins are costly. And insurance doesnt pay for it. Go figure. I spent over $1000 last year according to vitamin shoppe. Ugh! I could have saved money if I didn't talk to the guy that works there advising me on taking this and that. Some that didn't agree with my body.
I also have gone dairy free. I take a digestive enzyme with dinner to break down gluten. I try to stay away from pasta and bread, but sometimes I can't. Ha! Sometimes I take a probiotic instead.
Trying to heal my nerve pain now with passionflower drops in water, and magnesium.
Take care...
Oh, and I noticed digestive enzyme gave me more energy. The lecturer that was explaining this enzyme said that it saves the body energy by helping it digest easier.
Interesting. Not cheap though.
Oh, and I take Natto K enzyme for my clotting genetic disorder I have. Ugh!
Hi keenziie,
Welcome to the site. I hope that you find it a useful source of information and support. We have a booklet about healthy eating in lupus which you may find interesting. You can view and download it from the publications page of our website at lupusuk.org.uk/publications/
Please be aware that everybody with lupus is different and the experiences of people here may not be the same as your own. What may help one person could have no effect or even be potentially harmful to somebody else. We always recommend that you speak with your GP or consultant before introducing any new supplements into your diet.
Thank you! I know, I just wanted to hear some other experiences, I don't know anyone else with a chronic illness like this really and I don't have anyone to tell me their experiences.
Thank you for the booklet I will look very soon!
Yes, to back up Paul's comment and reiterate what I said in my first reply - do always check with your doctor and the pharmacist before taking any supplements if you are on prescription medications and also before even mixing different supplements because they can interfere with each other, There are increasing numbers of studies that are showing that supplements can be risky in excess. If you are eating a reasonable diet you are almost certainly getting all the things you need, the doctors test will show you the most important ones that they can help with.
There is no firm evidence that all these things help. People who take them will almost always claim they do - they have invested a lot of money in them (as you can see from some of the posts) and that may bias their opinion. Don't worry about not having the money - invest what you have in eating as well as you can and maybe experiment with not eating various things but don't just stop everything, be sensible and stop just one group of things or one thing at a time - and keep notes.
You might enjoy a blog called Despite Lupus by Sara Gorman - she was 26 I think when she was diagnosed with lupus, just after she was married. I don't have lupus but her writing about living with chronic illness has helped me a lot with my own illness and she is very good on lupus as she has written books and runs support lectures in the US.
Good luck with your course - hope you feel well enough to get on with it.
Hi keenziie
I take ferrous fumarate 210g tablets, just one a day (although you can be prescribed more), prescribed by my rheumy as my iron levels were low.
I take a multi vitamin and mineral - called Perfectil - for hair, skin and nails. My rheumy has checked this and says it's fine.
My consultant orthopaedic surgeon recommended Glucosamine Sulphate max dose a day for my osteoarthritis- he said it had proven results. I asked him about cod liver oil, as my mum always took it and I had on and off - he said he wasn't allowed to recommend that but it wouldn't do me any harm. The cod liver oil has Vit D in it too, (which if you are sun sensitive you don't get from the sun). When I was diagnosed in 2013 my rheumy ran loads of tests and I wasn't B12 deficient, which they suspected as I was so fatigued. I have slowly got my life back on track, (well as much as it will ever be) what with the hydroxychloroquine for 26 months and the iron supplements for 18 months now and I guess just knowing that I have to manage my illness and pace myself, has all helped. I still have days when I just want to sleep - what with working part time and having 3 children I do get really tired but I also manage to keep going and sometimes can stay up a bit later.
I wish I could say there is a magic cure for the chronic fatigue but there isn't. Life is up and down, a permanent roller coaster ride.
Best wishes.
Keen...I am considered low end on ANA, and not on any medicine. I choose to do natural treatments because the body is an amazing machine, and tries to heal itself.
Granted many need medicine because of damaged organs, cancer, genetics, etc. I am very fortunate that my symptoms are low end. If i have a bad reaction, i stop taking.
But, I can read data and resources explaining herbs and supplements. (If the information is the same in 3 sources, it is most likely true. This is what i have read)
If something is going to hurt my kidneys, i dont take it as i have scarred kidneys.
I am taking vitamins necessary to suport the human body, and minerals that are low. I always get a copy of my bloodwork because i found that drs say you are fine, when your numbers are bordering on the cutoff. For ex, vit d for me was 5. When i was already taking vit d daily. I take magnesium because my muscles are tight. All these vitamins and minerals are in our environment. And a naturopath or nutritionist is educated to help. I always talk to a nutritionist and research before taking.
I have no adverse side effects (which medicine cannot claim). In my opinion, i have read that the medicine Glen Frey took for RA caused pneomonia, which is what he died from.
And, oh, my body does not digest food. Always had problems since i was a young girl. My mom died from colitis at 48. Eating more vegetables and fruit wont help me. That is why i take a digestive enzyme. I have a hiatal hernia which may exasperate my problems. When i first started getting symptoms i had terrible bloat in my belly, gas, discomfort in my right rib cage (Thought to be gall bladder issues. First thing drs do is want to remove it surgically) All these symptoms are gone.
This is something I believe in. I am just sharing what i use, and what i have learned.
If you are on medicine, yes, talk to your doctor first.
Hi Keenzie I study naturopathy so know a bit about supplements. and this is for your education it is not medical advice
you pretty much can only get a vitamin from living food and when you heat your food above a certain temperature it denatures the proteins and enzymes, all enzymes are denatured at 118f and all proteins at 167f, vegetable protein is used by the body way more efficiently than meat protein by a factor of 3 and meat has nitrates added into it which can be toxic to our bodies as well as sulfite being sprayed on most supermarket fruit and veg to stop it going brown so that the customer does not see it rotting.
Have you read about the hydrogen peroxide protocol most people call dioxide peroxide and automatically think its hair bleach but your body uses 35% (which is sold as food grade hydrogen peroxide) for its immune system
when taking 35% peroxide always use distilled water and always wait 1 hour after food and 1 hour before it can interact with copper which is why you have a window in which you let it do its job you can research Dr Charles Farr who was the guy who worked it out you would also benefit from taking natural vitamin E wheat germ kernels are high in this I wouldn't take the wheat germ oil as it easily goes rancid also cayenne herb this is high in vitamin c and many other nutrients it is food for the heart and boosts it amazingly just a small amount in some hot water, remember almost all tap water contains lots of contaminants if you are at Uni why don't you get someone to test it you will be disgusted at how contaminated it really is.
Do your research on this and it will benefit you hugely also try and cut out all grains and dairy they are both extremely toxic to the human body and are responsible for so many diseases.
Keenziie,
Please be cautious about cutting lots of food types from your diet or adding any supplements or alternative therapies. The advice for people with lupus is to have a healthy balanced diet. If you intend to make significant changes to your diet or start any supplements then please check with your consultant beforehand for their advice.
You do need a balanced diet Paul but all of the toxins that are now in our food means you have to cut out vast swathes of it that is if people want to get better.
If you can get heirloom grains and grow them yourself or as a collective then yes by all means those grains are fantastic for you but the grains you buy in the shops today have all been genetically modified and is one of the reasons so many people are ill do you know the WHO reported in 2013 that 95% of the worlds population suffered at least one illness and a third of those were suffering 5.
Grains manipulate your DNA there are so few studies carried out on GM foods and when the truth is shown the studies are hidden from the public
if you want to educate yourself on this matter you will need to go into a library and pick up a book on GM foods governments are only working for corporations and not the public.
Dairy has been proven to shorten your life and is so full of impurities that if people had any respect for their bodies they would do the research on this themselves and they would know that it is not meant to be consumed by humans.
I've had some success using most of our suggestions. I've also tried many others. See one of my previous posts. Just search JOWE on this website. Hope it works.
Hi again. Just tried to search under JOWE. Got nothing. Typed HINTS into the search box and all the JOWE suggestions came up.