Using Supplements

[LynnHall]

As a lupus survivor, I have all the common daily ailments, such as pain and fatigue. However, recently I have found that certain supplements which I have been taking for about 2 months, have helped eliminate the pain and I am not as tired as I was before.

I would not recommend that anyone take anything that has not been given the thumbs up by their main carer, such as GP or consultant, but I have received help from a renal pharmacist and my counsellor, who have both spent time researching the supplements. I have received a detailed report from the head pharmacist at my hospital and given the thumbs up, which is really good news for me.

I would advise other lupus survivors to enlist the help of their own renal pharmacists and ask their advice on what is safe to take. Some supplements are not advised if taken with certain prescribed meds, such as Irbesartan and ginkgo biloba, but ginkgo does have an excellent reputation otherwise. Most pharmacists are only too happy to help. I've benefitted- you can too.

[Lg1968]

I have been taking supplements with discussion with my rheumo. I take aloe vera capsules to help with IBS and magnesium to help with fatigue (although you need to have your magnesium levels checked as you can overdoe magnesium in the blood). I also take vit b compound as my folate and b12 levels are low. I think they have made a big change to my fatigue symptoms. I have bought a tai chi DVD so I can do this at my own pace and that really helps to stretch out my limbs and keep me mobile.

[LynnHall]

Thank you, LG. I think it's trial and error, isn't it, finding what works. For me, meditation is a big factor. I can highly recommend Lifting Your Spirits: seven tools for coping with illness available from jankifoundation.org and is endorsed by the British Holisitc Medical Association bhma.org

This is a lovely book containing two meditation cd's, each with several tracks ranging from 4mns 30seconds to 20mns 53s.

[Tabbie in reply to LynnHall]

Hey Lynn Hall,thank you for sharing about the meditation c'ds..its great to hear about practical things that have helped with your quest for a better quality of life..gives us all a bit of hope

[chrisj]

I've just finished a course of high dose vitamin D as a hospital blood test came back with low levels in March, and I'd been struggling for some time with muscle aches, low energy and breathlessness that was worse than usual. I feel much better but the vit D supp has finished. My gp told me years ago never to take any supps unless a defficiency had been diagnosed so I'm in a quandry about them....My lupus nurse didnt recommend I take them either....

[LynnHall]

Happy to be of any help, Tabbie. I think we share what we can and everyone has something they can pass on.

Chrisj: I too was placed on a high doseage VitD, but it hasn't helped with the muscle aches or fatigue. I agree that you shouldn't take supplements unless you speak with your consultant or GP first. But pharmacists (and I consulted the head renal pharmacist) are in a position whereby they can research the drugs you are taking and see if they contradict any supplements. Your GP or consultant probably won't have the time to do that kind of research.

[Corrosion]

Hi Lg1968,

My rheumatologist recommended 3000mg (3g) of omega 3 fish oils. I was constantly tired and had terrible pain in my right list and awful back pain. Within 3 weeks of starting the supplements, the pain in my wrist had gone, my back is better and all of a sudden I was staying up till late instead of crawling to bed at 7 or 8pm.

In addition to the fish oil, I also take 1000mg of evening primrose oil and 3000 mg of acai berry (antioxidant).

[LynnHall]

That's interesting, Corrosion. I'm also taking acai berry, but I think I'll look into taking fish oils and eve prim.