Anyone living with lupus?

Question

I was diagnosed about 6 months ago. My doctor wants me to avoid taking the standard lupus medications until I HAVE to. There are days when I can barely walk, and it seems as though continuosly I am having new symptoms. I know it effects everyone differently, but I just wanted to ask for those who may be living with lupus, like myself:
1) What medication do you take for pain management (preferably other than the standard lupus medications)?
2) What sort of pain and symptoms do you experience?
3) How has lupus effected your life?
Thank you for your time!

I have Lupus SLE. Wow, all those responding are a wealth of information, thank you so much! I just moved from California to Mass (Bolton area), so if you know any Doctors you would reccomend in this area, I would greatly appreciate it.

Answer 1

Hi Carey

Here are a few ideas to help correct your health.

Cause
Food allergies (there is a 100 percent correlation between lupus and food allergies), rheumatoid arthritis, other connective tissue diseases, parasites, candidiasis, bowel problems, and digestive enzyme deficiencies can create symptoms that mimic or exacerbate SLE. Migraines, epilepsy, and psychoses must also be ruled out before a proper course of treatment can be decided upon.

Both forms of lupus primarily strike young women (90% of cases) and young children.

The drugs hydralazine, procainamide, and beta blockers can cause false-positive readings of SLE, and can also produce a lupus-like condition that disappears when the drugs are no longer taken. Birth control pills and environmental stresses can also exacerbate lupus symptoms.


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Natural Cures

Diet: Eat an organic, whole foods diet. Also avoid overeating and limit your intake of dairy, beef products, and polyunsaturated oils. Also screen for food allergies and avoid all foods to which you are allergic or sensitive. Increase your intake of vegetables, especially green, yellow, and orange, and consume non-farm-raised fish several times a week.

Herbs: Supplementation with Swedish bitters with each meal can increase hydrochloric acid production. Also drink an infusion of nettle twice a day. Other useful herbs include echinacea, goldenseal, licorice, pau d`arco, and red clover

Hydrotherapy: Hydrotherapy is the application of water, ice, steam and hot and cold temperatures to maintain and restore health. Treatments include full body immersion, steam baths, saunas, sitz baths, colonic irrigation and the application of hot and/or cold compresses. Hydrotherapy is effective for treating a wide range of conditions and can easily be used in the home as part of a self-care program. Many Naturopathic Physicians, Physical Therapists and Day Spas use Hydrotherapy as part of treatment. I suggest several at-home hydrotherapy treatments.
Hyperthermia: Hyperthermia involves artificially creating fever in the body for the purpose of boosting immune function. Hyperthermia can be a highly effective method of eliminating toxins and heavy metals, as well as infectious bacteria and viruses that cannot survive in elevated body temperatures. I suggest several at-home hyperthermia treatments.


Juice Therapy: Drink the juice of carrot, celery, flaxseed oil, black currant oil, and garlic.

Nutritional Supplementation: Hydrochloric acid (HCL) deficiency is common in people with lupus, therefore HCL supplements with each meal is advised. Other useful nutrients include vitamin A with beta carotene, vitamin C and bioflavonoids, vitamin B complex, vitamin B5, vitamin B6, vitamin B12, calcium, magnesium, selenium, zinc, essential fatty acids, proteolytic enzymes taken away from meals, digestive enzymes taken with meals, and the amino acids L-cysteine, L-methionine, and L-cystine.

Topical Treatment: PABA cream applied topically can help ease symptoms.

Alternative Professional Care
If your symptoms persist despite the above measures, seek the help of a qualified health professional. The following professional care therapies have all been shown to be useful for treating Lupus: Acupuncture, Biofeedback Training, Bodywork, Cell Therapy, Chelation Therapy, Detoxification Therapy, Environmental Medicine, Enzyme Therapy, Guided Imagery, Homeopathy, Juice Therapy, Light Therapy, Magnetic Field Therapy, Natural Hormone Replacement Therapy, Naturopathic Medicine, Oxygen Therapy, Qigong, Rolfing, and Traditional Chinese Medicine


Best of health to you

Cheers

Answer 2

First off Cary I'm assuming that you have SLE. Secondly do you have antiocardiolipid syndrome? This is a secondary disease suffered by many with SLE and can be undiagnosed by a poorly trained doctor (and there are many of those out there). The reason I ask about the secondary disease is because that can affect which medications you should be using for pain. This disease causes clotting problems and needs to be treated immediately. Certain drugs that people normally take can kill you if you have this disease (things like birth control pills will cause stroke). It's a simple test that should have been taken when you were diagnosed with Lupus but don't assume that it was. Ask your doctor. My wife was diagnosed with Lupus at 15 and had a blood clot in her leg. Even still the doctor didn't test for Antiocardio lipid syndrome (which she has too). As a result, when she was 24 she almost died from a bleeding problem. She is now on medication (warfarin-a blood thinner) to keep her blood from clotting she is also on predisone for inflammation.

Interestingly enough, I just talked with my wife a couple of minutes ago. She has chronic pain in many of her joints (presently her ankles are hurting). We deal with many, many different issues on a daily basis but I tell you what...We live a great life. My wife is a Dentist and does well for herself inspite of everything. She tries to stay healthy and fit and does the best she can.

BTW, Lupus affects more women than breast cancer and AIDS combined but you don't hear about those of us who suffer with this disease. You should contact your local Lupus support group. If you would like any additional information..please give me your email address and I'll contact you...we live in Southern California and have great doctors if you're in the area we could share this info with you.

Take care of yourself and good luck to you. Remember that you control your Lupus it doesn't control you.

Answer 3

Here is another story from Forever Living Products, about relief of Lupus symptoms with their natural products with no side effects. You can get them from

www.foreverlivinginternational.com

They all have 100% money back guarantee within 60 days if not entirely satisfied.

LUPUS
Frank Short
Brenda, my wife, became ill some 19 years ago and after 8 years of toing and fro ing to Harley Street was diagnosed as suffering from Lupus.
Various medication was taken including 20 milligrams of steroids per day.
Over the years Brenda's condition steadily grew worse and in October 1994 Brenda was taking as many as 10 Paracetamol tablets for pain relief and between 45 and 50 milligrams of steroids per day.
The side effects of such medication was causing excessive hair loss, brittle nails, irritable bowels, thinning of skin tissue, excessive weight, to name but a few.
She was unable to participate in many of her previous past times and life was barely worth living.
During October 1994, a friend who was a distributor for FLP suggested that she had absolutely nothing to lose should she try a course of Aloe Vera.
Brenda commenced taking Aloe and by December 1994 Brenda's health showed improvement and she had been able to slightly reduce her daily intake of medication.
She then doubled her intake of Aloe and by the end of February 1995 had halved her daily intake of medication.
Brenda also started to enjoy a better life style and started enjoying past recreational activities previously denied her.
As Brenda benefited greatly from the taking of Aloe, she decided to join FLP as a distributor, in order to help others with their various ailments, and, by no means least, to earn a regular income.
Brenda's hair has stopped falling out, she now sports a beautiful set of nails, she has lost 11/2 stone in weight and has been able to reduce her daily intake of medication to 2 Paracetamol and 5 milligrams of steroids, most importantly, she feels more active and healthy.
At Bournemouth Brenda was promoted to Manager and we both thank FLP for the benefits of their Aloe products and for the benefits of a very well precision Marketing Plan.

Answer 4

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Answer 5

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Answer 6

HELLO, YES, I HAVE HAD IT FOR 16 YEARS:( ALOT GOES WITH IT!:( SORRY TO SAY, ALONG W/ FIBROMYALGIA, AND ALOT OF OTHER THINGS:(PLUS I HAVE A 19 YR OLD SON WHO IS TOTALLY DEPENDENT ON US!!!!!! NEED TO MAKE IT SHORT FOR NOW YOU CAN E-MAIL HERE OR [e-mail]:) NOT MUCH SUPPORT, I ONLY LIVE FOR MY SON YES ALOT OF MEDS OFF & ON YOU NEED TO BE VERY CAREFULE:)YES IT HAS TAKEN ALOT FROM MY LIFE, BUT CAN ONLY DO SO MUCH???? WHEN IN A SITUATION AS I AM IN:(, AND NO GOOD HAS CAME FROM THIS!! I WISH YOU ALL THE LUCK IN HEALTH & HAPPINESS:) WRITE TO ME IF YOU WANT:), STRESSED