View Full Version : Trying to deal

Ms. Scott
11-09-2006, 05:06 PM
I was just recently diagnoised with lupus in September of this year but I have been dealing with the pain for over a year I was just taking OTC pain medications because I thought it would go away...so sad it did not go away it only got worse. One morning when I woke up and I could not move I finally had my husband take me to a urgent care in our area. It was there that my ANA tested positive, but that was just the begining I had to travel to another city to a specialist....long story short I was finally able to find a great doctor in my area.

I have two small children and I think that not being here for them is the hardest part for me, I have had a aunt who has died from a massive heart attack brought on by her lupus and that really scares me. I am only 27 and I just feel like a old lady taking 4 different meds a day and taking methotrexate once a week to maintain. I am really ready for this to be over. I am glad that I found this site were there are people who can relate to what I am going through. I love my family dearly but they don't understand.

11-09-2006, 05:25 PM
Finding that good doctor is half the battle - so many doctors don't really understand lupus. So, maybe, things will start to improve with treatment - sending good thoughts your way!

11-13-2006, 07:42 AM
Hi, just keep your thoughts positive and eat healthy and ask for help when you are feeling low. I have two little ones too that I haven't spent much time with due to exhaustion and generally feeling sorry for myself. From what you read here getting yourself healthy by the things you can control like food and exercise will make you feel 100 times better. The other things you can't control hopefully you have a good doctor to rely on. I have finally gotten myself into a good mindset and I WILL see these kids grow and I will do everything in my power to keep myself healthy.

Good luck to you. Keep positive as every single one of us is our own individual Lupus case and no two are alike.

Take care.

11-19-2006, 09:50 AM
Hi, it's hard to have Lupus and I can't imagine having kids while going through it too. Must be difficult and wish you only the best. I was diagnosed last month officially so I am very new to it - at first you hear the word and wonder what it is... then you research and see your symptoms... and how you suffered so much before that (I couldn't even move in bed). I've learned patience is important... even though that's hard sometimes and eating too, but right now I am not sure if I'm supposed to be eating healthy foods (which I'm doing to boost the immune system) or non-healthy foods like eggs and meat (which I'm doing to boost the anemia part of LUPUS). ANY SUGGESTIONS? Or is the anemia more imprtant right now??
Any help appreciated, Thanks.

11-23-2006, 08:50 AM
Hi nd106 :lol:
Diet and Lupus are very important and I know how frustrating it can be trying to eat for the many symptoms that we have with Lupus. I have been anemic all of my life and have only been told to eat more dark green leafy vegetables and other iron-rich foods (http://www.bloodbook.com/iron-foods.html). However, even this can be tricky for us because some of those foods are described as being not good for Lupus. In general, we are advised to decrease our intake of red meats because Lupus attacks the proteins in our bodies. It is suggested that people with lupus should consider following a diet such as the American Heart Association's diet.
There are many different diets that are suggested for Lupus (some of which are discussed in these forums), with lupus, as with many autoimmune and degenerative conditions, our digestive system may also be compromised and some of us have developed food sensitivities and/or allergies. But, simply stated, the best diet for lupus is the best diet for all of us. Enjoy moderate amounts of freshly prepared organic foods and a variety of whole foods. Avoid highly processed, refined, denatured foods—including leftover or stale foods.
Fad diets, advocating an excess or an exclusion of certain types of foods, are to be strictly avoided and may cause more harm than good. Scientists have shown that both antibodies and other cells of the immune system may be adversely affected by nutritional deficiencies or imbalances. Thus, significant deviations from a balanced diet may have profound effects on a network as complex as the immune system.
Some of the most general suggestions for diet and lupus are included in the following article:
More research is emerging. In the review article, Amy Christine Brown, RD, PhD, an assistant professor of nutrition at the University of Hawaii at Manoa in Honolulu, reports that certain foods and nutrients may improve lupus, while others -- including those troublesome alfalfa sprouts -- may exacerbate the disease.
"Patients with [lupus] may benefit from a balanced diet limited in calories and fat (especially saturated and omega-6 polyunsaturated fatty acids), containing rich sources of vitamin E, vitamin A (beta carotene), selenium and calcium," she writes.

Vitamin E, vitamin A, and selenium are antioxidants and may have anti-inflammatory properties in people with lupus.

Also potentially beneficial are fish oils (which contain omega-3 fatty acids), evening primrose oil, flaxseed, a plant herb called Tripterygium wilfordii, and supplements of a weak male hormone called dehydroepiandrosterone (DHEA), Brown says.

"Stay away from zinc, which is found in meat and shellfish, especially oysters," Brown tells WebMD. "It enhances immune response, and you don't want to help an immune system fight itself."

People with lupus should limit fat intake to less than 30% of total calories, and may want to avoid substances rich in omega-6 fatty acids including safflower oil, sunflower oil, poppy seed oil, and corn oil, because these fats may exacerbate the disease, according to studies in rodents, she says.

But the omega-3 fatty acids contained in the oils of several fish varieties, including mackerel, tuna, whitefish, and herring, may slow the disease and have an anti-inflammatory effect, Brown says.

Future studies may look at the use of bromelain, a complex of enzymes found in pineapples, to more clearly define any potential anti-inflammatory effect. "Boxers use bromelain as an anti-inflammatory agent, and it would be interesting to study if it has such an effect in people with inflammatory conditions," she says.

Supplements of bone-building calcium, along with vitamin D, which helps the bones better absorb calcium, also may be beneficial to people with lupus because the steroids commonly used to treat the illness may result in the brittle bone disease osteoporosis.

"For people with lupus, there are potential benefits to healthy lifestyle, including healthy eating. That said, there is no cure for chronic autoimmune diseases such as lupus from diet," says H. Michael Belmont, MD, director of the lupus clinic at Bellevue Hospital and chief medical officer at the Hospital for Joint Disease in New York City.

"There are examples of types of foods that have aggravated lupus, and chief among them is alfalfa," he says. "I tell patients to avoid alfalfa."

Many people with lupus may be at risk for early and aggressive heart disease, so there are

"strong reasons for women and men with lupus to follow a general heart-healthy diet that is low in fat, high in fiber, and replete with natural fruits and vegetables and lean meat, fish, and veal," Belmont says.

If a lupus patient is taking steroids, Belmont recommends adding 1,500 to 2,000 milligrams of calcium, and 800 international units of vitamin D.

"Lastly, DHEA may help relieve mild to moderate lupus, and may allow a tapering off of [the steroid] prednisone," Belmont says.

I hope that this has been helpful

11-23-2006, 09:56 AM
If you have lupus and anemia, it is important to know what type of anemia you have. Many women, with or without lupus, have iron deficiency anemia because of blood lost during the menstrual cycle, or inadequate dietary intake of iron. This type of anemia generally responds to iron supplements and eating an iron-rich diet. But women with lupus may have auto-immune hemolytic anemia (anemia caused by premature destruction of red blood cells) or anemia of chronic disease (body is unable to utilize stored iron to manufacture red blood cells) - in these forms of anemia, iron supplementation will not help and might actually lead to iron overload. So you shouldn't use iron supplements unless your doctor has specifically recommended it. These types of anemia are usually treated by treating the underlying disease - such as lupus. There are also other causes of anemia, but they are less common, and require ongoing medical treatment.

11-23-2006, 10:13 AM
Ms Scott, I am also a new member and was so greatful to have found this site. I have already gotten some great responses to questions and I have learned so much already. Hang in there! I was on Methotrexate for five months and I finally stopped taking it. I didn't feel like myself and I was tired and dizzy alot. And with two sons myself I couldn't deal with it. I feel much better now and I am just taking plaquenill 2x day and praying I stay well. I know the feeling of just being "over it" already but hang in there and don't get stressed...it will only aggrevate the Lupus.


11-23-2006, 06:46 PM
Hi, thanks so much for this diet info. As mentioned before I am very new to lupus, only diagnosed last month and have not even gotten the chance to discuss diet and exercise with my doc. But I got some great info. from here and it is very helpful because I didn't realize I am not supposed to be eating too much meat, in fact, body is dumping protein. Hope everyone had a good (as possible!) Thanksgiving.
---- One quick question: So if body dumps protein, it is better to avoid meat & protein?

By the way I will look into that diet plan mentioned above! Thanks!