View Full Version : New to Lupus

10-22-2013, 11:04 AM
I was diagnosed in February 2013, I had been feeling terrible with awful stomach pains, my family doctor was completely lost, he had me go through all kinds of tests, CT's, MRI's, and blood work on top of blood work. That's when I starting doing some research on my own, and I had almost all the symptoms for Lupus, so, I had him test my ANA, came back positive. So my family doctor said it was nothing to worry about, it was probably just wrong. Well since I am a nurse, I am aware that blood usually doesn't lie. So I went to a rheumotologist, he was able to concur that yes in fact I have lupus. I was started immediately on Plaquenil, was told to start eating a plant based diet, and get used to the idea. Well, I have never been able to get used to much when I know there is something wrong. But I don't know what I should be doing, what works, what doesn't? Help Please!

10-26-2013, 09:12 AM
Lucky for us the net has so much info,we can now inform ourselves,and that's where you should start. Good luck on this journey!

10-27-2013, 07:16 AM
Hi shanna. Sorry you are having to deal with all of this. I will tell you that there is no proof, nor does the Lupus Assoc. suggest, wasting a plant based diet. If yours does I am NOT telling you to go against him but it would be considered natural/holistic treatments and that is the only thing not allowed to be discussed here.

For the health of all of our family members we only discuss proven, medical treatments in working with our disease.

I will tell you that it has been proven that we should not eat alphalfa sprouts and a big study came out post on Lupus.org questioning whether garlic is good to eat (although most here said they couldn't give it up lol).

10-27-2013, 08:59 PM
Hello and welcome to our family. If, by plant based diet, your doctor is suggesting that you avoid too much red meat (or four-legged animals), then I agree with that. Many of us have had to restrict our intake of protein rich foods, such as red meats. I try to eat strictly fish and fowl.
It is suggested that the best diet is the one recommended by the Heart Association. We are also told to avoid legumes, alfalfa sprouts, and many herbal medications. There is a sticky here that discusses diet options.
However, if your doctor is suggesting a holistic approach to treating your Lupus, then I would suggest that you find another doctor. As Tgal mentioned, there are no holistic treatments that are proven to lessen symptoms, cause remission, or cure Lupus. There is no cure for this disease and only proven medical treatments can lessen symptoms if taken with the appropriate lifestyle changes.
We are here to help you as much as we can. I wish you the very best!

Peace and Blessings

10-28-2013, 06:43 PM
Tgal, I wasn't suggesting for Jamie4122 to do or not to do anything holistic, I just wanted to encourage her to educate herself on Lupus. I myself know not to depend on diet alone as treatment.

10-28-2013, 07:56 PM
Oh Shanna I didn't think you were! I completely agree about learning as much as you can! I also see that my fingers and. Rain were not working well together which is somewhat common as I adjust to a new med (smile). I see I typed the wrong name in my post so please forgive me. I am so sorry if it came across like I was correcting you because that WAS NOT the case!

10-29-2013, 10:57 PM
Hi Jamie4122, and welcome to a supportive community.

First good for you for self advocating about your own medical concerns. That was one of the longest and hardest parts of the journey for me. Keep doing so! You will want a rhumatologist you can trust, because there are as many different ways to treat lupus as there are different kinds of symptoms of lupus, it seems. I have found people everyday it's mentioned have different opinions on what I should be doing with my medications, ect... And I have gotten pretty used to giving the stock answer of, "I finally have a good doctor that I trust, and has done more for my medical concerns in the first visit than any other in 7 years. I'm going to continue to follow the plan we have worked out for my treatment." some drop it, some don't. It's hard to have that confidence when everything is so new, and unsure. So there's a learning curve, but it looks like you're on the right track soaking up info.
These boards are a wonderful resource of who's tried what, if it worked, and real life side effects. They are also great for venting, getting the support you want/need, and people who have walked yours or a similar path and can point you to a good direction
The stickies up at the top are great references for a lot of info, and the search feature is good for gaining more specific or pertinent info for your meds/symptoms.
The best advice I can offer is stay in the driver's seat of your medical situation. Start, if you haven't already, keeping a symptom log. Since lupus can affect everyone differently, charting symptoms and what relieves your symptoms will help. Especially if you have or delvelop any brain fog. I use an app called My Medical on my phone and ipad to track symptoms. It's not the app of my dreams, but it's the closest that will do similar to what I need. It exports to Excel and my android and ipad communicate fine with the app even being on different operating platforms. I'm a big proponent of tracking everything, even the minor stuff because I wouldn't have been diagnosed if I wasn't carrying an old bloodwork paper with me. It wasn't the numbers themselves that caused the doc to look into autoimmune, but the difference in the same # over a period of time. So for me, tracking was everything as it brought an end to my 7 year fight of telling doctors something was wrong.

Keep learning, and know there are people here that really do understand.

11-23-2013, 08:19 PM
hi Jamie and welcome to the board, I haven't been on in a while... ( thanks to the healthcare reform ) my job is requiring so much more from me than I can give. I believe it is causing my flare up now, between my exhaustion, migraines, myalgia pain, foggy brain I am worn out. But I hear what your doctor and Susie are saying. I often go through spurts where I only eat fish or vegetarian diet. I have found it has helped my digestion when I have done it and also I can't swear to it but it really felt as though it was helping my joint pain. But that was only after doing months of the diet. I have never been big on red meat, I could live, breath, eat and sleep chicken. I can see the difference in my digestive system when I have red meat and some times chicken as well they really make my stomach hurt. I try to follow the mediterranean diet. I try to incorporate a lot more fruit also. The only problem for this diet for me is I am already thin as it is all thanks to lupus and single mom days, I don't want to loose too much weight I will be knocking on under weights door. The mediterranean diet also cuts out fried foods (all the things that are also better to promote a healthy heart, using things like olive oil instead of vegetable). Of course not cutting out your medicine treatment. I hope things get better for you and if you get a free moment look into the mediterranean diet you might actually like it! Oh and the whole sugar intake. I have never been a big fan of sweets and candy.... except for laffy taffy those can be addictive.... I dont think thats a recommended thing lol but a little sugar is needed every now and then

11-26-2013, 08:30 AM
Thanks for the advice on the app. I am going to try that one. You gave some great advice...You're right...everyone is different but taking control of your own disease is very important and empowering!