View Full Version : newly diagnosed
01-14-2008, 06:41 AM
I am so thankful to have find this site. I was recently diagnosed with lupus and am just looking for some encouragement, advice, etc. I'm trying very hard to stay positive and now do whatever I can to help myself. In a strange way, it was a relief finally knowing that what I was feeling wasn't in my head. Has anyone taken natural supplements like Omega 3, chrominum pocolinate, DHEA to help with Lupus? I work for my Primary care physician and she sent me to a compounding pharmacist who suggested I try these. It's been a month so far on these and we tested my ANA level again and it dropped from 1280 to 40 (still showing postive). Any thoughts or experiences on this?
01-14-2008, 11:05 AM
This is a forum of support, shared wisdom, shared joys and sorrows and friendship. I'm glad you've joined us!
I've been eating a high omega 3 diet and taking flax oil for some time. I also take ground flax, ginger and turmeric daily, in addition to vitamins and minerals. I haven't tried the chromium or the DHEA.
There have been various discussions over time about the DHEA, I think the consensus has been that if you try it, be sure it is under a doctor's supervision, and the "over the counter" products may not be appropriate. The bits I've read about it indicate that results may be very good for some.
It sounds like you're having some good results with your regimen, AND that you have a fabulous physician. She not only listened to you and believed you when you said "it hurts" - she is also open to alternative treatments.
My rheumy (rheumatologist) and primary both tell me that the ANA number doesn't always correlate with how a person with lupus FEELS, often my ANA is lowest when my pain is highest. (We're just a mixed up bunch, I guess).
Hugs, dear, and welcome. Please browse the boards, chime in, and meet the others here.
sick n tired
01-15-2008, 11:16 PM
I do agree with you that a diagnosis can be a relief. I had years of hearing that it was all in my head. It seems strange that my first reaction was relief.
Chromium piccolinate? Isn't that the drug that is put in all of those diet aids? It speeds up the metabolism or something. All I know is that it raises my blood pressure and I don't have a sense of 'well being' that is claimed. My emotions are affected but not for the better.
It is great if it is working for you. Are those the only drugs that your rheumy has you on? I know that if we take steroids for too long then we can be looking at diabetes. I have read that the chromium might help with that.
01-16-2008, 06:28 AM
My name is Becky to. Iuse my Grandsons name on the forum. I to was just diagnosed in july. I was a college student for 3 years i was 2 semesters from completeing my nursing degree. I was so tired and my jionts were always inflammed. I thought it was stress from school. Iwas under so much pressure with classes and clinicals. IN Jan. 2007 i started feeling like i was going to die. i couldnt even think or concentrate any more. I went to my gen. doc. and she refered me to a BAD rheumy. He prescribed praqinal for rhemetoid. Istill felt lousy and had to drop out of college. I then started with terrble pain in my liver area. I went to the ER and they said I had fluid around my heart, fluid in my lungs and my liver enzymes were 1298. I was in bad shape, My rhemy thought it was drug induced . He took me off all meds and told me to wait 2 weeks and see what happens. I layed there for 1 week in so much pain i couldnt move. Icalled the rheumy and he said bite the bullet Iwould have to wait. I couldnt take nothing at all for pain. on the 8th dayi went to the ER they sent me home. Iagian went to the ER because it hurt so bad to breath because of an enlarged liver, pleuresy, and inflamation in the tissuie between my ribs. the gave me a neb treatment and sent m home. the next day my sister came up to see me and took me back to the ER. i was in liver failure. My urine was the color of coffee. They transported me to a bigger hospital and I finally got treatment. Its been 7 months and my liver enzymes are finally down to normal. I cant take any meds. unless the doc. oks them because of my liver. Iam thankfull to be alive. I have my daily pain and fatigue. I started showing protien in my urine this week so its back to the doc. agian. The life style change has got me the most. Iam ok deoression is there but i get busy with something or chat to people on this site. keep your chin up Beck !
01-16-2008, 02:22 PM
I really appreciate the feedback! I had a follow up today with my doc & she seems pleased with the results so far and how I am feeling. She does want to ease me off the prednisone over the next few weeks and put me on Imuran. I need to research this med but she said it will help the Central Nervous System Symptoms I've been having (cloudy thinking, memory loss, migraine headaches). Anyone had any experience with this? I'm trying to stay hopeful and I just keep praying for strength and patience. I have 7 kids (5 step and my own 2) that all live at home but my husband is a wonderful help. I need to figure out how to pace myself and schedule things to be the most productive but not to overdue. That's one of my biggest obtacles (mentally), not wanting to burden my husband with more responsibility and wanting to be healthy so I can be active with my kids. Luckily, the kids are ages 13-24, but we have 5 teenagers that require a lot of running here and there. Thanks again for all of your support, please let me know how I can pray for you as well.
01-16-2008, 05:26 PM
It's nice to meet you. I to have times of "cloudy thinking", memory loss (I have had trouble remembering what day it is, how old my kids are, and other things that I should know), I also suffer from migraines. One thing that helped me with the migraines was taking a daily dose of magnesium. I've read that sometimes even if levels are what is considered "normal" it can be low for that particular person. I'm not giving medical advice.. just saying what helped me. My levels were tested and were low. I had muscle cramps and spasms that caused my doctor to test me. I would wake up in pain. With charlie horse's in my legs, arms, and even my stomach. I'm glad that is over. But I have noticed when my level starts to fall, my migraines are the first thing to "come back".
I have found that eating healthy(no sugar and only good carbs), exercising, and making sure I have rest always helps... or I should say, when I don't do these things, my symptoms return. I recently started taking DHEA. There is some controversy over this. If I remember correctly, some reports state that it can increase the risk of certain cancers. I think I read somewhere that it can also cause hyperthyroid. I have a borderline low thyroid so, I wasn't too worried about it.
I was on chromium and omega 3 because I have insulin resistance. It did help my to get my blood pressure down, and to help me lose weight. I think I was retaining a lot of fluid. I'm sure me eating the wrong carbs and the insulin resistance might affect the way I feel...
If you haven't read "the spoon theory", you should. It's a great way to explain to family and friends how you feel at times. I can't post the link because I haven't been here long enough but if you go to "but you dont look sick - dot com" you will find it. Just put all the words together with out spaces..
I recently started dating a wonderful guy(Oct 07). He has 2 children and I have 3. Christmas really wiped me out. I didn't want to scare him away by having "Lupus". But, I had to let him know my limits were reached and I borrowed way to much from my energy reserve to continue. I had to sleep 9-10 hours a night for a week or so. I had to tell him, I couldn't go out to eat dessert anymore :cry: and that I had to cut back on doing things. He took it well and is still around!! :D I sent him the spoon theory via email.
It's great that your husband is supportive. My ex-husband didn't emotionally support me and he tended to act stressed. It added to my stress and I felt worse. There was much more to that whole thing but what I am saying is having good support at home is awesome!!
I'm glad you found us and I am new here too. I'm glad I found it!!
sick n tired
01-16-2008, 11:34 PM
I also have quite a few teens living at home. They are helpful but we have to remind them often. A few days before Christmas, however, a "friend" said something upsetting about them and I told my kids. I was crying that she thought I had not trained them well. (this came from a woman who has a maid and one very spoiled teen)My teens all got up and cleaned everything while I wapped the gifts.
I also am trying not to stress out where my husband is concerned. he has been great, but I sense that his resolve is waning. I get upset and stressed when he ends up having to do or help me with something that I always used to do. He seemed a little upset yesterday that I was too dizzy to make dinner. The newness has worn off. He was one of the people who thoughthat everything was all in my head. and why not he heard the doctor say it enough times.
Karen, Christmas really wiped me out, too. I was sooooooooo glad when the New Year came. PTL for endings . :) Oh, I guess I should say beginnings. :)
Have a great day,