View Full Version : Newbie poster

09-10-2012, 04:32 PM
I have been a voyeur of this site for awhile...time to get involved. I'm Lynn..have SLE. I was diagnosed a few years ago. After I got on plaquenil, my symptoms became very manageable. About 3 months ago, a ton of stress came my way and my disease has gone haywire. Back pain galore...no appetite...more hair loss...and skin that looks like I weighed 400 lbs and lost 300 of it..saggy..yucky. I have tried chiropractic adjustments...no help. I am now trying accupunture. I have only had 3 treatments, so the jury is out. I have also heard about the benefits of hyraluric acid supplements to help with joint pain and eye lubrication. I have been taking adderall to help with focus as lupus fog is alive and well. The adderall has been very helpful although I don't like the idea that I have to take drugs to stay awake and then more drugs to fall asleep. Basically, I am asking if anyone has any thoughts on anything I have mentioned. I feel like the quality of my life is slowly going away...and I want my hair back!! Any products that anyone can recommend? I haven't lost enough to need a wig, but what i have is sparse and lifeless. I welcome any advice...

09-10-2012, 10:05 PM
hi lyn.

glad you have stopped voyeurising.
welcome to the family.

unfortunatelly, many of the alternative medications are not suitable for lupus.
our problem stems from having an over active immune system.
drugs like plaquenil work by creating a chemical reaction within our body.

some things that have helped others, worth considering.... and talking to your doctor about.
arobic exercise - water arobics is softest on the body.
fish oil suppliments
anti inflamitories

again welcome.

09-11-2012, 02:49 AM
Thank you. I do take all of the above, but I haven't done water aerobics. A few months ago, I was jogging...I know i should at least get back to walking...my circulation could certainly use the movement. By the time the sun goes down, I usually do too. I live in FL, so I am avoiding the heat and sun. Will keep plodding forward,,a day at a time. i see my rheum tomorrow, so we'll see how the labs look. I will keep doing what I can to try to stay on top of this disease and not let it define me.Thank you agaiin.

09-11-2012, 05:47 AM
Hi Lynn, glad you joined, look forward to seeing you on here. A couple years ago I got acupuncture for a few months to relieve stress and I quite enjoyed it - it just put me in a happy, floatly mood for a few days - I keep thinking I should go back. I just use basic natural tears kind of eye drops with good results. I think a lot of things that anyone can do to get generally healthier - healthy food, vitamins, exercise, relaxation stuff, are good for us with lupus because it's important for us to take good care of ourselves.

09-11-2012, 11:23 AM
Hi and welcome to WHL. I have to step in, not as a fellow Lupus patient, but as a moderator and make a couple of comments.

Although we here at WHL do believe that everyone should take care of themselves and we need to be as healthy as possible we have one rules that cannot be broken. We do not allow discussions about natural or alternative treatments for this diseases because there are none. Discussion of using alternative treatments instead of proven medicines is reason for an automatic ban from this site. (Click here to read a post from our founder and the reason for this policy.."How to get banned from WHL" (http://forum.wehavelupus.com/showthread.php?11253-How-To-Get-Banned-From-WHL)). Having said this, I think that you are saying that you are trying natural things in conjunction with meds and approval from your doctor which is different than looking for things to take instead of proven meds. Our reason for being so strict on this policy is that people die trying to find ways to not be on meds. Our medicines keep us alive and although they may have some side effects that we don't like there are no "natural treatments" for Lupus.

Having said that, some people do find things like acupuncture, messages, chiropractors, etc to help relieve stress which is a good thing for everyone. They are not cures for Lupus but if they bring relaxation or reduce some muscle stress then there is no harm in giving it a try as long as your doctor is on board.

09-11-2012, 02:41 PM
Hello LVau, and welcome to WHL. For me, a flare last year just about floored me, and I finally followed several folks' here, my doctors', and my wife's advice and tried some anti-depressant medications. After several halting starts, we settled on a particular low-dose (can't remember the name... foggie foggie), and things gradually slowed down, and the cycle was broken. I'd still be doing it, except I had a reaction to something else a couple months ago, and had to quit everything in order to get my skin calmed down (I got a bad rash, and things went downhill from there). I'm starting things back up again, and the anti-depressant will be started again after I get going on the plaquenil, which will be 10 days from today... The anti-depressant isn't for depression, since I don't have "classical" depression, but the med does slow things down to where I can sometimes get some sleep at night, which helps immensely. I don't "tense-up" as badly, I guess you'd say. If you haven't tried 'em yet, consult with your doctors (I talked to both my pcp & hematologist before doing it) and see what they think. Pay close attention to your reaction. It'll usually be subtle, if you get things correct. Welcome to the forum again!

Edit: Almost forgot: I use a recumbant bike for my exercise, since even walking can be tough anymore, and a regular bike for me anymore requires too much co-ordination, and is almost dangerous in my 'control'... 'sides, it hurts when I crash... Massage is one of my favorite relaxers, but the wife wants her turn too, and I'm awful at it... tic