How do you prevent flares?

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Maenad
Regular Member


Date Joined Mar 2008
Total Posts : 20
   Posted 4/23/2008 9:22 AM (GMT -7)   
The intARnets tell me that, besides the drugs (that I so far refuse to take because the side effects would be worse than my current lupus symptoms), the way to prevent flares is to avoid sun exposure, eat a healthy diet, exercise, and get enough rest. Um, OK. Apart from the avoiding sun, that's pretty much the all-purpose generic advice for staying healthy for anyone on earth.
 
So I'm wondering...
 
Do any of you here have more specific and USEFUL advice about diet and/or lifestyle things that help you avoid flares?
 
Thanks!
 
 
 
 

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/23/2008 9:38 AM (GMT -7)   
Hi Maenad:

Well, first off welcome to our forum, you'll meet lots of good people here and get great advice. As for avoiding flares you should take your medication, get plenty of rest, and avoid the sun. Basically doing everything the doctors suggested. The thing to remember is when you're having a good day not to over do it. Remember that when you over do it, that's when you're most likely going to flare up.

I limit how much time I spend on being out of the house for doctors appointments as the days at the hospital and long and hard for me. If I'm feeling up to taking my daughter to the mall, I make sure I use my wheelchair instead of walking for several hours around the mall. The key to everything with lupus is moderation.

Eating healthy, resting lots, exercising as you can tolerate, and taking your meds are the best way to stay away from flaring. I hope this helps, I'm sure others will be along to give their suggestions.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 4/23/2008 11:46 AM (GMT -7)   
In addition to the things already mentioned, I think it is really important to try to pace yourself and to listen to your body. Don't push yourself too much on days that you don't feel great and make sure that if you have a really active day or days that you schedule some down time and rest time.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 4/25/2008 11:15 AM (GMT -7)   
I just wanted to add, that for me, taking the meds a year ago would have given me side effects worse than most symptoms. I didn't take the plaquenil as I couldnt tolerate it.

I have continually gotten worse over that year. Now.. I am wishing like heck that I would have kept trying to take the plaquenil. I am a mess.

The other two posts gave some very good advice, but I would also caution you to listen closely to your rheumy...maybe the meds will help prevent worse things in the future.
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/25/2008 2:09 PM (GMT -7)   
I agree with hippimom, I think it's imperative to learn early not to push your body past the limits. This was a very hard lesson for me and I suspect most lupies. God Bless YOU, Judy

python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 4/27/2008 2:06 PM (GMT -7)   
Hi Maenad and welcome to the Forum!
You have come to a great place for understanding and advice. There are alot of wonderful and caring people here who are great to share with or vent to. Everything that has been said already is very good advice. I find that overdoing can bring on flares for me, and too much time in the sun. Also, stress will do it for me every time. I won't preach to you about taking the meds, but I will say they saved my life and today allow me to function where I wouldn't be able to otherwise. Just listen to your rheumy and listen to your body.
 
Take care
Donna
SLE, Lupoid arthritis, Mixed Connective Tissue Disease, Scleraderma, Polymyocitis, Reynaud's, Hypo-Thyroidism, Pericardial Effusion, Irregular heartbeat
 
Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Vicodin.


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 4/27/2008 2:43 PM (GMT -7)   
Greetings, Maenad! Welcome! You are correct, the advice you are reading on the internet sounds like good, normal advice to anyone for staying healthy. If you have lupus, however, there is little wiggle room and you must follow the advice religiously, no exceptions can be made. I won't preach about the meds, either, but they have made my life bearable and, also, made it so I can get out of the bed and move - literally! Staying out of the sun is also extremely important.

As you go through life and lupus begins to really manifest itself for you, you will do anything necessary to make yourself comfortable. Maybe you will be lucky and go into a nice long remission. I sure hope so. I wish we all would be so lucky!

Good luck! My prayers are with you!

Audrey
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 4/27/2008 5:11 PM (GMT -7)   
I don't know what your symptoms are and of course we are all free at any point to decide what medications we wish to take, if any.
However many more people than you might think find their lupus responds very well indeed to basic medications such as anti malarials and they suffer no side effects whatsoever even after taking them for many years. It's impossible to tell how a medicine can affect you either way unless you try it. There are ways of managing some medicines so as to avoid initial upsets. For example very slow introduction to Plaquenil and Imuran usually mean there's a minimum of gastric problems.
There is also an alternative to Plaquenil , Quinacrine, which is often a very acceptable alternative for those who can't tolerate Plaquenil and there is often an alternative to other medicines.
Blood tests for these first and second line drugs and eye tests for the Plaquenil will show any hidden clinically unacceptable side effects.

Unfortunately there is no sure way of predicting how lupus will develop in any individual or if it will at all and in some people it dies down. Plaquenil has been shown to reduce flares and has many other considerable advantages not least of which is that taking it might well reduce the need for more powerful meds along the line.
There are a number of strategies for reducing general inflammation such as rigorously eliminating all processed foods and sugars as well as animal fats and hydrogenated fats from your diet. Some people find that certain foodstuffs trigger their lupus - that is very individual so you need to elimate food groups for several weeks then reintroduce them to see how you respond. Some supplements may reduce inflammation. So I would say we need to do much more than your average healthy person trying to maintain their good health, in all respects. Sun avoidance is a really serious undertaking if we are photosensitive.

Learning to say "No!" is esssential.

I advocate learning stress reducing techniques. Since stress can never be entirely eliminated and some major stressors are totally unavoidable, such techniques are invaluable. Having a variety at your disposal maximises their value.
Even if you decide not to try medicines, please get regular check ups for hidden signs of worsening disease. Very oftewn not taking medicines represents denial or refusal of the disease and a lot of wishful thinking. Kidney disease creeps up and isn't obvious until it is quite advanced. Don't ignore potential signs of worsening disease. The aim is to do the best possible for yourself and make well informed decisions based on realities, not wishful thinking

All the best

BB

Breebree
New Member


Date Joined Apr 2008
Total Posts : 1
   Posted 4/28/2008 8:25 AM (GMT -7)   
Hi, I am new to the forums here. Right now I am in the middle of getting to my diagnosis. They already know it's an auto immune disease, my doctor says he is 95% certain it is Lupus, he just doesn't know which one. He says he has to take a lot of time to document all the symptoms, until he can figure out which one(s) I have.

I get flare ups, and for me the majority of the time they start with my hands, then my feet. I get small patches of red on my hands, then the insane, painful itching starts. I never thought itching could be painful, but it is. It drives me crazy. My doctor has given me creams, and lotions. I have tried every lotion (like Aveno products) I can find to relieve this itching.

Last week my mother, was at a thrift store. She found a Homedics Paraspa Elite Heat Therapy Paraffin Bath. It had never been used and was still in the box. We set it up, and the next time I saw the red patches coming, I turned the machine on and melted the wax. I dipped my hands in the wax, and waited the time it said before I removed the wax off my hands. To my surprise it prevented the patches and the itching. I thought mabey it was a fluke, a coincidence. I didn't have any itching that day on my hands. A few days later, my hands and feet decided to act up on me. With my mom's help, I dipped both my hands and feet, and waited till it all dried and became cool, peeled off the wax, and the itching subsided, and didn't come back that day.

So, for me (and I know different things work for different people), this wax spa, is a god send. I think that when I can ward off the stuff that starts it, the itching in my hands and feet, it wards off other symptoms, that usually follow the itching.

If anyone else has tried this with success, I would like to know.

Note** the itching on my hands and feet are not the only symptoms I have. I have a multitude of other symptoms as well, I was just talking about the itching hands and feet symptom here.

Post Edited (Breebree) : 4/28/2008 9:29:04 AM (GMT-6)


SFnative82
Regular Member


Date Joined Mar 2008
Total Posts : 39
   Posted 5/7/2008 4:54 PM (GMT -7)   
I think everyone is different because sun exposure makes my rash on my legs lighten within 20 minutes and my hives lighten up fairly fast. I have always been good in the sun though. I never burned or got sick after a day in the sun like some of my friends.

Like I said different for everyone.

As for swelling...moving, getting up always helps me. Within an hour I can get most my swelling down.
*jenn--#2*
 
 
Who the heck are "THEY" and why is everyone asking them these questions?
"THEY" sure do have a lot to say...

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