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Finally diagnosed!!!
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An_245493 posted:
ok my Dr finally gave it a name symetic lupus...Im relieved but very fearful....I went through back surgery in hopes of living life with a lot less pain and now im dealing with the one thing I feared was that surgery but i needed a quality of life so I did it and for about 3 yrs really seemed better and then the aching tightening swelling joint pain started, that with severe raynoulds and pulmonary thombosis the realized after test it is lupus...surgery cant make this better, and the fatigue is the worse...So my question is how to you find a quality of life with this disease??? and at first I was having flare ups but this one has been here for atleast a month, do they last longer till its just constant????
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lisatru62 responded:
You have to find quality of life wherever you can. There will be times when you can't get out of bed and days were everything is normal. Medications can go a long ways towards keeping the symptoms at bay. A flare-up can last for weeks or longer with little relieve but sometimes they only happens for a day or two then gone. You have to figure out what your triggers are and avoid them.

Sometimes the sun, too much yard work or even stressful situations can bring on a flare. I've heard that diet and exercise can help as well as hurt depending on your particular situation. I've found that drinking any alcohol is a bad idea and walking in the sun for exercise will bring on a flare, so I avoid it.

At least you have a diagnosis, which is more than some people get. Talk to your doctor about meds and possible triggers and watch everything that you do closely.

Good luck and hope this helps.

Lisatru62
 
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mgarrett67 replied to lisatru62's response:
yeah having a reason does help, but the stress thing is hard for me in the situation of our lifes......I go to the DR tomorrow and will go from there....ty
 
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kathyrn16 responded:
I also have had this disease for many years, but none of my flares have been life threatening. Chronic pain, fatigue, memory fog, weight gain (thank you prednisone) infections, especially in my gums. I have had weeks/months where I have been down in bed, then again just a few days.

For me, getting my stress under control has helped the most. Being wise about the sun and making sure I have protection if I am outside. I garden in the early morning and late afternoons. No more ball games or sports during the day! Taking control of my life and with my doctors. Not pushing myself, knowing when to stop & slow down. Resting and getting extra sleep. Most of my days I have pain but I control it. Swimming and strectching in the pool. Being active to help others and for me working helps me to keep my mind off of ME! Life with lupus is not easy, but it can be managed. I wish you painfree days and a balance in your life to attain control. Blessings, kathyrn


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