I keep also seeing things about support. I just found out yesterday. and I am getting as Much as I did with Fibro, Not much. This is very serious and freaking me out. and not but one I feel I could talk too. People make it seem like it is no big deal a struggle but I will go on. Not what I am reading on sites. and I do not want what time I have gaining weight, going up and down on meds and losing my hair. I don't want to spend my life doing this now. I don't have another Battle in me for Drugs and hospitals...can you live a while without meds ?? I know I was told 3 years ago I had it then they said no. But now I know things I have been going through make sense. The chest pains, or what they say was pulled muscles every couple mounts.. it all adds up now..I finally went when my arms hurt to badly and my right shoulder was killing me. Please tell me something positive here.. Can you do Natural drugs to treat this ??? I am struggling with so many emotions right now. and the biggest was waiting for someone to care I had it. I guess I have had a pity party day.
Thanks
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Nobody1963
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I am not clear on what you are asking, however these days the majority of people with lupus who are treated have a normal life expectancy. You may not neccesarily require steroids or strong immune suppressants, but Plaquinil alone which most of us take can significantly help with certain symptoms. I have a love/hate relationship with my meds, but I would far rather be alive and take them, and I am on high doses of Methotrexate and have previously been treated with steroids. To be clear Fibro (which most of us have) is a condition, challenging, but non destructive. Lupus is a disease and can be very destructive, especially if it affects the organs, but can be well managed by meds under the care of a good rheumatologist. I am sure there are many on here who can suggest certain diets that can help inflammation, I am not sure why you would continue to attend Rheumatolgy if you are not accepting medical treatment, but interested to hear more? I do wish you all the best though.
It's really great to hear that lupus immflammation can be well managed with meds .
It has been one year that my daughter's diagnosed SLE . Now she is 10 years old . Doctor said it's mild . Although there is no organ involvement she is now seeing general pediatric and renal doctor . Not rheumatology. Do you think we should change ? But, now she is very well controlled .
Please dont just stop taking any meds. I was on plaqanil for years but had to come off it last year. At that point I asked my new rheumy if, while lupus is quiet I can just see how I get on without her giving me something else -Im already on pills for high blood pressure, sensitive bladder, warfarin, dihydracodein & gabapentin. I cant tollerate prednisolone & she was looking at methatrexate treatment :-O.
All is well (tollerable) til the pms creeps in age helped me in the past (best was sports 'warm up' & then THEY stretch you, for you. Also reflexology & aromatherapy (I trained in them & we practiced on each other!)
Its easier said than done 'avoid stress'... Ive had a lot recently but made myself let go cos its nothing I can actually do anything about - took me til the first signs of a flare to realise this.
I was diagnosed with lupus about 2 months ago...decided to not see rheumatologist because I do not plan on going on meds. They work for some people, but i am not interested. I take a digestive enzyme and probiotic before meals to help with digestion since I think I had leaky gut, losing nutrients and causing dizziness. (Dizziness gone since I started enzymes). I take a natto kinase enzyme to keep my blood from sticking (clotting kind of lupus) and drink turmeric, ginger tea daily as much as I can. Plus a turmeric supplement up to 3 times a day. Ginger tea...I am off dairy and on an anti inflammatory diet. I am considered low end lupus, so I believe this is why I can tolerate symptoms. Right now I did too much yard work and bike riding and my hips hurt bad. But, again, heating pads, etc. I exercise daily to keep moving and to stay strong. The digestive enzymes are saving my body energy and I am not as tired. I would recommend a nutritionist, or health store nearby with a nutritionist on staff. First place I started and read a lot. Oh, and my hot flashes are not as bad. Those were driving me crazy in the day and especially disturbing my sleep. Hope u find a solution u can live with, and feel better! Good luck.
Oh, and I take vit d every day, cranberry for UTIs, and flaxseed supplement for lowering cholesterol, blood pressure. Don't know if they all work, but I feel ok.
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Work??
My Own Parent thinks my Drug treatment prescribed is the cause of my problems verses my Lupus-Fibromyalgia-Thyroid disease!
Feel so alone. 
Should I push for hydroxy?
