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 Veteran
Posts: 164
   Location: Oregon | Alright so i have lupus and this morning i suddenly woke up not being able to barely walk because my hip hurts so bad, like crawl in my room in a corner in a ball and cry all day.. But i cant do that and im really not a baby when it comes to these type of pains. BUT TODAY is the worst i can remember this pain being. So i thought i would ask on here if any one has lupus and what they do to help it. I am going to ride later tonight as i have a competition this weekend and well i am not letting my lupus affect my riding time :).. I am really thinking of getting some BOT items after looking them up and reading more on them last night. Any way How does your lupus affect you? What do you do to help it?
ETA - I am not currently taking medication for it as it started giving me migraines that i couldnt even function with every night. I would rather live with the pain then have those everyday! |
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 Undercover Amish Mafia Member
Posts: 9992
           Location: Kansas | You need to call your doctor and make him/her aware that the medication that you were taking was giving you migrains......if you have LUPUS you really need to be on a medication |
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 Forever Young
Posts: 6768
       Location: relocated to Texas | hoofs_in_motion - 2014-01-08 3:23 PM You need to call your doctor and make him/her aware that the medication that you were taking was giving you migrains......if you have LUPUS you really need to be on a medication
Not true. I was diagnosed over two years ago. I have never taken any Meds for it. My brother has it too and has been on Meds but they make him sicker than the Lupus. I went on a Gluten free diet and have had no issues. I would suggest to the OP that you try a Gluten free diet and stick to it (no cheating). It is well worth the benefit of good health. |
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 I Prefer to Live in Fantasy Land
Posts: 64864
                    Location: In the Hills of Texas | I would sure take HF's advice and go from there.
Prayers..   |
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 Veteran
Posts: 164
   Location: Oregon | My doctor knows it gives me migraines it usually only happened when i took the prescribed amount of two a day so i cut back to one a day. I stopped taking the meds when i got pregnant as i didnt want any complications from it. After about 2 months of having my child i started taking it again and it gave me migraines from just one pill a day. So i stopped taking it again. Im happy to say i have been mostly ok since having her. Just the occasional really bad pain. (I still have the normal everyday aches and pains) but those i can deal with. My doctor i loved is now retired and i am stubborn so i havent been to see the new gal yet. I probably should so therefor i will call and make an appointment, but i have also heard gluten-free diets and have thought about trying it. It just seems like such a pain in the rear! LOL |
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 Veteran
Posts: 164
   Location: Oregon | Hollywood's Fan - 2014-01-07 5:11 PM
hoofs_in_motion - 2014-01-08 3:23 PM You need to call your doctor and make him/her aware that the medication that you were taking was giving you migrains......if you have LUPUS you really need to be on a medication
Not true. I was diagnosed over two years ago. I have never taken any Meds for it. My brother has it too and has been on Meds but they make him sicker than the Lupus. I went on a Gluten free diet and have had no issues. I would suggest to the OP that you try a Gluten free diet and stick to it (no cheating). It is well worth the benefit of good health.
Just curious what kind of meds was your brother taking? If you dont mind me asking.. :) |
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Extreme Veteran
Posts: 300
   Location: Mayberry | Very good advice Hollywood. I also suffer from lupus and until I found a top notch holistic clinic and actually followed their instructions I didn't think I was going to live. With proper nutrition and rest I feel almost normal most of the time. |
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 Forever Young
Posts: 6768
       Location: relocated to Texas | BKC2112 - 2014-01-09 12:27 AM My doctor knows it gives me migraines it usually only happened when i took the prescribed amount of two a day so i cut back to one a day. I stopped taking the meds when i got pregnant as i didnt want any complications from it. After about 2 months of having my child i started taking it again and it gave me migraines from just one pill a day. So i stopped taking it again. Im happy to say i have been mostly ok since having her. Just the occasional really bad pain. (I still have the normal everyday aches and pains) but those i can deal with. My doctor i loved is now retired and i am stubborn so i havent been to see the new gal yet. I probably should so therefor i will call and make an appointment, but i have also heard gluten-free diets and have thought about trying it. It just seems like such a pain in the rear! LOL I used to live on bread and pasta. It was a little challenging at first, but I value my health so the sacrifice of eating gluten free was well worth the option of going on meds, most of which can have some pretty severe side effects. I have been gluten free for nearly two years now and its just not a big deal anymore. I eat veggies and fruits, beans, cheese, yogurt, nuts, chicken, fish, eggs, and brown rice and brown rice products such as pasta, crackers and rice cakes. The almond/rice crackers are very good too. There are lots of gluten free products on the market now. Lupus is an auto-immune disease and a gluten free diet is beneficial for any auto-immune according to my doctor. Going gluten free was the best thing I could have done for my health. The Lupus just is not an issue for me.
Edited by Hollywood's Fan 2014-01-08 9:59 AM
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 Forever Young
Posts: 6768
       Location: relocated to Texas | BKC2112 - 2014-01-09 12:29 AM Hollywood's Fan - 2014-01-07 5:11 PM hoofs_in_motion - 2014-01-08 3:23 PM You need to call your doctor and make him/her aware that the medication that you were taking was giving you migrains......if you have LUPUS you really need to be on a medication Not true. I was diagnosed over two years ago. I have never taken any Meds for it. My brother has it too and has been on Meds but they make him sicker than the Lupus. I went on a Gluten free diet and have had no issues. I would suggest to the OP that you try a Gluten free diet and stick to it (no cheating). It is well worth the benefit of good health. Just curious what kind of meds was your brother taking? If you dont mind me asking.. : )
I don't know all of them, but one of them was Plaqunil (sp?) and it made him very sick. The first Doc I went to prescribed this to me, then he sent in his assistant to read all the possible side effects (one of which was blindness) and made me sign a waiver. I told him that I had never had to sign a waiver to get a prescription before and that I did not feel good about taking this drug. I called my brother to ask him if he was familiar with it, and he told me that he too was prescribed this drug and that it made him "sicker than a dog" and he stopped taking it. My brother has been lax in the past with his diet, thinking the gluten free was just too much of a hassle. He has been hospitalized 3 times with his lupus and has permanant damage to his kidneys. He is 10 years younger than I am. I have never had an issue with mine since going on the gluten free. You can say its a pain in the rear, I think it is a simple solution that can save your life. |
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 I Always Miss the Good Stuff
       Location: Oklahoma | JAG73 - 2014-01-08 9:10 AM Very good advice Hollywood. I also suffer from lupus and until I found a top notch holistic clinic and actually followed their instructions I didn't think I was going to live. With proper nutrition and rest I feel almost normal most of the time.
Same story, JAG73!  |
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  Twin Sister to Queen Boobie
Posts: 13315
       Location: East Tennessee but who knows?! | I don't officially have Lupus as the rhuematoid doc hasn't given me an official diagnosis but it is the primary condition he's suggested as I have all the blood markers and symptoms. There are are days that even the bottom of my feet hurt. I tried Humira and felt like I had the flu and stopped. The two biggest things that seem to help me are getting 7-8 hours of sleep every night and cutting out dairy, nuts, grains, and anything processed. I found that out by trial and error. I have to keep meat in my diet or I get too fatigued. I'm really bad to fall off the wagon and when I do, pay for it until Im bad enough to get back on. Listen to your body and how you react to food. |
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 Veteran
Posts: 164
   Location: Oregon | Thank you for every ones replys! I have truly come to love this forum! I will be making an appointment with the new doc for bloodwork ect.... and i am definitely going to look into the gluten-free diet. Although i just went shopping o.O... LOL
Did any one happen to lose weight or get in shape and have that help as well? I think it will help but i have horrible motivation to do so! |
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 Veteran
Posts: 164
   Location: Oregon | Hollywood's Fan - 2014-01-08 7:56 AM
BKC2112 - 2014-01-09 12:29 AM Hollywood's Fan - 2014-01-07 5:11 PM hoofs_in_motion - 2014-01-08 3:23 PM You need to call your doctor and make him/her aware that the medication that you were taking was giving you migrains......if you have LUPUS you really need to be on a medication Not true. I was diagnosed over two years ago. I have never taken any Meds for it. My brother has it too and has been on Meds but they make him sicker than the Lupus. I went on a Gluten free diet and have had no issues. I would suggest to the OP that you try a Gluten free diet and stick to it (no cheating). It is well worth the benefit of good health. Just curious what kind of meds was your brother taking? If you dont mind me asking.. : )
I don't know all of them, but one of them was Plaqunil (sp?) and it made him very sick. The first Doc I went to prescribed this to me, then he sent in his assistant to read all the possible side effects (one of which was blindness) and made me sign a waiver. I told him that I had never had to sign a waiver to get a prescription before and that I did not feel good about taking this drug. I called my brother to ask him if he was familiar with it, and he told me that he too was prescribed this drug and that it made him "sicker than a dog" and he stopped taking it. My brother has been lax in the past with his diet, thinking the gluten free was just too much of a hassle. He has been hospitalized 3 times with his lupus and has permanant damage to his kidneys. He is 10 years younger than I am. I have never had an issue with mine since going on the gluten free. You can say its a pain in the rear, I think it is a simple solution that can save your life.
Thank you for letting me know! I will definitely avoid that one! If i go back on medication for it! |
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 ...Dot Dot Dot...
Posts: 2062
   Location: SW New Mexico | BKC2112 - 2014-01-10 2:58 AM
Hollywood's Fan - 2014-01-08 7:56 AM
BKC2112 - 2014-01-09 12:29 AM Hollywood's Fan - 2014-01-07 5:11 PM hoofs_in_motion - 2014-01-08 3:23 PM You need to call your doctor and make him/her aware that the medication that you were taking was giving you migrains......if you have LUPUS you really need to be on a medication Not true. I was diagnosed over two years ago. I have never taken any Meds for it. My brother has it too and has been on Meds but they make him sicker than the Lupus. I went on a Gluten free diet and have had no issues. I would suggest to the OP that you try a Gluten free diet and stick to it (no cheating). It is well worth the benefit of good health. Just curious what kind of meds was your brother taking? If you dont mind me asking.. : )
I don't know all of them, but one of them was Plaqunil (sp?) and it made him very sick. The first Doc I went to prescribed this to me, then he sent in his assistant to read all the possible side effects (one of which was blindness) and made me sign a waiver. I told him that I had never had to sign a waiver to get a prescription before and that I did not feel good about taking this drug. I called my brother to ask him if he was familiar with it, and he told me that he too was prescribed this drug and that it made him "sicker than a dog" and he stopped taking it. My brother has been lax in the past with his diet, thinking the gluten free was just too much of a hassle. He has been hospitalized 3 times with his lupus and has permanant damage to his kidneys. He is 10 years younger than I am. I have never had an issue with mine since going on the gluten free. You can say its a pain in the rear, I think it is a simple solution that can save your life.
Thank you for letting me know! I will definitely avoid that one! If i go back on medication for it!
Going gluten free is the way to go, and be aware to not comsume any chemical sweeteners, it's hidden in a lot of foods, under the names, Equal ....aspertame, spenda,sweet and low.. all chemical sweeteners are poison to a body.
I don't eat processed or fast food. No soda at all...
I also go to a holistic healer.(my medicineman!) He does acupuncture and holistic chiropractic..I do take 4 organic supplements.
I haven't been sick in 3 years now. Not even a headache. Which is great , because I'm now one of the uninsured in this country..
I take NO meds at all. I'm 52.
I believe in natural being the way to go...
JMO.

Edited by jettster 2014-01-09 2:05 PM
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