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lupus diet and exercising

Posted by on Jul. 8, 2012 at 7:50 AM
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In a way I wish i had never started looking into lupus. although i am glad my dad felt the need to inform me and us talking about things. I am seeing now where it could explain A LOT of my own problems. which my dad said long before he knew he had lupus that my health seems to be mirroring his. 

anyways i can't stand doctors and a lot of you ladies will probably not agree with my route on this. seeing how you all have probably been diagnosed and probably see doctors regular. i refuse to take big pharma meds. and i will try and see if changing my diet and exercise to help out. if this steps on toes i am sorry and well step out of the group if you wish. 

I have been researching diets for almost 5 yrs now (since my brother had died of a massive heart attach at 33). lately i have decided for me and my dad that i will look into lupus diets. i know everyone is different and different things for different people, but i can still get a general idea of how to eat. 

has anyone here tried diet changes and exercising? has anyone noticed things getting better or worse? 

by on Jul. 8, 2012 at 7:50 AM
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Replies (1-9):
momof3inCT
by Member on Jul. 10, 2012 at 1:22 AM

My sister bought me a book and CD on the "lupus recovery diet" it is basically a Vegan diet which I cannot do, but............I AGREE with you diet is important, my 1st dr said it couldnt hurt but wasnt a big promoter on it all, I do take Plaquenil but refuse to take steriods unless a dire situation, and this is where I dont get along with drs and they want to drop me as a patient. I simply ask for a reason WHY I have to take the steriod when there is non steriodal medicine available..............they have YET to give me a conclusive answer!! I HATE DRS TOO!

Anyways getting back to diet I did notice my lupus is much much much more manageable when my weight is lower and I eat mostly protein and veggies (I do the the south beach diet) it works for me not saying its for everyone but I love it. My step mom pushes the gluten free diet but I have been tested and am negative for celiacs and I  dont get sick like her so I dont think I need to do that. All I can say is listen to your body, I do notice when I have a lot of bone pain if I increase my calcuim and exercise I feel better. But then again who the heck wants to exercise when you feel crappy haaaaaaa! Also a few people have suggested proboitics to me but thats just not my thing. I do take a multivitimin, and fish oil which seems to be helping with my liver issues!

oldfashionSAHM
by on Jul. 10, 2012 at 1:20 PM
Before I ever knew anything about lupus I did start taking evening primrose oil which was awesome. I felt a lot better then I have been lately. I went through detox over the weekend from my diet change and just a small bit of soft drink now gives me a dull headache so I think the diet may help at least with some things.

Is there any curtain exercise or does it matter as long as hour not feeling worse
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momof3inCT
by Member on Jul. 12, 2012 at 5:24 PM

my drs have suggested any kind but I do mostly walking and I do feel better when I walk!

JDmommyJD
by on Jul. 13, 2012 at 3:29 PM

 You can say that all you want. But until you experience crippling pain you dont know what you will do. My husband HATES taking pills. Deeply hates. But hes at a stage he has no choice. Unless of course he wants to lay in bed all day in agony. Every night he takes 9 pills. He would love to quit them, but the pain would consume him. We found a special lupus center the other day and I just got him an apt. for the 23rd (this month). Hoping for good things.

Quoting oldfashionSAHM:

i refuse to take big pharma meds.  

 

jdouglas111
by Member on Jul. 13, 2012 at 6:10 PM

Where are you at that there is a lupus center?  That sounds like a great resource! Let us know how it goes!


The op may not want to take the meds until absolutely necessary which is understandable.  We each have our own brand of lupus and each need our own types of treatments.  It's one of the bitches about the disease.  No two cases are identical. 

Now about diet...I have heard that diet can help tons and tons!  As soon as my DS is able to eat a variety of foods I want to switch us over to an all vegan diet to see if it helps.  My aunt did it, she has a number of auto immune disorders and her health has been a lot better since the change!  Good luck with the diet and let us know what you think!  

Quoting JDmommyJD:

 You can say that all you want. But until you experience crippling pain you dont know what you will do. My husband HATES taking pills. Deeply hates. But hes at a stage he has no choice. Unless of course he wants to lay in bed all day in agony. Every night he takes 9 pills. He would love to quit them, but the pain would consume him. We found a special lupus center the other day and I just got him an apt. for the 23rd (this month). Hoping for good things.

Quoting oldfashionSAHM:

i refuse to take big pharma meds.  

 


Little Lupie Jessica purple ribbon

JDmommyJD
by on Jul. 13, 2012 at 6:17 PM

 We live in maryland :) were in harford county but the centers in baltimore.. only about a 45 min drive to get there. True about no two being alike. I just hate seeing him take all those meds and it kinda triggered soemthing i suppose. I didnt mean to offend the OP if thats what it sounds like. My husband has a hig caffein intake. I told him I read it not being good fro him but he wont give it up. Hes too tired without it. His work is very physical (likening to exercise?) and it makes him hurt worse. His doc called him in butran patches but we keep goign back and forth with insurance for coverage.. keeps saying needs prior authorization, etc etc.. His doc finally gave him oxycodone until he can get the patches and it does wonders. That, with his coffee, and hes finally not hurting and energized. Hoping they refil the pills.. but im doubtful. Will let you know how his apt. on 23rd goes!

Quoting jdouglas111:

Where are you at that there is a lupus center?  That sounds like a great resource! Let us know how it goes!

 

The op may not want to take the meds until absolutely necessary which is understandable.  We each have our own brand of lupus and each need our own types of treatments.  It's one of the bitches about the disease.  No two cases are identical. 

Now about diet...I have heard that diet can help tons and tons!  As soon as my DS is able to eat a variety of foods I want to switch us over to an all vegan diet to see if it helps.  My aunt did it, she has a number of auto immune disorders and her health has been a lot better since the change!  Good luck with the diet and let us know what you think!  

Quoting JDmommyJD:

 You can say that all you want. But until you experience crippling pain you dont know what you will do. My husband HATES taking pills. Deeply hates. But hes at a stage he has no choice. Unless of course he wants to lay in bed all day in agony. Every night he takes 9 pills. He would love to quit them, but the pain would consume him. We found a special lupus center the other day and I just got him an apt. for the 23rd (this month). Hoping for good things.

Quoting oldfashionSAHM:

i refuse to take big pharma meds.  

 


 

jdouglas111
by Member on Jul. 13, 2012 at 6:24 PM

I know how you feel, I'm one of the 9 pills a night people too...well actually 8 and two in the morning.  My parents are always like you shouldn't be on that many pills...I absolutly hate it and I tend to get offended easily normally about the issue too. But at the same time I know people who have controlled their illness with their diet and exercise and I am super impressed with them.

And I HATE fighting with the insurance companies.  I've had to do it so much, hopefully they can get it straightened out and get him his meds approved soon.  The insurance companyies are the biggest jerks.  I don't understand how they can just "decide" you don't need something a doctor reccomends. 

Quoting JDmommyJD:

 We live in maryland :) were in harford county but the centers in baltimore.. only about a 45 min drive to get there. True about no two being alike. I just hate seeing him take all those meds and it kinda triggered soemthing i suppose. I didnt mean to offend the OP if thats what it sounds like. My husband has a hig caffein intake. I told him I read it not being good fro him but he wont give it up. Hes too tired without it. His work is very physical (likening to exercise?) and it makes him hurt worse. His doc called him in butran patches but we keep goign back and forth with insurance for coverage.. keeps saying needs prior authorization, etc etc.. His doc finally gave him oxycodone until he can get the patches and it does wonders. That, with his coffee, and hes finally not hurting and energized. Hoping they refil the pills.. but im doubtful. Will let you know how his apt. on 23rd goes!


Little Lupie Jessica purple ribbon

chickensmommy
by Member on Jul. 15, 2012 at 9:55 PM
I eat a mostly vegan diet and exercise. I get prednisone shots as needed and take mobic. Mind over matter... That is how I approach my lupus.
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oldfashionSAHM
by on Jul. 16, 2012 at 9:25 AM
Sorry if I have offended or upset anyone with my choose of words.

One of the reasons my dad called to let me know is my health seems to be somewhat mirroring his. Years back I did not have allergies now they are getting to be a constant problem, chemical cleaners didn't use to bother me a couple years back my was living with us and cleaning and used soft scrub which I have been around all my life I had to lock myself in my bedroom because I couldn't breath. Now I try and make all my cleaners. There is times. I spend a night coughing and having problems breathing and this can go on for a while. Last time it was almost 2 weeks.

I hope with a diet change, exercises, green tea pills, multi-vitamins, and evening primrose oil pills that I can keep it from getting worse and maybe even reverse it or make it some what dormant.

I didn't think anything about what I said maybe upsetting to some people. I just figure that I could get some insights about what could be some trigger foods. And find out what has and has not worked for others. I know everyone is different but figure I could get ideas of things to try.

I am really really sorry if I stepped on sore toes. That was NOT what I meant to do.
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