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Sarcoidosis? Diet?



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SLIMMERKIWI
SLIMMERKIWI's Photo SparkPoints: (111,906)
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5/30/13 6:13 A



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Only the Spark Coaches can delete a post - we can only edit our own.

TEXBOUND - you are best to talk with your Doctors re the exercise.

I wish you both well in your journey - may it be a safe, and happy one! Remember that your condition is a serious medical one and your Doctors are always the ones to advise you on what is safe for you, and what is best left alone.

Good luck,
Kris



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I am not a Dr - please check with your qualified Health Professional for a diagnosis and treatment plan


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PRPLPASSION
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5/30/13 5:13 A

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somehow it posted several times, I don't know how to delete it.

Edited by: PRPLPASSION at: 5/30/2013 (05:16)

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PRPLPASSION
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5/30/13 5:12 A

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please delete Posted too many times.

Edited by: PRPLPASSION at: 5/30/2013 (05:16)

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PRPLPASSION
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5/30/13 5:06 A

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Hi,
I am glad I looked this up again. I knew I wasn't alone with this health and weight struggle. I too have been diagnosed with this nasty auto-immune disease. After struggling for so many years, almost dying twice in the past 2 years, I finally said enough is enough and put everything on the table, while in one of my many hospital stays, and said let figure this out. The rheumatologist finally started putting things together and I had the biopsy done, and was diagnosed this past October 2012. I also have life long bad asthma that I have been dealing with as well. So my lungs are really bad. The steroids I have been on for well over a year at different doses and can't seem to get lower than 30 mgs without ending back in the hospital. I have to be careful with exercise, due to the fact if I stress my lungs they shut down on me. So between that and the steroids the weight has been packing on. When the scale almost tipped at 300 I knew something had to be done. So I reconnected here hoping to find others in similar situation as me for support.

I have been a long standing member, but only now due to my health and I extremely motivated to get this weight off despite the steroids and my lungs. I need to get myself healthy, so I can sleep better and breath better. I have had back surgery already due to a ruptured disc 2 years ago which lead to a blood clot in my lung. Then to the first of a few diagnosis that I have now have. I know I have to lose the weight, its just a matter of how. I have changed my diet and that has helped. I have gotten a stabilizer floor ball and 3 & 5 lbs weights. I am motivated and now equipped, just need some support I guess. Hence why I am here. Thank you for reading this and please feel free to add me I need more friends for this journey.
Aereana.



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TEXBOUND
Posts: 2
5/15/13 3:10 P

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I have sarc in my lungs since approx 2006, with no symptoms until this past year. My Pulmonologist is playing with the amount of prednisone, anywhere from 10-30 mg daily, trying to get me back in remission, or at least stable. I am a 40 year old mother of two. I have been participating in boot camp type exercise for about a year as well. It is very vigorous. Is this too strenuous? Could it be causing the flare ups?



GEEKYGARRET
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1/8/13 2:39 A

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Hello fellow sarcoidosis suffers...
First off I am so glad that I plugged back into sparkpeople thank goodness for this site.

I have suffered for the last 5+ years with this wonderful Auto-Immune disorder known as Sarcoidosis and let me tell you it truly bites! I spend at least half my month every month at the Mayo Clinic in Minnesota working with a great bunch of doctors, nurses and dietitians. I have been diagnosed with this disorder affecting my lungs, liver and kidneys. I just got out of the hospital last week after having my kidneys go into failure again, which seems to happen like once every year to year and a half. I freaking feel like a yo-yo pretty much all the time with this disorder on top of all my other medical issues. However I am very thankful and blessed to be on this planet and be able to deal with this. I wouldn't wish this disorder on my worst enemy.

I am just looking to find support from others who suffer the same affliction and share ideas and tips on how to better cope with this crazy, crazy disorder. I was reading other posts here and it seems our struggles vary but are all caused by this nasty beast which I do agree isn't widely understood by the medical profession. I get so frustrated with how it affects me on an everyday basis with my kidneys, joints, asthma and so on. I am still looking to find the right foods to eat and foods to help in reducing inflammation. I hate taking Prednisone as it really adds weight to my body plus the other 20 or so medications I have to take just to keep going...

There has got to be something one can do or eat that isn't a medication that can help. I welcome all thoughts and suggestions and look forward to sharing in your journey with this disorder.

Thanks,

Biggarret101



REDDING2012
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9/19/12 1:10 P

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I am saroid patient myself since "2004" I am now on my fifth flare-up and I have to say each time they get worse and they last longer. The last one was "2010" I am back on the predisone and methoxrate (not spelled correctly) and I have had thryoid cancer so take thyroid med's daily. Mine started in my lungs and now is multi-organ, liver, spleen, bones, lungs just had a head MRI which was okay per the doctor. My lungs are starting to show sarcoid tissue thru out the lungs, I have one single nodule that is growing get this rechecked in one week. I am tired all the time, hurt and just am not myself anymore. I started doing a little research as I know there has to be a way to relieve some of things pains and aches so that we can live life better. I get sick to my stomach when I eat most of the time, but I eat just to be eating I think that comes from the medicine. I have come upon issues regarding diet...I never knew there were foods we should not eat. I always thought it was just me that could not handle red meats, pork, dairy....And I love my cheese....If anyone can give me samples of meals or a list of foods I would really appreciate any suggestions or guidance. Thank you, At The End of My Rope....

Edited by: REDDING2012 at: 9/19/2012 (13:13)


SHARPISTOL
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5/19/12 7:20 P

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I just joined Sparkpeople on May 8, 2012. I have CNS Sarcoidosis, the worst one that you can have. Mine attacked my brain; why they say I have Central Nervous System (CNS) Sarcoidosis. Mine is supposed to be in remission, at this time. I was diagnosed in May, 2000. Since then, I had 4 strokes, by 2004; and, then, a heart attack, in 2007 (2 days before I was to drive my daughter to her first year of College, in another State, about 12 hours from where I lived). I thank God everyday, that my heart attack did not occur with me behind the wheel of a car; and that I did not injure, or kill, anyone! My doctors stated that all of the attacks, were caused by the Sarcoidosis, cutting off blood flow, to the organs, affected. Anyway, my doctors did explain to me, that 90% of the time, Sarcoidosis, or Sarcoid, attack the lungs, and 10% the one of the other organs, or more, in the body. When I hear of other people, that are worse off than me; I am, constantly, reminded to stop feeling sorry for myself, and to Thank God, and to pray for them, and their health, and/or recovery. God Bless You! I just want you to know that you are not alone, in dealing with this disease, on SparkPeople.

P.S. I am just going to copy and paste this message. I am lazy and do not want to write all of this, again! lol emoticon

emoticon

Edited by: SHARPISTOL at: 5/19/2012 (20:01)
#Bear Luv and Bear Hugz!


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BBIGGS65
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9/11/11 9:23 P

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I'm newly diagnosed sarcoid also - From all the research I've done it seems to be a rare condition which few in the medical field are specialized enough to treat. The sarcoidosis foundation for research has a great forum with lots of information.
Diet: Some folks swear by an anti-inflammatory diet, a few go gluten free. It's very important to have a handle on your vit D and your intake (as well as sun exposure) as large amounts can exacerbate your problem. I can't say I've noticed a huge difference with diet although I'm sure anti-inflammatory makes sense considering the nature of the disease. What I can tell you is what doesn't help; Stress, lack of sleep (hard with new baby I know), heat and sun exposure. Mine is pretty advanced and incapacitating, so I'm glad to hear you are doing well. Most folks recover from this and never have another bout so this is good news. Good luck with your new baby - she is so cute!



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TESTACAV
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4/28/11 9:25 A

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Thanks!



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SPARK_COACH_JEN
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4/28/11 9:11 A

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You might want to ask your doctor for a referral to see a registered dietitian. That person can help create a meal plan specific to your needs.

Hope that helps,

Coach Jen

"You may have a fresh start any moment you choose, for this thing that we call "failure" is not the falling down but the staying down." Mary Pickford


TESTACAV
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4/28/11 8:12 A

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Hi All!!

Haven't posted in ages, had a baby and it takes up alot of my free time :) lol

Anyhow, long story short the day prior to having my baby I ended up in hospital becuause of coughing up a small amount of blood. Fast forward to 2 weeks ago, I was told I have Sarcoidosis, which is a disease that results from a specific type of inflammation of tissues of the body. It can appear in almost any body organ, but it starts most often in the lungs or lymph nodes. I feel great otherwise, no symptoms etc. (better than being told I have a blood cancer...pweff!)

ANYHOW, what I wanted to know was if anyone else out there has the same, and could share what diet or meal plan you follow to help with this?

Thanks guys!emoticonemoticon



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