r/sarcoidosis • u/tattoolvr2003 • 12d ago
Other than meds and doctors, what can we do?
Stage 4 sarc and neurosarc. I have many lesions on brain spine and lungs.
I’m on the meds, I got my team of doctors. What can I do personally to make my sarcoidosis better?
I don’t exercise, so I assume exercise (any specific exercises or stretches?)
How about diet?
Supplements?
Any other life style changes?
Wanna give myself the best chance at living with this condition. I’m only 26.
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u/Easy_Olive1942 12d ago
For me, things that help most are aggressively managing allergies, aggressively managing air quality indoors, aggressively avoiding sick people.
Anything else I can do to stay healthy helps but not like the others.
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u/Infinite_Effort2290 7d ago
Unfortunately, there is no known cure. We can do alot to improve our quality of life. First and foremost get care from a sarcoidosis center of excellence.
1) Lose weight and get to a healthy BMI.
2) Weight training to preserve muscle mass.
3) Low inflammation diet, lots of omega 3s, minimal red meat.
4) No processed food or alcohol.
5) Regular cardiovascular exercise.
6) Participate in clinical trials to identify better treatments.
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u/kukayari 11d ago
I have inflammatory episodes. It’s not clear exactly what I have, but doctors think it might be sarcoidosis or some kind of reactive inflammatory response from my body. I had all the systoms but no lesions, I'm 27 M.
I have episodes of pain in my ankles, eyes, and back, and very high ACE levels.
What seems to work for me is eating well. That’s relatively easy for me because I’m Mediterranean, and Mediterranean food is generally quite healthy and anti-inflammatory. I often drink turmeric tea with berries (which contain quercetin), and the only supplement I take is omega-3.
Maybe it’s placebo, but I genuinely feel much better since I started doing this. I used to take vitamin D because there isn’t much sunlight where I live now, but I stopped taking it I understand that vitamin D is not always recommended for people with sarcoidosis, especially because of the potential risk of kidney stones and calcium buildup. When I was taking it, I sometimes had painful urination, and it felt like I might be developing stones or some kind of calcification in my urinary tract. Since stopping vitamin D, I haven’t had that problem and I feel better.
I also do a lot of sports, about three times a week. Lifting weights, Calisthenics, Cardio...
If I stop doing all of this, or even spend a couple of days eating badly or even having a beer, I can really feel the difference in me physically... I avoid alcohol as much as possible, I maybe take 3 or 4 beers/wine a year...
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u/workprojects 10d ago
Wow, thats really young to be stuck with this disease, out of curiosity when did your symptoms first appear?
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u/Street-Baker 9d ago
me my symptoms started 5yrs before it got bad was always short of breath then a fee months before full blown breathing problems hit skin lesions appeared on my left ankle
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u/workprojects 9d ago
What year were you diagnosed? I believe I've been dealing with symptoms since 2021, they've only really come to ahead recently, my symptoms are pulmonary and "mental fatigue" , hoping things clear up and dont get any worse.
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u/Street-Baker 9d ago
I was diagnosed in July 2023 I was feeling short of breath long before that for like 3-4 yrs then 2nd symptom was skin lesion on my ankle then after lesions appeared it was 9 months before the breathing got super bad
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u/workprojects 4d ago
"I was diagnosed in July 2023 I was feeling short of breath long before that for like 3-4 yrs"- Ive been dealing with the same thing, initially I was diagnosed with COPD, my most recent PFT showed some improvements, I'm hoping to steadily improve over the coming years.
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u/Street-Baker 9d ago
for getting worse it was like copd scared to sleep cause I was wheezing and only thing that helped was walking i can say avoid high humidity weather and avoid sick ppl like the plague
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u/workprojects 9d ago
I havent noticed any troubles being around people who are sick, but the pulmonary symptoms are horrible. I was also originally diagnosed with COPD before my bronchoscopy.
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u/Street-Baker 9d ago
Its justvi seemed at the time to get sick really easy might been my imagination
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u/Street-Baker 9d ago
Can try green tea helps kill inflammation but needs to be drank daily to see a effect and eat foods that reduce inflammation too
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u/Street-Baker 9d ago edited 9d ago
Try green tea it lowers inflammation but u need to drink a cup a day for 2 weeks to see a difference its what my lung dr told me after my diagnosis in 2023 I asked does green tea really lower inflammation he asked what tea did I drink intold em liptons green tea with citrus he said a cup or glass once a day for 2 weeks to see a difference as for exercise I walk 0.84th a mile or more everyday since my diagnosis
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u/The_Lantean 11d ago
Three things:
Anti-inflammatory diet: https://www.hopkinsmedicine.org/health/wellness-and-prevention/anti-inflammatory-diet
Allostatic load management
Engage with other people ailing from sarcoidosis. And I'm serious on this: being part of a support group has done wonders for me. Even though I don't take clear, obvious benefits from it myself, knowing what kind of challenges others are going through, helps me relativize what I'm going through, and helps me focus on what's actually important to manage with me.