1. < Autoimmune Diseases

Looking for the best lifestyle changes to reduce symptoms

Posted by csec01 @csec01, May 19 7:21pm

Hi, everyone! My name is Secoyia and I am a 27 year old female. I was diagnosed 2 years ago with Fibromyalgia and MCTD after 15+ years of living with pain & symptoms. My bloodwork was a perfect example of what it needed to show for a diagnosis so I know it is correct.

I don’t have a lot of support and it’s hard to find people who take it seriously and that they are true illnesses. My main thing I am seeking is things I can do to improve my health and decrease my symptoms. I have found a few things that I know exacerbate my symptoms but I’m not having much luck elsewhere. I would rather not go down the route of medication if possible.

Thank you all in advance

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csec01 | @csec01 | May 29 10:45am
In reply to @artemis1886 "Due away with caffeine and all sugar. Fruits okay processed sugar causes more pain and so..." + (show)
@artemis1886

Due away with caffeine and all sugar. Fruits okay processed sugar causes more pain and so does the caffeine. I drink caffeine in a lot of pain.

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Gluten and sugar are getting cut out next week and I am hoping to see positive results from that! Thank you!

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2 replies
csec01 | @csec01 | May 29 10:47am
In reply to @ebero "Look up the Auto Immune Protocol Diet online. I followed it for 60 days and afterwards..." + (show)
@ebero

Look up the Auto Immune Protocol Diet online. I followed it for 60 days and afterwards found that sugar was a main trigger for my inflammation and symptoms of fatigue, leg cramps and numbness. Good luck to you! Keep us informed as you seek answers on your health journey.

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Ooh! I absolutely will! Thank you 😊

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artemis1886 | @artemis1886 | May 30 12:52am
In reply to @csec01 "Gluten and sugar are getting cut out next week and I am hoping to see positive..." + (show)
@csec01

Gluten and sugar are getting cut out next week and I am hoping to see positive results from that! Thank you!

Jump to this post

I use Eziekel bread in the frozen section is what the dietitian recommends. I only eat it with sandwiches. Which is not often.
My main triggers pizza, caffeine and sugar. Eggplant increases inflammation. Broccoli and cauliflower is hard on the thyroid. My family loves cakes and pies it kills me if I eat any of it. By kill me I mean my pain is horribly increased not worth 24 hours of pain.

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covidstinks2023 | @covidstinks2023 | Jun 4 7:33pm
In reply to @csec01 "I have and she agreed with me that medication isn’t the right route for me. We..." + (show)
@csec01

I have and she agreed with me that medication isn’t the right route for me. We tried hydroxycloroquine but I didn’t care for it after a few months so we stopped it. I will check with a pharmacist though! That’s a good suggestion. Thank you!

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I couldn't take that one either.....weird ice pick headaches while taking it.

Praying for you. Blessings to you....

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pink lady | @pinktummy | Jun 6 4:38pm
In reply to @csec01 "Thank you very much for your response! I actually had Covid 4 times and each time..." + (show)
@csec01

Thank you very much for your response! I actually had Covid 4 times and each time was terrible. I did not get the vaccines. I have always been somewhat immunocompromised but didn’t think the risks were worth it as I have had bad reactions to the Flu vaccine and others as well.

I have been taking Vitamin B12 and magnesium supplements but I personally have not had any improvement in my symptoms even though everyone I know swears by it🫠

Cutting sugar and gluten both are my next steps at this point but I’m not sure how to go about identifying the ingredients and also what to replace them with for certain staple foods.

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I also have Lupus in addition and
monk fruit is a sugar replacement that you can use 1:1 ratio, for everyday things like in your cereal, and for use in dessert and other recipes. You should be able to find it at your local grocery store, although it is usually cheaper at Wal-Mart.

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1 reply
artemis1886 | @artemis1886 | Jun 6 11:24pm
In reply to @csec01 "I have and she agreed with me that medication isn’t the right route for me. We..." + (show)
@csec01

I have and she agreed with me that medication isn’t the right route for me. We tried hydroxycloroquine but I didn’t care for it after a few months so we stopped it. I will check with a pharmacist though! That’s a good suggestion. Thank you!

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Can you tell me what happened when you took hydroxychloroquine? I have over 50 drug allergies and was given four different medications for RA to look at trying and that’s one of them. One is automatically denied since I have a sulfa allergy.

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1 reply
kayabbott | @kayabbott | Jun 7 6:56am

I have a few autoimmune diseases, but not MCTD or fibromyalgia. I avoid all gluten (celiac), NSAIDs and most legumes (collagenous colitis), minimal processed foods, and my diet is similar to a FODMAP one. I have been on a low sugar diet for years and you get so used to it that the sugar in a bakery cookie slaps your mouth around. Most of these changes were doctor suggestions and based on a food log that I've kept for years. As others have mentioned, dealing with stress, getting enough sleep, and exercise are important. If you have PEM from long covid, then as much exercise as you can tolerate with rest breaks is good.

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celia16 | @celia16 | Jun 7 9:19am

I’ll just add that getting a good night’s sleep can do wonders. Last night, I got the best night’s sleep that I’ve had in a year! It feels amazing! I suspect I know why, but I’m waiting a bit before I make that conclusion.

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stevecando54 | @stevecando54 | Jun 7 4:51pm
In reply to @csec01 "Gluten and sugar are getting cut out next week and I am hoping to see positive..." + (show)
@csec01

Gluten and sugar are getting cut out next week and I am hoping to see positive results from that! Thank you!

Jump to this post

they have an app you can get on your phone to check if gluten free. I have Celiac and the app is very helpful when out shopping to scan if product has gluten, Best to you

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leannestork | @leannestork | Jun 8 7:36pm
In reply to @pinktummy "I also have Lupus in addition and monk fruit is a sugar replacement that you can..." + (show)
@pinktummy

I also have Lupus in addition and
monk fruit is a sugar replacement that you can use 1:1 ratio, for everyday things like in your cereal, and for use in dessert and other recipes. You should be able to find it at your local grocery store, although it is usually cheaper at Wal-Mart.

Jump to this post

Hi there.... I also have Lupus and Fibro... I was wondering what foods you avoid. I don't add sugar to anything but the Aldi Mocha Satchet i have in the morning has 6gms of sugar per 100ml.. I halve the satchet so i get 2 smaller cuppa's . Thanks so much for your time ... have a great day

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