Hello lovely people. Ive finally been properly diagnosed with Sjogren's syndrome, gastroparesis and small nerve fiber neuropathy. I was working on losing weight and was using FB along with a body builder to help with Macros and small changes to my meal plans.I was working out 6 days a week and truly enjoyed it .I'm 5.2 and at that time I was 169 and working on losing that extra weight. Then my life tirned upside down. The fatigue hits and you can not fight through that. I was losing weight just laying in my chair under a blanket and didn't even notice it. To mske a long story short between all the diagnosis I am now down to 124 and still losing. It's so hard to eat when you don't feel hungry at all. Which is where the gastroparesis comes in. I've decided to to at least eat breakfast. This morning I scrambled 1 egg with cheese, whole wheat toast ,which is a no no with GP and a 1/4 of an avacado. With gastroparesis you are so limited on what you can eat that Im just not happy. When I say I was getting less than 300 calories a day I mean it. There were days when I ate nothing at all because it is extremely hard to eat when you don't feel hunger. Our bodies need to feel hunger in order to know what we want or need. The cruel thing about gastroparesis is you still crave food that you can't eat. I am down to a weight that actually what I should weigh but I am trying to add food slowly because even if I could eat anything I want it would make me gain weight ro fast. Liquids are alot easier for me so I use v8 juice. Ive tried those protein shakes and those things are just plain disgusting. When healthy people eat their food moves through their system at 90%. My study showed that after 4 hrs the egg and part of some toast had taken 40% to so it makes you not really want anything after you eat anything. My body can only handle a out a cup or so of food right now. Im working with a nutritionist to slowly work food back in my life. 600 calories a day is my goal for right now. Then we will add slightly more food. There is a women in my group that was a body builder and now her body will only allow her 1200 calories a day or she pays dearly for it. We have intermittent vomiting with gastroparesis and the Sjogren's and you never know when it will hit. The fatigue is horrible. There is tired and then there is fatigue. You can not fight fatigue but if you are tired you can ,most of the time, fight through that. With Sjogren's people like to think it's just a dry eye and dry mouth. It's so much worse than that. I truly wish it was just that.
To add salt to the wound I am not supposed ro eat fresh fruits ,veggies or berries. Everything you have been told to eat your whole life is now bad because of the gastroparesis. Soup sis something I can eat and it doesn't bother me. Trust when I tell you that my body let's le know when I've eaten too much of something or something it diesnt like. Taco bell will never be eaten again due to my body completely and miserably letting me know that I made a awful error in choice of food. I want to exercise again but it's so hard when you don't have enough fuel to be able to exercise. Ive added a few things like resistance band and stretching/yoga to my calendar. I really miss working out. Plus a couple weeks ago I had what they call the Sjogren's flair. I woke up at 3 am crying because every muscle and joint in my body felt like they were on fire. It's awful and hope no one here deals with that.
Im not a meat eater but protein is something that is high priority. I am not much of a meat eater but I can get protein from other sources like daisy cottage cheese ,greek yogurt, eggs. Im not a peanut butter fan though I have found my body craves it sometimes and I think it's because of the very small amount of protein it has. Nuts of any kind is a no no with GP . Im trying different foods to see what makes my stomach cramp or get rid of. I love fruit smoothie bowls and we are supposed to watch berries or fruit with skins on them. They haven't bothered me before so I don't think those are a problem. We hsve to watch our fiber intake so I read alot of tables. Did you know that pickles are loaded with fiber? I adore pickles but csn no longer enjoy a whole jar of my husband's pickles that he cans every year. So I guess one or two will have to be enough. Cheese is limited. Low fat cheese is what we are allowed. I have feelings about that. And low fat butter. Yuck. If anyone had any other protein sources I would greatly appreciate it. Ive looked at the meal plans but they have too much food for me right now.
I love you all and hope you guys can help me. I want to keep what muscle I have and maybe build on it eventually.
Diagnosis
Hello lovely people. Ive finally been properly diagnosed with Sjogren's syndrome, gastroparesis and small nerve fiber neuropathy. I was working on losing weight and was using FB along with a body builder to help with Macros and small changes to my meal plans.I was working out 6 days a week and truly enjoyed it .I'm 5.2 and at that time I was 169 and working on losing that extra weight. Then my life tirned upside down. The fatigue hits and you can not fight through that. I was losing weight just laying in my chair under a blanket and didn't even notice it. To mske a long story short between all the diagnosis I am now down to 124 and still losing. It's so hard to eat when you don't feel hungry at all. Which is where the gastroparesis comes in. I've decided to to at least eat breakfast. This morning I scrambled 1 egg with cheese, whole wheat toast ,which is a no no with GP and a 1/4 of an avacado. With gastroparesis you are so limited on what you can eat that Im just not happy. When I say I was getting less than 300 calories a day I mean it. There were days when I ate nothing at all because it is extremely hard to eat when you don't feel hunger. Our bodies need to feel hunger in order to know what we want or need. The cruel thing about gastroparesis is you still crave food that you can't eat. I am down to a weight that actually what I should weigh but I am trying to add food slowly because even if I could eat anything I want it would make me gain weight ro fast. Liquids are alot easier for me so I use v8 juice. Ive tried those protein shakes and those things are just plain disgusting. When healthy people eat their food moves through their system at 90%. My study showed that after 4 hrs the egg and part of some toast had taken 40% to so it makes you not really want anything after you eat anything. My body can only handle a out a cup or so of food right now. Im working with a nutritionist to slowly work food back in my life. 600 calories a day is my goal for right now. Then we will add slightly more food. There is a women in my group that was a body builder and now her body will only allow her 1200 calories a day or she pays dearly for it. We have intermittent vomiting with gastroparesis and the Sjogren's and you never know when it will hit. The fatigue is horrible. There is tired and then there is fatigue. You can not fight fatigue but if you are tired you can ,most of the time, fight through that. With Sjogren's people like to think it's just a dry eye and dry mouth. It's so much worse than that. I truly wish it was just that.
To add salt to the wound I am not supposed ro eat fresh fruits ,veggies or berries. Everything you have been told to eat your whole life is now bad because of the gastroparesis. Soup sis something I can eat and it doesn't bother me. Trust when I tell you that my body let's le know when I've eaten too much of something or something it diesnt like. Taco bell will never be eaten again due to my body completely and miserably letting me know that I made a awful error in choice of food. I want to exercise again but it's so hard when you don't have enough fuel to be able to exercise. Ive added a few things like resistance band and stretching/yoga to my calendar. I really miss working out. Plus a couple weeks ago I had what they call the Sjogren's flair. I woke up at 3 am crying because every muscle and joint in my body felt like they were on fire. It's awful and hope no one here deals with that.
Im not a meat eater but protein is something that is high priority. I am not much of a meat eater but I can get protein from other sources like daisy cottage cheese ,greek yogurt, eggs. Im not a peanut butter fan though I have found my body craves it sometimes and I think it's because of the very small amount of protein it has. Nuts of any kind is a no no with GP . Im trying different foods to see what makes my stomach cramp or get rid of. I love fruit smoothie bowls and we are supposed to watch berries or fruit with skins on them. They haven't bothered me before so I don't think those are a problem. We hsve to watch our fiber intake so I read alot of tables. Did you know that pickles are loaded with fiber? I adore pickles but csn no longer enjoy a whole jar of my husband's pickles that he cans every year. So I guess one or two will have to be enough. Cheese is limited. Low fat cheese is what we are allowed. I have feelings about that. And low fat butter. Yuck. If anyone had any other protein sources I would greatly appreciate it. Ive looked at the meal plans but they have too much food for me right now.
I love you all and hope you guys can help me. I want to keep what muscle I have and maybe build on it eventually.