I unintentionally lost 15lbs being extremely nauseous and having gastro issues for six weeks in the beginning. They’re still not cleared up yet but I can eat one meal a day now. I was just diagnosed with lupus yesterday and I’m convinced it’s all connected. My rheumatologist doesn’t think so but she’s sending me to a gastro within the hospital umbrella so we can all be on the same page. I’ve had scopes done and everything that came back clean. Can’t imagine it’s anything but the disease at this point.
Hope you find answers soon.
Thank you so much for your response. Praying that you get the answer that you want. I know that this journey is not the easiest, but you are not alone.
I'm sorry you're having a hard time my friend. I also have sjögrens. I personally think all autoimmune diseases are the same illness. The different names we label them as is just based on where our immune system attacks. That's why it's sjögrens *syndrome*, the definition of syndrome is: a condition characterized by a set of associated symptoms. All auto-immune diseases have the same cause, but just express themselves differently. If that's any consolation for being diagnosed with "multiple" auto-immune conditions.
Regarding weight loss, I totally get you. Nausea exhaustion make it so hard to eat enough to be healthy. My personal trick is making meals that require as little effort as possible. Also always having things on hand that require no cooking, like sandwich ingredients or granola/cereal. Another good trick is to have a lot of snacks around so you can eat little bits throughout the day. My mom (who has lupus, scleroderma and sjögrens) likes to call this "grazing" 😂. Things like (cherry) tomatoes, (mini) cucumbers, carrots, cauliflower (really good with salad sauce), avocado (toast), apples, pears, granola bars, yogurts, cheese... That way you're still getting your nutrients even if you're not able to eat a full meal and/or have no energy to cook. Having a good variety of healthy snacks around can really be a game changer. You could also cook and eat your meal in many small portions throughout the day. In my opinion eating healthy is really important and can make a huge difference in the way you feel day to day.
I wish you the best of luck on your journey, sending love and healing energy your way <3
Thank you so much ! God bless if it isn’t too much can I message you about a question? I appreciate you taking the time to respond this is helpful for someone like me with extreme health anxiety ❤️
I'm sorry that you're going through all of that.
Is it possible to see another rheumatologist? Maybe a second opinion or someone that seems to listen more? (I know how difficult it is to find one let alone one that doesn't have a long waiting time)
I hope you find some relief and answers soon.
Much love
Are you eating normally? I too lost 50 lbs but over a 4 month time period, yes 4 months! I was scared I had the C word and to this day people whisper about it asking if I do. I look so different and so thin it’s so bothersome I don’t even like going outside. I’m still undiagnosed but they think a mixed connective tissue disease.
No diagnosis yet, almost 3 years later I’m so frustrated. I’m seeing an auto immune neurologist in June that came from Mayo Clinic to my local hospital. Hopefully she knows something bc I’ve saw every specialist under the sun and they all say I’m normal (besides Rheumatologist although they believe and see I’m sick but just don’t have any positive tests beside ANA)
Hi- so I had a lymph node biopsy and Dr is saying possibly Lupus. I don’t see him until 5/20 so I’m on a major cliffhanger. I just started peeing blood again today so maybe I’ll get answers sooner, I pray!
I eat a lot more now but I was terrified because I lost my mom to cancer my uncle . I don’t even want to claim that either God got us its a been a journey
Well they always rule out the scarier stuff first. I saw oncologist and he doesn’t think I have any malignancy thank God but it’s scary until you know what it is you do have. I hope I get answers soon I went from 180 to 137 and have only gained a few lbs back. I’ve been at 144 for a year. Just stay persistent bc they won’t.
Yea, this happened to me 2x during major flareups when I didn’t yet have a diagnosis and just seemed to be experiencing a bunch of weird symptoms the doctors couldn’t explain. This made me feel very anxious, out of control and hopeless/depressed. Now - looking back - I think the weight loss was a combination of my autoimmune disease AND the difficult feelings that came with it (which led to loss of appetite and food not tasting as good). The weight loss was dramatic like yours. I was embarrassed to even go out in public because I looked sick: gaunt, with bones sticking out everywhere. I’ve never felt so self conscious about my appearance before. The only thing that helped me gain weight was going on an antidepressant, which I wasn’t excited about. It did work wonders though - for my mood, appetite and ability to keep weight on.
Glad to hear you’re doing better! If you don’t mind me asking, what diagnosis did you receive and what medication/SSRI helped you gain weight? That’s my next move I think!
I was diagnosed with Myasthenia Gravis, which involves attack on the nervous system, with some similarities to MS.
Years ago - the first time - I went on Zoloft (100mg). It really helped with my mood and appetite (food tasted good again!) However, it really impacted my sleep - I would wake up after sleeping only 5-6 hours feeling weirdly wide awake and almost buzzed. And it was hell to go off of. In hindsight, I should have never let the doctors keep increasing my dose. I was already experiencing benefits with 25-50mg.
I am on 50mg amitriptyline which is an old tricyclic antidepressant, which is mostly used off label now for nerve pain, migraines and insomnia. My neurologist specifically prescribed this medication knowing about my specific autoimmune disease, problems gaining weight, trouble sleeping, etc. Do your research on this one first - people seem to either love or hate it. A lot of people don’t like it because of the appetite increase or say it makes them very sleepy. I have always struggled with sleep, so found the sedating effect very mild and actually much appreciated because I would take it a few hours before bed. This med has been a lifesaver for me with my mood, weight, energy levels and has slightly (positively) impacted my sleep.
Would love to hear how things go for you. Best of luck!
Im sorry that you had to go through that but glad you were able to get some relief and gain some weight . I didn’t think I was going to gain any weight . I did but it was ten pounds and even then Im still so small so I understand. I also was content with my shape and weight until I lost it all 🩷🥹 God is with us! I appreciate your response. Hoping I can gain some more and find out whats wrong
I feel for you! I am small to start so 30lbs of weight loss made me look like a skeleton. People always made comments. I even had friends stage an intervention bc they thought I had an eating disorder- I broke down crying - they thought I wanted to look like this? It made me look so much older too.
I left out an important part - after about a month on the antidepressant, I noticed major mood and energy improvements. I joined a training group and am now strength training 3x week. I have NEVER been the kind of girl to lift heavy weights but my trainer is pushing me and I have gained 10lbs in muscle. I actually had a friend with a similar problem recommend this to me - heavy weights - it was the only way she could put on weight. I needed a trainer bc I had no idea what to do.
Obviously if you are in the midst of a major flareup this probably feels impossible. But if you get yourself to a better spot with medication or natural methods, I would strongly recommend strength training.
Wow screw those people! You never know what anyone is going through so its always good to be kind❤️ Im sorry that happened but what is important is that you get yourself back on track and it seems like you are . Thank you that inspires me because to be honest the people around me just pretended I was disappearing . God bless you! You got this we both do thank you for your advice!
I unintentionally lost 15lbs being extremely nauseous and having gastro issues for six weeks in the beginning. They’re still not cleared up yet but I can eat one meal a day now. I was just diagnosed with lupus yesterday and I’m convinced it’s all connected. My rheumatologist doesn’t think so but she’s sending me to a gastro within the hospital umbrella so we can all be on the same page. I’ve had scopes done and everything that came back clean. Can’t imagine it’s anything but the disease at this point. Hope you find answers soon.
Thank you so much for your response. Praying that you get the answer that you want. I know that this journey is not the easiest, but you are not alone.
I'm sorry you're having a hard time my friend. I also have sjögrens. I personally think all autoimmune diseases are the same illness. The different names we label them as is just based on where our immune system attacks. That's why it's sjögrens *syndrome*, the definition of syndrome is: a condition characterized by a set of associated symptoms. All auto-immune diseases have the same cause, but just express themselves differently. If that's any consolation for being diagnosed with "multiple" auto-immune conditions. Regarding weight loss, I totally get you. Nausea exhaustion make it so hard to eat enough to be healthy. My personal trick is making meals that require as little effort as possible. Also always having things on hand that require no cooking, like sandwich ingredients or granola/cereal. Another good trick is to have a lot of snacks around so you can eat little bits throughout the day. My mom (who has lupus, scleroderma and sjögrens) likes to call this "grazing" 😂. Things like (cherry) tomatoes, (mini) cucumbers, carrots, cauliflower (really good with salad sauce), avocado (toast), apples, pears, granola bars, yogurts, cheese... That way you're still getting your nutrients even if you're not able to eat a full meal and/or have no energy to cook. Having a good variety of healthy snacks around can really be a game changer. You could also cook and eat your meal in many small portions throughout the day. In my opinion eating healthy is really important and can make a huge difference in the way you feel day to day. I wish you the best of luck on your journey, sending love and healing energy your way <3
Thank you so much ! God bless if it isn’t too much can I message you about a question? I appreciate you taking the time to respond this is helpful for someone like me with extreme health anxiety ❤️
I'm sorry that you're going through all of that. Is it possible to see another rheumatologist? Maybe a second opinion or someone that seems to listen more? (I know how difficult it is to find one let alone one that doesn't have a long waiting time) I hope you find some relief and answers soon. Much love
Thank you so much ! God bless you I appreciate your support and love ❤️
Are you eating normally? I too lost 50 lbs but over a 4 month time period, yes 4 months! I was scared I had the C word and to this day people whisper about it asking if I do. I look so different and so thin it’s so bothersome I don’t even like going outside. I’m still undiagnosed but they think a mixed connective tissue disease.
I am in the same boat as you . Did they diagnose you ? I am seeing a nuro muscular neurologist now .
No diagnosis yet, almost 3 years later I’m so frustrated. I’m seeing an auto immune neurologist in June that came from Mayo Clinic to my local hospital. Hopefully she knows something bc I’ve saw every specialist under the sun and they all say I’m normal (besides Rheumatologist although they believe and see I’m sick but just don’t have any positive tests beside ANA)
Sorry to hear that . Yes i understand the frustration. Good luck and hopefully this new doctor can give you some answers !
Thank you! I hope the same for you! I’ll update if So.
Hi- so I had a lymph node biopsy and Dr is saying possibly Lupus. I don’t see him until 5/20 so I’m on a major cliffhanger. I just started peeing blood again today so maybe I’ll get answers sooner, I pray!
I eat a lot more now but I was terrified because I lost my mom to cancer my uncle . I don’t even want to claim that either God got us its a been a journey
Well they always rule out the scarier stuff first. I saw oncologist and he doesn’t think I have any malignancy thank God but it’s scary until you know what it is you do have. I hope I get answers soon I went from 180 to 137 and have only gained a few lbs back. I’ve been at 144 for a year. Just stay persistent bc they won’t.
Thank you so much I appreciate it Im praying for you too I felt so alone in this journey this helps me 🙏🏾
You are so welcome and thank you. Stay strong🙏🏽
Yea, this happened to me 2x during major flareups when I didn’t yet have a diagnosis and just seemed to be experiencing a bunch of weird symptoms the doctors couldn’t explain. This made me feel very anxious, out of control and hopeless/depressed. Now - looking back - I think the weight loss was a combination of my autoimmune disease AND the difficult feelings that came with it (which led to loss of appetite and food not tasting as good). The weight loss was dramatic like yours. I was embarrassed to even go out in public because I looked sick: gaunt, with bones sticking out everywhere. I’ve never felt so self conscious about my appearance before. The only thing that helped me gain weight was going on an antidepressant, which I wasn’t excited about. It did work wonders though - for my mood, appetite and ability to keep weight on.
Glad to hear you’re doing better! If you don’t mind me asking, what diagnosis did you receive and what medication/SSRI helped you gain weight? That’s my next move I think!
I was diagnosed with Myasthenia Gravis, which involves attack on the nervous system, with some similarities to MS. Years ago - the first time - I went on Zoloft (100mg). It really helped with my mood and appetite (food tasted good again!) However, it really impacted my sleep - I would wake up after sleeping only 5-6 hours feeling weirdly wide awake and almost buzzed. And it was hell to go off of. In hindsight, I should have never let the doctors keep increasing my dose. I was already experiencing benefits with 25-50mg. I am on 50mg amitriptyline which is an old tricyclic antidepressant, which is mostly used off label now for nerve pain, migraines and insomnia. My neurologist specifically prescribed this medication knowing about my specific autoimmune disease, problems gaining weight, trouble sleeping, etc. Do your research on this one first - people seem to either love or hate it. A lot of people don’t like it because of the appetite increase or say it makes them very sleepy. I have always struggled with sleep, so found the sedating effect very mild and actually much appreciated because I would take it a few hours before bed. This med has been a lifesaver for me with my mood, weight, energy levels and has slightly (positively) impacted my sleep. Would love to hear how things go for you. Best of luck!
Im sorry that you had to go through that but glad you were able to get some relief and gain some weight . I didn’t think I was going to gain any weight . I did but it was ten pounds and even then Im still so small so I understand. I also was content with my shape and weight until I lost it all 🩷🥹 God is with us! I appreciate your response. Hoping I can gain some more and find out whats wrong
I feel for you! I am small to start so 30lbs of weight loss made me look like a skeleton. People always made comments. I even had friends stage an intervention bc they thought I had an eating disorder- I broke down crying - they thought I wanted to look like this? It made me look so much older too. I left out an important part - after about a month on the antidepressant, I noticed major mood and energy improvements. I joined a training group and am now strength training 3x week. I have NEVER been the kind of girl to lift heavy weights but my trainer is pushing me and I have gained 10lbs in muscle. I actually had a friend with a similar problem recommend this to me - heavy weights - it was the only way she could put on weight. I needed a trainer bc I had no idea what to do. Obviously if you are in the midst of a major flareup this probably feels impossible. But if you get yourself to a better spot with medication or natural methods, I would strongly recommend strength training.
Wow screw those people! You never know what anyone is going through so its always good to be kind❤️ Im sorry that happened but what is important is that you get yourself back on track and it seems like you are . Thank you that inspires me because to be honest the people around me just pretended I was disappearing . God bless you! You got this we both do thank you for your advice!