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I’ve always been small all my life but have been gaining weight now since 3 years. Maybe I had lupus for many years, I’m thinking maybe since 30 years because I started to have pain in my hands at 7 years old (the same pain I have now) but only in summer when the weather was hot and humid. I remember having to put my hands in a big bowl of cold water to help the pain. I also had pain in my legs (bone pain which is the same pain I often have now) but I was told back then it was growing pain. I… read more
@A MyLupusTeam Member, That is a very good question which does not actually come with a simple yes or no. You also mentioned weight loss and Lupus so I'll try and help answer both. There is some connections between Lupus and weight gain. One reason is the types of food that is eaten which are high in fat. In that situation, eating low fat meats like fish and chicken, veg, fruits, whole grains and dairy products can help. Another one is whether or not you have a high metabolism which helps burn calories and a low one does not. As steroids are used to treat Lupus that will usually put weight on people. Very rare that people who use steroids do not gain weight and prolonged use of steroids can also cause bone and organ problems. The other options will make us lose weight or gain weight Lupus can affect our appetite and cause us not to want food, which was in my case. So I went from an athletic 16.5 stones (231 pounds) down to 10 stones (140 pounds) in a year and people thought that I was on cocaine, which I wasn't I simply had Lupus and completely lost my appetite for food. The other way we can both gain weight in some people and lose weight in others is one of Lupus's worst friends...Depression. That will make people over eat and put on excess weight or not eat and lose lots of weight. Although the normal thought process is everyone with Lupus is different in reality we are not that different from each other. Some have all symptoms while some have a few but most have depression, joint problems, organ problems, the same medication. I know getting to the gym is difficult at the moment Susie but that wont be for ever. There is a possible way that may help with the weight regarding exercise. It may get you back in the gym too. If you do not already have one, try to get a cycle machine, put it on a low gear so it does not put excess pressure on your joints. Then cycle to work up enough energy to calorie burn, that should help you drop weight and prepare your body for going back to the gym. The other thing is based on what you might be eating, so keep a record of the foods you eat daily. Do that for about a month then you can check if those foods contain high fats or are natural to gaining weight. Give the cycling a try for one month too and see if it helps. Before I went back into the gym, I started training at home first to get my body and mind used to that type of physical exercise again. It may not work but could be worth a go.
@A MyLupusTeam Member Same here. I don’t eat too much and I even tried a diet once for all summer with gym. I was only drinking water and eating salads and vegetables and I lost zero pound 🤦♀️. My boyfriend couldn’t understand that, someone else would have lost at least a couple of pounds..but not me 🤷♀️.
I was very underweight as a child. As an adult I used to weigh 135 pounds. Before and after my divorce I was down to 92 pounds. Several years later my weight went back to 135 pounds. Over time when they tried giving me Lyrica for two weeks, I gained 30 pound in 2 weeks even though it gave me severe diarrhea. They then tried Cymbalta which also gave me severe diarrhea but I also gained another 30 pounds in those 2 weeks. I had a lot of other side effects as well. They found I could not take rx meds in that class of meds. The weight I gained was all in my stomach. I looked like I was 9 months pregnant and still do. The weight has not come off. I joined a gym and worked out. I had a trainer but to no avail. The trainer told me that it had to be a medical issue. I have Hashimotos. My doctor told me that my thyroid was not working at all, but I was already on synthroid. They adjusted my synthroid. The weight is difficult to deal with as I have never been more that 135 pounds until they gave me this kind of meds, but only for a short period of time. I don't know why I gained this much weight and why it did not come back off after they took me off of them. No one has the answer. My doctor says all my other numbers are great. I am disgusted that I cannot get the weight off. I am type 2 Diabetic. I don't each much as I am not to eat more than 60 carbs a meal and no more than 30 carbs for an early evening snack. My husband says he doesn't understand because he sees what I eat. He is type 2 diabetic and eats a lot more than I do and never gains weight. I keep track of what I eat. I cannot do yoga as due to my 8 strokes, I don't have my balance. I tried yoga but fall. My weight is 202, which is far from 135. I am miserable. What do others do????
@A MyLupusTeam Member I take Lyrica which can cause weight gain but I’m taking it since 2013. Stress is constant now since 3.5 years when I started working as a NP in a medical clinic. I was pushed to reach a high number of patients and I managed to reach a little bit more than 500 patients in 3 years, which was good but it cost my health 😢because I became very sick last year in August 2021 and am still not working since that big flare up. I suffer from insomnia since a very long time but in the past years, it was the opposite as I would sleep all the time and was able to fall asleep in less than 5 minutes and could sleep for like 16 hours in a row. I already mentioned it to my NP who follows me as I wanted a prescription for a specific medication to help me lose weight but she refused because she said I’m not obese and not that much overweight.
Hi Susie N,
First of all, my heart goes out to you. I’m very sorry to hear everything that you have experienced and are experiencing with Lupus. For the most part, yes, I have read that Lupus causes weight loss. Personally, I lost weight since my diagnosis. But I have been stable with my weight since February 2021 till now. I believe the cause for it, is due to practicing hot yoga and yoga at home. I know you mentioned something about mobility issues. Back in 2020, I started losing simple mobility and my joints were getting stiff and swollen. For that reason, I started practicing hot yoga and taking turmeric capsules.
Here are a few questions I have for you?
Is there a certain medication that you are taking? I know certain medications can have a side of effect of gaining weight.
With what is happening to your body, are you experiencing more stress? Stress can also play a role.
Are you sleeping well? If there is anything we need is sleep and rest. I know when times are stressful and especially if our bodies are doing things out of our control, it can be very difficult to get adequate sleep.
Lastly, have you talked to your doctors about your concerns? Or even expressing yourself via patient portal messaging (if it is available to you)?
Overall, I know living with Lupus is not easy and there can be a lot of uncertainty with what happens to our bodies. Everyone’s experience with Lupus is different. I hope things get better for you and I will pray for you.
Kind regards,
Yaritza
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