I hope everyone is well. I have been discouraged lately. I can't seem to lose the weight I gained since being diagnosed with Lupus SLE. Before I became sick, I was cycling 60 km every other day and playing competitive soccer. I was lean and fit.
Now I feel so unattractive. I am journalling what I am eating and now able to go for daily walks. We purchased a Bernese Mountain dog last summer, and emotionally he has been a saviour to me.
I think with the constant off and on Prednisone hasn't helped. I am now lyrics for the neuropathic pain, plaquenil, and Methotrexate 20mg once per week.
Has anyone had a sudden onset of one sided arm numbness/discomfort. This started just over a month ago in my left arm. Its bizarre actually, and it is quite uncomfortable. I just had an MRI on Friday awaiting results.
Haven't been on the website for a while, and I am totally needing to chat. Its really hard for people to understand the trials and tribulations of the disease unless they are actually living with it. Plus I don't want to burden anyone with this disease.
I totally know how you feel. Before this flare I was really active, lean, and very fit. Since this flare started 3 years ago I have gained 30 lbs. and have watched my once very fit body turn to mush. I’m 5’8" and used to weigh around 125 now I’m 155 and no matter how little I eat I can’t get the weight off. Exercise has to wait until we find a drug that puts me in remission. I refuse to take prednisone and my rheumy agrees. Rituxan only helps for about 2 months and then I’m right back where I started. I started cellcept but the side effects were keeping me flat in bed, like a horrible hangover combined with the flu and morning sickness, totally wretched. I also get the pain and numbness in my left arm. It’s from inflammation in my neck combined with a bulging disc compressing the nerves. It makes it hard to drive at times. I’m getting very tired of having no energy and not being able to do things. I’ve had lupus, sjogren’s, fibro, vasculitis, raynaud’s etc… Since I was a child so I do my best to adapt to everything they throw my way but the weight gain and muscle atrophy has really gotten to me. I hate looking in the mirror. I feel bad even mentioning it to my doctor because it’s such a minor thing compared to everuthing else but it really bothers me. Sorry this is so long but you hit a very sore spot with your post. I hope you will be able to get fit again soon. Gentle hugs, Annemarie
Sorry to hear the frustration of your post. I have had dramatic weight gain over my 20 yrs of being sick. Started out extremely thin. Plaquenil will put on weight for sure. Prednisone doesn’t help either. But one thing I just learned is about diet. I would go on a diet and put on weight. One time I gained 30 lbs. Found out fr dr that the things I was eating, some of fruits and vegetables were acting opposite and putting on the weight. When I cut out bananas, oranges and citrus, corn, peas, potatoes, I lost twenty lbs. I also took probiotics which helps digest better but also made me lose weight. Nothing I had done before worked. Get a good quality probiotic with known good shelf life where bacteria won’t die off. I happen to use renew life but you can research other good ones.
I also have numbness in arms and legs mostly right sided. Have to constantly turn over different sides when sleeping cause both sides go numb. Not much can be done. MRI will tell you if everything else can be ruled out. Hope things get better for you
It is hard to watch changes occurring in our bodies and not be sure what to do about it. You said that "it's such a minor thing compared to everything else" but anything that makes us feel bad and affects our emotions will also affect the rest of our bodies and result in worsening of symptoms. I feel that it is major. Finding a doctor who is sympathetic toward your concern with the weight gain would help greatly. Too many doctor, these days, just throw the meds at you and never address the other areas of your life and habits. If you have to go to a separate doctor for that care, do it.
Any measures that you can take that will allow you to reduce your medications is what I would be shooting for. The medications that you mentioned can cause the weight gain and some of it can be in the form of fluid retention. I am a big advocate for consulting a naturopathic physician along with your regular doctor because they check for many other conditions and deficiencies and can be an excellent adjunct to your treatment and, possibly help to reduce your need for rx meds. They are usually more sympathetic too.
Sometimes it's not the quantity of food that we eat, but the types of foods. I don't know what you have tried such as gluten free, anti-inflammatory diet types have definitely worked for me. No sugar, of course, no processed foods, no gmo. Lots of info on this forum about those. But, yes, regular communication with those who truly understand is crucial. It's very emotional to live with autoimmune disease. Devastating would be more like it.
Left arm numbness should be checked out to be sure as you are doing, but also try to think if there is anything that could be putting pressure on your limbs or cervical area. I've had lots of problems and pain in my upper limbs and just to be sure had cardiology workup too. I was fine but you never know. Sometimes it can be something simple like walking your dog with the leash yanking on your arm too much. I'm sixty and if something yanks on any part of my body, it just doesn't tolerate it anymore. :')
Things can get better. I think it is harder for those people who have been extremely active and athletic all their lives and then get blasted with autoimmune disease. I still set little goals for myself and get just as much satisfaction out of reaching the small goals as I used to get from the old activities that I was able to do.
If you pray, don't forget to connect in that way each day. It helps me so much and keeps me at peace and not feeling so alone.
Just to let you girls know ur not in this alone I took adderall and lost 30 and now I put 10 back on it sux I just got diagnosed with neuropathy if u feel numbing in the hands or feet it’s nerve damage I went to school graduated now I’m waiting for back surgery due to L3-5 herniated pinching my nerves making me have numbness and the meds to help that makes u gain weight also!!!
It is comforting to know that I am not alone with my feelings. When I walk by a mirror I cringe and become tearful. I am trying to not to think about it, but its hard not too, when my clothes do not fit, and I see pictures of how I looked 2 years ago. I think as a group we just have draw on each others strengths.
When I visited my Rheumatologist, the arm numbness could be lupus related, side effect of plaquenil or something going on in the brain. Since my increase of methotrexate I am feeling a bit better.
I hope I didn't upset you with my thoughts.
Charmaine
Annemarie said:
I totally know how you feel. Before this flare I was really active, lean, and very fit. Since this flare started 3 years ago I have gained 30 lbs. and have watched my once very fit body turn to mush. I'm 5'8" and used to weigh around 125 now I'm 155 and no matter how little I eat I can't get the weight off. Exercise has to wait until we find a drug that puts me in remission. I refuse to take prednisone and my rheumy agrees. Rituxan only helps for about 2 months and then I'm right back where I started. I started cellcept but the side effects were keeping me flat in bed, like a horrible hangover combined with the flu and morning sickness, totally wretched. I also get the pain and numbness in my left arm. It's from inflammation in my neck combined with a bulging disc compressing the nerves. It makes it hard to drive at times. I'm getting very tired of having no energy and not being able to do things. I've had lupus, sjogren's, fibro, vasculitis, raynaud's etc... Since I was a child so I do my best to adapt to everything they throw my way but the weight gain and muscle atrophy has really gotten to me. I hate looking in the mirror. I feel bad even mentioning it to my doctor because it's such a minor thing compared to everuthing else but it really bothers me. Sorry this is so long but you hit a very sore spot with your post. I hope you will be able to get fit again soon. Gentle hugs, Annemarie
Charmaine, you didn’t upset me at all! I’m glad to know I’m not alone in mourning what I used to look like. I sometimes feel like if I were just tougher mentally I’d be able to go back to my workouts and get back in shape. Like I can somehow ignore the pain and fatigue and reclaim the old me. I think because no one tells me that it’s ok to lay in bed when I’m exhausted that I beat myself up mentally for not getting up and cleaning or whatever. I’m not ok with being a slug so I always think other people must be horrified…lol I think I might try one of the anti inflammatory diets to see if it helps. I gave up most meat years ago because it was trashing my stomach and making me feel worse. I still eat fish, eggs, and occasionally chicken but no red meat. I’ll have to talk to my doctor about it. Feel free to vent anytime. Maybe we can support eachother through this phase. Gentle hugs, Annemarie
I’ve had problems with my stomach for the better part of a year. Had really major issues since November but I put myself on a high fiber diet and I also drink over 64 oz. Of water a day. I do mostly chicken I do my best to eeliminate glutin I decreased dairy not all together but everything in moderation and most of all I take an anti depressant and when I’m feeling anxious I take my zany that’s why it was prescribed. A nurse told me while I was recovering from surgery for an intestinal blockage anxiety and other emotions begin in the stomach. Think about it for a moment where does your anxiety and fear begin ? I know where I feel mine starting. Hope this helps you.
I feel the exact same way. There’s a picture of my daughter and I taken less than 2 yrs ago on my windowsill that I absolutely love. Now I look at it and it makes me sad. I just don’t look like that person anymore or feel like the same person. I used to feel attractive and sexy and now I feel old and fat. Then sometimes when I force myself to get it together and really do my hair and do my makeup nice and put something on other than sweats… I go out shopping or something and walk past a mirror and see the horrible redness on my face that I thought I did a good job of covering and then I just want to go home again. I feel robbed.
I have been up and down with weight since my dx…interestingly the pred tapers i go on periodically kill my appetite. Anyway…dont sweat it…rock what ever body you are wearing today girl!
A recent MRI of my neck turned out to be 2 herniated cervical disks. Since my lupus diagnosis, 15 years ago, I thought the numbness tingling and pain in my arms was from lupus.Then it became serious, stabbing, piercing pain end of September. Took me down for a month. Finally got the diagnosis early October 2013.
The members here helped me make a decision: surgery vs and epidural block. The discussed it with me. I chose the epidural block and I'm feeling so much better. Though, my neck muscles are sore like from a workout when you haven't exercised for awhile.
Yours might be directly or indirectly related to the lupus. I really think that all the my meds, physical condition, the disease, what I eat, my various maladies and the like are all interconnected. Exercise is one of two priorities every day. The other is "eat right."
Let us know the MRI results. Further, ask any question you want. Hope this gets some resolution and your life gets easier.