My name is Jennifer Flores. I was diagnosed in Spring of 2017. Along with Lupus I dealing with diabetes and chronic pain from a degenerative back disease that has required three back surgeries. Between the Lupus and the chronic back pain it has been a real struggle. Prior to being diagnosed with lupus and the back disease I was a very active person. Always on the go. Now it is a struggle to get through a day sometimes. My Rheumatologist has my on plaquenil and Imuran. Even with that treatment I still experience flares when I’m in the sun or out in the heat. I discovered stress is a big enemies to Lupus. Just recently I’ve been experience knee, hip and ankle pain. No one I know has Lupus and some of my family dont understand. I dont look sick so it cant be that bad. How do I accept this? I miss the way i used to be.
I totally understand!! I was a runner, a cyclist, did yoga twice a week along with keeping up with work and a very busy young daughter. Now I seem to struggle to get off the couch. I feel exhausted all the time and although I eat healthy and very little I seem to be putting weight on like crazy. I went from a size 2 to a size 12 in six weeks. If you ever need to vent please reach out. I totally understand!!
I have lupus/fibromyalgia, thyroid/hashimoto’s, degenerative disk disease,rosacea, prolapse bladder, rectocele, anxiety,depression, ibs probably everything else under the sun.
I take 200 mg of savella, 200 hydroxychloroquine both twice a day, np thyroid medication 60mg.I found something that helps my symptoms at 100% which is natural path supernatural cbd drops. 1000 mg. You can only get this kind at a dispensary that sells marijuana. This has a low dose of thc in it. I just recently had to take a drug test and it never showed. This cbd oil will not make you high. But you have to have your medical card for it. These are the only things i take. The cbd oil have literally changed my life. I live in mountain home Arkansas so i don’t know if your state has a dispensary yet but if you can get your medical marijuana card it’s worth a shot. I am actually living my life again and it’s amazing. Good luck ladies and god bless.
I have Lupus, Sjogren’s Syndrome, and RA. My first bit of advice is try not to dwell on the person you used to be, and concentrate on the person you want to be.
I have found accupuncture, massage, and tumeric supplements to be invaluable in coping with my symptoms. I also use a parasol whenever I have to be in the sun, and have been spending a lot of time star-gazing (outside and no sun!). Ice packs can help with the pain.
No one except you knows how you feel. Don’t let anyone tell you that you are over-reacting. And remember, when you have a flare, and you feel like you aren’t doing “anything” - you are! You are resting, and that is exactly what you should be doing!
@Wendee and @jlflores welcome to L2LWL! We’re glad that you found us, and we hope that you will be too.
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All the best to you
Seenie from ModSuport
I am sorry, your are facing many struggles and without support it makes that much more difficult. I have lived with Lupus around 30 years and each day is a struggle to get up and get going. My mother has never been supportive, so it is something we just don’t talk about. My dad tries to understand and give me support. My husband was supportive for the most part until he died. My son knows there is something wrong, he talks with me about it but he really doesn’t understand. It is so hard to explain to someone who does not understand. Don’t give up on your family, invite them to go with you to the doctor, get them reading material, don’t be disappointed if they do not respond though. It is tough and most of the time I don’t even talk about it with them.
cellcept has been a game changer for me maybe you can ask if Dr will let you try hope you are feeling better soon
I was just diagnosed with SLE in October of this year and I feel the same way. I find myself dwelling on all my limitations now and feeling like I’m a different person than who I was before. I’ve also gone from a very active lifestyle to needing to be more mindful about what I should and should not do to avoid flares. One thing I find helpful for the pain/inflammation is a tea blend or moringa tea and pomegranate juice with a cinnamon stick steeped in the tea while it’s brewing, plus it’s super yummy. 