Hi new friends. I was recently diagnosed with Lupus and I am still trying to accept this is happening in my body. Throughout my life I have been an athlete... Lupus has impacted my athletic life drastically. Not only did I have to stop running and lifting weighs, my muscles (when I do go to the gym) take about 3-4 days to recuperate. My nose is constantly running... I had not one but four sinus infections since October. The glands in my neck are constantly swollen. My throat hurts and I have sores on the inside of my cheeks during and after a flare; they don't hurt though. I'm extremely tired and take liquid B-12 under the tongue which seems to help for 5 hours or so.. I get chills from the cold weather, every day is more and more unbearable. It is a project to get myself out of bed in a timely fashion. Two months ago I discovered I can't tolerate beer anymore because it is a trigger.. I get brain fog often and loss my balance more than a dozen times a day. My parents are supportive, my brother said 'this is mental' because I didn't know I could do this to myself.. like really? Why would I want to deal with any of this? How did this happen to me? I still have a hard time accepting this. I think it is because I have lived 28 years symptom free... and now every day is a surprise, and its doctor after doctor visits.. and it's insurance that doesn't cover something. I'm not ready to be about this life and I cry every day... in the shower, or in my car driving to or from work. Lupus sucks and no one understands unless it happens to them. Not that I want to for reasons of symptoms, but I do look forward to connect and make friends with people from this support group. I definitely need you guys, Happy New Year.
Hi Jeannie, I was diagnosed in 2010. It will take some time for you to adjust to your "new normal". It may take family and friends longer to accept your illness. I know one of my brothers never asks how I'm doing when he calls from out of town, and that really hurts. My other brother to this day thinks that I don't have lupus. LOL He doesn't know the medications I take because he thinks this whole illness thing is some kind of conspiracy! LOL Today, it's funny but other days I cry all the time because my life working as a field engineer is pretty much over.
At any rate, I sincerely hope you find comfort here. I find it here and also in God's Word the Bible.
Thank you so much for replying… I definately found comfort in your reply. Thank you for your kind words and support. I hope you are doing good and i can relate with my career path as well. If you ever need anything i am here for you as well. I hope you have a wonderful new year and thank you again for being so kind.
Autumn said:
Hi Jeannie, I was diagnosed in 2010. It will take some time for you to adjust to your "new normal". It may take family and friends longer to accept your illness. I know one of my brothers never asks how I'm doing when he calls from out of town, and that really hurts. My other brother to this day thinks that I don't have lupus. LOL He doesn't know the medications I take because he thinks this whole illness thing is some kind of conspiracy! LOL Today, it's funny but other days I cry all the time because my life working as a field engineer is pretty much over.
At any rate, I sincerely hope you find comfort here. I find it here and also in God's Word the Bible.
Hi Jeannie. I am an athlete as well. I went through similar symptoms. I lost all my strength. I was just diagnosed in 2013. before that, I had no idea what was always wrong with me. are u on any drugs? I started on Plaquenil…and for the last 4 mos. it’s been a miracle. I’m back to tennis, golf, cycling. I never thought I’d return to my old self…but miracles do happen, so don’t give up. there were days I couldn’t hold my bed up or push a button on my cell phone, I was so fatigued.
Hi Jeannie, I was diagnosed with Lupus in 2001. I was in my mid 20s. It definitely is life changing. I thank god everyday that I have a very supportive husband and family. Living with Lupus doesn’t get any easier but you will learn how to deal with. Pay attention to your body and what triggers flares. Like you, I enjoyed having a few beers on weekends. Then next morning I would wake up feeling horrible. My whole body hurts, swollen, felt like I got ran over. I still enjoy drinking I just try to drink water in between beers lol. It’s important to stay hydrated. My lymph nodes are constantly swollen as well. Don’t over due it. You have to know your limitations. I make the mistake of doing too much when I feel good. Then I pay for it the next day. The hardest thing for me is that you can feel great then in a matter of minutes, that can all change. I still deal with the extreme fatigue on a daily basis. I hate canceling plans last minute due to my health but luckily, my family understands this awful disease. Just know, you are not alone. This support group is great. We are all here for you!
Take care, Teresa
We know exactly how you feel. And up are correct, no one understands it unless they experience it. And in my case that statement is especially true about the doctors treating me. You hang in there and keep as physically active as you are able to be. For me, being as active as I can manage is the best medicine out there. Keep posting. Let us know what’s happening, how you are doing and what’s on your mind.
Hi
Lupus certainly changes your life. When I was first diagnosed 3 1/2 years ago I had to decide if I wanted to sit and cry all day or go one with what was happening. I think I have a great team of dr's that all work together. I , like Imterilo have a very supportive husband and family. As soon as I was diagnosed I'm sure they got informed as to what this disease does to you. I'm sure the kids did the research and told my hubby. Lupies that have family and friends that don't understand need to bring them to a dr visit. I too had the mouth sores but since I was put on plaquenil they are gone. I hope I never have to come off them. Make sure you regularly see an opthamologist if you go on plaquenil. You have to accept what you have. Pay attention to your body. don't overdo because you will pay in the end. We are all in the same boat. We all care. Don't sit and feel sorry for yourself, it won't do you any good.
You are not alone.Take care of yourself.
Cindy
H Jeannie, I was just diagnosed in November. Trust me when I say that it takes time to get the Lupus under control and for you to adjust to it. You will learn that there are just some things that set the Lupus off. I cook a huge Thanksgiving dinner every year for the last 25 years, but this year, literally the week I was diagnosed, I realized that I won't be able to do it without help anymore. I was in excruciating pain for 2 weeks with swollen hands, and to make matters worse, I also was diagnosed with fibromyalgia in June. My husband was very upset with me for continuing to do it all on my own for two days. Needless to say we made home made pizzas and went to the movies for Christmas, so a new tradition as my kids leave the nest (they're all over 16). I hate not being able to do the things go I used to and I'm only 44, but I have to slow it down for my health. I also ta,eat out 12 supplemental vitamins everyday that seems to be a huge help along with the paquenil. Keep your spirits up,its just a new way to live! (((HUGS)))
Stay strong I know what your going through, I’ve had lupus for about 10 years now. Lost family members and my grown adult kids don’t care, losing my job because I call off a lot don’t have fmla, so when I call off then I get taken to the boss office they stress me out and making me sicker, I cry every day so I have sympathy for you stay strong .keep in touch I don’t know what to do?
Jeannie,
Happy 2015. One that will bring you meaningful adjustments to your new "normal."
I have primary lupus and secondary autoimmune hepatitis and Sjogren's. After diagnosis in 2000, I only had to make minor adjustments to keep up with my life--with a job that I loved and a wonderful home in the mountains. Later, I found out that I had all this since I was in my 20s. I'm 67 now
In 2010 every thing changed after a hip replacement that went south. Besides a long recovery, I went into a sustained flare that hasn't stopped since. I am controlled by medication and living a decent life with support from my ex (believe it or not) and a couple friends.
Be vigilant with the medications, especially the prednisone. Most of my challange is from side effects from it and the other drugs. It's keeping me alive, but it's one of the roughest drugs that most of us have to take. Keep up your calcium, vitamin D, magnesium and any other supplements that doc has ordered. Get a periodic bone scan (DEXA) to monitor for osteaporosis. Monitor more than the lupus. Lots of folks here have experienced untoward reactions to the meds.
My biggest challenge is to take it easy on the days I feel good and not to over do it. You'll find your balance.
This site has helped sooo much. These folks are great and pass info that not even the best doctor could know. It keeps you well informed.
You got to hold on.
you will find support here! I was diagnosed 3 years ago and my life is back! I exercise again and I feel good. I think it's the Plaquinil. Things will get better!
USAGURL said:
Jeannie,
Happy 2015. One that will bring you meaningful adjustments to your new "normal."
I have primary lupus and secondary autoimmune hepatitis and Sjogren's. After diagnosis in 2000, I only had to make minor adjustments to keep up with my life--with a job that I loved and a wonderful home in the mountains. Later, I found out that I had all this since I was in my 20s. I'm 67 now
In 2010 every thing changed after a hip replacement that went south. Besides a long recovery, I went into a sustained flare that hasn't stopped since. I am controlled by medication and living a decent life with support from my ex (believe it or not) and a couple friends.
Be vigilant with the medications, especially the prednisone. Most of my challange is from side effects from it and the other drugs. It's keeping me alive, but it's one of the roughest drugs that most of us have to take. Keep up your calcium, vitamin D, magnesium and any other supplements that doc has ordered. Get a periodic bone scan (DEXA) to monitor for osteaporosis. Monitor more than the lupus. Lots of folks here have experienced untoward reactions to the meds.
My biggest challenge is to take it easy on the days I feel good and not to over do it. You'll find your balance.
This site has helped sooo much. These folks are great and pass info that not even the best doctor could know. It keeps you well informed.
You got to hold on.
Hello, Jeanne - I am 65 years old ! Nice to find another person who is older!
Ellen
sweetiepie65 said:
USAGURL said:Jeannie,
Happy 2015. One that will bring you meaningful adjustments to your new "normal."
I have primary lupus and secondary autoimmune hepatitis and Sjogren's. After diagnosis in 2000, I only had to make minor adjustments to keep up with my life--with a job that I loved and a wonderful home in the mountains. Later, I found out that I had all this since I was in my 20s. I'm 67 now
In 2010 every thing changed after a hip replacement that went south. Besides a long recovery, I went into a sustained flare that hasn't stopped since. I am controlled by medication and living a decent life with support from my ex (believe it or not) and a couple friends.
Be vigilant with the medications, especially the prednisone. Most of my challange is from side effects from it and the other drugs. It's keeping me alive, but it's one of the roughest drugs that most of us have to take. Keep up your calcium, vitamin D, magnesium and any other supplements that doc has ordered. Get a periodic bone scan (DEXA) to monitor for osteaporosis. Monitor more than the lupus. Lots of folks here have experienced untoward reactions to the meds.
My biggest challenge is to take it easy on the days I feel good and not to over do it. You'll find your balance.
This site has helped sooo much. These folks are great and pass info that not even the best doctor could know. It keeps you well informed.
You got to hold on.
Hello, Jeanne - I am 65 years old ! Nice to find another person who is older!
Ellen
hi I am so unsure have lesions on my arms and face diagnosed 2, 5 yrs ago and I also saw beer bad for me crazy sad my husband 10 yrs young than me hope for the stars
I don't know compuers very well but I cant figure out how to talk to people
I too am 65. I had active lupus for 8 years before I was diagnosed, but I was pretty sure it was lupus. I was so relieved to be put on plaquenil. It was hard to adjust to until it finally kicked in. Don’t give up, the meds can work miracles, although I have become sicker in the last couple of years, I have had to learn to accept things one day at a time. What you say about a surprise every day is true, and you will learn to be glad for those good days and to not fall apart when it’s a bad day- because the next day could be a good day. Try trying to find three good things every day and write it in a journal at the end of each day, or a different exercise if you know one. I had to learn that every bad day still had goo in it, no matter have trivial. I have learned a lot about about myself, patience, using the tools that make life easier (like a cane) stay with us in the group- we all have been though the fire and we’re still here fighting this crazy illness of a thousand faces. But also, it’s okay to be mad and sad and all the other stages of grief, you have lost a lot of your old life and how you previously saw your life and place in the world. It’s just that only you can dig your was out your sadness etc.
Welcome to the group.....you will find support and very knowledgeable advise here. We can vent, complain, tell good stories, and we all understand each other. We don't judge, we don't find other people's stories odd or anything....we understand. Stay strong, learn as much as you can about Lupus, have your family learn also. If you have a local support group in your area, go....the information and friendships you make will help you tremendously. Good luck, and feel better
U might not wanna hear this but if u cut out dairy it will most likelly vlear the infection forever also zinc helped me i used to get them sinus problems lie evryday goodluck godbless
Same situation as me. Body builder and avid athlete. Then the raynaud syndrome hit, dizzy spells, brain fog, joint pain, stiffness, and unexplained fatigue. At first i tried to just work through it. Exercise has always been my way to to up my energy levels. But the more i did this the more exhausted i became. To the Dr i went and the diagnosis i got. So it’s been a year since my world was turned upside-down, i am truely not the same physically as i used to be. No not everyone around me understands what its like to turn into what I’ve become. Take the good days and cherish the blessings you can, bad days well they are what they are. I’m never going to be physically the same, and I’ve had to accept that. You’re still you is my point, and there is tons of help from people whome are going through what you are. Take care sweetie.
Thank you everyone for responding. I appreciate all your kind words and hold on to them for strength. Once my symptoms are all under control I'm pretty sure I can keep it together... but right now I am a hot mess!
Steen, when I was diagnosed in the beginning of December the doctor wants to try conservative management first before medication and to make an appointment with her in 3 months to check in on me. But honestly I can't hang in another 2 months, I am going to call and see if I can get an appointment this week. I thought about what you said and I confided in a friend that is also a Pharmacy tech, it sounds reasonable to express my interest to start something low dose! Thank you so much for sharing what happened with you... I am passionate about running and lifting, it is something I enjoy and is a big part of my life. To not being able to do what I love is actually more devastating to me than being diagnosed. Granted you still have your days, but I bet it feels good to cycle, golf and play tennis on your good days!!
Steen said:
Hi Jeannie. I am an athlete as well. I went through similar symptoms. I lost all my strength. I was just diagnosed in 2013. before that, I had no idea what was always wrong with me. are u on any drugs? I started on Plaquenil...and for the last 4 mos. it's been a miracle. I'm back to tennis, golf, cycling. I never thought I'd return to my old self..but miracles do happen, so don't give up. there were days I couldn't hold my bed up or push a button on my cell phone, I was so fatigued.