I am a recent lupus patient and do not know a whole lot about it, so hoping to hear others stories and learn from them as well as be a good listener. Curious to hear how some of you first found out you had lupus and what were your first symptoms/signs
Hey,
Welcome to an amazing support group. You will sure find some answers to many questions you have or even suggestions that are usually very helpful. I was first diagnosed with acute disseminated encephalomyelitis shortly after I awoke from a coma. About three weeks later I was diagnosed with CNS Lupus. I’ve come to learn that my case was extremely rare. My initial diagnosis of ADEM was actually caused by Lupus (it was a flare) according to my neurologist. Each and everyday I learned more about Lupus and I’m sure you will too. You’ve definitely come to the right place. If you have any questions don’t hesitate to ask. I’ll do my best to answer.
Best wishes.
I guess it was sort of a surprise for me. Only because I had been so sick, on and off, the prior 9 mos. especially, and landed in the hospital a couple of times…high fevers, unusual swelling…something always seemed to hurt. (Truthfully, for about the last 9 yrs.) No matter how large or small. I was fatigued - at times I’d have to use my hands to prop my own head up. I was always very athletic for the past 13-14 years. Then over the last several, I would get fatigued easily…something would hurt. My feet/ankles have been the worst. I just chalked it up to tennis, golf, gym, biking, crew, etc. (by the way, I’m 59) went to foot doc 4 yrs. ago…couldn’t find anything. I just put up with the feeling that my feet were going to “break.” As I said, got very sick in '13. Also went to a different foot doc last summer. Was also diagnosed with severe plantar fasciitis. Told him about all my other symptoms. HE wanted a blood test. My rheumatoid fracture and sed. rate were high. He suggested a rheumatoid doc…which I was going to see anyway due to family arthritis. I go to other docs regularly…and have blood work done. But I assume maybe this foot doc asked for certain tests? Not positive…otherwise, he’s the only one that caught it. Went to rheummy. She did a battery of tests. Said I have “it.” Did a 2nd round of testing. I also have the gene. Although I don’t have the usual ,rash, I get things intermittently. Once in a great while would get a little rash, maybe the size of a nickel or quarter…on my foot, or neck or torso. I’ve had Reynauds for 40 years…although not always bothered by it. But the fatigue, loss of muscle strength, (also due to exercise coming to a screeching halt the last 3 yrs.),sleeplessness for 15 yrs., etc. I just never felt “good” or 100%. I thought it was also due to allergies and maybe needed a change of meds…as I developed a chronic cough the last few years. A new ENT solved that problem (silent reflux) Stopped eating certain foods…and it was like magic. Had a tube put in my ear, as I’ve had fluid on and off for years…problem solved…so far haven’t had all the congestion etc. only seem to have it if a food sparks it. There are times I haven’t been able to walk due to the pain or swelling in my feet or knee. My back has hurt so badly that I couldn’t get off the MRI table. So thankful for my PODIATRIST for really being on top of things. Who knew!!!
I’ve also had 2 shoulder surgeries and PRP (plasma rich platelets) done in both elbows for severe tendonitis. (MIRACLE!!!) I’ve been feeling great since the start of '14… Introducing a little exercise back every day. Started with walking…and I would huff and puff loudly. Pulmonary testing came out fine. I think lack of exercise played a part in my breathing…and lack of breath. I have been in the gym, biking, golfing, and playing tennis…even twice in 1 day. I am going to take advantage of every moment I have when I am feeling well…as I have been to “the Pits” and back. One day you might not care if it’s “lights out”…but thank God things can and do change. I don’t know for how long, but am loving life today.
Good luck to you. As you will see, things run the gamut with different people. Just keep your chin up and live life to the fullest when you can.
Thank you for your story. It's very interesting to find out how others havre been affected or first found out. It's a very unusual disease that obviously can affect people in so many different ways. I did not want to accept this diagnosis because any other pains we develop over the yrs usually come on gradually, such as my hands/wrists started 20 yrs ago. You learn to adjust and change how you do things to work with the pain but one day I'm fine, the next day I have one swollen ankle, thought it may be a bug bite or something, waited about 10 days before going to dr. No sign of infection, no blood clot, lyme was negative so suggested I go to an RA specialist. I wasn't buying it until a few days later the other ankle started. So what i read up on RA did seem to make sense, had some blood work done then went to the RA dr and said I have lupus so he sent me for more bloodwork and then confirmed it was lupus and no signs of RA. My wrists came back as osteoarthritis, which is what I always assumed it was anyway. So due to the sudden outbreak and now everyday having pain in my feet/ankles that was not there 2 months ago was hard to accept, but I am getting more adjusted to it I guess. Life is definitely full of surprises and you can never take anything or anyone for granted. Every day is a gift. I guess from what I have read that you never know when or where your next flare up may be. It doesn't seem to generally attack the same place twice, so any body part is free reign?? It's a wait and see situation, which is scary. I wish you the best, glad you are doing well right now and hope it stays that way :)
Steen said:
I guess it was sort of a surprise for me. Only because I had been so sick, on and off, the prior 9 mos. especially, and landed in the hospital a couple of times...high fevers, unusual swelling....something always seemed to hurt. (Truthfully, for about the last 9 yrs.) No matter how large or small. I was fatigued - at times I'd have to use my hands to prop my own head up. I was always very athletic for the past 13-14 years. Then over the last several, I would get fatigued easily...something would hurt. My feet/ankles have been the worst. I just chalked it up to tennis, golf, gym, biking, crew, etc. (by the way, I'm 59) went to foot doc 4 yrs. ago...couldn't find anything. I just put up with the feeling that my feet were going to "break." As I said, got very sick in '13. Also went to a different foot doc last summer. Was also diagnosed with severe plantar fasciitis. Told him about all my other symptoms. HE wanted a blood test. My rheumatoid fracture and sed. rate were high. He suggested a rheumatoid doc...which I was going to see anyway due to family arthritis. I go to other docs regularly...and have blood work done. But I assume maybe this foot doc asked for certain tests? Not positive...otherwise, he's the only one that caught it. Went to rheummy. She did a battery of tests. Said I have "it." Did a 2nd round of testing. I also have the gene. Although I don't have the usual ,rash, I get things intermittently. Once in a great while would get a little rash, maybe the size of a nickel or quarter...on my foot, or neck or torso. I've had Reynauds for 40 years...although not always bothered by it. But the fatigue, loss of muscle strength, (also due to exercise coming to a screeching halt the last 3 yrs.),sleeplessness for 15 yrs., etc. I just never felt "good" or 100%. I thought it was also due to allergies and maybe needed a change of meds....as I developed a chronic cough the last few years. A new ENT solved that problem (silent reflux) Stopped eating certain foods..and it was like magic. Had a tube put in my ear, as I've had fluid on and off for years...problem solved...so far haven't had all the congestion etc. only seem to have it if a food sparks it. There are times I haven't been able to walk due to the pain or swelling in my feet or knee. My back has hurt so badly that I couldn't get off the MRI table. So thankful for my PODIATRIST for really being on top of things. Who knew!!!
I've also had 2 shoulder surgeries and PRP (plasma rich platelets) done in both elbows for severe tendonitis. (MIRACLE!!!) I've been feeling great since the start of '14... Introducing a little exercise back every day. Started with walking...and I would huff and puff loudly. Pulmonary testing came out fine. I think lack of exercise played a part in my breathing...and lack of breath. I have been in the gym, biking, golfing, and playing tennis...even twice in 1 day. I am going to take advantage of every moment I have when I am feeling well...as I have been to "the Pits" and back. One day you might not care if it's "lights out"...but thank God things can and do change. I don't know for how long, but am loving life today.
Good luck to you. As you will see, things run the gamut with different people. Just keep your chin up and live life to the fullest when you can.
Thank you for your response, this definitely seems to be a good place to bond with others. I tried a different online support group but did not receive any feedback and did not feel the warmth or friendliness that I am finding here. I'm sorry of your diagnosis and hope you get all the help you need. There are so many types of lupus that I was not aware of. So far it has just been my ankles/feet affected. I guess if I think back, I could probably come up with some prior warning signs that were overlooked, but why drive myself crazy, can't change anything! lol Good luck to you and I will try to keep positive.
Brittany said:
Hey,
Welcome to an amazing support group. You will sure find some answers to many questions you have or even suggestions that are usually very helpful. I was first diagnosed with acute disseminated encephalomyelitis shortly after I awoke from a coma. About three weeks later I was diagnosed with CNS Lupus. I've come to learn that my case was extremely rare. My initial diagnosis of ADEM was actually caused by Lupus (it was a flare) according to my neurologist. Each and everyday I learned more about Lupus and I'm sure you will too. You've definitely come to the right place. If you have any questions don't hesitate to ask. I'll do my best to answer.
Best wishes.
I was diagnosed at 49, and started having symptoms in my hands, wrists and feet. My major complaint was my feet. I was first diagnosed at RA, and then went back a month later, and was surprised by a lupus diagnosis. The more I know, the more I realize I've experienced flares all my life, like the summer I spent sleeping when I was around 13 or 14.
Welcome !! Hope that you find the joy to know that you are not alone-Smile There is a lot to focus on and to understand about Lupus , mainly it is selfish, no respect and Very demanding !! Hope that you enjoy your time here with us 24/7/365, some one is always her to talk ! Enjoy .... Beverly l.