Posted on 4/27/19 5:52 PM
Posted on 4/28/19 8:05 PM
Hey Jo love, I hope today is a better day for you. Are you feeling any better or gotten any kind of relief from your sickness?
I just wanted to check on you and see how you were doing mentally, physically and emotionally.
Know that you are in my thoughts. If you would like, I will add you to my prayer list.
Take care my friend and God bless you 🙏🤗
Posted on 4/30/19 1:46 AM
I have SLE and found know support groups ,Live in Connecticut. It’s hard being without someone who understands that your going though.
Posted on 4/30/19 11:51 AM
My doctor told me to think about trying infusions but I’m just not sure! She there is also a shot but it doesn’t work as well. I just don’t know!!!!
Posted on 5/3/19 5:59 AM
Hi everyone, I am new to the goup. I thought I could do this alone but can't. Ive never felt so disrespected and demoralized on my life. I was diagnosed wirh lupus in 2016 and I can now only do about 1/4 of what I use to beable to do. Its been a brutal, doctors dont beleive me, tests show nothing and yet the pain remains.
I have also been having a lot of chest pains + high blood pressure. Naturalremedygurl, how did they correlate your heart issues with lupus as opposed to age or anxiety?
Thank you! Hope everyone had a good day today!
Posted on 5/3/19 11:45 PM
Hey there, I'm sorry you are in this group. It is a brutal disease just like you said and like you I lived with improper diagnosis and found that doctors looked at me differently. I was diagnosed way back in the early 90's. I was in my early 30's and in great shape. I had always been an athlete so I was training for a 3K with a trainer. When we went to the track to run my lungs felt like they were freezing when I took a breath literally it was so painful and then my heart started beating funny... AGAIN! I ended up going to the hospital as I thought I was having a stroke 🤔. All I knew was something was very wrong. They put me in cardiac intensive care, did blood work and were able to diagnosis me from there. The amusing story here is when the doctor said they were going to do blood work I asked what tests they were going to do. When he told me I asked him if he was looking for Lupus and he said yes, how did you know? I told him I used to work in a lab and that's what I used to do. I was in complete shock when I found out especially back then but life is good. I'm 59 now and try to always remember that somebody out there that has it worse than I do so when things get bad (like now, I'm in a flare), I just remembered that God's got me covered. I hope you feel better soon. What kind of treatment are you going to choose? Where and what type of Lupus do you have? What state do you live in? Have a blessed and wonderful rest of the day. 🤗🙏
Posted on 5/4/19 12:16 AM
@Leilaann Hey friend, I'm so sorry we are having to get to have a conversation under these circumstances. I can relate to what you are going through. I have been dealing with this disease for over 28 years and everyday I wake up and think okay what is today going to be like. I have had so many other issues due to my body just breaking down. Hear is a good one you! My doctor actually had me hold my theigh and he took my knee, held it and was able to pull my knee away from my theigh. He did it on both legs and told me that my knees are not connected to my legs like they should be! Oh well like I said it could be worse. I'm so happy I found this website as like you there is nobody around that can relate. I originally had a support group that I went to at the hospital but then life happens and things change and I thought that I was okay and didn't need to have the help that comes from having others that can be a source of help and healing. I was wrong so I started searching for a place that I felt safe in and would be that source of help when it's really needed. If you want or need to talk, just let me know. Be strong 💪, listen to your body and make good decisions for you! Have a blessed evening and I hope to talk to you soon. 🙏🤗
Posted on 5/4/19 7:32 PM
Hi, thank you for sharing your story. Thank the lord for the people we do run into during our journey here on earth. I was like you, pretty athletic ate right most of the time. Im still an excercise junky when Im able. I was orig diagnosed with dicoid. But as time went on the aches and pains associated with SLE became more strong I expressed this to doctors who appeared not to care or even just fond the cause. I am a 46 year old women who could easily pass for 25. Ive expressed my joint pain, severeve fatigue and head cloudiness to multiple doctors who just never seem to beleive me. Nothing significant shows on their tests. I now have high blood pressure, grade 2 diastolic dysfunction and microvascular ischemic disease. But according to my doctors none of these are connected to lupus. I went to a physical therapist for my scoliosis. He showed me exactly where my curves is, I could literally feel the curve as his fingers ran down my vertebrae. I can feel it everyday, I was diagnosed when I was in high school. Went for extra xrays, xray tech says no signs of scoliosis. They call all my stiff tiny, little, mild as if its of no significance. Sometimes, I think im going crazy! My hope is slowly dissipating. Sorry, to unload! I dont really have anyone else to talk too. Hope your feeling better!!!!
Posted on 5/6/19 1:48 AM
Posted on 5/13/19 7:13 PM
Good morning everyone. I was diagnosed 3 months ago but starting getting symptoms for about 10 years. The doctors blamed every symptom on "stress" and "weight" really. So when they diagnosed me because symptoms are getting worse unfortunately there was a sigh of relief. Right now my main focus is work. There are times where I have so much energy like back in the day where I could clean a whole house, cook, and work a 10 hr shift and still say what's next? Now I start off with 30 minutes of energy and then I feel like the grim reeper came and became a squatter inside my body. Ugh! My job has been somewhat supportive but I'm wondering for how long. What are some tricks to get some energy?