Looking for support - find it here in this discussion

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 🙏🤗

I have SLE and found know support groups ,Live in Connecticut. It’s hard being without someone who understands that your going though.

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!!!!

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!

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.  🤗🙏

@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. 🙏🤗

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!!!!

 

 

 

Oh my goodness, I am so sorry for everything you are going through. If you don't mind me asking what state do you live in? I'm in FL and was able to find a really good rhematalogist and neurologist. I completely understand your frustrations and they are real and I'm really astonished that unfortunately the process of getting diagnosed has not gotten any better since I was diagnosed in 91. That's just crazy to me. I'm glad you responded because it sounds like you need a friend that understands and I do. I had said earlier in a post that we as lupus sisters and brothers need to come together and really compair our stories and symptoms and treatments. I have gone off as much medication as I can. No more narcotics and 3 kinds muscle relaxers and a whole host of other pills. I have always had low blood pressure. I would know it was up because I would get a headache. Life with any kind of autoimmune disease is just horrible. No cure, still researching and soooo many people have no idea what our disease is about. When I tell people I have Lupus it's almost comical as they ask me if it's contagious! I mean come on. I really did think that by now there would have been more progress made but I also understand it is an extremely hard disease to narrow down. I'm glad you were able to get some of your anger out. Anything you want to talk, text me or post I try to stay on top of our topics because I'm so excited that someone had the forsite to build this awesome community for us. This is the closest I get to information on being able to talk to others like you that are frustrated. Take a breath and breath out the bad! I actually do this and visualize the bad leaving my body even if it's just a bad attitude! You will get through this. Do you have a rhematalogist? Just take it a day at a time. I'm sorry you are having heart issues. I'm really seeing a correlation between lupus and heart issues and strokes. The wonderful thing is it can be fixed so keep your chin up and hopefully we will talk soon.God bless and have a wonderful evening. 🤗🙏

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?

 Nette

@Chineloogbonna Hey my friend, I hope you're feeling better today.

I have been reading all the post's and truly believe we need each other because we all understand what each one is going through.

My husband is a saint and I love him dearly BUT he can't truly know what we all go through and to be fair it's not his fault because he doesn't have this disease.  But what he does have is impathy and lot of love.

I was asked about my heart issues.  I had trouble with it skipping  beats but nothing like what this day started presenting.  The irratic heart beat and breathing issues the day my friend took me to the hospital.  I knew something was very wrong.  From there I started presenting with issues like high blood pressure, more trouble breathing and I'm talking about just sitting...and trying to talk was a struggle.  So now I'm on blood pressure medication for high blood pressure! Huh🤨

Do I think my heart issues are related to my Lupus? I think so but both my maternal and paternal families have a history of some sort of heart disease 💔.

My father had 2 heart surgeries, my maternal grandmother died from a massive heart attack.  

Now the weird thing about this is that the doctors thought that the Lupus came from my paternal grandmother.  I was told she was thought to have had rhematoid arthritis but it could have been Lupus.  Again, I was told back then they really didn't know about lupus so 🙂.

I want to share a story with all of you so you can understand and know that our pain joins us in a horrific way and for me, this is my release.  My heart is so heavy when I think of this complicated moment in my life and the hard lessons we learn.  I love my children with all my heart and when I know that there is nothing I can do about having to talk about a difficult situation...it is soooo hard.  

When I told my kids (who are grown now and at the time were in their later teens I believe) . When I told them that this disease is genetic and usually skips a generation, and could possibly effect their children, my one son's response was absolutely gut wrenching.  I was told thanks mom look what you have done to us and look what we have to look forward to... Then their was the one who is quiet and crying.

My sons love me unequivocally...beyond a shadow of a dought. And it is recepricated. In sharing this very private moment with you I hope and pray that you will have an open heart and will seek the right words that need to be said. That you look to wisdom and understanding for everyone who is directly effected by this disease. That your knowledge will be your power and love unconditionally. 

 Now for the guilt and shame I feel about the fact that it could happen.  I love my sons more than life itself.  Their feelings were and still are the most important.  As moms do, my children came first sooooooo.  I am feeling guilty that I was offended at my son's remark.  Knowing the type of person he is, I knew he didn't mean it.  I know his heart.

I think that just sharing part of my journey with you has given me a peace about this moment in time and I'm realizing the reality of it all is to share with others so we don't suffer in silence.  I feel like a horrible mom for having those thoughts and being able to share them with y'all is a blessing but at the same time, I still feel shame for what went through my mind.  Someone is going to be able to relate and I trust with all my heart that this will be a source of help and healing for you.

Good bless and have a favored day. 🙏🤗