Looking for support - find it here in this discussion

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Patients Lupus

Looking for support - find it here in this discussion


Posted on
Hey Jo, I hope you had a wonderful Easter. I'm sorry you are not feeling well. Where do you live? You know I was on 100 mg fentenal patch, oxycodone, muscle relaxers and Valium. I was still hurting and I thought this is crazy. I'm on all this medication and I still have pain. I decided because we live in Florida that I was going to try medical marijuana. I had detoxed from being on all of these meds before by going to a Acupuncturist and a phychiotrist as my heart needed to be monitored as my Lupus was diagnosed in my heart and lungs. This time I did it on my own. I got my medical marijuana card and was able to get off of all my meds for a while. Because I have seziures, the marijuana really helps but I have anxiety really bad so I still have to take a low dose of Valium. The marijuana is a real additional expense of hundreds of $ each month and there were a couple of months that I was unable to get enough and was not on any meds so my Dr and I discussed putting me on a low dose of the Valium and said it would be okay to use with the marijuana. In fact for my depression I'm on Symbalta 2x a day which has really helped taking it 2x a day. I have a wonderful Dr. who listens completely and provides different options that fit how I want to treat this disease. I'm really sorry you are having to go through this. I hope you are feeling better today. I am thankful that you have posted your results and how you have felt while taking this medication. I hope this will be a help for others who may be thinking of this treatment or are already in the process. Take care and I hope to talk to you soon. Feel better πŸ€—πŸ™
Looking for support - find it here in this discussion


Posted on

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 πŸ™πŸ€—

Looking for support - find it here in this discussion


Posted on

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

Looking for support - find it here in this discussion


Posted on

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!!!!

Looking for support - find it here in this discussion


Posted on

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!

Looking for support - find it here in this discussion


Posted on

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 πŸ€”.  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.  πŸ€—πŸ™

Looking for support - find it here in this discussion


Posted on

@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 πŸ’ͺ, listen to your body and make good decisions for you!  Have a blessed evening and I hope to talk to you soon. πŸ™πŸ€—

Looking for support - find it here in this discussion


Posted on

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!!!!

Looking for support - find it here in this discussion


Posted on
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. πŸ€—πŸ™
Looking for support - find it here in this discussion


Posted on

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

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