hello everyone :) im new to the site but have joined a few other lupus support groups in a desperate attempt to find anyone whose had similar diagnosis as me . i started getting sick January 2012 with superficial thrombosis and by April i was hospitalized with severe hyperventilation ,chest pain and shortness of breath . at that time i was seeing a pulmonologist and a hematologist and they both felt i had something autoimmune brewing so i was referred to a rheumatologist (she is a lupus ,serjons,and vascular disease specialist ) at University of Miami Sylvester Treatment Center. i started see her in June and she proceeded to diagnosis and treat me for mixed connective tissue disease...By October 6 ,2012 I was diagnosed with sever systemic lupus. Ive failed multiple medications ,have organ involvement and several other conditions listed in my profile .. im in a constant state of "flare",ive never had a remission. i have severe inflammatory arthritis but unfortunately when i experience skeletal pain its because of edema in my bone marrow in multiple areas and now im suffering from mussel and cartilage tears in my hip,shoulder and rib cage. Ive have yet to find another person that has tissues tearing away from the bones and joints like i do and its sooooo scary because i realy do feel like im the only one and its awful..i know this disease is multi symptomed and unique to each patient but i see so many stories with such similar circumstances and it make me sad because its not my story :(
Dear Dawn: Welcome to the group! I have a few of the issues you mention (inflammatory arthritis), severe panic attacks (hyperventilation), definite kidney/possible liver involvement, but I don't think I have ever been tested to the extent you have. There are a few others on here with MCTD and you will likely hear from them soon. I just wanted to let you know that you are in the right place and you are not alone. You have found a wonderful, supportive group. Hugs, Dee
Dawn, I'm so sorry you haven't been feeling well! My thoughts are with you!
I have felt alone too because no one understood (or so I thought) how I felt. I was just diagosed with Lupus a few weeks ago. Hang in there and I am sure people will reach out. I wish I had more advice, but I am learning to go through it as well! Everyone on this site has been so helpful. Praying for a remission for you!
I was diagnosed in April but I’ve been sick for over 3 years and have never had a remission either… I’ve had to be on steroids constantly since diagnosis and even on them I’ve still got symptoms just not as bad as when I’m off them
AI diseases affect multiple body systems- its an anything goes type of illness Gotta hang in there and hope for the best Sometimes even with treatment this disease can remain active and with symptoms- the goal of treatment is to minimize organ damage My flares tend to last years also-this current flare is just winding down after 3 years But I have had a remission that lasted about 15 years so it can happen!!
Hi. I don’t know what not being on a flare is like I just know what being sick or super sick is like. I deal with sick and hope not to get super sick again too many times this year. At the moment I have had a complete body itch for 67 days that nobody can stop. I know it is just an itch but it is getting worse and it is driving me insane. I live with gloves on so I stop damaging my skin so much from scratching. This is on top of the bone pain, the kidney pain the brain fog/damage and all the other lovely things I deal with daily while going to work full time. In fact I gotta run. But remember this is a great place to vent we are all just about in the same boat and we do understand. Keep your chin up. Good luck!
thanks for your huggs and support from everyone ! sending the love back to ya :)
Tootles said:
Dear Dawn: Welcome to the group! I have a few of the issues you mention (inflammatory arthritis), severe panic attacks (hyperventilation), definite kidney/possible liver involvement, but I don't think I have ever been tested to the extent you have. There are a few others on here with MCTD and you will likely hear from them soon. I just wanted to let you know that you are in the right place and you are not alone. You have found a wonderful, supportive group. Hugs, Dee
thanks for your support!!xo
Michela said:
Hi. I don't know what not being on a flare is like I just know what being sick or super sick is like. I deal with sick and hope not to get super sick again too many times this year. At the moment I have had a complete body itch for 67 days that nobody can stop. I know it is just an itch but it is getting worse and it is driving me insane. I live with gloves on so I stop damaging my skin so much from scratching. This is on top of the bone pain, the kidney pain the brain fog/damage and all the other lovely things I deal with daily while going to work full time. In fact I gotta run. But remember this is a great place to vent we are all just about in the same boat and we do understand. Keep your chin up. Good luck!
thanks for your support!xo
poobie said:
AI diseases affect multiple body systems- its an anything goes type of illness Gotta hang in there and hope for the best Sometimes even with treatment this disease can remain active and with symptoms- the goal of treatment is to minimize organ damage My flares tend to last years also-this current flare is just winding down after 3 years But I have had a remission that lasted about 15 years so it can happen!!
thanks for your support !xo
poobie said:
AI diseases affect multiple body systems- its an anything goes type of illness Gotta hang in there and hope for the best Sometimes even with treatment this disease can remain active and with symptoms- the goal of treatment is to minimize organ damage My flares tend to last years also-this current flare is just winding down after 3 years But I have had a remission that lasted about 15 years so it can happen!!
thanks for your support!xo
cayleigh said:
I was diagnosed in April but I've been sick for over 3 years and have never had a remission either... I've had to be on steroids constantly since diagnosis and even on them I've still got symptoms just not as bad as when I'm off them
Dawn
I am sorry for all your issues. My heart reaches out to you. This disease is very hard to deal with.
I too see a doctor at UM Deerfield her name is Dr. Christine Savage and I just love her. She is the doctor that diagnosed me with systemic lupus in June of last year. I have been seeing her for three years. I live in Coral Springs and we should get together for lunch sometime. There is also a support group in Coral Springs the third Wednesday of each month at Coral Springs hospital in the cafeteria cafe. I will go with you if you wish. The next meeting is tomorrow night at 6:00 pm. Let me know.
Deenie
You are not the only one. I was just writing to someone else on this. Every time I turn around something else is going painfully wrong. Tomorrow I go to the pain clinic. I am hoping for something to make the flaring cycle to stop, I need a break from being constantly insanely ill. Hugs to you my friend.
I go to Dr.Savage too! She really is awesome :) I also see Dr.John Pitcher there often, he's an orthopedic oncologist and very smart with a great bedside manner.. My faience and i are at Deerfeild Sylvester alot so thank goodness everyone is sooo nice.. I'll be there Thursday morning bright and early to start my first Benlysta infusion.. I've struggling with poor lung function the past couple weeks and im just starting to breath almost normal again thanks to a new inhaler medicine(tudorza)..i hope the shock of the treatment doesn't upset that situation again,we'll see ...Anyway i would love to meet up some day when im eventually stabilized :)
Dewing3569 said:
Dawn
I am sorry for all your issues. My heart reaches out to you. This disease is very hard to deal with.
I too see a doctor at UM Deerfield her name is Dr. Christine Savage and I just love her. She is the doctor that diagnosed me with systemic lupus in June of last year. I have been seeing her for three years. I live in Coral Springs and we should get together for lunch sometime. There is also a support group in Coral Springs the third Wednesday of each month at Coral Springs hospital in the cafeteria cafe. I will go with you if you wish. The next meeting is tomorrow night at 6:00 pm. Let me know.
Deenie
Okay Dawn. Wishing the best for you on Thursday. And we can get together when you are feeling a little better… Deenie
dawncelest said:
I go to Dr.Savage too! She really is awesome :) I also see Dr.John Pitcher there often, he's an orthopedic oncologist and very smart with a great bedside manner.. My faience and i are at Deerfeild Sylvester alot so thank goodness everyone is sooo nice.. I'll be there Thursday morning bright and early to start my first Benlysta infusion.. I've struggling with poor lung function the past couple weeks and im just starting to breath almost normal again thanks to a new inhaler medicine(tudorza)..i hope the shock of the treatment doesn't upset that situation again,we'll see ...Anyway i would love to meet up some day when im eventually stabilized :)
Dewing3569 said:Dawn
I am sorry for all your issues. My heart reaches out to you. This disease is very hard to deal with.
I too see a doctor at UM Deerfield her name is Dr. Christine Savage and I just love her. She is the doctor that diagnosed me with systemic lupus in June of last year. I have been seeing her for three years. I live in Coral Springs and we should get together for lunch sometime. There is also a support group in Coral Springs the third Wednesday of each month at Coral Springs hospital in the cafeteria cafe. I will go with you if you wish. The next meeting is tomorrow night at 6:00 pm. Let me know.
Deenie
Hi Dawncelest,
You've come to the right group, as members have already shared, you'll find love and support here. I'm glad you're reaching out to others and you are in my prayers...
Thanks for your support Trisha! Xo
Michela-I am taking allergy every 4-6 hours for the itching. Is there anything that helps your itching at all?
Michela said:
I know it is just an itch but it is getting worse and it is driving me insane. I live with gloves on so I stop damaging my skin so much from scratching.