Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 28

Thread: Lupus or Fibromyalgia?????

  1. #11
    Join Date
    Apr 2009
    Posts
    838
    Blog Entries
    5
    Thanks
    8
    Thanked 24 Times in 22 Posts

    Default

    (((hugs)))

    My pcp feels sure I have lupus, sjogren's, and FM...but no specialist has agreed with her yet. The 3 rheumy's I've seen have diagnosed me with UCTD, then changed to MCTD, and lastly hereditary angioedema is the cause for all of my woes. An immunologist I saw recently thinks I have something autoimmune evolving and is working on figuring out what it is. It's the first time I feel like we're getting somewhere. I'm giving up on my hunt for another rheumy.

    Has anyone taken a biopsy of your rashes? My pcp wants me to visit her the next time I break out, as long as it's not on my face, so she can biopsy.

    The rashes are what helped me find out something autoimmune was going on. I was covered from head to toe in a rash that wouldn't go away after two weeks. The worst rash I've ever had. It led the pcp to wonder if something systemic was going on, labs were done, and it all pointed to Lupus and sjogren's.

    Sometimes I only break out on my fanny, sometimes on my legs only. It's like it has a life of its own and wherever I'm warmest the rash is of course worse. But sometimes it's just worse with no cause. Most of the time it involves the trunk of my body at the start and may or may not get worse.

    I've been breaking out on my face and it looks like the malar rash every single time. But the rheumy I showed it to gave it no regard at all and kept focusing on the lab work insisting that she thinks it's hereditary angioedema. Which it can do this also, but the immuno I'm seeing now says she doesn't think so and she knows more about that than the rheumy so...

    I have to say I'm very impressed with the immunologist I recently saw. My pcp suggested I stay with the immuno and let her find my dx. I'm feeling that's the way to go for me. I've seen 3 rheumatologists and after one visit with the immuno I feel like I'm closer to a dx than I have been with the 3 rheumys.

  2. #12
    Join Date
    Jan 2009
    Location
    Atwater, California
    Posts
    78
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Well I had a really bad flare today. The rash came on my thigh and buttocks, and I had 102.3 temp. Not to mention, I have pain throughout my body. I went to my pcp today, and cried like a baby. He called the rheumy I went to. Apparently the rheumy thought the rash I was talking about was like sorisis or something like that. My pcp really wants him to see my rash when it is really inflamed. Today after the two docs talked, they decided to take another biopsy of the rash. **I asked my doctor about my last blood test, and what my ANA results were....they were extremely high/abnormal. So I really think I have both Lupus and Fibro. They gave me an injection for the rash, and if it doesnt go away in a couple days, the rheumy wants to see me. When I went to see him last month, I asked him if he wanted to see me If they rash came. He said to only come in early to see him if I get the butterfly rash, or sores in my mouth...well those have never been my symptoms... and not everyone with lupus has the butterfly rash and sores in the mouth.

    So my frustration is still there...but I feel a little better knowing that my ANA levels were abnormal...weird that should make me feel better. But I just want to get an accurate diagnisis.
    46 year old mother of two diagnosed with SLE 2 yrs ago.
    Meds: Plaquinil, azathrioprine, cymbalta, water pill, folic acid, low dose asprin, and a medication to help me sleep.

  3. #13
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 79 Times in 69 Posts

    Default

    hi mary jane,

    i am so sorry that you are flaring so badly. but, thank goodness you had a drs. appt. today and how wonderful that he cares enough to call your rheumy to discuss your situation....sounds like maybe you have a good team helping you.

    hope you are able to have a decent night's sleep.
    Phyllis

    share a smile today

  4. #14
    Join Date
    Jan 2009
    Location
    Atwater, California
    Posts
    78
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    sleep...whats that...After I take my meds, I should sleep ok. I'm having the night sweats right now...I think it's from the fever my body is fighting.
    46 year old mother of two diagnosed with SLE 2 yrs ago.
    Meds: Plaquinil, azathrioprine, cymbalta, water pill, folic acid, low dose asprin, and a medication to help me sleep.

  5. #15
    Join Date
    Oct 2008
    Location
    California
    Posts
    1,213
    Thanks
    280
    Thanked 208 Times in 162 Posts

    Default

    Oh Mary Jane, I really feel for you. The pain, the fever and frustration of not knowing what's going on. I am happy to hear that your doctor was able to see the rash at its worst and that your PCP and rheumy actually discussed your status. I understand your feeling validated about your labs. This isn't all in your head.....really! Keep us posted on how you're doing

  6. #16
    Join Date
    Jan 2009
    Location
    Sylvania,Ohio
    Posts
    1,409
    Thanks
    79
    Thanked 70 Times in 58 Posts

    Default

    AWWWW~ Maryjane, I AM THINKING ABOUT YOU and WE are ALL here FOR YOU as well
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

  7. #17
    Join Date
    Dec 2008
    Location
    Phoenix, Arizona
    Posts
    1,013
    Thanks
    0
    Thanked 22 Times in 19 Posts

    Default

    Mary Jane, I am so sorry you are frustrated, tired and to top it off you're in a flare! You are right, you need lots of sleep right now to get you through this. I have been diagnosed with lupus and fm and this is very common. I take certain medications for each and there really is a difference between the two. I just now starting to understand the difference between the two in regards to pain and what needs to be done. One thing you should try is about a half hour before bed, run an Epson salt bath, read a good book and relax. There are therapeutic properties within the salt and it really helps me with the tenderness and muscle pain. All of that also helps to bring my system down so I can fall a sleep easier. You just hang in there! What meds do the doctor have you on fm??????? I am on Lyrica and it really helps me out at night. Tonight I am sending you healing thoughts and gentle hugs to comfort you. Keep us posted on how you are feeling and what comes out of all of this frustration :hugs:
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

  8. #18
    Join Date
    Jan 2009
    Location
    Atwater, California
    Posts
    78
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Danica...I'm not on anything for the fm...I take plaquinil and imuran(sp), plus cymbalto and trazadone to help me sleep. One thing I have noticed since I started having flares 3 years ago...in the beginning the flares would come and then go...now the pain stays...I'm think this is the fm. I personally think I have both lupus and fm...but we'll see what the docs say in october. It's just very frustrating when you think you know for sure what is wrong with you...and you've been taking all these meds for the past two years, only to find out I may not need the meds.
    46 year old mother of two diagnosed with SLE 2 yrs ago.
    Meds: Plaquinil, azathrioprine, cymbalta, water pill, folic acid, low dose asprin, and a medication to help me sleep.

  9. #19
    Join Date
    Aug 2009
    Location
    NZ
    Posts
    68
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Mary Jane,
    I believe Cymbalta was approved for FM

  10. #20
    Join Date
    Jan 2009
    Location
    Atwater, California
    Posts
    78
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    ...Thanks to all of you for your concern...I'm having an unusually GOOD day today... it's kind of scary.
    46 year old mother of two diagnosed with SLE 2 yrs ago.
    Meds: Plaquinil, azathrioprine, cymbalta, water pill, folic acid, low dose asprin, and a medication to help me sleep.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •