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Thread: New to Lups, new to this site!

  1. #11
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    Quote Originally Posted by bkm0117 View Post
    Thank you all for making me feel so welcome. It is an awesome thing to know there is such a support system. I forgot I also have psoriasis because I had that way before Lupus and Sjogrens. I keep forgetting they all have something to do with one another. I am taking prednisone and methotrexate. Not sure if the stuff is working but I know for a couple of days after the methotrexate I feel like doo doo. I have been having indigestion a lot lately even when I don't eat. Not sure if that is associated to all this. Also, last night I had this horrible pain under my right ribs. I have been tested a couple of times for gall bladder problems but it always comes back negative. I am still not sure about my Rhuemie Dr though. Unfortunately, it doesn't seem that there are many of these specialists to choose from out there.

    I am not sure what "sick" is supposed to look like I just know that people say "Wow you don't look sick" I think I should respond what exactly does it look like? I think it's just because these diseases are not discussed as much as others or people are not as aware. I know I had never heard of Sjogrens until diagnosed.

    Again, thank you all so very much for your welcoming me and your kind spirit. It does make a person feel better emotionally!!!
    Hello Brenda,

    It was the best thing when i joined a while ago, i thought i was going out my head besides having my hubby to chat to.
    I have psoriasis like yourself and that's such a pain and the skin trouble is terrible my dermatologist puts me on steriod cream which is excellent then gives me a break as it can age you but now the summer as arrived my feet start weeping ontop and i have to use steroid plasters for it to heal, try to avoid as much sun as possible as your skin burns quickly plus it triggers flares such as rashes and always where a 50 block when out and i do recommend shade.
    Brenda the indigestion comes from the sjogren's disease and can be worse if the lupus is working hard in your system with it, i also get the bile besides for ages and where your having pain under your right rib i'm getting it bad with the left and i've got to have a scan soon to see what's going on besides checking my gallbladder, i was diagnosed with having IBS but the meds did'nt suite me plus the pains gone past that, so my GP is getting me checked.
    We seem to be in the same boat refering rheumo specialist's mines no good either but what i can't get from him my dermo doctor helps more.

    I'd never heard of any of mine till diagnosed refering to do with the Lupus but i do have seizure's, i've had strokes and also DVT which Lupus can also cause besides these symptoms coming on people naturally.

    I hope your much better today and i always say this we're never 100% but it's nice when a member gets a day when it's not so hard.

    Hugs Terri xxx
    Last edited by Peridot20_Gem; 04-20-2011 at 07:46 AM.

  2. #12
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    Saysusie,

    Thank you for the website you referred me to. That is awesome. I think this will also help my family a bit to understand that even though the outside looks good, the inside is hurting. The drugs I am taking do help somewhat but I think the Sjogrens is really bad. The dr did not give my anything for pain but just told me to take Aleve. I have an appt in a week with the dr's assistant and I will tell her the things I have had going on the past couple of weeks. I have been off of work for 2months and right now the fatigue and my feet hurting so bad I don't see me being able to go back just yet. That will be interesting to see if the dr will put me out for a bit longer.


    Thank you so much for your help and your words of encouragement. It really does help to have someone that understands. I hope that I can pay it forward soon to someone that is new like me.

    All the best,

    Brenda

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    Saysusie (05-02-2011)

  4. #13
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    Hello Terri,

    Thank you for taking the time to write. I see by your diagnosed section you have quite a list. Were all those diagnosed at once or were they diagnosed as new symptoms arose? I seem to be having something new all the time. The other day my nose kept bleeding and now my feet hurt so bad some days it's hard to walk. I hate telling anyone that something hurts because the look on their face is now what. I chalk it up to them not understanding.

    I am sorry that you have had a hard road and I hope you have peace and good days ahead.

    Thank you again for taking the time to talk with me.

    Brenda

  5. #14
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    Hi Brenda and welcome. Like you I was diagnosed 9mo ago with lupus, I am anemic,carry the sickle cell trait, and have fibro. What I found interesting is what you said about your feet, I have been experiencing pain,tingly,and moister on my feet. By the end of my work day I feel like I can't walk sometimes. I kept buying different shoes thinking that was my problem,is this sjogrens or the lupus. And now my vision has gotten pretty bad, I saw my optometrist today and she said my eyes are very dry, very serious. I told her I'm using Blink gel drops, and she recommends I see my M.D. to start me on restasis and continue with the Blink drops. I asked her if this could be the start of sjogrens, she said yes possibly, is this correct? I also started on Radnitidine for my nausea. I'm having flares at this time, I will be calling my rheumy to get started with plaquenil.
    Like you my rheumy doesn't give my info to go by, everything I'm learning is coming from these wonderful people here.
    Best to to you.... bertie

  6. #15
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    Quote Originally Posted by bkm0117 View Post
    Hello Terri,

    Thank you for taking the time to write. I see by your diagnosed section you have quite a list. Were all those diagnosed at once or were they diagnosed as new symptoms arose? I seem to be having something new all the time. The other day my nose kept bleeding and now my feet hurt so bad some days it's hard to walk. I hate telling anyone that something hurts because the look on their face is now what. I chalk it up to them not understanding.

    I am sorry that you have had a hard road and I hope you have peace and good days ahead.

    Thank you again for taking the time to talk with me.

    Brenda
    Hi Brenda,

    Your welcome and that's what we're all here for to help one another.
    How my symptoms came about i had a bad rash covering my body which was identical to ringworm but flat surfaced but was still treated for it, so my GP sent me to a Dermo who said it was eczema and took bloods and when i saw him again i was in a right state with my hands with sores, cuts and my face was sore on my nose and mouth, he said i had inheditery psoriasis but no anaemia was showing and looked at the rest of me and told me i had Raynauds Disease and wanted to start me straight away on presidone but when he checked it counter reacts with my tegretol, he refered me onto his client in Rheumo he did 9 bloods, then 12 bloods and i had to go in the day unit for the day i was in so much pain x-rays was done and a furthur 11 bloods and a letter was sent to my GP stating what i have below except for the anaemia, it took 6mths for a correct reading to come out because of the Lupus making the bloods fluctuate and was giving a negative reading on the anaemia and now i take folic acid tablets and B12 Jabs for life and the last time i went i saw the blood specialist and he said i don't need wulfrin at the moment as i have no clotting as i've had DVT in the past but next time i go a DNA test is to be done.

    All this hit me going on for 4yrs ago and when they ran the tests and with symptoms from my past, they told me i was born with it but i started feeling affects from 5yrs of age.

    Brenda i don't like to put anyone on a downer but mines all come hard on me in the last 3yrs mainly and there's not a day go by where i'm not waking with something or another.

    The nose bleeds are off the Lupus i've had it regular for years but lately it's down my left side so i've been looking it up apparentley Lupus can cause nose bleeds and my feet hurt like yours but the raynauds does'nt help and the only shoes i live in are slip on flat ones.

    No one knows the actual situation we're in only the people who have it and that does rile me up.

    I really do hope you've had a better day today and you've also had a nice Easter.

    Love Terri xxx
    Last edited by Peridot20_Gem; 04-24-2011 at 10:08 AM.

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