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Thread: New here, I have been sick for 12 years now...

  1. #1
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    Default New here, I have been sick for 12 years now...

    Finally got a Lupus diagnosis I knew was coming. In a way I am glad because now I can get the treatment I need to get better.

    I am 44 have 2 children, one 8 the other is 4. After an auto accident in 1989, I was diagnosed first with Chronic Fatigue and then FMS. It was determined my silicone breast implant was leaking because of the seat belt. I had them out. Followed by 5 more abdominal surgeries, 2 c-sections and a recent complete hysterectomy. Earlier this year I was finally give the correct ANA test (one that is not affected by silicone) and it was a strong positive. So the Drs guess, I have been positive Lupus for some time now. After 3 months of Plaqinel I could tell the difference between my lupus pain and FMS pain.

    My FMS had been in remission until I was expecting my 2nd child. Have been in pain and sick ever since. After a long fight and a wonderful attorney I am on Social Security Disability primary for Depression and sencondary for FMS. I had to hire a FMS advocate for $2,000 to do the documentation. Well worth the money.

    I would love support from this group. I have worn my shirt inside out like another posted, I unloaded the groceries and children from my cart only to place it in back of my car and then run over the cart. OH, and the good one, Put the baby in the car and when home, left the groceries in the cart at the grocery store. :lol:

    I am currently doing meds for my sleep pattern, depression, hormones, pain, nerve pain, high BP all of a sudden, plaquinel and steriod shots to keep me mobile. Really want to hold off on Steroids, over the years I have gained close to 60 pounds on steroids. I blow up. A recent ER visit with high BP 164/116 opened a door to maybe some heart effects. Blood test said no heart attack but EKG said something different. And Stress test was normal. So who knows. My c-reative protein is positive and I still have red blood cells in my urine so I guess more specialists.

    I guess even though I am not new to the pain, I am new to the condition. So help would be welcome. Thank you in advance

  2. #2
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    Default Hey there you!!

    So glad you finally came AND posted. You will find lots of support and prayers here, these people are awesome and know what we deal with every day. {{{HUG}}} How are you feeling today???

  3. #3
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    Default Better, I think I will get another shot in the other hip...

    Was looking at that rescue pack Saturday though. :roll: Glad I made it to the other side. Thanks for the referral. How are you feeling?

  4. #4
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    Default

    I'm ok. Spent most of the weekend on the couch since I didn't come to the wedding shower down there. Bry went with the inlaws so I vegged out. It was sooo nice. I'm trying to get through this flare so I can drive to Newnan to meet Martina the end of the month.
    The prednisone does seem to be helping though I hate taking it.
    Anyway, you might want to copy your original post under new members as well. Sometimes it takes a couple days for others to respond. Since we all deal with the same things, sometimes we get lots of posts here on one day and then quiet for a few days. So please don't think you are being ignored by everyone but me. LOL You need the support as much, if not more than, me right now so I didn't want you to give up
    {{HUG}} o did you check out the spoon theory?

  5. #5
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    Default

    Welcome to the board! Everyone is very supportive! Glad to have you with us! :lol:

  6. #6
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    Default

    Hi ladybug4em:

    I am also new to this forum but not new to pain. Glad you are finally getting to feel better. I was curious though about something you said and that was that you can finally tell the difference between FMS pain and lupus pain. How can you tell? I also have FMS in addition to lupus but it seems to me lots of symptoms overlap and I can never tell what is what or even what triggers the acute pain cycle. For instance swimming really helps with the muscle pain of fibro but exacerbates the lupus symptoms at times. Do you find this? My rhumatologist also told me it is much more difficult to treat a patient when they have both conditions because what is good for the goose is not necessarily good for the gander. Presently I am really having lots of joint and muscle pain that I can't seem to get any relief from. I am hardly walking these days and cannot for the life of me get my inflammation under control. Have tried eliminating wheat, corn, spices, sugar, potatoes, eggplant, red meat, coffee (that was a hard one) and most dairy from my diet and still no success. I have also tried fasting for days at a time and feel better during the fast but the minute I stop the pain is back. Any suggestions out there?

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