Anyone out there dealing with Lupus?

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  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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    Do any of you find you start feeling better in the 3-6PM window and being night owls vs being early morning types?
  • amunet07
    amunet07 Posts: 1,245 Member
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    softblondechick wrote: »
    I have Lupus, and have found that I need to live a pretty, boring, routine life to stay healthy. Changes in routine like travel, working too much, stress, moving, not eating healthy, can throw my body out of whack...and I get sick, cellulitis, flare ups...it is not worth it.

    I eat very well, no fast food, or junk food. Veggies, chicken, not a lot of prepared foods.

    Exercise, I stick to yoga, elliptical, nothing that is overly fatiguing, or I get sick, exhausted, and can't move for two or three days. I have overdone it, when I tried to do a Beach Body workout, and fitness class...That lasted for 12 weeks. I dropped out half way through. ..

    It is frustrating. I can't do a lot of things...I can't drink alcohol at all, makes me ill. I get weird infections...

    It is not so bad, as long as you take time to take care of yourself. ..That is the key to managing Lupus.

    I'm glad someone else is out there confirmed this... my friends think i'm crazy when / if I stay up late & or drink even a 1/2 glass of something i'm sick. <3
  • amunet07
    amunet07 Posts: 1,245 Member
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    justcat206 wrote: »
    I've got Sjogrens and am apparently "On the path to Hashimotos." Doesn't seem to effect me much unless I eat my trigger foods. But if I do, then it's major joint swelling and pain, massive fatigue and horrible stomach pain. I have to cut way back on workouts during a flareup (really light lifting or walking instead of running). Nice to "meet" you all :)

    what are your trigger foods? maybe I need to stay away from those too.

  • atibrat
    atibrat Posts: 70 Member
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    Have Lupus/mixed connective tissue disease. On Plaquinel and Prednisone since September 2013 when I had a horrible flare that I have never quite gotten over. Fatigue, muscle pain, chronic bronchitis/asthma are the major issues. Sick since 2007 but diagnosed at the end of 2009. The last 2 years I had a herniated disc in my cervical spine that kept me from working, sitting, standing or doing much of anything until my fusion on November 5th of this year. I still have pain when I do too much but it is so much better than before surgery so 8 weeks out now I am excited to get some of my conditoning back. I have 6 more weeks until I will offically be able to do physical therapy but I am trying to be more active and walk more. I plan to get my life back as much as possible in 2015. Would love to be friernds with anyone who understands. I am 52 feeling like 80 and ready to get going toward health. The neck injury really set me back with weight and conditioning. The only way I could control the pain was laying down so 2 year sof being down 70 to 80% of the time was HORRIBLE. I feel like a baby starting my life over again and I am ready to GO.....
  • cyndit1
    cyndit1 Posts: 170 Member
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    I have both lupus and rheumatoid arthritis and take a ton of medication both orally and 2 injectables. It took a really long time to get an accurate diagnosis and proper medication (first diagnosed with only lupus, then only RA and then finally a dual diagnosis) and the combination of all of the medication finally over the last year has made a huge impact on my symptoms (I take plaquenil daily, methotrexate injection weekly, and Cimzia injection bi weekly) I generally only feel really bad when its time for my injections (especially when its double shot day) but when I inject both meds its like a miracle the next morning. I am a distance runner so being active is really important to me and my workout schedule is, as far as I am concerned, as important as my medication. Some days it sucks to get to the gym or outside for a run but I force myself and on bad days I just keep it light. No matter what, exercise always makes me feel better. For a very long time I fought the medication and refused to accept my illnesses but I have gotten over that. For anyone that thinks they can't workout, you can with some patience and perseverence...and yes my doctor knows I run half marathons (22 so far) and although she thinks I'm crazy, she supports me.
  • amunet07
    amunet07 Posts: 1,245 Member
    edited December 2014
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    One of my docs said I probably shouldn't start back into exercise with the P90X a coworker gave me...and right now it is -8 here so...I'm looking for something I can do in my shoe box of a home until I get it together and the weather gets nicer. They tried Plaquinil for me and it made me break out in a nasty rash. Right now all I have is methotrexate and methylprednisolone (which I don't want to take-afraid it will make me gain weight or not lose it). Some days my ankles feel like a scene from the movie Misery. lol (ps they say it is Undifferentiated Connective Tissue disease with Kidney issues that they are watching to see if it is unrelated or related if so I think they will change it to Lupus)
  • trinity9058
    trinity9058 Posts: 149 Member
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    I have lupus with liver and CNS involvement as well as the regular joint stuff. Feel free to add me!
  • kdfishburne
    kdfishburne Posts: 1
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    I have lupus. I have been sick constantly and also have gained about 70 more pounds this past year. I have just hit 300 pounds.....ugggh. I am in pain all the time and can barely move to do exercise.
  • Debra_mccullar
    Debra_mccullar Posts: 1 Member
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    I'm right here with you. Need to lose 75 myself and SLE does make it hard. Hugs
  • dtierno
    dtierno Posts: 7 Member
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    Hi - I am looking to connect with others as I was recently diagnosed with Lupus. It was challenging to get this diagnosis as my rheumatologist was initially thinking I had RA and I took Humira for a year. I have also had Hashimoto's for 25 years. I am determined to get healthy and while I have been a member here for sometime - I have been off and on with my tracking. But this is a new year and a new diagnosis and honestly it might just be the scare I need to keep it up this time. I will now be taking only Plaquenil. My diet is Paleo - I started last September and stayed on it through the middle of November and took a break through the holidays - OMG what a mistake. I can honestly say ( sadly since I miss popcorn) that eliminating dairy, grains and legumes and sugar makes me feel significantly better. So as of Dec 29 I am back to full Paleo and have already lost a little bit of weight and my energy is beginning to increase. I aim for a minimum of 30 minutes of exercise a day - mostly treadmill, some weight training and some yoga. Please feel free to add me as a friend. I also have a fit bit and am trying to get in 10k steps a day.
  • lexbubbles
    lexbubbles Posts: 465 Member
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    Not Lupus, but I've had rheumatoid arthritis for 19 (coming up for 20) years - since I was 5. Some of the symptoms are very similar, I believe.

    Mostly I eat lean protein and fruit/vegetables. I do a lot of exercise, myself, but I built up to that. I guess because I've been in constant pain since before I knew how to describe 'constant pain' it... just doesn't bother my any more and is totally normal. (Which is not to say I never get flare-ups that make me curse everything in the universe and lay me out for several days. I do. I just stopped using 'my ankles/knees/hips/back/shoulders ache I'm not gonna exercise today' as a personal excuse not to do anything years ago)

    These days I train in Brazilian Jiu-Jitsu 3x a week, run 3-4x a week (total 10-15miles) and, when I'm at uni, walk about 15 miles a week as well.

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