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Thread: need a friend

  1. #1
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    Default need a friend

    Hi! I am extremely new at this computer thing, so advice is appreciated!

    I am a lupus patient and have been for 8 years now. I was in remission and even sailed through a pregnancy and then in May I just crashed. My rt. knee gave out in church one Sunday, and within 2 weeks time it had spread to joints, lungs and my brain. I have a great relationship with the best rheumatologist you could imagine and he got right on the problem, but nothing is helping. I went from being pretty self-sufficient (as I have been since I got sick) and caring for myself and 2 young daughters to being bed-bound and stuck in a wheelchair. We have done massive doses of oral steroids and IV Solumedrol so you can imagine how I look. About a month ago we thought I was dying. All this has been extremely stressful on my family and friends. They have been very supportive, but it is hard to find someone to talk to. How many people who ask you how you're feeling really want an honest answer?

    I don't know a single other person with lupus. My sister just gave me her old laptop to use in bed so I am turning to you all. I do have a question: I have had neuropathy in my feet for years. With this flare I have very intense chest and back pain that started as pleuresy, but my rheumie now thinks is neuropathy. In my chest? Spine? Anyone ever heard of that?

    Thanks for letting me vent.
    Lori

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    Hi Lori,
    Welcome to the forum. I am sorry that you are having such a bad time of it right now. I also have Periferal Neuropathy. It got really bad in my hands and feet and legs. I had chest pains too and that turned out to be Pleuresy. I got really ill a few months ago with bad symptoms of shortness of breath, extreme fatigue, I could not go up a flight of staires and had trouble even getting out of a chair or bed. My tongue got really sore and looked awful. My Rheumatologist checked me for Pernicious Anemia and B12 deficiecy and sure enough I have that. I don't know anything about neuropathy of the chest and back. I imagine it could affect the nerves in your back and chest though, but I have never heard of it. I hope that they can help you with it. Keep posting. I am sure that Saysusie or Oluwa and some of the others will have more knowledge and can tell you more.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Hi Lori! I am also new here and have had Lupus and Peripheral Neuropathy, among other things, for 20 years now. I am also bed-bound most of the time. Thank goodness for laptops! Anyway, I have never heard of having Neuropathy in the chest area either. If it isn't Pleuresy, you could be experiencing either Costochondritis or Pricarditis, both of which are symptoms of Lupus. You can go to WebMD or any other medical website and read about them. They can make you feel like you are having a heart attack, but won't show up on any heart tests. I know what you mean about family and friends asking how you are feeling and not really wanting to hear an honest answer. I have had the same problem with my family. My husband and my 11 yr old son are about the only family members who I can talk to about it, and even they can never truly understand what I'm going thru. Please feel free to pm me anytime you need someone to talk to. The inter-net is one of the only ways I get to connect with the outside world, besides when I am going to doctor appointments, so I am always happy to make new friends. I'm glad I found this site and look forward to getting to know you more as well as others here. Welcome!
    :rainbowafro: ~JEN~

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    Hello Lori & All,

    I usually just tell people when the ask "How are you?" that "I'm all right." I think "How are you?" is the worst waste of time from people who I know don't care a flip how I am. . but, it's the nervous habit of our culture that I've also said myself at times. However, I don't mind anyone telling me "I'm not doing all that great today" because I'm sincere when I say "How are you?" No one is going to delve into their every ache and pain anyway, and if a person doesn't care, then they shouldn't ask if they only want a bald faced stoic lie.

    Right now, with my health problems, I'm just flying by the seat of my pants, trying different natural remedies and lots of prayer just trying to do my part to keep my 62 year old body and soul together. - I think one thing that has done me the most good for my arthritic type problems is just plain old fish oil capsules, the cheap ones from Walmart that are flavored and have had any impurities extracted, and also bone broth soup pretty often. Also, watching what I eat, eating lots of fruits and vegetables. I messed up, I think, by eating some fresh tomatoes the last few days, and that has seemed to bother some things with me. - Cutting sugar way down isn't easy, but I think it's needful. - I've only had pleurisy once, several years ago, for a short time.

    My worst problem is high blood pressure, and I've tried everything natural imaginable, plus most every drug imaginable which does not work and only gives me bad side effects.

    So, on that note - I suppose I've pretty told you all "how I feel".

    Wanda

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    Hello Lori;
    Welcome to our family :lol: As you've seen, this site is filled with people who are understanding, supportive and comforting.
    I am sorry to hear that your lupus is so active right now, but I'm glad that you can join us on your laptop!
    We are always here and there will always be someone available when you need answers, information or just want to talk. You are not alone!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hey Respite...

    Before you didn't know a single person with Lupus, now you have many friends who do..us...Welcoming you with warm open arms..hugs.

    It has been a few days since your first post, how are things today?

    Neuropathy..humm, not per se of the chest, spine, but perhaps the pain is radiating into your chest, shoulder.

    Pericarditis? Pleurisy? Herniated Disk? Costochondritis? GERD? All which can cause chest and spine pain. I have had them all...pain can radiate and wreak havoc all over. Inflammation...

    When I stopped taking my Protonix for GERD..you would not believe the chest, neck and back pain..who new. I do now.

    I would revisit your doctor to be re-evalauted. Is s/he treating your symptom? And ask him where this neuropathy is, origin?

    Be well..wishing you wellness,
    Hugs,
    Oluwa
    I have Lupus. So *^#@! what.

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