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    Old 05-29-2017, 04:20 PM   #1
    borderlinegirl
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    Hey everyone.
    My mother has an undefined autoimmune disorder (meaning it fits criteria for autoimmune disease but it is not clear what it really is yet, if that makes sense) anyways it gives her a lot of pain. I was wondering if anybody else had any sort of helpful tips about what can help her & what worked for them. Anything is appreciated & my prayers go out to anybody who is struggling with any autoimmune disease as I have been watching my mother go through it and I know it is hard. Thanks in advance for any helpful tips or information.

     
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    Old 05-29-2017, 08:07 PM   #2
    wishiwerewell
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    Hi there. I'm so sorry to hear about your Mom. Can I ask what kind of pain she has? I don't want to intrude. I also have undiagnosed autoimmune issues. Well, some diagnosed, some not. Doctors are giving me prescriptions for symptoms, then new symptoms appear. What I can tell you, when I get body aches and chills, I take a long, hot epsom salt bath. If your Mom has bad blood pressure, make sure a doctor approves that, though. For my foot pain, I use frozen water bottles and roll my feet over them. It's unbelievably effective. I also have a tramadol prescription for the days that get really bad. Has your Mom seen doctors? Is she on any meds? I hate that she's going through it. You're such a wonderful daughter!

     
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    Old 05-29-2017, 08:44 PM   #3
    borderlinegirl
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    Quote:
    Originally Posted by wishiwerewell View Post
    Hi there. I'm so sorry to hear about your Mom. Can I ask what kind of pain she has? I don't want to intrude. I also have undiagnosed autoimmune issues. Well, some diagnosed, some not. Doctors are giving me prescriptions for symptoms, then new symptoms appear. What I can tell you, when I get body aches and chills, I take a long, hot epsom salt bath. If your Mom has bad blood pressure, make sure a doctor approves that, though. For my foot pain, I use frozen water bottles and roll my feet over them. It's unbelievably effective. I also have a tramadol prescription for the days that get really bad. Has your Mom seen doctors? Is she on any meds? I hate that she's going through it. You're such a wonderful daughter!
    Thank you for your reply!!! My moms pain is all over but very much in her legs/thighs & shoulders. She has been diagnosed with connective tissue disorder & I believe rheumatoid arthritis. She was on a medication for it but she had some kind of stroke that made her lose part of her vision from it. Thank you for your tips!! I really appreciate it!!
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    Old 05-30-2017, 04:58 AM   #4
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    Re: Any helpful replies encouraged

    Borderlinegirl, I'm merely a patient (lupus), but here are some thoughts. Is your mom seeing (minimally) a rheumatologist?

    And have you seen her labs? Do you know which of her tests are positive? Autoimmunes can be very difficult to dx. The American College of Rheumatology (ACR) has established criteria for each of the major AI's, but one problem is that none of the dx'es are based SOLELY on lab results. Also, patients may not "present" with enough criteria fulfilled, thus stay in limbo for awhile. You could find the criteria for lupus on the lupus board, in the "sticky post" section; the criteria for other AI's, you could find elsewhere.

    Re her stroke. I don't know how to interpret your words about what caused it; do you think her MED caused it, or her possible RA? I ask because one AI, lupus, can be accompanied by another AI called Antiphospholipid Syndrome (abbreviated APS), aka sticky blood syndrome; and APS promotes strokes, etc. You could find more info on APS on the lupus board. (I would want APS ruled in or out, personally.)

    Testing for RA. Per one of my lupus hardcovers, I think the best predictive test for RA is something called Anti-cyclic Citrullinated Protein (anti-CCP); has it been run? How about X-rays, to look for the "mouse bites" (bone erosion) characteristic of RA?

    Speaking of books, most libraries have hardcovers that you could borrow & eyeball (meaning you wouldn't have to read word-for-word). One of my favorites is a lupus book written by a world-famous rheum. I like it because the author discusses *various* AI's and ultimately explains, in a late chapter, how lupus is differentiated from similar AI's. (There's actually a "sticky post" on the lupus board re helpful resources.)

    When doctors suspect an autoimmune but the patient doesn't yet fulfill the diagnostic criteria for any one AI, they sometimes call it Undifferentiated Connective Tissue Disease (UCTD).

    Re her med(s). Do you know what her meds she's taken? That may provide some insight into which AI her doctor most suspects. (Or it could be something that doesn't provide a clue, like steroids, which are used broadly.)

    Hope this helps a little. It just struck me that you could sit down with your mom & post *together*---would she be up for that? (I think two heads can often be better than one.) Looking forward to hearing more from either/both, and wishing both your mom & you better days ahead! Warm wishes, Vee

     
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    Old 05-30-2017, 06:55 PM   #5
    borderlinegirl
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    Re: Any helpful replies encouraged

    VeeJ, I will see if my mom will sit down & post a thread with me that's a really good idea or maybe I can just start her on this site herself. I do remember from what you said that they did tell her it was connective tissue disorder & she has a lot of inflammation throughout her body. The library is also a really good idea for more information thank you, didn't even think of that. It just makes it kind of hard to find information on when they don't know what exactly she has since its undefined. I very sincerely appreciate your reply! Thank you so much.
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    Old 06-01-2017, 06:40 AM   #6
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    You have gotten some good comments here, so I'll add just a couple of things. If your Mom has RA, her rheumatologist can put her on what is called "disease modifying drugs" that actually suppress the disease process, suppresses inflammation, prevents joint destruction and eases pain. These also relieve to some extent the stiffness that interferes with functioning. Naproxen, over the counter, is also a good anti-inflammatory that can provide some pain relief. It is available also in prescription doses (twice the OTC dose), which would be covered by most insurances. Many Drs will treat patients with meds for autoimmune diseases, even if they don't have pinned down which it is. It is possible to have a few, like lupus AND RA, or RA and polymyositis. I would make sure she is seeing a rheum, not just her PCP. Look at a different doc if she is not getting the help she needs. I would also certainly follow through with Vee's suggestion about making sure she has been tested for APS, which could have caused her stroke, and should be treated with preventive anticoagulants to keep another stroke from happening. Good luck. It is so nice you are advocating for her.

     
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