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Thread: Coping With Lupus

  1. #1
    Join Date
    Nov 2001
    Victorville, California
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    Default Coping With Lupus

    Coping with Lupus
    Suggestions on how to cope with Lupus from NorthEast Lupus Foundation:

    Become well-educated about lupus.
    Rest is most essential. The fatigue is not like the fatigue or tiredness from physical exertion.
    Try to prepare for the up-and-down nature of the disease. Plan alternative activities, alternate time schedules. Allow time for extra rest.
    You can reduce fatigue by developing priorities and learning to pace your daily activities. Break down big, long-term goals into small, manageable steps that can be accomplished in short amounts of time.
    Be open with family and friends about the unpredictable pattern of lupus, and how the disease affects you.
    By listening to your pain as a signal, you can begin to control it.
    Find positive ways to channel such negative feelings as anger and depression. Sometimes anti-depressants are given to lupus patients because they really do help with the emotion and pain, not just to placate the patient or to imply that the problem is psychological.
    Try to accept the things you cannot change, rather than feeling constantly frustrated and upset over situations beyond your control.
    Remember that stress, depression and pain are all closely connected and each affects the other. If you can, take steps to solve any one of these problems so as to reduce the extent of the others.
    Approximately 1/3 of lupus patients are photosensitive. Avoid direct and prolonged sun exposure and ultraviolet light from artificial sources (e.g. fluorescent lights). Wear broad-brimmed hats and cover other exposed parts of the body when out of doors in sunlight and use sunblock (not sunscreen) creams.
    Although lupus doesn't directly affect the body's capacity for sexual enjoyment, the disease can cause problems. Open, honest communication is necessary to overcome this.
    If lupus has limited your hobbies and activities, find new ways to use your skills.
    Ask for help if you need it. Family and friends, doctors and other health care professionals together with your national and local Lupus associations are all sources of help and support.
    Join your local support group and make friends with others who have lupus.
    A Note about Support groups: Support groups, whether on-line or in "real life" are not always right for every person. Most are dynamic and therefore from one meeting to another may be either negative or positive. If you are not getting what you need out of a support group, keep looking for other sources of support. Support is one of the most critical aspects of coping with Lupus.
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    Some Products That Can Make Our Lives a Little More Comfortable

    The following do not include supplements or any form of alternative therapy but are strictly mechanical/material devices that some find helpful in coping with symptoms of Lupus or related disorders. These products are not endorsed by the Lupus Foundation of America and no financial compensation is made to the authors of this document. Resources for many of these products can be found under Products That Help

    Here are some general recommendations/opinions from many patients about such products:

    It must be noted that many of the products that are so helpful to us, are also rather costly compared to "store brands". However, in most all cases, these products last longer, and serve a greater purpose than store brand products do.

    Sun protective clothing: These are items made of materials or special weaves that help reduce the amount of UV that would otherwise pass through everyday clothing. Most of the sun protective materials are very lightweight and quite comfortable (not binding, clinging or scratchy). Although not all patients will experience photosensitivity, it is recommended by most doctors that patients with autoimmune disease avoid overexposure to UV light.

    In addition to clothing made to be UV protective, RIT has created a substance (Sun Guard) that you wash into the clothing you already own that also provides a UV barrier.

    Polartec® Fleece: Polartec® Fleece (Malden Mills) is the warmest, softest fleece available. It doesn't pill like cheaper fleeces do and it is also wonderfully light. There are many retailers using this material. Land's End probably being the best known.

    Flannel sheets: Many members of ASL use high-end Flannel sheets for warmth and comfort. Some of the retailers mentioned are; Neiman's, The Company Store, Land's End.

    Socks: Especially for those of us with Raynaud's or plantar fasciitis, socks and shoes can be critical for avoiding discomfort. Shoes are very much an individual preference but socks have almost universal requirements; softness, cushioning, warmth. KC has found Thorlos to be very soft and well cushioned as well as very durable. Though these are not cheap, they last longer and retain their comfort much better than ordinary socks. Thorlos are available in many stores and through many online sites.

    Another sock type available is the seamless sock. A website is given below in Section V. Seams and tags can often be very uncomfortable for patients. Other support socks can be helpful for Raynaud's symptoms, Diabetic foot problems, etc.

    Back/Sleep Support: Many of us find that body pillows or wraparound ("U") pillows can alleviate some of the pain that is common in SLE or Fibromyalgia. Again, some sites are listed below in Section V.

    Ergonomic Work spaces: or play spaces for that matter. Any repetitive task requires comfortable positioning. (okay guys, get your minds out of the gutter!) Some find that rollerball pointing devices (rather than a mouse) is easier on them while using a PC. Others will like the ease of use of a tablet/pen interface to their PC (KCD: I use a Wacom product). Keyboards that are comfortable, voice input software/devices, and ergonomic seating can make the work environment bearable or even pleasant. For someone who has trouble typing, digital notepads similar to those used in PDAs (such as Palm Pilot) are also available.

    Cosmetics and Sunblocks: The skin is often very sensitive in lupus not to mention the rashes we must contend with due to the disease and/or UV exposure. It is helpful to have a sunblock that works for you, cosmetics that do not irritate the skin, and lotions that are soothing.

    KCD: A personal favorite is Shea Butter - a balm made from an African nut. It goes on a bit oily feeling but rapidly soaks in. In its cold pressed form it is usually grainy but can be melted in a microwave (don't forget to remove the foil seal - yes, KC arced her microwave) and then frozen. After melting and freezing it is solid and much smoother and still as effective. It can be rather expensive but a brand is given below in Section 5 that is very reasonable. Aside from its excellent moisturizing properties, it has virtually no smell to it all which can be important to some of us. (this of course assumes you buy a completely pure product and not one that has additives).

    Various: Fallene's Total Block is preferred by a lot of lupus patients. There are various forms but the two most common are the cosmetic blend type that can be tinted to suit your skin and used as a foundation and the colorless type that goes on clear as a sunblock only. The SPF is 65.

    KCD: Skinceuticals SPF 30 is good if you want sunblock and moisture without perfumes or other irritants. This is the only skinceutical product that does not have vitamins (at this time) so it is unlikely to irritate sensitive skin.
    Look For The Good and Praise It!

  2. The Following 2 Users Say Thank You to Saysusie For This Useful Post:

    charli572007 (03-10-2012), Ellie Hansen (03-08-2012)

  3. #2
    Join Date
    Feb 2008
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    Default A message for Leaf

    Hi Leaf,

    I just wanted to be sure that you know that I moved your post from here, into the general area of Lauri's Lounge, and gave it it's own topic so you will get more responses. If you already know, then disregard this message. I hope you are having a better day today.



  4. #3
    Join Date
    Oct 2010
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    Yet another thing for me to add to that lupus list. I know I can't go into it here, but that pesky sexual thing. Pain sure can be a show stopper

  5. #4
    Join Date
    Sep 2010
    St. Louis
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    I won't expand on this much either, but it's comforting to hear others mention that their sex life has been very affected by Lupus. I may have to limit my dating opportunities to parapalygics just to take the sex factor out!

  6. #5
    Join Date
    Jan 2011
    Thanked 1 Time in 1 Post


    i can totally second what you say there, i cant remember the last time my husband and i were intimate as such, a hug is the most we do. i am lucky that my husband isnt that worried about that side of things. but it does make you feel inadequate sometimes. i have a major fall where i hurt my nose and blacked my eyes and did both arms in and my husband has almost become my slave, i feel awful about this even though it was an accident, i cant wait until my arms get i can do abit more. take care bye astrid40

  7. #6
    Join Date
    Feb 2011
    Thanked 366 Times in 316 Posts


    Well my husbands golden and like astrid40 between me and my hubby now adays it's mainly hugs, what a life it brings you to.

    A good many men and women would say BYE BYE

  8. #7
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts



    I wanted you to know I started your own thread in the symptoms sections because more people will see it that way. I titled it "falls" so you can know what you are looking for. If you click on the "what's new" tab at the top of the page (toward the left side) it will show you all posts made since you we're here last.

    welcome to WHL!!

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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