New topic for Lupus questions and conversations

LupusMCTD ™

Edited Wed, Dec 19, 2007 3:10 PM

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Dealing with the day-to-day symptoms of lupus seems like a simple thing, especially when you compare it to the larger picture of trying to keep the disease process down to a minimum and avoid organ and system failure. However, even the largest, sturdiest rock can be worn down in time with the constant drip of the tiniest amount of water. In this same way, the constant drain of our resources by the “minor” symptoms of lupus can wear us down and keep us from enjoying life, even if we don’t have a “serious” case.

Joint Pain Joint pain is one of the most pervasive and debilitating symptoms of lupus and other autoimmune diseases. It limits our mobility, adds stress to our daily lives, forces us to alter our lifestyles, and takes away our ability to enjoy the simple pleasures of pain-free movement.

A few of the most common joints affected by lupus include those in the hands, wrists and fingers, the knees and hips. The most common symptoms are severe pain with “burning,” “scratchy,” “hot” and “aching” sensations. This pain limits the ability to move the joints, which can lead to stiffness and the atrophy of the muscles of the affected joint. In severe cases, deformity can result from the inflammation, the muscle atrophy and the stiffening of the joint.

Many of the medications that we take are specifically to reduce the inflammation that we suffer in our joints. Many lupies are finding relief with the newer arthritis medications that are available by prescription, as RA and joint involvement in lupus are very similar ailments. Physical therapy and regular, gentle exercises also help promote mobility and keep our range of motion as wide as possible. Many of us also find relief using heat packs, ice packs or topical analgesics like BenGay or IcyHot.

Hair Loss Hair Loss: It’s not just for your husband anymore! Hair loss (alopecia) is one of those symptoms that doesn’t bother doctors very much, but can cause sleepless nights and hectic mornings for lupies. Sometimes the hair loss is generalized and we suffer from thinning, easily breakable hair. Other times, we lose hair as a result of the discoid rashes, leaving patchy, red, scaly bald spots anywhere on our scalps. Either way, it can be traumatic and extremely bad for our self-images!

A good dermatologist can offer a ray or two of hope for those of us suffering from alopecia as a result of lupus. Topical minoxidil (Rogaine) can help stop generalized hair loss and even promote regrowth. Women can especially see good results with the use of this, but it’s not for everyone, especially if you have a history of heart problems. Talk to your rheumy or dermatologist about it. There are also medications that help reduce the scarring and patchy hair loss from the discoid rashes.

A good hairdresser can be a lifesaver. See if you can find someone who has experience with lupies and hair loss. It may simply be a matter of finding the right styling products, along with the right haircut in order for you to have a "good hair" day. Don't rule out the use of hairpieces and wigs, either!

Mouth and Nasal Ulcers So many of us suffer from these nasty ulcers. They can range from painless to annoying to severely painful, and can even interfere with our ability to eat, causing nutritional problems.You may even have nasal ulcers and not know it, so make sure that your doc inspects your nose with an otolaryngoscope when you have each exam.

One of the best relief methods for these painful sores is the use of B vitamins. Many lupies swear by taking a daily dose of vitamins with a complete B-complex, stating that they get relief within a day or two. The use of topical medications can also be helpful such as Blistex and Baby Oral Jel.

Malar and Discoid Rash The rashes that are so prevalent among lupies, and that so many docs use to help diagnose us, frequently get noted in our records, and then ignored. An unpleasantly common experience for us lupies is to have someone (sometimes a complete stranger!) say, “Oh, wow! What happened to your face?” Just look at a picture of me a few years ago to what my skin on my face looks like now ;(

The rashes can be indicative of a flare, so getting in touch with your doc as soon as you notice the beginnings of one starting is very important. They also have a tendency to show up after sun exposure, exposure to irritants, or stressful situations. You can help reduce them by avoiding the sun and fluorescent lighting, using hypoallergenic makeup, avoiding products with excessive perfumes and additives, and avoiding anything you might be allergic to (such as animal dander or certain foods). The use of a sunscreen every day (SPF 15 or higher) can help reduce the amount of UVA and UVB light that you are exposed to.

Once you have the rash, your dermatologist  can offer a variety of helpful medications to treat them. Topical and oral steroids are frequently used, along with other treatments. Some rashes respond well to medications that are commonly used to treat other skin disorders, like rosacea or psoriasis. It may take a while to find what works for you, but don't give up!

Raynaud’s Raynauds This rare and painful symptom of lupus is a syndrome in its own right. Raynaud is the name given to the circulatory problem characterized by the loss of blood flow to the extremities—most commonly the hands and feet. They usually turn white or blue and feel “cold,” then, as the circulation is restored, they turn red and may hurt, throb and/or swell.

Since one of the main characteristics of Raynaud’s is the temporary nature of its duration, it is often overlooked by physicians, unless permanent damage is done to the tissues. Here are some preventive maintenance and helpful hints if you suffer from this symptom:

Avoid the cold Keep your skin clean, supple and dry Avoid smoking and caffeine not this caused me to have my first artery stent in at age 43 yrs. Followed by another stent 2 years later If an attack starts, take steps to gently warm your hands by tucking them under your arms, running them under warm (Not hot!) water, wiggling your fingers and toes, and making wide circles with your arms *

~Fever Although fevers are usually nature’s way of ridding the body of infection, the human body is not designed to stay in a state of constant inflammation. This is what happens in the lupus patient, and the result can be persistent fevers. Running a low-grade fever for a lengthy period of time is extremely wearing on the body and drains the energy from someone who doesn’t have a lot to spare in the first place.

You can help reduce the discomfort of fevers by taking NSAIDS wearing light, absorbent clothing in layers, increasing your fluid intake,which also helps keep your kidneys functioning at peak performance. and the use of cool/cold compresses to the head, neck and pulse points (Wrists, inner elbows, groin and behind the knees).

Even if we’re told that our symptoms are “minor” and that we have a “mild” case of lupus, there is no reason that we should suffer needlessly! Do whatever you can to help relieve your symptoms, and don’t be afraid to discuss anything with your doctor, no matter how trivial it may seem. You may be surprised to learn that you’re not alone, and that there is something that you can do about it!

Edited Wed, Dec 19, 2007 2:03 PM Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients

I look normal, as I have an "Invisable Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.~Kathy A Walters

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