Tag Archive | Musculoskeletal Disorders

I Have Lupus: Should My Child Be Tested?

To test or not to test? Here are several reasons that research doesn’t support testing of all children born to mothers with lupus.

Approximately 25 % of children who have mothers with lupus will test positive for ANA (antinuclear antibodies). But, most of these 25% NEVER develop lupus. Just imagine the unnecessary lifetime of anxiety that these children and their parents would face if they tested positive-and then never developed lupus.

The opposite can be also be true. If children born to mothers with lupus tested ANA negative, they and their parents might develop a false sense of security about not developing lupus. The fact is, they can become ANA positive at any time in their lives. This could cause them to completely ignore symptoms.

Possibly, the better way to deal with the testing concern is for these children to learn the symptoms of lupus and also learn what the common triggers are. If a child is strongly enough genetically predisposed to the developing lupus, keeping the child in a ‘bubble’ isn’t going to prevent the onset of lupus. But knowing environmental triggers can give new meaning to ‘forwarned is forearmed.’

  • They ought to be urged to avoid unnecessary treatment with antibiotics, particularly those with Sulfa or Penicillin bases (like Bactrim™ or Septra or Penicillins)

  • They should be taught to wear sunscreen, in all seasons.

  • Speaking of sunscreens, they should never use tanning booths and should minimize direct exposure to the sun

  • Their diets should be right in Omega-3 fatty acids

  • After testing that their vitamin D levels aren’t high, they should take daily supplements of this vitamin because of the essential role that Vitamin D plays in immune and bone health, as well as in the cell itself.

  • exposure to ultraviolet light (UVA and UVB)

  • avoidance of certain medications (Drug-induced lupus) like estrogens (in the presence of antiphosphoiipid antibody syndrome), Apresoline, procainamide (often used for irregular heart rhythms), and isoniazid (used often for treatment of tuberculosis

  • cigarette smoking is hard enough on a pregnancy, but for a person with lupus who may have antiphospholipid syndrome, the pregnancy has greater risk.

 

 

 

 

 

 

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“You’ve got lupus!”

“I feel like I’d been kicked in the chest by a horse,” were the EXACT words I used to describe what I was feeling to my doctor. He ran every test known to God and man, and then a few more, and still came up empty-handed. Then one day, he had a suspicion of something, ran an EKG confirming an incredibly fast heart rate, my respiratory rate was fast, and my chest x-ray only confirmed what he suspected. I had a pleural effusion; from what he didn’t know, but the instructions were, “meet me at the hospital, do not go home and dilly dally and pack a bag, do not pass ‘go’ do not collect $200! I think you get the gist that he felt that my getting to the hospital was urgent!

Yes, I had a pleural effusion and I don’t know how much fluid was removed from the lining (pleura) of my lungs. Some of that fluid was cultured and from that the docs received their diagnosis. You have lupus. I didn’t know it, but my life had changed.

That’s how I received my diagnosis, and you? I’d love for you the share, with me and others who read here, how you received your diagnosis and what symptoms you experience most.

There are so many ways in which lupus manifests itself and in this post, we’ll concentrate on lupus involvement of the lungs. Patients may develop pleuritis, the most common manifestation of lupus in the lungs. Pleuritis is inflammation of the pleura, the external lining of the lung.

The most common symptoms of pleuritis are shortness of breath and a SHARP PAIN ON INSPIRATION. Sometimes, fluid accumulates in the pleura: pleurisy; also a very painful condition found in @ 50 % of patients with lupus.

Another condition, PNEUMONITIS is an inflammation of the lung tissue itself; inflammation that doesn’t involve the pleura. This only makes sense, because lupus is a disease of inflammation.

The cause of pneumonitis is often bacterial or viral or fungal, but most commonly bacterial or viral. When someone has pneumonitis and their lung tissue has accumulated  fluid and the lung cells exude this fluid, the condition is called pneumonia. The fluid is usually called phlegm and contributes to the signs of pneumonia.

Vasculitis is an autoimmune disease affecting the blood vessels.  When vasculitis causes lung problems, it is because the inflammation involved in vasculitis, ‘cuts off’ necessary blood supply (and blood carries oxygen and nutrients) to the lungs.

Multiple sclerosis is an autoimmune disease that affects lung function: the muscles involved in respiration are weakened and because of this weakness of the lung muscles, pneumonia is common in multiple sclerosis patients.

Because lupus patients are often immunocompromised, either BECAUSE THEY HAVE LUPUS, or for treatment they receive for their lupus, lupus patients can develop fungal infections of the lung and tuberculosis.

Pulmonary hypertension is another manifestation of pulmonary involvement of lupus as is Shrinking Lung Syndrome. Both involve considerable shortness of breath. For these two complications of lupus there is treatment, but not cure.

There are more pulmonary manifestations of lupus AND of autoimmunity but space limits me to coverage of the complications I have noted.

Bronchi, bronchial tree, and lungs.

Bronchi, bronchial tree, and lungs. (Photo credit: Wikipedia)

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The immune system-in a nutshell

This is one of the best treatments I’ve ever seen of the immune system. It’s lengthy (well, 60 pages isn’t REAL long, it’s NOT “War and Peace!!”) , so I’ll just post the link. This coverage isn’t intended to be “all you ever needed to know about the immune system” nor does it replace your rheumatologist IN ANY WAY, but this is a good primer, a good and reliable resource that provides a good understanding. In fact, it’s entitled, “Understanding the Immune System” and it’s not a hard read. Moreover, IT’S FREE!!

http://www.niaid.nih.gov/topics/immunesystem/documents/theimmunesystem.pdf  , a publication by the National Institutes For Health. Most of us have an idea how the immune system works, and in our particular disease (in this case, lupus) what goes awry to cause the many side effects that we experience..

So, again, the link is http://www.niaid.nih.gov/topics/immunesystem/documents/theimmunesystem.pdf

 

 

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Lupus and autoimmunity in 2 minutes

This is your time to explain, to give an answer family and friends who comment, “But you don’t look sick!”  Your teaching time is likely to be brief, so I found the following video to explain what I can’t in a short time. Not only does it explain that happens in lupus, but it also covers symptoms.

Medications Used in Lupus Treatment (everydayhealth.com)

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Living with Fibromyalgia: Part III

Hello, again! If you haven’t read Parts I and II, you may wish to before you continue.  

I want to start with answering the question: What pain relief intervention helped me the most over the long term? One word, therapy. In the midst of my seventeen-month ordeal of crises (Part I), I got the idea from a nursing student of mine when we were talking about a psychiatrist who specialized in psychopharmacology, the branch that focuses primarily on chemical interactions with the brain.

Since I’d already tried several pain medications and knew that an imbalance of neurochemicals (particularly serotonin) could be contributing to my pain, I decided to see this physician. I failed to mention that during that period of multiple crises, two people close to me died, one being my mother who passed away two days after our party for our mutual birthday. In addition to pain at that time, I was tired and teary and recognized I needed more help than my internist could give me. I had selected this internist because my insurance plan had changed and did not cover my initial rheumatologist.

The psychiatrist worked with me on medications, but then gave me a referral to a therapist. Me? See a therapist? Yes, me, the teacher of mental health nursing. I went for the workup, thinking I would be merrily on my way after a few visits.

But, having over fifty years of life behind me, I had a lot to discover, cry about, and work through. Once, the therapist said, “I have clients who have gone through much less than you have, and they’ve taken a leave of absence from work.” I quickly reassured him that nurses always show up. We do not call in sick. Ever.

After dealing with my past history, I couldn’t let go of him as a supportive sounding board. And here is the reason why staying in therapy was so helpful. I could unload my yuk stuff in his office, learn more about myself, and spare my husband and family much of my frustration of trying to act normal at home and work when I was tired, in pain, and having trouble sleeping. In fact, my grown kids often say yet today, “Mom, you say you’re having pain, but we don’t see it, so it’s hard for us to appreciate how bad it really is for you.”

In April of 2003, I wrote in my journal: “Owned up to having FMS in therapy session yesterday.” It took me that long, from 1997 to 2003, to fully accept my diagnosis. I could finally move on. But it took until February of 2011 to give up trying to get rid of my pain. I’d tracked down the rheumatologist who diagnosed me in 1997 and, after she’d treated me a few months, and after I was sleeping much better and my hot poker pains had reduced from a 10 to a 4-6, she said to me, “Lois, This may be as good as you get.”

Suddenly, I felt a sense of relief. I could stop running after a cure. I could learn how to live with a pain level hovering around 5.

I am not recommending any treatments for you, but I want to tell you what works for me now to keep my fibro flares under control. Five simple guidelines:

     1. Say no (to doing anything that is not necessary for living or does not interest you).

     2. Move more (to wipe out the opportunity for feel-sorry-for-myself sedentary days).

     3. Eat fewer white sugar/flour foods (to increase energy and decrease fibro fog).

     4. Pace activities (so you can enjoy what you do without spending a day in bed in between).

     5. Use distraction techniques (to confuse the pain signals in your brain, letting you forget the pain when you’re focusing on something fun). 

Being retired, I feel blessed that I have control over my time. Plus, I’m thankful to have a supportive family. I can do most everything I want to do. I’m thankful each day that I can walk, talk, see, hear, and write. And eat! I just don’t do anything too long or too fast or too often. But I do, do. And I sincerely hope and pray, if you are in a painful place, you can experience a goodly measure of relief too.  

Informational Resources:

www.FMaware.org

www.fmnetnews.com

www.nim.nih.gov (Search “fibromyalgia)

www.rheumatology.org (Search “fibromyalgia)

***

I want to say thank you to Annie for giving me the opportunity to guest post on her blog. My writing group has encouraged me for about ten years to chronicle my FMS story, so blogging for Annie motivated me to sit in the chair, finally, and get this summary down on paper and out of my head.

And thank you, readers, for following along! You’re welcome to visit me at my blog: loisroelofs.com

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Resources For Learning

PatientI think that one of the very first things that most people do when they discover that they may have a disease such as Systemic Lupus  Erythematosus, SLE for short, is to look for more information. They want to know what the symptoms are, how they got it, what is the treatment, is it fatal, is there a cure, is it genetic, and what can I expect in the future? All of these questions that they quite often forget to ask their Doctor.

There are plenty of places on the web to find information, but sometimes what you find is simply overwhelming, and you don’t know what is true. And believe me, there are plenty of scam artists out there trying to sell you a quick cure. Some of them even have an M.D. behind their name.  The Alliance for Lupus Research has a good list of links  and resources available that is worth taking the time to check out.

Here are a few of the links that they have listed:

Resources are always a valuable commodity. Medicine changes constantly and it is helpful to know what is going on in regards to research. Please visit their site if you would like more information about them and to find additional resources that they have listed. What I have above is just a few of them. Alliance for Lupus Research

Please always take the time to check with your own Physician about any information that you find, as well as where you find it. If you have a link and you find something new, you might even be helping them out. But never rely totally on online sources for your information. There is one thing that one of my nursing instructors always drummed into our heads, “the patient didn’t read the book.” What she meant by that is that every person is an individual, not everything works the same way one everyone. If it did there would not be the need for such a wide variety of treatments and everyone would have the same symptoms. I am sure that you have realized by now that you are unique. Please don’t assume that what works in a research setting will necessarily work for you. But do take the time to further your education. Knowledge is power!

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