Lupus Transformation

This lupus transformation through cocoons of pain is hard. You can’t deny it and you can’t ignore it. You can only understand that this difficult but beautiful metamorphosis will create a strong butterfly of change, power, bravery and strength in you.

Originally posted on Lupus In Color:

#LupusInColor

Explaining Lupus to Just About Anyone How to Explain Lupus to Family,Friends, Colleagues, Children and Acquaintances

Explaining Lupus to Just About Anyone How to Explain Lupus to Family, Friends, Colleagues, Children and Acquaintances thank  you to  Brenda Campbell.  And  the upus-upus-effect.com.com  for this wonderful information.   I would also recommend for you to sign up for their emails. They have with the kids to help you manage your own. 
Explaining Lupus to Just About AnyoneI know we’ve all heard it. Those five little words of no more than three or four letters each. “But you don’t look sick.”

Lupus is one of those “invisible” illnesses. Most of the damage caused by this mysterious, chronic illness is internal. Certainly, there are external signs at times – hair loss, instability, skin rashes, and in my case, the constant companion of an oxygen tank. However, this external damage is only a fraction of what is really going on inside.

As a result, explaining Lupus is not an easy task. I know that if I share all of the symptoms and complications I have, many people will think I’m exaggerating – especially if it is thrown out there haphazardly or in a disorganized fashion. I have felt judged on more than one occasion because so many of my problems cannot be seen from the outside. I’m sure we have all experienced that at one time or another – but it doesn’t change the reality of what lupus is and what lupus does. The support of others – and their acceptance – is something we all need.

I can recall several instances when I have matter-of-factly told people of my condition only to discover that they have never heard of lupus. And those that have heard of it often do not understand it.

Lupus is not easy to define. There is no clear-cut description of what it is or what it does because it can attack so many different body systems that no two people have the exact same lupus. It has many different faces and presents itself in many different ways. It continues to evolve and change. It seems that once I get a handle on it, something new pops up.
Honestly, one of my biggest fears is that people will think I’m ‘shopping for sympathy’ or ‘pity-seeking’. This is simply not the case. But, I do want people to understand because it affects what I am able to do. My abilities can change on a daily basis – good days, bad days, really bad days, times when I’m flaring on maximum overdrive and times when I almost seem ‘normal’ – if there is such a thing.
I have found myself needing to explain Lupus in a variety of settings: with family and friends, to my third grade students, and even in social or professional situations. Each explanation may look different depending on who the audience is, what they need to know, and why they need to know it. I would like to share what it might look like in each of these scenarios. It’s never easy, but with a plan of action tailored to fit a variety of circumstances we can be prepared to explain our “individual” lupus accurately, concisely, and authentically.

The disease is referred to as “lupus,” the Latin word for “wolf.” When lupus was just beginning to be recognized as a medical disorder, it was thought that it was caused by a wolf bite – probably because of the distinctive symmetrical red or purplish scaly rash that at least half of those with the disease develop on their faces, also referred to as a “butterfly rash.”
Lupus is an unpredictable and misunderstood disease that attacks different parts of the body. It is challenging to identify, tough to live with, and an obstacle to address and treat.
Lupus is an autoimmune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue. This causes symptoms such as swelling and inflammation, and damages the joints, skin, blood, heart, brain, kidneys, lungs, bones, nervous system, etc. Lupus can attack any organ or part of the body.
When the immune system is functioning properly it makes proteins called antibodies in order to battle and safeguard against antigens such as bacteria and viruses. With lupus the immune system is not able to tell the difference between antigens and healthy cells. This leads the immune system to attack healthy cells – not merely antigens – inducing swelling, discomfort, and tissue damages.
According to the Lupus Foundation of America (LFA), 1.5 to 2 million Americans have some form of lupus. The disease has an effect on both men and women, however, women are diagnosed 9 times more often then men. Lupus is usually diagnosed between the ages of 15 and 45.
Other risk factors include exposure to sunlight, some prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.

ALL TREATMENTS

Originally posted on Lupus In Color:

All treatments will be different for every lupus warrior. Lupus warriors, make sure you don’t put one another down because you chose a different route to treat your lupus. We need to be each other’s support not each other’s nemesis. It’s important to share, but it’s just as important to understand that everyone’s treatment will be different and that everyone will need to do what works for them.

What to Do About Lupus Hair Loss

What to Do About Lupus Hair Loss By lupus ny

Most people don’t even notice the 50 to 100 strands of hair that they usually lose every day. With systemic lupus, the situation can be very different, with the loss of hair much more dramatic and noticeable.

 

Lupus hair loss can be caused by the disease itself, as the immune system destroys hair follicles, or by medicines such as prednisone and immune system-suppressants—in which case hair loss often stops once the medicine is stopped.  Hair may fall out in strands, or in clumps with the slightest pull, and sometimes it just thins out and gets very fragile and breakable.

  
If you are among the half of all people with systemic lupus who struggles with this problem, here are some ideas about what you can do about it:

Action steps

Losing hair can be scary, but it’s usually treatable and often can be covered up. It may take a while for hair to grow back—sometimes 6 months or more—but eventually it usually does unless it’s caused by skin (“cutaneous”) lupus that leads to a “discoid rash.” (Patches of thick and scaly red “discoid” rash can scar hair follicles and cause lasting hair loss, so be sure to talk to your doctor about your options if these develop. “Alopecia” is the medical term for hair loss.

For most hair loss, you aren’t powerless! Here are some strategies to try:

Refresh your hair style. Ask a hairdresser for ideas to cover up bald spots. To make hair look thicker, try a cut that layers. When blow drying, try lifting hair up and away from the head. Or ask about dying hair to cover up bare scalp that otherwise might show through.

Consider hair extensions. If you still have some healthy hair and are just missing some patches on the sides (not the top)—and aren’t actively losing hair—consider hair extensions. Pre-made and custom-made extensions are available, and different ways to attach them (sewing, knotting, or adding in through tiny links are often best to avoid contact with chemicals, adhesives (glues) and heat.

Try a wig. These days wigs are so well-made that most people can’t tell you have one on. To start take a friend to just look around. You may well feel a lot better when you see what options there are!

Experiment with hair wraps, scarves, bandanas, accessories—tips are on the Internet! Enter “hair loss” along with the term “wrap,” or “scarf” in Youtube.com and you’ll get more free video demonstrations and ideas than you can handle!  

  
Last resort: cosmetic surgery. For extreme and permanent hair loss, stretching the remaining hair to cover what’s been lost may be an option, or even transplanting hair from another part of the scalp.

If you have lupus and are losing hair, do NOT experiment with over-the-counter hair loss treatments. Talk to your doctor about treatment options.  

What’s NOT to blame for lupus hair loss? 

While it’s only common sense to avoid harsh chemicals or even very tight braids that pull on your scalp, you can’t really blame serious hair loss on a lack of vitamins, washing your hair a lot, or using hair colorings or other common hair products. Some hair loss follows the pattern that your mother or father experienced as well, and is totally normal.

FIVE EMPOWERING HABITS

Originally posted on Lupus In Color:

Five Empowering Habits of the Lupus Warrior

1. Complain less and applaud more – Just because you are fighting a hard battle, you make a conscious choice to complain less about the fight and applaud your effort more to overcome the trials of lupus.

2. Speak well over yourself – Speaking to yourself in empowering ways removes the desire to stay still in the pain lupus brings. It also conditions your brain to see the brighter side instead of the hill you are climbing.

3.Be selective in your talk of your battles – Every battle that lupus puts you through is not worthy of discussion with yourself or others. Sometimes the lupus warrior just has to fight and not talk to stay focused on the win.

4.Understand it’s a bad day not a bad life – Lupus brings many difficult days, it doesn’t mean your life is worthless. It simply means you have to put on your battle gear and fight. After all, you’ve won every battle so far, that’s evident in the breath you just took.

5. Value yourself above all lupus issues – Yes, parts of you are broken, but that doesn’t mean you as a whole are broken. Lupus can damage your body, mind and spirit so, its up to you to work hard in keeping strong and keep high value in self worth. You are a warrior that never quits, say it to yourself daily and the warrior will see and focus on your strength, bravery, faith and love beyond anything lupus can bring.

#LupusInColor

About Lupus

Another name for lupus is also called: SLE, systemic lupus erythematosus Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

There is a bout 200,000 to 3 million US cases per year. so you are not alone.The good thing is that lupus is Medically manageableYou and your doctors can find medical treatments that can help or ease your symptoms.
In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

These are some additional facts about lupus that you should know:

Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.

Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.

Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.

Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

Some research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.  More than 16,000 new cases of lupus are reported annually across the country.MIt is believed that 5 million people throughout the world have a form of lupus.

Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.. Most people will develop lupus between the ages of 15-44.

Women of color are two to three times more likely to develop lupus than Caucasians. People of all races and ethnic groups can develop lupus.

When you are diagnosed with lupus you will most likely have to change your Lifestyle. Such as if you are big on spending a lot of time outside in the middle of the day. You may need to make some changes. Such as going out more in the early morning and evening.

Sunscreen Will now be your new best friend. And your must have. You should apply sunscreen do any part of your body that will be exposed to the sun every day. Most people would only apply sunscreen in the summer. But those with lupus must wear Sunscreen year round. Because you skin is more sensitive  to the sun.. 

If you’re planning to go out during the middle of the day you should consider wearing  Sun protective clothing,  such as a large hat. To shaved your face.

Lupus can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs.

Symptoms vary but can include fatigue, joint pain, rash, and fever. These can periodically get worse (flare up) and then improve.

Treatment includes a variety of medications such as steroids and disease-modifying antirheumatic drugs (DMARDs).

People may experience: Pain: in the muscles, can be sharp in the chest, can occur while breathing. Whole body: anemia, fatigue, fever, or malaise. Hair: hair loss or loss of scalp hair. Psychological: anxiety or major depression.  Skin: red rashes or scaly rashes. Mouth: dryness or ulcers.

Also common: acute episodes, blood in urine, face rash, headache, joint stiffness, raynaud’s syndrome, sensitivity to light, swelling, water retention, or weight loss

Ages affected 0-13 Very rare  – 14-18 Rare  19-40 Common 41-60 Common. Genders affected  Males Rare Females Common

Prescriptions : Antimalarial: Chloroquine Steroids: Methylprednisolone by injection (Solu-Medrol) or by mouth (Medrol), Prednisolone (Orapred) Other treatments: Cyclosporine, Hydroxychloroquine (Plaquenil), Methotrexate (Trexall), Belimumab by injection, Azathioprine (Imuran), Cyclophosphamide by injection or by mouth, Prednisone (Deltasone)

Specialists; Rheumatologist: Specializes in arthritis and other rheumatic diseases. Cardiologist: Specializes in heart disorders. Pulmonologist: Treats respiratory tract diseases. Nephrologist: Focuses on kidney disorders.

Weight Gain and Lupus.

Weight Gain and Lupus.  On ctlupus.wordpress.com

Many lupus patients are prescribed Prednisone, a steroid that calms the immune system. Unfortunately, Prednisone comes with some side effects that lead to weight gain. Many patients experience an increased appetite and fluid retention, which makes the face and other body parts appear puffy. Here are some tips to combat these side effects and avoid weight gain.

A Healthy Diet is Everything: For lupus patients when exercise can be difficult, a healthy diet is essential to keep your weight in check. Make sure you’re eating enough fruits and veggies and stick to low fat proteins such as fish and chicken.

Keep a Food Diary: Writing down what you eat every day makes you more aware of what you’re putting into your body. By doing so you are more likely to stick to your healthy choices!

Plan What You Eat: Since steroids increase appetite, avoid overeating by following a schedule. Plan what you eat in advance and focus on smaller meals 3 to 5 times a day.

Exercise if it’s Right for You: If you are able, exercise is also a vital part of any healthy diet. Talk with your doctor about a program that works for you.

Almond Banana Loaf Recipe

Originally posted on One Step At a Time:

I’ve gotten a lot of positive response from my first recipe so I decided I’ll post them more often then once a month!

This week I’m sharing a very tasty, simple banana loaf recipe that I chose to make into mini muffins to have with my breakfast. You can also make these into healthy cupcakes with avocado icing that I’ll list below! :)

Ingredients:

• 2 ripe bananas
• 1 heaping cup of almond flour
• 1 1/2 tablespoons of raw honey
• 3/4 cup slivered almonds

Directions:

• Preheat oven to 350 F and lightly oil non stick pan
• In a large bowl, mash bananas
• In a separate bowl, whisk together eggs and add flour and honey
• Stir together almonds and mashed bananas
• Pour mixture into pan and bake for 25-30 minutes

Make into cupcakes with this chocolate avocado mouse icing!

• 1 tablespoon of organic raw cocoa powder
• 1 avocado
• 2 tablespoons or organic agave
• 1 tsp of raw honey
• I added 1 tablespoon of cashew milk to make it a little lighter, but this step is optional!

Directions:

• Using a blender or food processor, blend the avocado until it is smooth
• Add choice of milk(optional) cocoa powder, agave and honey
• Whip until it reaches mouse-like substance

Enjoy! Much love, Julia

Part 1: How to Read Your Lab Test: Urine

Originally posted on bloggingwarrior

As a patient with a chronic illness  your doctor will collect many tests from you. One of them is a urine (pee) test. It is painless but peeing in the cup can be a bit awkward. Some questions that may go through your mind are: “Why is the doctor running this test?” and “What information are they getting from this test?” According to Webmd.com a urine test is done “to check for a disease or infection of the urinary tract…and to check the treatment of conditions such as diabetes, kidney stones, and a urinary tract infection (UTI), high blood pressure (hypertension), or some kidney or liver diseases.” The doctor may not think you have any of the physical issues listed above but may order the test as a part of routine lab work just to be sure there is nothing ‘brewing. It is important to note that each lab has a ‘normal range.’ This range will vary from lab to lab. When reading labs look at the range for that lab. These ranges will be listed next to your values. There are 10 common lab tests. They will be listed below with a short explanation.

Specific Gravity (SG)

There is not a normal or abnormal value for this test. Rather, it just lets the health care provider know how concentrated the urine is. SG ranges from 1.000- 1.035. 1.000 have a  very concentration and 1.035 being more highly concentrated. This is important to your healthcare provider because if they are looking for something like protein in the urine (commonly found with kidney issues in lupus patients) a concentrated sample would give them the best sample.

pH

A pH is measured on a scale from 0-14. In urine your normal lab values will vary between 4.5-8.0 (I’ve seen lab values that go up to 9.0). A value of 4.5 means that the urine is more acidic and a 9.0 would mean that the urine is very alkaline. It is important to note that these values will vary based on the time of day. The pH is important because the kidneys help maintain the body’s acid-base balance (pH). When the body’s pH is out of balance it is often a reflection of disease. The kidney’s are a powerful way for the body to maintain homeostasis (bodily equilibrium)(www.boundless.com).

Protein

Protein is usually not in the urine. This type of protein is also called albumin. Albumin is a protein that is made in the liver and is used for growth, tissue repair and to remove excess fluid from the blood (http://bja.oxfordjournals.org). When protein shows up in urine consistently it may indicate that the kidneys are not working at an optimal level.

Glucose

Glucose (a sugar molecule)  is normally not found in urine. “When glucose is present, the condition is called glycosuria”(www.labtestsonline.org). When the body can’t handle glucose properly it can get leaked into the urine.

Ketones

Ketones are generally not found in urine. They can occur when a person isn’t eating enough carbohydrates or when carbohydrates aren’t being used properly (www.labtestsonline.org).

Blood (Hemoglobin)

Hemoglobin is a protein that transports oxygen found inside red blood cells. The source cannot be identified when blood is found. For instance, your period can cause blood in urine as can hemorrhoids. Medications, smoking, and strenuous exercise can also cause hemoglobin to be in the urine (www.labtestsonline.org).

Leukocyte Esterase

Leukocyte esterase is an enzyme present in white blood cells. When this presents in urine it is an indication that there is inflammation in the urinary tract. Usually this indicates a kidney or bladder infection (www.labtestsonline.org).

Nitrite

Nitrite is a form of  bacteria that is normally not present in urine. Its presence can indicate an urinary tract infection (UTI).

Bilirubin

Bilirubin is a waste product from the liver that is a component of bile. Bile aids your body in digesting it’s food. It is not present in the urine of a healthy individual. It shows up in various forms of liver disease- often before other symptoms are present (www.labtestsonline.org).

Urobilinogen

Urobilinogen is normally present in small amounts in urine. It is a by-product of bilirubin. When levels are out of range it can indicate an issue with the liver.

References:

https://www.boundless.com/physiology/textbooks/boundless-anatomy-and-physiology-textbook/body-fluids-and-acid-base-balance-26/acid-base-balance-248/the-role-of-the-kidneys-in-acid-base-balance-1219-9206/

http://bja.oxfordjournals.org/content/85/4/599.full

http://www.webmd.com/a-to-z-guides/urine-test?page=2

Living With Lupus: Tips that help me get by

Originally posted on Random Thoughts on Life:

Living with Lupus comes with a variety of issues that we must deal with daily. Some of these are physical and others are emotional.  Over the years, I have found different products, foods, and activities that help me cope with both.

On the physical level, the joint pain and rashes are the most consistent and persistent problems.  The malar face rash and body rashes that Lupus deals out can be hard to conceal and heal.  I have went through a variety of skin creams in an effort to keep the malar rash at bay and easier to mask.  Origins facial moisturizer and Rodan & Fields Soothe have by far been the best.  In fact, Soothe has helped keep the rash under control enough that with make up, I can conceal it and make it almost undetectable!  I also use it on the other body rashes I get from Lupus and it has been a huge help. Clinique’s Redness Solution face powder is designed to help cover redness in the skin so it has been a must in my make up regimen for years!  I know these things might seem trivial to some, but for those of us suffering from these rashes, anything that makes us feel better is a plus.

The joint pain isn’t as easy to deal with. I try to stay away from pain killers as much as possible. Of course, there are times when I take them because I cannot find relief in any other way, but I always try alternatives first. Heating pads sometimes help and I usually start there. I also have found that by getting in the pool and moving, I can ease the pain.  Simply moving in the pool, taking it slow and letting my body take the lead on what I can handle is the key to this type of therapy for me. Walking and bike riding when I am able are also beneficial. Any kind of light physical activity increases the joint flexibility and helps with pain relief.  These things don’t work overnight though, so creating a routine is important to long term benefits.

Yoga has been my salvation in recent years.  Not only is yoga good for you physically, but the mental and emotional benefits are enormous.  I do gentle yoga in order to respect my body’s limitations.  I still get the benefits of more demanding yoga, but without taxing my body in a way that would set me backwards. Kundalini Yoga is one of my favorites as it is a complete practice that involves meditation and focuses you on your intentions with each session.  The meditation has been very therapeutic for me and keeps me centered.  When I was getting ready to start chemo, my doctor asked what activities I did to help cope with Lupus.  When I mentioned yoga, he was pleased and advised that even if I couldn’t do the physical portion of the practice that I should continue the meditation. He believes that it helps with the emotional aspect of dealing with chemo and I agree.

What we put in our bodies is also very important to our overall health and wellness. This is especially true when dealing with chronic illness.  I do not eat fried foods and try to cook my own meals as often as possible.  Going out to dinner is a treat in some ways but can create digestive turmoil as well.  Not being in control of what goes into my food has caused me many a night of intestinal upset! We eat organic as much as possible, and include fruits / vegetables in our daily diet. Being aware of foods that can contribute to flares is also important. For example, I used to eat alfalfa sprouts quite often until I discovered that they were actually bad for Lupus and instigated flares.  Eating like this can be more expensive, but we either pay for what we put in our bodies now or we will pay for it later.

While some of these might not work for you, I still wanted to share them because I know I am always on the lookout for ideas that don’t involve medication. I would love to hear from you about what works for you. I firmly believe that sharing is caring and though our Lupus community we can support one another in finding ways to make life better for us all.

My name is Chelsea Stark and this is my story.

My new invisible companion is Systemic Lupus Erythematosis. I was diagnosed with it in year: 20015. But I had symptoms since I was 13 years old. I went to the doctor quite a few times and their answer to my problem was not lupus but juvenile arthritis. And treated me as such. My mother my grandmother all had Lupus My mother kept pushing them to test me every year. They tested me I keep popping positive for five of the six markers. Was never all six. So I just kept on going on with my treatment of juvenile arthritis. But never got the relief I wanted or needed.

In 2015 I got extremely ill so I decided to try testing for Lupus again. To my husbands persistence. I went and asked to be tested for Lupus again. Believe it or not I was extremely grateful to get the diagnosis of Lupus. The doctor told me that he thinks that I got miss diagnosed that 15. He is fairly convinced that it was lupus and not juvenile arthritis. Apparently if the doctor doesn’t do the right testing it is hard to tell the difference between juvenile arthritis and lupus. I have been on the right medication for several months from my rheumatologist and feel much better. And now I am capable of walking longer distances without assistance. I was originally in a wheelchair, Walker and used a crutch for many years. When I got the right medicine for my rheumatologist that I have been meeting for years I was capable of doing so much more.

The biggest adjustment I’ve had to make is: avoiding UVA/UVB rays

Most people assume I’m NOT sick because I don’t often look sick.

The hardest part about mornings are joint stiffness.

A gadget I couldn’t live without is: sunscreen lotion

!The hardest part about nights is  joint pain.

Each day I take pills & vitamins. I would highly recommend those with lupus to take some of these vitamins. Vitamins: flax six day, Glucosamine 2 to 3 a day, vitamin A, B, C, D. I take these on a daily basis and they help me a whole lot. If anybody has any other vitamins they take that seemed to help them please share.

If I had to choose between an invisible illness or visible I would choose: NEITHER.

Regarding working and career: because i’m legally blind I am on permanent disability. So I was never able to work because of my vision loss.

People would be surprised to know how much sleep I require.  Believe it or not the commercials about Lupus really don’t tell the whole story. There’s just no substitute for doing research and talking to people with lupus.  The only visible sign that I have that shows I may have lupus to people is a butterfly rash on my face. Which Will appear more obvious when I am sick.

Something I really miss doing since I was diagnosed is basking in the warm sun.

Being outdoors on a regular basis. Is now something I am not able to do. I try to limit myself to first thing in the morning and in the evening. I do my best to not go out in the afternoon.

A new hobby I have taken up since my diagnosis is blogging. I have started several blogs. If I suddenly did not have lupus the first thing I would do is spend the day outside at the beach.

Of course with all illnesses you must learn patience. But I love it when people tell me they keep me in their prayers. It really helps.

When someone is diagnosed I’d like to tell them you are not alone.

Something that has surprised me about living with an illness is the isolation of living with a disease none of my friends have. The nicest thing someone did for me when I wasn’t feeling well was give me a hug.

Regarding alternative treatments I: wish I could afford acupuncture (because I haven’t tried it) and craniosacral therapy (because it really helps).

One of my favorite medical TV show is Mystery Diagnosis! I am a huge Star Trek fan and a sci-fi fan.

The fact that you read this post makes me feel I’m not alone. if you have Lupus in any form please reach out to me. And I want you to know you are not alone.

I have started  a blog titled Lupus My Invisible Companion. I would love to add a lot of people’s stories about living with Lupus been one big blog. And have suggestions on how to improve your life. Such as prescriptions, vitamins and exercises. I believe if we all work together we can help one another. And share our knowledge and educate people about Lupus.

Lupus-related pain is common, but there are medical and non-medical treatments that can help relieve your pain.

everydayhealth.com  by Pat F. Bass III, MD, MPH, and Farrokh Sohrabi, MD

 f you’ve been diagnosed with lupus, you will probably have to cope with lupus-related pain at some point in the course of your disease. Ninety percent of lupus patients experience some joint or muscle pain, commonly caused by inflammation of the joints.

 Lupus pain is different from other types of pain because its source and solution are often not that obvious. Lupus is a systemic disease, and pain symptoms, like other lupus symptoms, tend to wax and wane. Stress may also play a larger role in triggering pain related to lupus than it would for other conditions.
Types of Lupus Pain 

Pain can affect lupus patients in the following ways:

Arthritis. This type of swelling of the joints is common in lupus patients. Symptoms include pain, tenderness, stiffness, and warmth. Lupus usually causes arthritis in joints on both sides of the body and commonly affects fingers, wrists, elbows, knees, and toes. Stiffness is worse in the morning and gets better as the day goes on. Fibromyalgia. As many as 30 percent of lupus patients may also have fibromyalgia, a condition that causes chronic muscle and joint pain. The cause of fibromyalgia is not yet known but it can also lead to fatigue, joint and muscle pain, and stiffness.  Lupus myositis. Lupus patients can have inflammation of the muscles that move bones, called “skeletal muscles.” This can cause pain and muscle weakness.  Lupus headache. About 20 percent of people with lupus experience severe, migraine-like headaches.

Medical Treatments for Lupus Pain 

“Anti-inflammatory medications such as salicylates, NSAIDs, and corticosteroids help with pain and inflammation,” says Amita Bishnoi, MD, a rheumatologist at Henry Ford Hospital, in Detroit. Your doctor may recommend one or more of the following medicines to help you manage your lupus pain:

Non-steroidal anti-inflammatory drugs (NSAIDs). These are the most commonly used medications for lupus pain. They include aspirin, naproxen, and ibuprofen.

Antimalarials. Two types of antimalarial drugs, hydroxychloroquine and chloroquine, combined with other medications, may be used to treat joint pain. These drugs may also help prevent lupus flares.

Corticosteroids. These medications can be used to control severe arthritis and are considered the best drugs for treating pain caused by lupus myositis. Corticosteroids may also help control lupus headaches.

Belimumab. This drug was approved to treat people with active lupus in 2011. It is the first new drug approved for lupus since 1955. It may prevent lupus pain by preventing severe lupus flares.

A 2011 study published in the journal Annals of the Rheumatic Diseases, involving 1,684 patients with active lupus, compared belimumab plus standard therapy to standard therapy alone. The patients taking belimumab along with standard therapy had less disease activity than the other group.

Other Lupus Pain Management Options 

“Some patients who have chronic pain that is not responding to medications should consider consultation with a pain management specialist. Some non-medical treatments for pain can also be useful, including acupuncture, biofeedback, massage, and physical therapy,” advises Dr. Bishnoi. Moist heat may often help relieve joint or muscle pain. A moist heated towel, hot shower, hot bath, or whirlpool are some options. Other pain management options include:

Physical therapy. Physical and occupational therapy can help control lupus pain through exercises designed to keep muscles strong and to maintain the full motion of your joints. Physical therapy can also teach you ways to protect your joints from injury.

Mind-body techniques. These treatments take advantage of your mind’s ability to influence physical symptoms. Breathing exercises, relaxation training, and meditation are all good ways of lowering stress, which can be an important part of your pain management plan. Mind-body techniques that combine exercise and meditation, like tai chi and low-impact yoga, may also be helpful.

Massage. This treatment can be very relaxing and soothing, but it’s important to tell the massage therapist about your lupus diagnosis first. Ideally, the therapist should have experience working with lupus patients.

Acupuncture. This ancient treatment has been used for nearly 2,500 years to help people manage a variety of health ailments. The National Institutes of Health has concluded that acupuncture is effective in relieving many types of pain including pain related to fibromyalgia.

Keeps You From Working? 

If you have lupus-related pain that makes it hard for you to stay at your job, you need to know about your rights under the Americans With Disabilities Act (ADA). You are considered to have a lupus-related disability if your lupus symptoms cause one or more physical or mental impairments that substantially limit the major life activities you’re able to engage in.

Talk to your employer about your lupus. The ADA requires your employer to make reasonable adjustments to your work environment to accommodate your health needs, if possible. This may include restructuring your job duties, changing your work schedule, or finding a different position for you within the company. If you want more information on the ADA, go to the U.S. Department of Justice Americans With Disabilities Act Web page.

If you can no longer work — even with reasonable accommodations — you may need to consider filing for disability. There are two programs that may apply to your situation: The Social Security disability insurance program pays benefits if you have paid into Social Security long enough, and the Supplemental Security Income program pays benefits to disabled adults who have limited resources. Contact your local Social Security Office for help.

Even though 9 out of 10 lupus patients will have to cope with lupus-related pain, doctors have many options for managing it. Always let your doctor know when pain symptoms flare up. And if pain is making it hard for you to keep up at work, remember that you do have legal options and rights..