What You Need To Know About Headaches……Part 3

I had hoped to get my migraine series finished before the end of June, which was migraine awareness month. However, sadly I spent most of the last week of June in the hospital with a MIGRAINE. I had dealt with it for over ten days and finally waved the white flag, cried uncle and went to the hospital. I was hoping that I would be able to break the migraine by just getting medications in the ER. But no luck, I had to be admitted for four days. So finishing this treatment section of the migraine series seems appropriate, as I spent the last couple weeks living in this phase of a migraine.

So how do you treat a migraine??? Well, that’s really a hard question to answer. What works for me may not work for you and vice versa.  And I have found it to be more a case of trial and error of what might work. I have tried SO MANY medications and treatment options over the years. Even thought I have been on this migraine journey for over 15 years I am not totally sure that I have found the perfect mix yet. In the early years I only had migraines periodically, it wasn’t until the last three years that they have really become debilitating.  I also didn’t start having the hemiplegic (stroke like) migraines until 2016. One of the big things I can’t stress enough when you are on the search for the best treatment for your migraines is to keep a journal of your symptoms, what you did, what you ate etc on the day of your headaches so you can see if there is something recurring with each migraine. So lets dig in to treatment options.

The most common treatment for migraines are medications. Whether you take over the counter meds, preventative meds or meds for the acute head. Below you will see the each type of medication explained.

  • Over the counter (OTC) medications are medications that can be bought without a prescription on the counter at any pharmacy.
  • Acute medications are used as soon as a migraine is happening. These are also known as abortive medications.
  • Preventative Medications are used on an ongoing or routine bases, in hope that they will prevent or reduce future attacks. These can also be called prophylactic medications.

Over the counter options for acute symptoms include:

  • Excedrin Migraine
  • Ibuprofen which is also known as Advil and Motrin
  • Naproxen which is also known as Aleve
  • Aspirin (you need to check with your physician before taking this medication as it is also a blood thinner)
  • Acetaminophen which is also known as Tylenol

Examples of prescription drugs you might be given to take for acute (when the headache is happening) symptoms include:

  • Triptans are a class of medications that deal with the chemical Serotonin in the brain, which helps to diminish the swelling of the blood vessels that cause the headaches. These drugs are primarily used in the treatment of acute headaches. This method of treatment goes back to the 1950s. Examples: Maxalt & Imitrex.
  • DHE 45 became a treatment for migraines in the 1940s. It is only used to treat migraines in the ACUTE stage and should not be used as a preventative medication. This medication is available as an injection, IV drip and nasal spray.
  • Ergotamine is a medication that is used for a SPECIFIC kind of headache. It is used to treat vascular and tension headaches. The medication works to narrow the widened blood vessels in the head, which in turn reduces the throbbing effects of vascular headaches. This medication is also used only in treatment of acute headaches.

Examples of medications that are given as  preventive or prophylactic prescription medications include:

  • Beta blockers (Use caution with these as they can also lower the blood pressure and heart rate) This group of medication is used as a preventative medication to treat migraines. They work to relax and open up blood flow thus reducing the frequency of headaches.  Examples: Propanolol or Toprolol.
  • Calcium Channel Blockers (Use caution with these as they can lower the heart rate) This group of medication is used because of the way it works, basically the end result is that this group of medications prevent contraction of the muscle wall of the artery.  Examples: Procardia or Verapamil
  • Antidepressants are often used as a preventative medication for headaches because the tricyclic antidepressants also work to treat chronic pain. Thus they work well for migraines.  Example: Elavil
  • Anticonvulsants this group of medication work to calm the hyperactivity in the brain. Example: Depakote, Topamax, Gabapentin

There are also many other options for migraines. One of the most common is the Complementary & Alternative Medicine. This option includes any medicinal products or practices that are not part of modern medicine. Alternative medicine can be defined by its use an an alternative option to traditional modern medicine. Complementary medicine is used in conjunction with traditional medical treatment. These treatments could be things like: any natural remedies like herbal medications or treatments, vitamins, minerals or any kind of supplements. There are many options of herbal medications, which I have tried, the one I personally had the most luck with was feverfew. Other options would include meditation, yoga, biofeedback, acupuncture, tai-chi. Or even body-based practices like chiropractic adjustments or massage therapy. Like always, before starting any new over the counter medication, herb or supplement. Or any increase in physical activity please check with a dr before doing so!

In addition to medications and alternative or complementary therapy, the U.S. Food and Drug Administration (FDA) has now approved two different nerve stimulators that may be helpful for certain people who have not gotten any relief from all other treatment options. The Cerena Transcranial Magnetic Stimulator is a device that has been approved for anyone over the age of 18 who have migraines that are preceded by an aura. This specific device is help to the back of the head and will deliver a pulse of magnetic energy.

There is also a vagus nerve stimulator that has been approved for use in adults with migraines, as well as those who suffer from episodic cluster headaches. This device is hand-held and is placed over the vagus nerve in the neck and it releases a mild electrical stimulation to reduce pain.

In 2010 Botox, previously primarily known for its use by plastic surgeons, was approved for use with chronic migraines. Currently the FDA has only approved Botox use in those with chronic migraines, which means a person must have 15 or more headache days a month. Research shows that the more frequent the headaches the better the Botox result will be. Botox is given as approximately 30 tiny Injections around the head, the injections are given around pain fibers that are involved in headaches. Botox will enter the nerve endings around the injection site and then blocks the release of chemicals involved in pain. This in turn prevents activations of the pain networks of the brain. Patients who receive Botox can only receive injections every 12 weeks. And it generally takes 3-4 treatments at least to begin to fill the full impact it may have. Botox requires pre-authorization by the insurance company before it can be given. Along with very detailed documentation by the doctor regarding the frequency and duration of your headaches.

In early 2018 the FDA approved the first drug of its kind for migraines. It is said to reduce the number of migraines among those who are prone to migraines. Most of the medications currently used for migraines are used to control the symptoms. The new drug, called Aimovig, is designed to reduce the number of migraines among the population who suffer most frequently. One of the largest studies done during the testing stage showed that the number of migraines dropped from eight to fewer than five. This medication is given as an injection, much like insulin, delivered by a pen-like device. The one big downfall for some is that the medication will cost around $6,900 a year, and insurance coverage is not completely decided at this point!!

I hope each of you enjoyed this series on migraines and that maybe you learned something you didn’t know. I know I learned a LOT while doing the research for this series. Migraines are so complex and I could have probably written a five part series or even more. There are so many options of medications available along with many more non-medicinal treatments available, than in years past. And so much research is being done to find the best treatment available for migraines. I didn’t cover Botox in much detail and there is a lot of information I could share. If you are interested in learning more about Botox or the new medication Aimovig leave me a comment and let me know. Also, if you have a condition that you would like me to do a series of posts on let me know and I will dig in and start my research. This has been pretty popular so I am looking forward to doing more multi-part series in the future.

With Love,

Amber

The Truth Behind the Gluten Free Diet Part 2

Continuing on from Part 1 we will now take a look at what researchers have found more recently in regards to The gluten diet. We will also be looking at the potential benefits and potential risks of eating a diet low in gluten. I will also give you some examples of good gluten-free foods and the kinds of foods you should avoid.

In the early 2000’s Dr. Fasano continued the study of celiac disease, and the gluten-free diet. He also completed a large study that found the prevalence of celiac disease in the US to be about 1%. Which was actually 10 times higher that what researchers in the US before this study! Fasano’s research was published in the Journal JAMA International Medicine 2003.

After the spotlight was placed on Celiacs Disease in the US, many more studies were done and published, regarding the gluten sensitivity in Americans. Some research began to suggest that a gluten free diet might actually be beneficial to people with other health conditions, not just Celiacs. There have also been research done that showed that there could potentially be a link between gluten and schizophrenia, or gluten and autism.

“There is a possibility that some groups of individuals with other chronic inflammatory conditions, including autoimmune diseases like diabetes or multiple sclerosis, of course autism … and schizophrenia … there could be a subgroup of these individuals that could benefit from embracing a gluten-free diet,” Fasano said.

As research on this issue has continued, links between gluten-free diets and improvements of various other symptoms and disorders, has been found.

Around 2010 celebrities started to speak out about gluten-free diets. A popular singer and actress put out information on social media that she had lost a significant amount of weight by removing gluten and lactose from her diet, she did also say that she has allergies to gluten and lactose. But not everyone heard it chose to listen that she cut it out due to allergies and only saw that when she did this she lost weight. Around this same time, multiple food manufacturing companies began working to expand products that were gluten-free to keep interest in the products among the groups that were eating gluten-free diets. At this time rules for defining gluten-free products changed and would now require that food labeled as gluten-free must have an undetectable level of gluten. The early 2010’s is when the shift in gluten-free diets started. At this point removing gluten was not longer a medical treatment Celiac’s Disease, but a diet method.

Although in the past, gluten sensitivities were very obscure, it is now estimated that gluten-related disorders could affect 10% of Americans. While gluten sensitivity is being seen more often all over the world. It has been found that more consumers who don’t have any Celiacs Disease, or non-celiac gluten sensitivity, decided to change to a gluten-free diets by choice. According to a study that was published in The Journal of Internal Medicine in November 2016, in 2009 and 2010, 0.52% of Americans without celiac disease eliminated gluten from their diets, and by 2014 that percentage rose to about 1.69%.

The increase in people on a gluten-free diet could be due to the benefits that can be found from eating that way. Dr. Axe wrote an article talking about Gluten. He states that a diet low in gluten could potentially increase fat burning, provide a burst of extra energy, reduces inflammation, and easing of digestive symptoms like gas, bloating it diarrhea.

In the article by Dr. Axe he lists 6 ways a person can benefit from a gluten free diet. They are:

  1. May ease digestive symptoms
  2. Could provide extra energy and resulting in less brain fog
  3. Could be beneficial for children with autism
  4. Can decrease inflammation
  5. Promotes fat loss
  6. Improve symptoms of Irritable Bowel Syndrome

Some research in the last few years has found that gluten & gluten containing foods can potentially be a trigger for joint pain. It has been proven that certain foods are pro-inflammatory, meaning they increase inflammation. Pro-inflammatory foods could include gluten-containing grains, and any of the thousands of foods that are made from those grains. Many people with celiac or gluten sensitivity have found that when they remove gluten and gluten containing products they have less arthritis pain. However, most providers don’t feel like there has been enough research done on humans to determine if gluten can really help reduce inflammation.

That being said, medical experts caution that no one should begin a gluten-free diet for arthritis before having testing for celiac disease. Due to the fact that it might not be gluten causing the problems it could be a wheat protein allergy or lactose allergy or an issue with FODMAPs(which is small sugar molecules in some fruits and veggies.) They can all be pro-inflammatory and irritate the gut as well.

Since gluten-free diets have become one of the current “fad diets,” experts have began to warn people that gluten-free eating might not offer benefits. If you don’t have gluten sensitivity changing to a gluten-free diet could actually do more harm than good in the long run.

“We definitely don’t recommend a gluten-free diet for weight loss. My dietician will tell you that. The reason why is, when they remove gluten from a lot of these foods to make them taste more appealing, they add more calories or carbohydrates,” said Dr. Runa Watkins, assistant professor at the University of Maryland School of Medicine, who specializes in celiac disease.

“The second thing is, being on a gluten-free diet also puts you at risk for other nutritional deficiencies in the long run, such as like B-12 and zinc and folate,” she added, “And cost-wise, it can be expensive. So we definitely don’t recommend it just because.”

What you don’t hear much about is other foods, chemicals and medications that cause inflammatory issues, which is great for those without a diagnosis. People who have celiac symptoms or inflammatory issues who test negative for celiac disease are left without a diagnosis. But we are starting to learn about other foods and meds that could potentially produce the symptoms they are having. Recently there have been studies that have shown that the following foods and additives can trigger symptoms identical to celiac, gluten sensitivity and increased inflammation

The following list contains foods and additives that can potentially cause the aforementioned symptoms.

  1. Sugar
  2. Vegetable Oil
  3. Fried Foods
  4. Refined flour
  5. Dairy
  6. Artificial Sweeteners
  7. Artificial additives
  8. Saturated Fats
  9. Grain Fed Meats
  10. Processed Meats
  11. Gluten in store bought bread
  12. A second round of alcohol
  13. Trans fats
  14. Fast food

There is new research that has been done and published in the Journal of Proteome Research that has identified 5 new groups of non-gluten proteins that are responsible for inflammatory issues in patients with celiac. These proteins are very different to the gluten proteins that are known to cause celiac disease. This research gives those who test negative for gluten antibodies but respond well to a gluten-free diet hope. Hope that one day we will really understand what foods cause inflammation issues, GI symptoms, and what foods don’t.

In order for you to totally remove gluten from your diet, reading food labels is essential. Sadly, most of the time you won’t find “gluten” listed in a food label. So instead you should avoid foods that contain the following

  • Wheat
  • Rye
  • Barley
  • Malt
  • Brewer’s Yeast
  • Oats (unless you see on the label that they are gluten free)

So now you may be thinking, “What’s left?” So below you will find a list of good gluten-free foods, that are very nutrient dense.

  • Quinoa
  • Buckwheat
  • Brown Rice
  • Corn Grits
  • Gluten-Free Oats
  • Nut Flowers
  • Veggies and Fruits
  • Meat, Poultry and Fish
  • Nuts and seeds
  • Beans and Legumes
  • Dairy Products

Fad diets will come and go, just look at how Jenny Craig, South Beach Diet, or Weight Watchers are in and out of popularity. Everyone is always going to be looking for the easy out and the quick way to lose weight. The gluten-free diet is not one you should look into for weight loss though. Gluten-free diets really should be reserved for those who truly have a gluten sensitivity or have tested positive for celiac disease.

It is essential that you talk with your doctor before you make ANY DIETARY CHANGE. If you want to eat a low gluten or gluten-free diet, your Doctor needs to check to make sure you don’t have a gluten sensitivity. Simply because changing to a gluten-free diet can actually be detrimental to your health if you don’t have a reason to be eating that way. If your doctor okays the diet change, and you have a good experience with the change, stay the course. But remember when shopping to read the labels. In many cases when gluten is taken out of products, a lot of preservatives are put in its place. Many times there will be more calories and carbs in “gluten-free” food. If you are changing your diet and removing gluten and gluten containing products to see if inflammation levels will drop, please check with your dr before making dietary change. What may work for one person may not work for another. That being said, I expect that in the coming years more research will come out about how gluten impacts inflammation. I also expect more guidelines to come out from the FDA regarding the nutritional content of gluten free foods.

I hope that you were able to learn something from the information provided. And that you might be able to make a more educated decision on what you want to do regarding gluten in your diet!

** If you like this type of research based post please let me know in the comments. I want to produce the kinds of things you guys like to read!!

With Love,

Amber

The Truth Behind the Gluten-Free Diet Part 1

To avoid making one very long post, due to all the Information out there on the history of gluten and how it’s dietary use has changed In the last 76+ years, I will divide this into two blogs. Past and present.

So here we go……

Gluten, one simple, short little word that has become the center of many debates and conversations over the last few years! But honestly what is GLUTEN?? A concise definition would say that Gluten is a family of proteins found in grains like wheat, rye, spelt, and barley. Gluten free diets have been around for many since the 1940’s or earlier. However, at that time they were only used as a type of medical treatment, usually for those linked with Celiacs Disease. Over the last 3 or 4 decades research has been done regarding the gluten-free diet as a medical treatment for those with celiac, and as a choice for those without a sensitivity to gluten. . And interestingly enough it’s been found that if people who are not gluten intolerant choose to eat a gluten-free way of life their health could actually be negatively impacted. We have also found that there is a direct link in gluten and inflammation levels in the body. Gluten is so much more than a simple little word.

Let’s take a look back in history, the gluten free diet actually emerged in Europe in the 1940’s as a medical treatment for children with celiac disease. Since that time it is estimated that MILLIONS of people around the world have removed some or all gluten and gluten containing foods from their diet. Many choose to do this on their own with no doctors recommendation. Until the 1970’s a gluten free diet was most commonly seen in those who had celiac disease. Which is a disorder of the gut where the body is abnormally sensitive to gluten. During World War 2 in Europe, people, especially children, were becoming very malnourished because of lack of access to fruits, veggies and wheat. Obviously this was not ideal and weakened the health of many. But doctors noticed that it seemed to improve the health of those with Celiacs Disease. A Dutch pediatrician, Dr. Willem-Karen Dicke, discovered that children who had celiacs were suffering much less during the war than they did before the war. Before the war they had an adequate source of fruits, veggies and wheat. A disease, that before the World War 2, had about a 30% mortality rate was found to no longer be killing anyone. The only link that could be found was an overall lack of availability of wheat. In fact flour that may have included wheat pre-war, was being made with potato starch instead of wheat.

In 1941, Dr. Dicke wrote and published a paper about the effects of a wheat free diet that he had observed. Following the publication doctors started to link symptoms like bloating, diarrhea, constipation, gas, pain in the stomach and nausea, to gluten

Following the observations that Dr. Dicke documented in the early 1940’s, there really was very little research on the topic for a few decades. Fast forward to the 1970’s, when scientists began to find the first signs that celiacs disease could possibly be autoimmune rather than an allergy. The 1970’s is when the research was done on how celiac develops (the pathogenesis of the disease). By the late 1970’s many studies were published on the pathogenesis of the disease, that clearly linked celiac disease with other immunological disorders. Those studies would eventually prove that celiac disease is an autoimmune disorder. Meaning the immune system attacks it’s own intestines when gluten enters the body. At this point scientist only believed that people with celiac disease could have a reaction to gluten, but the idea started to emerge that gluten could possibly impact the health of people without celiacs disease.

In the 1980’s more research was being done that showed there was something called “non-celiac gluten sensitivity.” The description of non-celiac gluten sensitivity was published in 1989 in the Journal of Gastroenterology. This specific publication discussed the stories of 8 women who complained of abdominal pain and chronic diarrhea, until they followed a gluten-free diet. These women had blood tests, and biopsies that were all negative for celiac disease. This remained a slightly confusing idea as it was showing new and different things that had been seen in previous research. It was decided at that time that those with non-celiac gluten sensitivity would be viewed as a medical condition that has the same symptoms of Celiac disease, without the immune system causing damage to their intestines. At this point in history they couldn’t be completely positive that those with non-celiac gluten sensitivity are sensitive to gluten itself. They were looking at the fact that another protein in wheat could be the problem.

In the early 1990’s celiac disease was considered extremely rare, almost nonexistent in the United States. Which was totally opposite of what was being seen in Europe at that same time. Celiacs disease was on the edge of being a total epidemic in Europe at that time. Dr. Alessio Fasano move from Naples to the Unites States in 1993 and he was shocked that the reported incidence of celiacs was so low in the US while it was so high in Europe. He found that this was partially due to the fact that research on celiac and gluten-free diets were almost exclusively being done in Europe, until Dr. Alessio moved to the US. Once he was settled in the US he began to do research to find out why the number of cases suffered so much between the US and Europe. What he found was that celiac disease was just as prevalent here in the US. The only difference was that it was basically being ignored here. He published an article about celiacs disease saying “Now you know, wherever you look for it, you find it, provided there are genes and environment triggers.” Fasano would go on to publish a paper with more data, that lead to the change in the scientific community’s viewpoint on Gluten in America.

Next time we will look at thoughts on Gluten now and how the gluten-free diet has become what seems more of a fad to many. So come back next week for part 2!

Pick-Me-Up, Pamper, and Prattle by Amy Nora

We will hear that taking care of ourselves can be overindulgent or that you are entitled to it in our society.  Tune out what society says, and as someone with a Chronic Illness here are the facts.  You must utilize self-care.  This means that you cannot run yourself ragged emotionally or physically.  You need to invest in emotional and physical health.  There are days that you must rest, this will prevent you from getting sick.  There are times that you will need to cancel plans; yes this is frustrating, but it is unfortunately our reality.  But, there are things that we can do to help invest into our emotional and physical health with give us strength to fight our chronic illnesses.

Emotional health can involve going out with friends, getting away to that quiet place in your home that you love with your favorite beverage, and watching HULU, Netflix, or reading a book.  (I personally prefer a book, but to each his own. 😊)  Go to the movies, take a walk in the park or around your neighborhood, go pet a neighbors cow, or look at the birds that are flying overhead.  Make sure that whatever you do brings a smile to your face, heart, and soul.  It is proven that when sick laughter causes the production of serotonin; find something to laugh about!  Watch a movie, or find that TV series that makes you laugh.  Spend time with your pet, the joy they bring to you is great for your heart and sould.

Your Physical health does not mean that you need to run a marathon.  It can be something as simple as 5 minutes three times a day of some sort of easy exercise, or if you can handle it more.  Yoga, Tai Chi, Walking, Pilates, these are all low impact exercise options that help build strength and help with mobility.  Aquatic therapy is excellent for those with joint issues.  Check with your local community centers and churches, synagogues, or temples to see if they have classes if you are not sure where to start.

Another aspect of your physical health is eating healthy.  Make sure that you are getting 3-5 servings of fruits and vegetables a day.  Try and eat a healthy balanced diet.  Yet, when you feel awful or are down it is easy to hit that quart of chocolate ice cream (I brought up chocolate ice cream because I went through the 12 step program and I still have problems.  Apparently, they frown on ice cream for 3 meals a day.) in frustration.  Between prednisone and many of the medications that we take for our diseases, weight gain is easy.  While eating healthy won’t prevent it necessarily it does make you feel better.  If you want help with dietary suggestions, check with your local hospital which normally will offer a community class or go to WebMD.com

Remember that while you cannot control everything in life, you can choose to enhance what aspects of your life you can.  Decide today to do what you can to help make a difference.  Even a series of small baby steps over times makes a huge difference.

In Lupie Love,

Amy

My Top Ten Must Have Items For Living With A Chronic Illness

I don’t know about you, but I am really bad about taking time to care for myself. Or spending money on things that will benefit me. I often put others needs before mine and that is something I’ve always done that. Until recently, when I realized that my needs truly need to come before others and I need to do more to take care of myself and not just symptom management and doing only what I feel like doing. So I won’t usually take the time or spend the money to take care of me outside of what has to be done daily just to function. Sometimes it will really take a reminder to spend some time taking care of my skin and and body outside of my daily routines. I assume that others are like me as well. Over the last year I’ve actually been taking the time and spending the money to take care of me. So I decided to share some of my favorite products that I think others with Chronic Illness/Chronic Pain should have on hand and would enjoy.

Bath Bombs/Epsom Salt

One of the things I have found that I enjoy and can be both beneficial and a way to pamper myself is a good hot bath. So I wanted to tell you about a couple of my favorite items I use in the bath.

1. One of my FAVORITE things is to take a HOT bath. So the first thing on my MUST HAVE list is a good Bath Bomb. Most of my bath bombs come from an Etsy shop called “ThisLittleLymeOfMine.” Her products are not only aesthetically pleasing, they also have healing properties. She uses Himalayan Pink and Dead Sea Salt to make her products, both of which are known to have a healing properties. One reason that I like to support this shop is because it is owned and run by a fellow Spoonie. She is currently running a special for those who use the code 5OFF15, which will get you $5 off a $15 purchase. You can visit her shop by clicking on the link above.

2. Another must have in my opinion is a good EPSOM SALT! I’ve tried out many different kinds of Epsom salt throughout the years. And my most favorite is Relief MD Lavender Epsom Salt. I use this a lot at night due to its calming properties. Lavender is known to help one sleep, and the magnesium in the product helps to soothe sore and tired muscles and joints! I have found this in stores local to me but it can also be found on amazon. The link above will take you to the product on Amazon.

Skin Care

The older I get the more I realize just how important taking care of your skin really is. And not just the skin in your face, we need to take care of all our skin. We only get one face so we have to take care of it. I’ve been looking for some good skin products over the last few years and the following are the best I have found.

3. The next thing I want to share is lotion, because I have been having some major skin issues due to my illnesses. And I know I am not alone in this. Many with chronic illnesses will deal with skin issues. So I felt it important to share a good product with all of you. Recently, I have really been liking the Jergens Wet Skin Lotion! One of my favorite things about this lotion is that you can put it on your skin while it’s still wet and you don’t feel slimey. When it dries my skin feels so soft and nice!! By clicking the link above or looking at the picture below you will see that if comes on amazon in several size and quantity options, and 5 scents. My favorite is the coconut, it reminds me of being in a beach with a drink in my hand!!

4. Another line of products I’ve been loving is the Senegence Skin Care Line. (And no this is not a shameless plug because I sell them! I truly love them and that’s why I’m sharing!) I use the whole normal to dry line which includes a cleanser, a day moisturizer and a night moisturizer, as well as some other products. Including a polishing exfoliator. Even though I have some major skin issues on my face as of late due to my lupus this line has significantly helped those issues. My skin is much more even and much less red. The dark circle treatment has done wonders as well. You can see before and after pictures below. And if you want anymore information on the skin care products I use just click the link above.

Heat Products

One of the non-pharmacological ways I’ve found to deal with my pain is by using heat! That’s why I want to share my two most favorite heating devices.

5. When struggling with chronic pain a good HEATING PAD is essential. Over the last few years I’ve tried many different heating pads. Most of which didn’t hold up to frequent use. I just got the best Heating Pad I’ve ever had. They have a couple different size and color options for this pad. The things that I like about this specific heating pad is that it’s made more like a heated blanket. This particular product isn’t like the older ones where the cover and the pad are separate, and over time the heating pad gets misshapen and doesn’t fit in the cover. Another positive thing about this pad is that you have options of how long you want the pad to be on before it shuts off. You have the option of a two-hour timer or no automatic shut off. Another benefit is the automatic shutoff. I also like that the temperature can be set anywhere between 1 and 6. Not like the older models where you got not hot, really hot and way to hot!

6. Heated blankets are simply a MUST when you have chronic pain!! There are different sizes and options for these blankets. I have one that’s a heated throw that’s nice for cuddling up on the couch. And one that is queen sized and stays on my bed. All of my heated blankets have been made by Sunbeam. My all time favorite is the Sunbeam Dual Control Heated Blanket. One thing I like the most about this blanket is that there are dual controls so if you were sharing the bed with a significant other you can each set your own temperature. And there is a wide array of temperature options. My other favorite thing about this exact blanket is that you can preheat it. I like to turn on the preheat function about 10 minutes before I get into bed so it’s ready for me when I’m ready. When you are ready to buy this kind of blanket you should watch the prices. Certain times of year (usually during the holiday season) the blankets will drop in price. .

Sleep

Sleep is so important when you are chronically ill. Yet it is often one of the biggest problems we deal with. I have found a few items that have significantly helped me in my battle of with poor sleep.

7. One of my favorite ways to pamper myself is by putting my super soft sheets and fleece blankets on the bed. The ones I currently have are T-shirt sheets . They feel exactly like your favorite soft T-shirt. In my opinion there is nothing better than getting into a clean, super soft, set of sheets! The particular sheets that I have and are pictured below will come in 9 different colors so you should be able to find ones to fit your bedroom decor!

8. A good BODY PILLOW is a must! When you deal with chronic pain of any kind or insomnia good pillows are important. Especially a body pillow because it helps you to find THAT spot that is often very hard to find! When you look them up you will find that they are called maternity pillow because of the shape. My body pillow is a maternity pillow, but has really helped me sleep and I have less nights of insomnia since I got this pillow.

9. Anyone who struggles with migraines, light sensitivity or even insomnia needs a good Sleep Mask. Like many other items on this list I have tried MANY different sleep masks over the course of several years. Things you should look for in a sleep Mask is that it truly blocks all light and is the correct size and will fit your face. Like many other products, you get what you pay for, and that’s the same with sleep masks. The cheapest is usually not the best. But you also don’t need the most expensive. Just try a few and find what you like. The product linked above and shown below is one of my favorites

Miscellaneous Items

10. I think all ladies (and men I suppose) should have a good foot spa! This spa is the one I have and I really enjoy using when my feet hurt! It’s also fun to use for a girls night in! I used it a lot more when I was working and had been on my feet a lot. But you can really use it anytime. It comes with interchangeable pieces that can be used for massage or scraping the dead skin off your foot. Any spa would be good. The one I linked is simply the one I have.

These are just a few of my favorite MUST HAVES that I discovered over the last few years. The items I mentioned and linked are good for all people and can be used by anyone. But they are all very beneficial to those dealing with a chronic illness or chronic pain. These days any product I find that will make my life easier is going to be high on my list of necessity and to share with other. I feel like we all need to support and help each other, one way to do that is to share the things we have found in life that make things easier. I hope my list will help one of you and possibly make part of your life a little better or a little easier. If you have any questions about any of the products please just leave them in the comments for me.

With Love,

Amber

Where Did All The Money Go????Bills Pills Bills Pills…..

By Amy Nora
It is the never-ending cycle of what many of those with Lupus and other Chronic health conditions struggle with. The financial struggles that people with SLE face can be a challenge on many levels. According to the Lupus Foundation of America, the average lupus patient spends approximately $12,000 annually on treatments; however, many treatments cost several thousand dollars a month or every few months. There is also the problem of loss of income due to the inability to work full time or the need to go on disability. The average total annual breakdown cost per Lupus patient in the United States is $20K.  

This is an extraordinary amount of money to the average person or family. There are ways to help soften the financial impact though. First, drug manufacturers offer assistance programs for patients that are not on Medicare, Medicaid, or Tricare. If you are on any of those three programs, it is illegal for them to assist. These programs offer help with the medications that have copay’s of several hundred to several thousand dollar copays. Second, are organizations that have grants or funding available to assist with various costs associated with various conditions or drugs that are not associated with drug manufacturers so they do not fall into the prohibitive statues under the law. The most heard of and known one is the Healthwell Foundation to those in the Lupus community. Third, if you can meet with a financial advisor to work on medical expense planning. This is now just as important as retirement planning for those with chronic medical conditions. This is not Health Savings Accounts, this is not a specific type of account, this is a strategy based off expenses and potential length of ability to work.  

There are honest and hard financial discussions that must be had if you have a medium to severe case of SLE. I would encourage you to plan wisely. When those expenses come that none of us can plan for, let us make sure we use what resources we can to lessen the impact as much as possible.  

We already have to deal with pills, let’s do what we can about those bills…

 

**********

http://www.resources.lupus.org/entry/facts-and-statistics

 

 

Medical Marijuana….The Real Story! 

The big IT THING these days for treatment of just about anything is Medical Marijuana… How do you get it? Does it really work? How does it help with chronic illnesses? How do you take it, what forms does it come in? Lets take a look at a few diseases and how they are effected by Medical Marijuana! 

Although cannabis is still illegal in the United States under the federal government, many individual states have legalized cannabis for VALID medical reasons. Each state has its own list of qualifying condition, and some states allow doctors to approve a medical condition that is not ok the legalized list. There are too many states and conditions for me to write them all out for you. So if you are interested in the approved conditions in each state check out the link below. https://www.leafly.com/news/health/qualifying-conditions-for-medical-marijuana-by-state

Lupus is often manifested with joint pain and fatigue. Although it can effect many parts of the body and in many different ways. Medical Marijuana is often used to treat pain and inflammation mostly in Lupus patients. Patients are quoted saying they prefer using Cannabis rather than pain pills or muscle relaxers because there are fewer side effects for most when using Cannabis. It is said that the most effective ways to treat lupus with cannabis is to do so with high levels of CBD capsules taken orally daily. Although the capsules can be the most difficult to find. Juicing the leaves also seems to be an effective treatment according to research. And vaporizing CBD can be a good way to help lupus sufferers sleep. One can also eat the edible CBDs to help treat lupus. Although like anything finding the proper dosage can be frustrating, as it can be a series of trial and error. 

Fibromyalgia is said to effect nearly 5 million Americans. It is a poorly understood condition that can cause deep tissue pain, fatigue, depression headaches and even insomnia. Research from 2014 said that most find medical marijuana to be far more effective than any of the prescriptions on the market designed to treat fibromyalgia. From this study it was found that 62% of the people who tried medical marijuana as treatment found it to be very effective. While only 5% said it did not provide them with any relief. Most people will take the capsules for fibromyalgia or in similar forms to the treatment of Lupus. Most commonly for fibromyalgia it seems that the capsules, the edibles or oils/creams are the forms most used. 

Interstitial Cystitis (IC) is a pain bladder condition that effects more than 4 million people in the United States alone. Through research it seems that cannabis extracts may offer new hope for people with this very painful condition. IC causes symptoms like a urinary tract infections, abdominal discomfort and bladder spasms. In Illinois where cannabis is legal for medical treatment and IC is an approved diagnosis to receive cannabis. The IC Network found that about 63% of those diagnoses and use some sort of cannabis to treat their symptoms, and reported that the cannabis decreased their symptoms by 50%. Eighteen percent of those surveyed reported that cannabis completely relieved their symptoms. Fourteen percent said that it helped their symptoms by at least 25 percent. Although marijuana is still generally smoked to provide relief from pain, other forms are being developed that eliminate the effects of the “high,” yet preserve the medicinal effects. Since cannabis has had such a high rate of symptom control in IC, the pain relieving and anti-spasmodic effects of cannabis are now being looked into for treatment of other conditions. Vaporizing CBD or using CBD oils can be used along with capsules for treatment. 

FORIA a company based out of Colorado is saying that their cannabis based product can help relieve menstrual cramps. This compound has not been studied as to how it would effect endometriosis. But one could assume that if it can help with menstrual cramps that the mechanism of action would be the same or similar for someone with Endo. FORIA was formulated to to maximize the muscle relaxing and pain relief properties of cannaboids. Without the psychotropic or feeling of being high like actual cannabis. The capsule is a blend of THC which is known to relax muscles and cramping in the body. One could also use CBD oils and creams for treatment if Endo. 
Cannabis can be used to treat just about anything without the side effects of major pharmaceuticals. Cannabis has very few side effects and most could be viewed as positive effects. Like mood improvement, increased appetite, and better sleep. The major problem with getting medical marijuana is that in most states it is not legal. And in the states that it is legal your condition may not be on the approved list in order to get approved for medical marijuana. 

If you feel that you or Someone you know could benefit from the use of medical marijuana in a state where it is not legal. Please contact your legislator and check for any movements in your state for the legalization of medical marijuana. 

Note: To see the forms and ways to consume medical marijuana check out this website. https://unitedpatientsgroup.com/resources/methods-of-consumption

While this method of pain/symptom control may not be for everyone. Research clearly shows that it is helping people. It is not a common method of treatment yet, but based on the increased use of CBD I think it will become more and more common. 
-Amber

Resources:

https://www.leafly.com/news/health/treating-lupus-with-cannabis

Marijuana Rated Most Effective for Treating Fibromyalgia

Treating Interstitial Cystitis with Cannabis

Can Marijuana Relieve Menstrual (and Possibly Endometriosis) Pain?


http://www.impactcannabis.org/endometriosis/

https://www.whaxy.com/learn/does-cannabis-treat-lupus

Alternative Therapy to Treat Fibromyalgia 

Fibromyalgia……..Is defined as a widespread musculoskeletal pain disorder accompanied by fatigue, sleep disturbances and memory issues. At this time there is no cure and no definite treatment. The standard treatments right now are pain killers, antidepressants and anti-seizure medications. These help reduce the symptoms but don’t really treat the condition as a whole. So many people will turn to alternative therapies to help control the symptoms of their fibromyalgia! Let’s take a look at some of the most popular alternative therapies.
One of the most popular natural therapies is YOGA. There are several studies that show that yoga may help ease the symptoms of fibromyalgia Researchers for pain have linked yoga to lower levels of fibromyalgia-related pain among those who participate in yoga. Another study published by the Journal Of Pain showed that people who participated in a 75 minute yoga class twice a week for eight weeks reported less pain and had a lower stress hormone cortisol level.
Another popular alternative or natural therapy is meditation. Dr. Daniel Lewis says that meditation may change the way your brain functions and helping to improve symptoms of fibromyalgia. A study published in Current Pain and Headache Reports stated that meditation can relieve fibromyalgia-related pain. Meditation may help calm the mind and ease the body, promoting deep rest and relaxation. End result it may help your body heal itself.

5 HTP has also found to be a popular treatment. It is a natural Amino acid that helps your body produce serotonin, which is the chemical that helps control mood. An article published by the Rheumatolgy International suggested that 5HTP may help Improve fibromyalgia symptoms. It can help to relieve pain, ease morning stiffness, fatigue, and possibly anxiety!
Even though it sounds scary, there has been a lot of research that shows acupuncture can help relieve fibromyalgia symptoms. Especially pain symptoms. With acupuncture one or more dry needles is inserted into the skin and underlying tissues at a specific point. Then the needle is gently twisted or manipulated causing a measurable release of endorphins into the bloodstream. (Endorphins are the body’s natural painkillers.) One acupuncture treatment for some may last weeks to help alleviate chronic pain. A recent study showed patients who had acupuncture had a decrease pain and increased quality of life.
Chiropractic care is a very common complementary or alternative care for fibromyalgia. It is used to treat pain in pressure point areas, back pain, neck pain, shoulder pain etc. Chiropractic care may be effective care for fibromyalgia because it may reduce pain levels and increase cervical and lumbar ranges of motion. Chiropractic care is based on the principle that the body is a self healing organism. To reduce pain and increase healing the chiropractor will adjust the back. The goal being to restore normal transmission nervous impulses by  increasing the mobility between vertebrae, which may have become restricted, or slightly out of proper position.
There are several herbal agents that are used to treat in the treatment of fibromyalgia. Here are just a few:
SAMe (S-Adenosyl-L-Methionine)-This amino acid derivative may boost levels of serotonin and dopamine, another brain chemical. Limited research suggests SAMe may improve mood and sleep.

MAGNESIUM -Low levels of this element may be linked to improving fibromyalgia symptoms. However, research has not turned up solid evidence that taking magnesium supplements improves symptoms.

MELATONIN-This natural hormone is often used in supplements to help improve someone’s sleep patterns. It may also ease fibromyalgia pain.

ST JOHNS WORT- Though this herb is sometimes used to treat certain fibromyalgia symptoms, there’s no solid evidence that it works. A few studies suggest it may help with mild depression. But it can also limit the effectiveness of some medications.

There are many options for alternative therapies for the treatment of fibromyalgia, I’ve only covered a few here. Remember that you always need to check with your healthcare provider before starting any alternative therapy. I hope that something here will help you and give you some relief.

-Amber

Resources:

http://www.m.webmd.com/a-to-z-guides/features/alternative-treatments-for-fibromyalgia

http://www.m.webmd.com/a-to-z-guides/natural-therapies-and-alternative-treatments-for-fibromyalgia
http://www.healthline.com/health-slideshow/fibromyalgia-natural-remedies#8