News

FOR IMMEDIATE RELEASE: 04/20/19

Angela Braun 

(715) 370-1736

2nd Annual Meagan’s HOPE Memorial Walk and Roll

Ehlers Danlos syndromes Awareness & Suicide Prevention

Wausau, WI: On Saturday, May 4, 2019 at 1 PM EDS Wisconsin, Inc. and the Braun Family are hosting the Second Annual Meagan’s HOPE Memorial Walk and Roll for Ehlers Danlos syndromes Awareness & Suicide Prevention at Weston’s Kennedy Park. In its first year 186 people came to this event from across the country. The family hopes to double that number this year. The public and media are encouraged to attend. Prior to the walk, speeches will be done by Tammy Kosbab of EDS Wisconsin, Dr. Linda S. Bluestein, M.D. of Wisconsin Integrative Pain Specialists, Licensed Professional Counselor Trena Loomans of The Caring Tree Children’s Counseling Center, and others. A special announcement will be made prior to the one mile walk and roll.

Ehlers Danlos syndromes (EDS) are a group of heritable connective tissue disorders that impact individuals of all ages & genders. Frequently misdiagnosed as Fibromyalgia, Chronic Fatigue Syndrome, or various psychosomatic illnesses, EDS affects nearly every body system since connective tissue is what holds the body together like glue. Many of those who have EDS experience daily pain, excessive fatigue, increased bleeding, and they have overly flexible joints which can lead to joint dislocations, as well as many other seemingly unrelated symptoms. Support and resources for medical professionals and patients affected by EDS remains limited. Sadly, EDS frequently goes undiagnosed for many years causing patients and medical professionals unnecessary suffering. Diagnosis is validating and empowering for patients, their loved ones and medical professionals! Early diagnosis enables proper treatment strategies, fewer unnecessary medical visits, and prevents injury.

Born December 12, 1987, Meagan Rae Braun was a kind, caring, loving individual with a most beautiful, gentle soul. She grew up in Medford, WI and then resided in Weston. Meagan was an outstanding mother of two young children who truly enjoyed helping others while continually seeking knowledge, truth, peace and harmony. Even so, behind her beautiful smile, Meagan suffered with multisystemic illnesses including EDS, hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hyperPOTS), allergies, sensitivities, and more. Frustrated with limited treatment options for her health, in addition to battling postpartum depression, Meagan lost all hope resulting in her death from suicide on April 24th, 2017. This annual event is held in honor of Meagan’s gracious spirit.

The mission of the not-for-profit organization EDS Wisconsin is to provide support and resources to Wisconsin patients and medical professionals about Ehlers-Danlos Syndromes and related conditions via education and research. Together with the Braun Family, this Walk is an opportunity to increase awareness, support, resources, and education for those affected by EDS and to prevent suicide. There will be t-shirts, lanyards, balloons and rock painting for participants.

This event is proudly supported and sponsored by Wisconsin Integrative Pain Specialists, The Caring Tree Children’s Counseling Center, Gray Law Firm, Chrysalis Massage & Consulting, Burkhardt Physical Therapy Center, Natalie Helen Photography, Black River Hemp Company, Evolve Counseling, Sport & Spine Physical Therapy, Tools of Marketing, and Mariah Liisa Design. We are fiscally sponsored by EDS Awareness aka Chronic Pain Partners.

Please join us at Weston’s Kennedy Park on Saturday, May 4, 2018. Registration begins at 11:30 am. Donations can be mailed to EDS Wisconsin, Inc. PO Box 485, Sun Prairie, WI 53590.

Sincerely, The Braun Family

 

 

THANK YOU TO THESE GENEROUS SPONSORS FOR BRINGING AWARENESS AND HOPE TO OUR COMMUNITY!

Introduction to mast cells and MCAS

Hey everyone, it’s Sam again! I reached out to you guys via the Facebook community a few weeks ago and got a few requests for information on mast cells and MCAS. I personally don’t have MCAS, so it’s not something I research as intently, but I LOVE immunology and thought this would be a really fun thing to talk about.

Immunology can be a scary subject, even for biologists. It’s very detail-oriented, there are a LOT of things going on, and the scientific community still doesn’t understand a lot about how the players in the immune system work. We do know that the immune system interacts with other parts of the body, like the nervous system (neuroimmunology recently crossed my radar and I’m enthralled!), to cause some interesting effects, so immunology is becoming a hotter and hotter topic for research.


The big player in MCAS is, as the name implies, the mast cell. To understand MCAS, we need to break down what mast cells are and what they do.

These guys are mast cells:

They have a bunch of receptors on their cell surface that let them talk to other cells in the body and receive input from both other cells and the environment they’re in. All those dark purple circles you see in the image above are called granules. Many different cell types have granules in them, and they can hold different types of chemicals (often called cytokines or chemokines) depending on what the cell needs to do. Mast cells usually have granules full of histamine, but they can also hold enzymes that chop up proteins (proteases), neurotransmitters like serotonin, and a bunch of other types of chemical messengers and enzymes. Histamine is the compound we usually talk about when discussing mast cells and allergy, and it makes a lot of different things happen depending on where it’s released.

So….what exactly does histamine do? There are 4 main histamine receptors in the body, and when they’re activated, each one can cause different things to happen. Some are more common in different parts of the body, which is why histamine can trigger different kinds of reactions. From typical seasonal allergy-type reactions or skin irritation to GI symptoms, to nervous system effects like nausea and vertigo, and even anaphylaxis, histamine can trigger a wide range of symptoms which is why MCAS can be difficult to diagnose. Many signs can be relatively benign or nonspecific, but when typical allergy testing comes up negative, it may be time to investigate MCAS.

Keep in mind that the other chemicals mast cells release can cause other things to happen, too. It’s not all about histamine!


So how are mast cells activated? Mast cells have cell surface receptors that can bind allergens, specific classes of antibodies, and signals sent out by other immune cells. When activated, mast cells release their granules, which then break open and release their contents into the local environment and trigger other events to happen.

It isn’t fully understood why mast cells don’t behave normally in MCAS. It’s important to note that MCAS is not the same as mastocytosis, which is characterized by an abnormally high number of mast cells; in mast cell activation syndrome, mast cells are activated too easily and are releasing their contents in situations they typically wouldn’t. Some environmental triggers can stimulate mast cells, like excessive heat or cold, sunlight, mechanical irritation, and chemicals or products on skin. There’s an observed correlation between MCAS, POTS, and EDS that isn’t fully understood.

MCAS is a very involved disorder, and it would take significantly more than just one post to do it justice. Hopefully this quick overview was helpful! Don’t hesitate to reach out to me via the EDS, Wisconsin Inc. contact page, or on the EDS & Joint Hypermobility Wisconsin Facebook page if you have anything in particular you’d like for me to discuss in detail.


*Disclaimer: I am not a physician, and I am not qualified to give anyone advice about their medical condition. All posts written by me are strictly meant to inform and empower patients and medical professionals alike, with the information they can use to better communicate with each other. If you have questions about your condition, please ask your doctor.


Citations:

  • Mast cell secretory granules: armed for battle. Wernersson S, Pejler G. 2014. Nature Reviews Immunology. 14: 478-494.
  • Mast cell activation syndrome: a review. Frieri M, Patel R, Celestin J. 2012. Current Allergy and Asthma Reports. 13(1): 27-32.
  • https://tmsforacure.org
  • http://www.mastcellaware.com
  • Mast cell activation syndromes. Akin C. 2017. Allergy and Clinical Immunology. 140(2): 349-355.
  • Misbehaving Mast Cells in POTS and Other Forms of Dysautonomia – https://vimeo.com/246313546 (I didn’t actually watch this, but thought it would be a great resource!)

 

FOR IMMEDIATE RELEASE: 04/23/2018
Angela Braun
(715) 370-1736

Meagan’s HOPE Memorial Walk
Ehlers Danlos Syndromes Awareness & Suicide Prevention

Wausau, WI: EDS Wisconsin, Inc., EDS Wellness, and the Braun Family are hosting the First Annual Meagan’s HOPE Memorial Walk for EDS Awareness & Suicide Prevention at Wausau’s Oak Island on Saturday, May 5, 2018. Special Guests in attendance include Geneticist Dr. Juan Dong and Jessica Reed of PreventionGenetics, Pain Specialist Linda S. Bluestein, M.D., Executive Director Kendra N Myles of EDS Wellness, Executive Director John Ferman of EDS Awareness, and the Co-Founder of Advanced Tele-Genetic Counseling. A special announcement will be made at 1:00 pm followed by a brief Q & A session and a one mile Walk.

Ehlers Danlos syndromes (EDS) are a group of heritable connective tissue disorders that impact individuals of all ages & genders. Frequently misdiagnosed as Fibromyalgia, Chronic Fatigue Syndrome, or various psychosomatic illnesses, EDS affects nearly every body system since connective tissue is what holds the body together like glue. Many of those who have EDS experience daily pain, excessive fatigue, increased bleeding, and they have overly flexible joints which can lead to joint dislocations, as well as many other seemingly unrelated symptoms. Support and resources for medical professionals and patients affected by EDS remains limited. Sadly, EDS frequently goes undiagnosed for many years causing both patients and medical professionals needless suffering. Early diagnosis is validating and empowering for patients, their loved ones and medical professionals! Diagnosis enables proper treatment strategies and fewer unnecessary medical visits.

Born December 12, 1987, Meagan Rae Braun was a kind, caring, loving individual with a most beautiful, gentle soul. She grew up in Medford, WI and most recently resided in Weston. Meagan was an outstanding mother of two young children and truly enjoyed helping others while continually seeking knowledge, truth, peace and harmony. Even so, behind her beautiful smile, Meagan suffered with multisystemic illnesses including EDS, hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS), allergies and sensitivities, and more. Frustrated with limited treatment options for her health, in addition to battling postpartum depression, Meagan lost all hope resulting in her death from suicide on April 24th, 2017. The Walk is being held in honor of Meagan’s gracious spirit.

The Mission of the not-for-profit organization EDS Wisconsin is to provide support and resources to Wisconsin patients and medical professionals about Ehlers-Danlos Syndromes and related conditions via education and research. Together with the Braun Family and the prestigious national 501(c)3 organization EDS Wellness, this Walk is an opportunity to increase awareness, support, resources, and education for those affected by EDS and suicide. There will be raffle prizes, t-shirts and balloons for participants.

This event is proudly supported and sponsored by Wisconsin Integrative Pain Specialists, Linda S Bluestein, M.D., Prevention Genetics, The Caring Tree Children’s Counseling Center, Advanced Tele Genetic Counseling (ATGC), Concrete Creations of Wisconsin, Inc., EDS Awareness, Mariah Liisa Design, LLC, and Tools of Marketing, Inc.

Please join us at Wausau’s Oak Island on Saturday, May 5, 2018 at 1:00 pm!
For more information on these conditions and to pre-register go to www.EDSWI.org

Sincerely,
Angie Braun

FLYER Meagan’s Walk

Meagan's Walk Sponsor List

Why is collagen so important, anyway?

By Guest Author, Samantha Geiger

Hey everyone! Before I dig into some science, I’d like to take a second to introduce myself. My name is Sam and I’m a veterinary medicine student at UW-Madison (I also have a BS in microbiology and genetics), science enthusiast, and fellow zebra. I’m very passionate about science communications and making difficult-to-understand concepts more accessible to people with non-scientific backgrounds. When it comes to EDS, I strongly believe that understanding the biology behind the disease empowers patients and allows them to ask their doctors the right questions to get proper care. Additionally, I want to provide resources for medical professionals so they may learn to care for patients with diseases they may not be familiar with – I’ll be leaving citations at the end of each post for this purpose. I’m exceedingly grateful to EDS WI, Inc. for giving me this opportunity. As this is my first post, I thought it would be fitting to discuss what collagen is, why it’s so important, and why it can cause different manifestations amongst EDS subtypes.

I also want to take a second and clarify a critical point: genes set the template for the body to make proteins, and proteins are the workhorses of the body. Proteins are what actually “do” things and carry out a function. If you have bad blueprints – mutated genes – your body doesn’t make a normal protein. Sometimes, like in the case of EDS, these abnormal proteins can have noticeable effects in the body. Proteins are made in different parts of the body at different levels due to a mechanism called “gene expression.” This is why you have nails at the end of your fingers instead of on your forehead!

Most of us know that collagen is a foundational protein found throughout the body and that it’s essentially a “building block” for different structures, but did you know there have been 29 different collagen proteins identified to date? Some of them are more common or have a bigger impact on the body when they don’t work properly compared to others. The first five types are perhaps the most important and well-understood:

  • Type I collagen is by far the most common in the body and makes up parts of your skin, tendons and ligaments, blood vessels, and bones. It often works in partnerships with other kinds of collagen.
  • Type II is a huge component of cartilage.
  • Types III, IV, and V help anchor cells to each other (using what’s called a “reticular fiber”) and to other types of tissue, in some cases forming barriers called “basement membranes” underneath layers of cells. These collagen types are important for microscopic, cell-to-cell activity.

As you can see, each collagen type has its own job to do, which is why there are different subtypes of EDS that can be described by which collagen protein isn’t working. For example, mutations in type III collagen can cause vEDS. This makes sense because the fibers type III makes are critical for forming the architecture of the heart and major blood vessels and give them the ability to stretch and accommodate changing amounts of blood.

Some types of EDS don’t have collagen mutations at all! In these cases, proteins in the body that have to work with or use collagen are mutated and lose their ability to do their jobs. Essentially, the body’s collagen is fine but it can’t be used properly. In periodontal EDS, C1R, a gene involved in a specific part of the immune system, is mutated and collagen is normal. However, the culprit protein uses collagen to make itself. When C1R can’t do its job, the mouth ends up becoming very inflamed, which can cause dental problems.

We’ve all heard the metaphor that likens collagen in the body to building a house. If you have a crummy foundation – mutated collagen – the house will probably wear out more quickly than it should. To add some nuance to the metaphor, imagine collagen is the wood you use to build your house. It forms the walls, the roof, the floor, and maybe some structures inside like cabinets and doors. All in all, pretty important structures to have in a place to live, right? If all of your wood is bad, it’s going to have pretty serious effects throughout the house. Maybe only the wood you use for your roof is bad – your walls will still stand, but maybe some rain leaks in through the ceiling. Maybe your carpenters don’t know how to use the perfectly fine wood you bought, and that’s the reason your floor caves in.

Thinking about collagen this way can be a really helpful tool for understanding why different types of EDS exist. There isn’t just one type of EDS, just as there isn’t one purpose for the wood you buy to build a house. Medically, you don’t treat similarly or lump together patients with different types of EDS, much like you don’t have your carpenter install your plumbing.

*Disclaimer: I am not a physician, and I am not qualified to give anyone advice about their medical condition. All posts written by me are strictly meant to inform and empower patients and medical professionals alike, with information they can use to better communicate with each other. If you have questions about your condition, please ask your doctor.


Citations:

https://www.ehlers-danlos.com/eds-types

Preparation and characterization of the different types of collagen. Miller EJ, Rhodes RK. 1982. Methods Enzymol. 82 Pt A 33-64.

Collagen: a overview. Miller EJ, Gay S. 1982. Methods Enzymol. 82: 3-32.

Elastic and Collagenous Networks in Vascular Diseases. Arteaga-Solis E, Gayraud B, Ramirez F. 2011. Cell Struct. 25(2):69-72.

Periodontal Ehlers-Danlos Syndrome is caused by mutations in C1R and C1S, which encode subcomponents C1r and C1s of complement. Kapferer-Seebacher I, Pepin M, Werner R, et al. 2016. AJHG. 99(5):1005-1014.

By Tammy Kosbab, Edited by Jude Houston

The other morning when I woke up ALL of my muscles ached, my head was throbbing, my eyes felt a little puffy, and I really, REALLY did not want to get out of bed. Similar to the past, I couldn’t understand what I did to cause this and knew it was best to forget even trying to figure this out because of the awful brainfog! It seemed my entire body had turned into muck overnight.

Thankfully, because of Dr Lawrence Afrin, Dr Anne Maitland, Dr Mathur, Dr Steinman, and others in the EDS community like EDS Wellness, EDS Awareness, and the EDS Society, I now know that these symptoms were a result of my being swollen, inside and out. I also now know that this swelling is called angioedema and that it is caused by “allergies.” The swelling certainly wasn’t the kind where a stranger could look at me and immediately notice. However, it was similar to the kind of swelling I had experienced my entire life that I always thought meant that I had a chubby face. I used to think that it was normal to have red marks and indents on my skin from my clothing for hours after changing, or similar red marks and indents on my skin from my bedsheets for hours after waking up.


These are some photos of me swollen and not swollen. It is NOT always this noticeable.

Despite my inability to think clearly, it was apparent that there was only one thing I knew I had to do. I reached for the medication that is ALWAYS within my reach because I know it helps significantly. I took the Gastrocrom. Unhappily, I crept out of bed, went to the bathroom and caught a glimpse of the mirror. Once again, I saw my “old” swollen face, which is the face that I previously thought was ‘normal.’ There was a red rash on my face, a large indentation and two blisters where my skin must have tried to swell under my CPAP mask when I was asleep. To test my Mast Cell Activation Disorder (McAD) diagnosis, I stepped on the scale to see if indeed the diagnosis was correct and…literally overnight, I gained about 6 pounds from my previous weight. Wow! Even in the past and prior to this diagnosis, I gained 9 pounds in 12 hours or less and I thought that was normal.

I’m still amazed that ALL of the seemingly unrelated symptoms came back. Even now, days later, when I stand up too fast, I got dizzy and when I am upright for too long, I become very tired. I now had burning tongue/mouth sores, bleeding gums, heart palpitations, nerve pain, muscle pain, fascia pain, eyeball pain, ear pain, joint pain, and in case I forgot to mention it – I had debilitating pain! Sadly, like many others a Ehlers-Danlos Syndrome (EDS), this is how I previously felt on a daily basis. It had became my normal throughout my entire life until I was properly diagnosed.

Since my diagnosis fo MCAD, my health issues have changed for the better these past 4 months because now I know why my issues escalate and what I can do about it to perhaps reduce the symptoms.

Here is a quick and hopefully simple explanation of how I understand MCAD for those who don’t quite understand it. Mast cells throughout the body contain histamine, heparin, cytokines and other “mediators.” Mast cells are commonly known for releasing these mediators in response to SPECIFICS allergens for retain people, such as strawberries, peanuts, mold, pollen, grass, and others. These are called IgE mediated AKA specific allergies and this is what the allergist would look for when performing a skin prick test. THis IS NOT Mast Cell Activation Disorder.

Instead, MCAD is when a person has a normal number of unstable mast cells which are easily triggered to release the mediators once a certainly threshold is reached. It’s like mast cells with ADHD – they overreact and can release mediators to just about any non-specific thing in the environment.

In other words, the resulting histamine and other mediatora that are constantly being released in the body wreaks havoc! If you want to know what MCAD can do to a person research the word “histamine” and you will find histamine allows blood vessels to be permeable and thus, this is why fluid leaks out of the vessels resulting in tissue swelling.

Think about this: Where are blood vessels located? All over, mostly INSIDE the body, right?
Can we see them? Not usually.
So if a blood vessel in the ____________ (insert internal body part name here such as stomach, colon, brain, spinal column, muscle, etc.) is leaky, can a person see that this internal body part is swollen? Probably not.
Can a person feel it? Well I certainly can, but thats only because I now know that these things aren’t normally normal and since then hey typically happen at the same time that I have all of the other symptoms, it makes complete sense.

The day before this happened it was a beautiful spring day with wonderful fresh-air – pollen and all. I tried to stay inside but have you ever tried to stay away from the air?!? Probably my biggest mistake that day was forgetting to take one of four doses of the Gastrocrom. Live and learn!

Gastrocrom is a medication that “calms” down or stabilizes the mast cells. It’s like taking a bag of oranges and making the holes in the net smaller so the oranges don’t fall out so easily. Imagine the net is the mast cell and it is holding the oranges, which represent the histamines and other mediators.

When the histamines, for example, are released they circulate in the blood until they find a place where they can plug in and be utilized. These are called histamine receptors. There are 4 receptors in the body, but only two of them have known medications that block the action of the Histamines. THESE are called H1 and H2 receptor blockers. I take the H1 blocker called Allegra in a high dose and the H2 blocker Pepcid in a higher than normal dose under the guidance of my doctor.

Tomorrow will be my recovery day which includes relaxation, a chance to retighten the netting and decrease the swelling while also getting work done. The fridge and toilet are also close by so I think I should be good. Ah yes, this is life with the ups and downs of MCAD.

If this sounds like you or if you wish to understand more, please do research and find someone to help you. It is very important when finding someone to help you to remember this: MASTOCYTOSIS IS A CONDITION OF TOO MANY CELLS and it is not MCAD. Also there is not a lot of research that has been done on MCAD and many medical professionals may have never even heard of it.

My favorite resource is the book: Never Bet Against Occam by Lawrence Afrin. Recently I had the pleasure of meeting him at an EDS Wellness’s retreat “Wellapalooza”. Fortunately, I had the amazing opportunity to have relatively long conversations with both Dr. Afrin and Dr Maitland about MCAD in 2017, and was also able to hear their presentations on MCAD several times in person. This information presented greater understanding and direction and provided an opportunity to take back control of my health even when a spring day fills my life with fresh air. Find their presentations on EDS Awareness and EDS Wellness websites.

How I Work Full-Time With Ehlers-Danlos and Persistent Pain

Written by Tammy Kosbab, Edited by Jude Houston

This article was written for and is dedicated to everyone who has said to me, “How do you do it?”

A friend recently told me of a conversation she had with her husband shortly after her diagnosis in regard to her continued desire to work despite her pain. His reply to her, in the most loving way of course, was “You can either be in pain and not work, or be in pain and work.” If you think about this, it is so very true! Regardless of what we are doing, if a person has chronic pain, better now described as persistent pain, they will have pain no matter what they are doing. Yet the reality is it is not easy to work full time with persistent pain. I must say though due to my dedication (um, obsession!) with the work I do, I have found “where there’s a will there’s a way” is most certainly true for me. I try to maintain a positive outlook on my pain. Instead of a barrier preventing me from doing things I wish to do, my pain is an obstacle to overcome (sometimes a tremendous obstacle) which ultimately makes me stronger.

As a person who has always said things could be done when everyone else says it couldn’t be done, I will still try and envision an outcome that I realize may actually be unrealistic. This is because I believe a person MUST be able to envision a positive outcome in order for the task to be completed – I mean REALLY visualize an optimistic result, from the emotions it brings, along with the smell, taste, and everything which goes with successful completion of the task. Even if you don’t complete 100% of the task, you will still be closer to your goal of 100% than if you had never envisioned it at all. Don’t get me wrong, I have certainly had many days where I am extremely frustrated, feel defeated, wonder why I even try, and yes, I even cry at times. Sometimes those of us with persistent pain go to this dreary place. In the blog titled, When Fear of Missing Out is Reality by Stephanie Goettl from February 5, 2018 at www.edswi.org, Stephanie says, ”Acknowledge the frustration but DO NOT live there. If you pretend it doesn’t bother you, that usually makes it worse. Admitting you’re hurting over the unfairness of it is okay, but then, move on.”

My goal in this blog post is to provide helpful hints on how I am able to work full time despite pain and limitations in hopes others may utilize some of these suggestions idea. Some of the items are obvious, such as workplace ergonomics, while others are not-so-obvious suggestions many people may “know’ but don’t realize how helpful they may be! I hope I am able to help some of you with your desire to work by providing this information.

First and foremost, enjoy your job completely! I understand some of you may disagree with me for saying this and you may think enjoying a job isn’t even possible. I don’t believe YOU! There is something that each one of us enjoys and is passionate about. Once you know what that is, then ask yourself, “How could I earn an income doing what makes me happy?” If you’re not qualified to earn income in that particular role, maybe you could enroll a few classes to further your education. If taking classes has been difficult in the past, maybe the suggestions below may provide some direction to help you. The reason this is my number one idea is because if you’re fully engaged in your job, or anything really, this active engagement is a distraction to the pain. Find work you enjoy doing so much that you become so consumed that you’re mind has no room for pain. To be perfectly honest, this is one of the biggest reasons that I work as much as I do!

Have a GREAT boss. If you have any doubts of good rapport with a supervisor when you’re interviewing for a position, avoid taking this new position. Oftentimes it isn’t so much the job itself that causes struggling as this occurs much more often when you have an overbearing, micromanaging, or rigid boss. It most definitely makes simple things, like frequent position changes, flexible hours, or requests for accommodations much more challenging. There is not a job out there that should cause increased pain. The job market in the region I live is competitive enough to accommodate our next generation of workers. The next generation of workers have learned flexibility while they attended school, unlike my generation where we sat at one desk for nearly the entire day and there were little to no options for “flexibility.” This new generation of employees knows how important it is to engage in movement and mindfulness throughout daily living in order to be healthy and more productive. I am very blessed as my boss is amazing. She allows me to have flexible hours as long as I complete my work on time, which is an absolute necessity when a person has frequent doctor appointments for themselves as well as for his or her children who also have chronic conditions and are home from school more frequently than other children.

Supportive family, friends, and coworkers. I have a wonderful network of family, friends and coworkers. I believe they are supportive of me because they know I do my best every day. They are supportive because they know that I do what I am able, when I am able, and that I am motivated to do everything I can on a daily basis to feel well because I am driven by the need to help others as I do in my career. Family and friends also know that I value my integrity and always try to do the right thing. My lack of a mouth barrier may sometimes make me look like the bad guy, such as when I tactfully – or not-so-tactfully – tell someone they need to put on deodorant. At the same time, people know they never have to wonder what I am thinking. People are aware if I have something to say, I will say it and I feel like people actually really appreciate that I can be trusted to tell them the truth, even if it isn’t what they want to hear.

Affirmations book. Almost every day prior to work, I typically start my day reading something which inspires me the rest of my day. A favorite book of mine is called The Language of Letting Go by Melody Beattie. This meditation book is organized by date so each date has an inspirational message. I prefer to simply use my intuition and open to whichever page I feel guided to TRUSTING I will open to the page holding the message I need to hear this particular day. This is one reason I ended up writing this blog today. I just happened to open to June 19th and the title was Making Life Easier. The overall message is that life does not have to be hard! The author states, “Our value and worth are not determined by how hard we struggle.” Throughout this helpful book, the author explains the need to let go of the belief that life has to be hard, to let things flow and trust that they will work out. Trust, Acceptance, and Faith!

Medication. For those who have medical conditions, it is important to not miss the medications that are necessary and helpful to manage their conditions. For me, I set timers for reminders to take my medication throughout my workday. Most times I am so engaged in my work I would otherwise forget to take it and when this occurs, I suffer a big crash and then I am not able to work productively. For those who have Ehlers Danlos Syndromes (EDS), oftentimes they have “allergies” go along with it. Newer research is finding that these allergies are caused by non-specific allergens due to overactive mast cells releasing histamines and other mediators throughout the day as a sort of hyper-response. Is it a coincidence that many of us get tired after eating? Is it a coincidence that we experience weakness and fatigue when we get hot? Mast cells can be triggered by just about anything, similar to a full bag of oranges where the oranges are about the same size as the holes in the mesh bag – any little movement would trigger the oranges, as compared to histamines in the mast cells, to fall out! This overactive mast cell condition is called Mast Cell Activation Disorder (MCAD), and newer research is finding that treating these overactive mast cells with mast cell stabilizers like Gastrocrom, as well as taking antihistamines that target BOTH the H1 and H2 receptors on a regular basis has helped many with pain, brain fog, migraines, IBS, and other common symptoms that persons with EDS experience! For more information, please see the other resources about MCAD at www.edswi.org. On a different note, I try not to switch medications often. I take the least amount I need to take for my condition(s) but I take them as regularly as I can. The reason that I feel this is so important is because many people with EDS have medication metabolism issues and oftentimes one medication may make a different one work better or worse. This is called a drug-drug interaction. Therefore, regularity is very important to remain stable.

Hand sanitizer and antimicrobial wipes. We must stay healthy and not get sick. If you are in a workplace outside of your home, I thoroughly recommend these products to avoid illness but if you dislike these products, that’s fine. I know they can be controversial but so far they have helped me even within my home workplace.

Workplace ergonomics:

Standing Desk. I appreciate my standing desk tremendously because it offers options. It allows me ability to work while standing as well as when sitting. I also have the option of how high or low I prefer the desk to be. If I need to rest one foot on my chair while I am working, I am able to move the desk to a different height. Also, when I am standing and waiting for a page to load, I have an ability to do some squats and/or exercises for strength or to get the blood moving. I may also do a little bit of stretching. Be careful if you’re doing these things though because I have found that too frequent stretching causes additional increased pain for me later on in the day or evening.

Monitor riser. The riser provides options about how high the monitor is so I am able to decide which position is best for my neck. At this time, I am using a board game as the riser for my laptop, which is on top of the standing desk. You could also use a book or two to lift your monitor to the appropriate height. Typically, your monitor should be a full arm length away from your body (18-20”) and the top of the screen is at or below eye level so the user can read it without bending their head or neck down/back. If multiple monitors are used, the position of the primary monitor is directly in front of the user and the other monitors are directly beside it. If time is split evenly between monitors, they are next to each other within a comfortable viewing angle with minimal head movement. A laptop is typically impossible to utilize ergonomically as your eye level is not at the top of the screen unless one operates a wireless keyboard and the laptop is lifted to the appropriate height.

Wireless, ergonomic keyboard. I have a Logitech K350 2.4Ghz Wireless Keyboard. This wireless ergonomic keyboard allows me to place the keyboard anywhere I need to so my hands, wrists, and neck are in a neutral straight alignment with my elbows flexed to 90 degrees and held close to my body. It is imperative everyone avoids straining joints or causing overuse injuries which could lead to tendonitis or other additional problems.

Mice. It is important to have a good mouse and to also have another mouse available for use as a backup when the good mouse becomes too repetitive and causes increased pain. I have the Logitech M570 Mouse. It has a tracking ball which I can navigate the screen by using my thumb. There are days though the rolling ball hurts my thumb, and then on those days I will secure tape to my thumb to avoid additional pain. It appears very helpful for me to have the option of using a regular mouse or this one with the rolling ball. The mouse or track ball should be located right next to the keyboard so it can be operated without reaching. Frequent position changes are not only important but necessary when dealing with EDS and/or persistent pain.

Foot stool. I keep a foot stool under my desk so I am able to shift positions more often. I could place both feet on it if I am sitting and when standing, I can put one foot on it and if I wanted to, I could even sit on it if I needed to. The point is, the foot stool provides options which allow me greater ability to continue working.

Proper lighting. Avoid glare from windows and lights. LED and fluorescent lights appear to bother my eyes causing headaches. I have two small lamps on my desk with 40 and 60 watt incandescent bulbs. This provides me the option of adjusting the lights in my space to avoid headaches. I also have a few big windows in my home office and the window treatments allow me to have as much or as little natural light in my space as I want.

Talk to text software. On my computer I have Dragon Software which allows me ability to quickly and easily type up long documents without the strain on my hands from typing as Dragon will type what I speak into the computer microphone. Luckily, I was able to get this software at a reduced price through my college. Other times when I need to write up a long document, I will use my email or Notes app on my iPhone and use the talk-to-text feature on there and then email the text to myself. For further workplace ergonomic information: https://www.osha.gov/SLTC/etools/computerworkstations/checklist_evaluation.html

Personal Bracing Assists:

Clavicle Brace. The clavicle brace is a soft white brace prescribed by my physical therapist years ago which gently holds my shoulders back. While it appears to look like a vest, there is no material in the front. Therapists typically call this is a “Figure 8 Clavicle Brace.” This brace allows my upper extremity and upper back muscles the option to rest and relax while I am working. I don’t use this brace or any of my braces every day, but my braces provide OPTIONS for relief which I feel are absolutely necessary if you have neck, back or shoulder pain and work at a computer.

Neck Brace. This gives my neck muscles a rest on some days but again, while I don’t use it very often, some days I must and I have the option of wearing it for relief. Tape, ring splints, Gold’s Gym glove. I have many, many rolls of different kinds of body tape: white sports tape, Kinesio tape, and waterproof, spongy skin-colored sports tape. I use it to tape up the joints of my fingers and my thumb as I use my hands to type all day and it appears to help me reduce additional pain. Many people use Kinesio tape on their back to help remind them to maintain a good posture. Other people such as myself, use it to stimulate the sensory nerves on the skin which essentially “takes away” or distracts the nerves from sensing pain. It is not 100% fool proof but anything which could distract heightened pain nerves is a positive in my book!

Personal uplifting workplace sensory assists:

Essential Oils. For Christmas, my daughter Kailee presented me with a desktop essential oil diffuser. Some days I need to be reminded to breathe and the diffuser stimulates the senses and is a nice distraction to the ho-hum of daily activities. In fact, research indicates if we participate in deep breathing (6 repetitions, 6 times per day), this will encourage greater oxygen to our oxygen depleted nerves to promote decreased nerve pain. You could set reminders for this too throughout your day. With my newly acquired diffuser, I am reminded how the sense of smell is so very powerful. For example, like many others, I STILL recall the smell of my Grandmother’s house from back when I was a child. At the time I was about 5 years old, I really did not like the smell of her home at all. Yet now as my grandmother is no longer with us on Earth, when I get a whiff of this very same air freshener I previously disliked, I immediately have positive emotions and memories about being at her house and eating bacon, eggs, and biscuits and gravy at her 1970’s style dark brown wood kitchen table. I am also reminded of her little orange sports car, and the time my mom and I were brushing our teeth at Grandma’s bathroom sink and I remember how my mom was watching me in the mirror and when I spit the toothpaste into the sink, mom spit onto the floor. We laughed and laughed and laughed and even now it makes me happy and brings me positive feelings. Our sense of smell is strong enough to cause these positive associations made in an instant – with zero effort or control – from a single whiff of a particular scent. In fact, the sense of smell is very strongly correlated to feelings and emotions. Therefore, if you have a scent that has positive associations for you, it can actually help you a little with pain by triggering “feel good” hormones and memory associations. I also believe we should be careful utilizing fragrances or essential oils at times of high pain or a bad day because we may risk creating a negative association with the scent.

Music. Another pain diversion is music which I like to include during my workday. I find music is not only quite relaxing, it most definitely provides further distraction from the pain through the auditory sense of hearing!

Photos. Our sense of sight provides additional distraction and helps us to focus on the positive. On the side of my desk I have photos of family members, friends, and persons with EDS who have passed. This collections of photos are here as motivation to keep going and reminding me of my life’s purpose – which is to help others who are also suffering so they may find answers and solutions to live their life to the fullest despite pain and limitations.

Tokens. Within my eyesight at my desk, I also have notes from friends and other little uplifting items which automatically recreate positive feelings. Again, this helps reproduce positive emotions and associations throughout the day with merely a brief view of the tokens. My favorite item is a yellow coffee cup I painted with my kids at a local painting/craft shop about five years ago. I remember the day well! I went with my children and what fun we had just hanging out, talking, laughing while we were painting. As my late mother LOVED the color yellow because it reminded her of sunshine and smiley faces, I just had to choose yellow. I also painted my children’s names on the cup because…well, they are my world!

Incorporate building strength and endurance because… why not?

Under Desk Treadmill. Recently, I purchased a treadmill that goes under my desk and I LOVE it. It is the BEST $425 I have ever spent in my entire life and this included shipping and delivery straight to my house! (Unfortunately, it looks like the price has gone up to $459 now but it is worth every penny.) I have walked anywhere from two to four miles every day since it was set up in my workplace at home. The circulation and other health benefits are endless. Even if a person could only walk 1/4 of a mile, this is better than no walking at all. I do realize while this is not an option for everybody such as those who have difficulty walking, those who are able to my find it is a wonderful tool.

Ankle weights. At times, I wear ankle weights on my wrists when I am feeling stronger because hey, it can’t hurt to build some more muscle! Please be aware, this is for a limited time though because I too need to avoid overuse injuries. 3 -5- 10 pound dumbbells. The dumbbells are helpful to have at my desk so if I need a break and am having a good day with increased strength, I am then able to do a few bicep, tricep, or deltoid exercises. Again, we must avoid overuse injuries though so please listen to your body.

 

Here is a photo of my at home workstation. I work here up to 70 hours per week between my two jobs. I hope that these tips and hints are even slightly beneficial to you. In the comment section, please tell me what other tips and tricks you have that allow you to work or attend school on a regular basis.

As a person who has chronic pain, this list was created with the help of members of the group Ehlers Danlos & Joint Hypermobility on Facebook because I thought it would be helpful to have an easy, one page resource to refer to when my mind was consumed by pain, making me unable to think straight. I even printed a copy for my family to refer to so that they could help me after surgery. Here is the pdf that I use at home.

The way that I think about pain relief is how Dr. Pocinki explained it at the EDS International Consortium in 2016:  He said that if you do one thing that takes away ten percent of your pain, that is good, and if you do five things that each relieve ten percent – now you’re at fifty percent pain relief! I have found this to be true and a helpful perspective to have. I believe it is important to try many different things at one time and to not rely on just one.

***Always check with your doctor. This list is not intended to replace medical advice and is solely a compilation of opinions about things that others have tried for themselves.***
  1. “Epsom salt bath (2 cups Epsom salt, 1 cup baking soda for 45 minutes). Since magnesium is best absorbed through the skin, this helps achy muscles. If you cannot take a bath, soaking your feet in a foot bath with Epsom Salt will also work.”
  2. “Heat and/or ice. One or the other, or alternating.”
  3. “I’m always distracting myself from my pain since I’m no longer taking pain meds.”
  4. Self-hypnosis – Find more information on Alicia Cramer’s Facebook Page. 
  5. “Compile a list of books you want to read. The social website Goodreads you can find your friends and family and find out what they like.” A different member adds “I keep a list of books I want to read on my phone, so when I go to the library, I can be in and out, always have a book to read!”
  6. “YouTube video for  Weil’s 4-7-8 Breathing exercise to help counteract the body’s fight or flight response.”
  7. Prayer
  8. H. says “benadryl can curb panic attacks and relax you (can also put you to sleep of course).
  9. “I also keep lavender spray near my bed, and a sleep Febreeze air thingy too.”
  10. “Nice smelling hand cream by my bed.”
  11. “My TENS unithas been a godsend sometimes for all types of pain. I only wish it weren’t dangerous to use on certain body parts (head / chest) otherwise I’d use it everywhere.”
  12. “Natural anti-inflammatories like Arnica — Arnica Montana.”
  13. Biofeedback — hand warming has been amazing both for reducing stress and decreasing pain. Used to be that one could get a cheap indoor / outdoor thermometer and just use the outdoor probe in the fingers to track it. Sadly I haven’t been able to find one in the stores for several years, but they still sell biofeedback thermometers for this.”
  14. B.W. says “Ucla also has great (FREE) MP3 downloads of mindfulness tracks, they have a whole university program on it”
  15. “Tennis balls for myofascial back pain — a cheaper alternative for back knots for people who are single like me, or for those whose partners either suck at backrubs or work too much or for whatever reason aren’t able to help out. 2 tennis balls properly placed lying on a soft surface like a bed or very plush carpet can really do great for trigger points.” To get the back, put the tennis ball in a pillowcase and lean against a wall.
  16. “Taking magnesium can also be helpful, potassium — sometimes we drink a lot water, and don’t have the electrolytes or other things we need to absorb it. Making sure that we have more than just water in the system.” Another member adds, “Coconut water and Gatorade have electrolytes. Be careful with Coconut water if you have high potassium though.”
  17. “Breathing. Deep breathing can do a lot, and as we get stressed we tend to take shorter breaths and deplete our oxygen. Just 10 deep breaths can help counteract this.”
  18. “The word “nothing” repeated to clear my mind.”
  19. M. says “I’ve been listening to some subliminal message on YouTube about ‘healing’ and it helps me relax and eventually fall asleep. Now I don’t know if this will help me when I’m in the worst of my pain but it’s helped some. The messages are about believing your body is healthy, feeling good, etc. Here is another one.
  20. “Power posing! If you don’t do this already, just 2 minutes can change your cortisol (and testosterone) which can both change your stress and pain.”
  21. “Although easier said than done — not isolating. I always do this when my pain gets bad, and I know it makes things worse. It can be scary because people can lack understanding and can be rejecting when we most need empathy (or they can be condescending with sympathy, rather than empathy). I think that groups like this might be able to help, though, because there might be people who have been there. I think reaching out to someone, anyone, can be helpful.
  22. “Of course we all probably know that there is pain and there are times where it feels like (or there literally is) nothing that’s going to fix it or work enough. And that sucks. But I think hope – having hope is the most important thing.”
  23. “For me getting diagnosed with EDS was really important and having validation. So…hope. Music (for me), love, and letting ourselves live on those days when we feel well enough to do so.”
  24. “Making sure we don’t lose sight of those things that make us us.”
  25. “Remembering we are more than just a diagnosis.”
  26. R. says “What I find interesting is that when my pain tries to take me over from head to toe…oddly enough, my ph balance is off. Prylosac (sp) is good. Weird but works, or h202 therapy. Just a spray for under your tongue.”
  27. K. says “The nerves that perceive pain also feel tickles, joy, sadness. You can,only hold one emotion at a time. Choose JOY!”
  28. W. says, “Distraction. Find a movie that makes you laugh till it hurts or scares the heck out of you, you’ll forget about lots of the pain.”
  29. T. K. says: Watch Why Breathwork Matters by Andrew Weil.  Breathwork is a free and easy practice that can significantly benefit your health. Dr. Weil discusses..Vitamins! Vitamin C helps synthesize collagen, Vitamin D helps with body aches and depression especially in the winter, Magnesium and potassium help muscles aches and spasms.”
  30. B.T. says “permission to rest. One thing that sometimes helps me, often helps me, is to lie down and listen to myself breathe. Focusing on my breath as it goes in and out can redirect your thinking away from the pain. It does take a little practice, but it cannot hurt.”
  31. A. says “when I’m in pain I focus on the idea that pain isn’t the worst thing in the world. It’s a thing, and it’s distracting, but I’ve been through worse. This can lead me to overdo it, so be careful, but I suppose you would call it “meditating on the pain” and I believe that has been shown to be effective. It involves deep breathing, and that’s helpful as well. It also distracts me from blaming myself, which is very helpful. Eating right/ electrolytes and water are helpful but if I mess it up I’m very hard on myself, so that’s not a go-to when I’m already beat up.”
  32. T. K. says “app on my phone with binaural beats. Very relaxing. Anything that can help you focus on something other than ‘tactile’ sense can help relieve pain.”
  33. “I put on music of my pre-teens and teens yesterday… A time when I definitely felt better. It was energizing as it woke up that part of my brain when I was singing and dancing and having fun in my less painful years. I haven’t put my list together but you are all doing a great job with the variety of ideas.”
  34. Essential oils
  35. “I play multiple games of Words With Friends, and several other games to keep my brain busy and occupied.”
  36. “Drink hot tea and honey to relax.”
In case you missed it, here is the printable version.  

I am sure that there are many other things that can help relieve pain that did not make it on this list. Some of the more obvious ones were left off because those are things that I try to do on a daily basis anyways, such as consuming a nutrient rich diet, and getting adequate sleep and exercise.

Do you have something that you do for your pain that would be willing to share? Please post it in the comments section and we may add it to the list permanently.

Disclaimer: EDS Wisconsin, Inc. is not a health care provider and does not provide medical advice or treatment. Information provided by EDS Wisconsin is not a replacement for care from a doctor or other health care provider. Please talk with your health care provider about your personal diagnosis & treatment options. All information is for educational purposes only and is not a substitution for medical care or advice. 

Together we are stronger!