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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.

Wisconsin Integrative Pain Specialists Logo

As many of you know, EDS Wisconsin will be hosting a one-mile walk for EDS Awareness and Suicide Prevention on May 5, 2018. This walk is a milestone for the organization as it represents all of the work we have done to strengthen connections throughout the State of Wisconsin and bring about real changes for EDS patients.

We are beyond excited to announce that we have received a Hope Level Sponsor, donating $1000.00 to our event, Dr. Linda Bluestein and her clinic, Wisconsin Integrative Pain Specialists.

Dr. Linda Bluestein

Dr. Linda Bluestein’s decision to be a “Hope” Sponsor for our EDS Awareness and Suicide Prevention Walk is perhaps among the most fitting of sponsorship levels. Aside from her financial support of this specific event, Dr. Bluestein has been an avid and critical supporter of EDS Wisconsin. Her support began even before the organization was officially created and is rooted deeply in her passion for providing for those who have Ehlers-Danlos Syndrome and its related conditions. Perhaps even greater than the specific medical care Dr. Bluestein has provided for her patients, the work she does with and for them provides hope for our community—hope we will be understood, hope we can live with managed pain, and hope EDS patients can receive the care and empathy they truly need from medical providers. We are grateful for Dr. Bluestein’s financial support and just as grateful for the moral support she has provided for so many of our members and for the organization itself. She is a “Hope” level sponsor and a hope-giving medical provider, without whom EDS Wisconsin likely would not be where it is today. Thank you, Dr. Linda Bluestein, for this sponsorship and for everything you have done for us.

Dr. Bluestein’s clinic is an incredible resource for patients and we couldn’t be more thrilled to have her and the clinic as part of this special day. Please visit her website by clicking the image above or RIGHT HERE!

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 (MCA) 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! Prior to this diagnosis, I often 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 have 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 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 of 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.

*Edited to add Live Webinar Registration.  See Below.

Education and Support for Patients and Medical Professionals

Hosted by EDS Wisconsin, Inc. https://edswi.org/

PATIENTS, have you ever gone to a medical appointment and wondered, “Where do I even start? What IS important and what’s NOT important? I hope they believe me.”

MEDICAL PROFESSIONALS, do you have patients who have complex symptoms and wonder, “Where do I start? How do I best help this patient? I don’t have enough time.”

At this first educational event in a series of four for 2018 hosted by EDS Wisconsin, patients and medical professionals will be given tools and tips to help get through these appointments with confidence and ease. Join Linda Stapleford Bluestein, M.D., and Tammy Kosbab, President and Founder of EDS Wisconsin, Inc for this empowering event! You don’t want to miss this! What do you have to lose anyways, besides the anxiety?

FREE TO ATTEND

Raffles and Door Prizes

WHO: Medical Professionals and Patients – All are welcome
WHERE: Auditorium at Aspirus Family Medicine, 425 Wind Ridge Drive in Wausau
WHEN: Saturday, March 24, 1 – 3 pm

See you there!

Please share and show friends who may be interested

*Register for the Live Webinar Here

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Many thanks to our current and past Sponsors & Donors because we couldn’t do this without their generous support: Wisconsin Integrative Pain Specialists, Aspirus Family Medicine, The University of Wisconsin School of Medicine and Public Health, The Caring Tree Children’s Counseling Center, Fishing Hot Spots, Chrysalis Massage, Priority Physical Therapy, EDS Awareness, EDS Wellness, Soleil Beads, EDS Network CARES, and Silver Ring Splints.

Introduced at the EDS Conference in Las Vegas

About this program, from https://ehlers-danlos-cme.org/ 

We have had over 800 participants since we introduced the program!

*Participants do not need to be Physicians.

The Ehlers-Danlos syndromes Physician CME Education Program is the first online Ehlers-Danlos syndromes course accredited to provide continuing education credits. This free program will cover the fundamental principles for the diagnosis, classification, and treatment of Ehlers-Danlos syndromes (EDS) and related disorders as well as associated conditions.

Many medical disciplines encounter patients with Ehlers-Danlos syndromes and related disorders and misunderstandings regarding these conditions are still prevalent despite many recent advances in the field.

Program Focus

The focus of this program is on a basic understanding of these complex, genetic disorders that are often present with a diversity of symptoms which make diagnosis challenging.  Also, the severity of EDS and related disorders varies tremendously from mild to severely disabling symptoms. Recognition is critical as the morbidity and mortality can be very significant without proper treatment. This EDS CME program includes information for the care of patients from infancy through adulthood.

Scope of this program

This course is multidisciplinary and will eventually include learning modules presented by experts in the following medical disciplines: Genetics, Radiology, Neurology, Dermatology, Cardiology, Dentistry, Gastroenterology, Neurology, Pain Management, Anesthesiology, Physical Medicine and Rehabilitation, Physical Therapy, Pediatrics, Psychology, and Orthopedics.

The EDS CME Physician Education Program is designed to provide physicians with a general understanding of Ehlers-Danlos Syndromes and related disorders as well as associated conditions, their diversity, and the latest in diagnosing and treatment options.  

Objectives for participants

  • Identify the Multisystemic signs and symptoms of connective tissue disorders
  • Increase your knowledge of Ehlers-Danlos Syndromes
  • Recognize conditions associated with EDS
  • Become familiar with the test & treatment options recommended to improve patient function & outcomes
  • Be able to direct patients to knowledgeable specialists
  • Assist patients connecting with additional resources

Learn more at https://ehlers-danlos-cme.org/

Current course presenters

Dr. Neilson – Introduction to EDS

Dr. Tinkle – Classification

 

 

Dr. Chopra – Pain Management

 Dr. Marcus – Muscle Pain Treatment

 

 

Dr. Mitakides – TMJ and CCI (Cervicocranial Instability)

 

 

 

Learn more at https://ehlers-danlos-cme.org/

EDS Wisconsin’s Mission is to provide support and resources to Wisconsin’s patients and Medical Professionals about Ehlers-Danlos Syndromes and related conditions via education and research.  Fulfilling our Mission, we have two very exciting, and important, events coming to Wisconsin very soon!  However, for these events to be a success, we need to reach more people; and that is where your help is critical. 

We Need Your Help

We are asking for help from anyone able, to please print and distribute the following flyers freely; there are still many people beyond our reach in need of this information.  Thank you, in advance, for helping us fulfill our Mission, but also for serving your local community.  For, if we can reach just one more person, together, we could save a life.

For additional volunteer opportunities, please see our Volunteer Page.

Flyers for Distribution: 

Thank you again, your help is greatly appreciated!

I had some glamour shots taken while getting my infusions done–enjoy!

I still remember my first hospital stay after my first surgery. I was 15 and afraid. I woke up from surgery, though, and everything seemed totally fine. All I wanted was Taco Bell. I would have traded anything for Taco Bell. I begged my mother to go get me Taco Bell–and she did, because I was her child, I had just been through a challenging endeavor, and it was a simple request. As far as we both knew I was fine. As soon as she left, my pain levels rose, I began violently throwing up all over my bed and myself, the swelling inside my cast on my leg became too much–and I pushed that call button next to my hospital through terror and tears.

I’ll never forget the nurse who came through the door and moved the curtain around my bed. I was embarrassed. I was “grown up” and I didn’t want to need my mom or help, but I was covered in my own vomit and I couldn’t move at all because it hurt too much. She didn’t even think a thing of it. She didn’t just do her job, though, she held my hand with her other one, which made cleaning me up much more difficult. She stayed by the side of my bed and held that hand, releasing only once so I could remove my arm from my hospital gown. She let me cry about things I was too embarrassed to say before she held my hand–I told her that I had a catheter in and I had my menstrual period and I felt dirty. I told her I was so nauseous I didn’t know what to do. After she finished cleaning me up, she stayed by my bedside until my mother got back, holding that ugly pink tote while I continued to throw up all the red Jell-O I thought I needed after surgery. I know I threw up on her that day. I still remember her pretty pink scrubs and her name being Jennifer. I remember she was pregnant and there is no way the smell of my vomit didn’t bother her. But she stayed there while I threw up and she stayed there and let me cry–and she made me feel comfortable enough to tell her how mortified I was.

I should have seen that as the start of a lifetime full of nurses being the warriors on the battlefield that is my chronic illness. I don’t know that I often have a chance to acknowledge all of the work all of the nurses have done for me in all of my years seeking treatment. It was another ten years of seeing doctors after that first surgery before I got my EDS diagnosis and there were nurses at every doctor’s office and dozens of visits trying to understand what was happening, all of whom played a role in me finally figuring out my life and my body. They were just as much a key component of my diagnosis as any doctor, because I’m not sure without them I would have been strong enough to keep seeing doctors.

Too often, when things are just too bad and I need help, it is an amazing nurse who has to take my phone call. I have tremendous doctors, but that means they see a lot of patients. My nurses have taken many phone calls from me crying that I need help with something. Those same nurses have hunted down my very busy doctors to get prescriptions filled, appointments squeezed into calendars and referrals made for me–none of which would have happened without their loud, booming voices speaking for the patients they represent.

Part of what I’ve sought to do through my work in real life and in the words on this blog is to advocate and speak for the patients who face a lifetime of incurable, chronic illness; what I’m telling you right now is that nurses do this one hundred times better than I do every single day–and often while being vomited on, yelled at, and not getting enough sleep.

This morning, I had my first round of an infusion therapy we are experimenting with for my pain. It is administered entirely by nurses. The first nurse attempted to get the IV in twice. I have wonderful veins for IV placement, but my EDS skin makes it so challenging. After she didn’t get it the second time, I was crying and she apologized so quickly, wanting to find a second nurse. She asked me if I was in pain from the needle pokes. As I choked back the tears and told her it wasn’t her and it wasn’t the needle pokes, but just that I’m so scared and I’m so tired of trying everything and nothing working so this just felt like another failed attempt already, she got another nurse to do the IV, but only so she could hold my other hand while she did it and tell me it was going to be okay. She sat there next to me and let me know that she was going to be there every second I was there making sure I was okay. She is a highly trained medical professional and she still fetched me a soda for comfort, carried my purse because it’s hard on my crutches, and asked me questions about the work I do in the city I live in. She couldn’t cure what’s wrong with me, but she did distract me for moment. When she held my hand as the other nursed inserted the IV into my other arm, I flashed back to being 15 and covered in my own vomit as a nurse took twice as long cleaning me up with one arm so she could make sure I felt safe and secure while she did it.

The nurse today kept her word. Katie checked on me several times throughout the process. She brought me extra pillows and dimmed the lights when it made me tired. She took notes on my side effects and fetched the emergency nausea prescription I have to carry in my purse when the side effects got to be too much. She made sure to offer to slow down my drip when I was uncomfortable.

Katie was a wonderful nurse. I hope she gets the recognition she deserves–but what strikes me is that she isn’t even all that unique. I have encountered dozens, maybe hundreds, of nurses with this level of dedication to their patients. If doctors are the generals on our battlefields, they are our foot soldiers–and I will salute them every single time.

What do you want me to write about next? Thoughts?

I was 26 the first time someone explained to me what FOMO was. I assumed it was a curse word. It turns out, though, it was the “fear of missing out,” this concept that you always worry that any time you aren’t “doing something,” you are missing out on “doing THE thing.” For a person with chronic illness, and especially a young person with chronic illness, FOMO almost seems like an acronym that should make our list of diagnoses…

  • Ehlers-Danlos Syndrome
  • Chronic Pain Syndrome
  • Myofascial Pain Syndrome
  • Fibromyalgia
  • Mast Cell Activation Disorder
  • Fear of Missing Out

I have always been the person who wanted to do everything. I saw my life as an opportunity to achieve everything. I made a to-do list of accomplishments and started checking them off. When I was 25, my health started declining. I got my EDS diagnosis and things started making sense. I thought I would suddenly be better. These last two years, though, my body has paid the price for years of not understanding what was “wrong.” I’ve paid the ultimate price for years of running on knees and ankles that dislocated. I’ve paid for the pain my gym teachers told me was “normal” and to “quit whining.”

Now, I’m 27 and my body is in pain a lot of the time. I see doctors frequently looking for a solution. BUT, I haven’t learned that sometimes it’s necessary to rest. I’m not always good at saying no. I’m not always good at staying home when I want to be out doing something else. If I had a dollar for every time I pushed my body harder than made sense, I’d probably never have to worry about bills for the rest of my days.

Here are the ways I’ve tried to cope with those days when FOMO isn’t just a fear, but a reality:

  • I made friends who understood. I used the internet and found support groups. I reached out through EDS spaces and realized I’m not the only young person feeling this way. I attended the EDS conference in September. There, I made a friend who lives in New York. BUT, she still sends me a text after every time she has  a doctor’s appointment. I still message her to check in. When I’m crying on the couch because I want to be out doing something with friends, I message her and realize she understands completely and without judgments. I’m so thankful for the friends in my life who don’t deal with chronic illness, but these connections who get it, they are absolutely CRITICAL on these days.
  • 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.
  • Find something fun and safe to do at home. We enjoy board games and video games as a family as well as play time with our puppy. Individually, I love coloring and painting artwork on my fingernails. Just because you’re at home doesn’t mean you can’t have fun.

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  • Find ways to enjoy the safe time. I remember looking sadly at a trampoline park with friends. I desperately wanted to jump on those springs more than I wanted anything in the world. I realized quickly, though, that it would take two seconds for me to get hurt there with my friends. Instead, my friends and I find things to do that are completely safe for me. When they want to do things I can’t do, I cope with that reality by finding things I enjoy in that off-time. My fiance and I spend time together and then I can meet up with them for a meal later. You don’t have to miss everything just because you have to miss some things.
  • Don’t push yourself for the sake of others. This is just not worth it. If you want to talk about this, I’ve got about 457 stories to tell you. But, it’s pretty self-explanatory. Take care of yourself. It’s worth it. I promise.
  • Find a good mental health specialist. I can’t tell you enough the value of therapy. It doesn’t make you crazy. Any person who pretends they could deal with endless chronic pain and a condition with no cure like EDS without feeling like they need someone to talk, frankly, is full of it (and you know what it is). I have had so many wonderful therapists help me face my realities. They are absolutely invaluable when it comes to facing this reality. You don’t have to be alone in this.

The FOMO is real. When you have a condition like EDS, sometimes missing out is for your own good. How you face that reality is up to you. You just don’t have to do it alone.

Remember, we aren’t a substitute for your doctors or mental health specialists. ALWAYS talk to them if you are struggling, please.

There are fun, safe things to do at home–like nail art!

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. 

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