Insights

Online resources: The internet can provide a wealth of information, but filtering the useful info can be a full-time job. Not all online health information is accurate. Be cautious when you evaluate health information on the Internet, especially if the site

• Is selling something

• Includes outdated information

• Makes excessive claims for what a product can do

• Is sponsored by an organization whose goals differ from yours.

Don’t rely exclusively on online resources when making decisions about your health. If you are considering a complementary health approach, discuss it with your health care provider.

 

Doctor Visits: There are many types of doctors that may specialize in the many different aspects of rare disease. Keep in mind, doctors in your area may or may not be knowledgable about your illness. If you keep running into doctors who don't meet your needs, think your symptoms add up to 'in-your-head' issues, give up on finding answers, or can't point you in the direction of someone else who can provide answers, you may be searching in inadequate places. It's worth the effort of traveling to specialists who are knowledgeable in your specific disease. National online support groups can point you in experienced directions. If local doctors aren't willing to continue searching for answers, keep searching elsewhere.

 

Rare Disease Enigmas: Bear in mind that many rare diseases commonly overlap with others. If treatments evade your symptoms, there may be another underlying cause. For example, Dysautonomia, Mast Cell Activation Disease and Chiari Malformation occur with EDS at a high percentage. If you have symptoms that don't fit your disease profile, you might consider looking outside that box.

Pain Rehab Clinics: The Nebraska med center in Omaha, and Rochester's Mayo Clinic have reputable pain rehab clinics that specialize in techniques to handle and quench chronic pain. The lessons in pain management are invaluable, and immersing yourself in the program has proven benefits. They have a one-size-fits all approach, so be sure to advocate for your specialized needs. If your rare disease is not well known there, do not hesitate to help them learn in order to keep from pushing your body too far. If their approach improves your symptoms, and works well for you, then you are on the right track to pain management. Regardless of how individualized they may be able to make the program, there are valuable lifestyle changes to be learned. 

In choosing a Pain Rehab Clinic, be sure to keep in mind the same basic rules in finding truly helpful online resources, such as: Is it selling something? Is it sponsored by a reputable medical agency? 

 

Diet: There are diets that may help to improve your symptoms. They include the FODMAPS diet, gluten free, lactose free,  hypoglycemic (sugar free) diet, Paleo lifestyle, Anti-Inflammatory Diet, etc. Many allergens and irritants in our foods can impact daily life, possibly without realizing these foods are the cause. Trial and error ar your best bets for finding and following the food program that works for you, as you may need to mix and match. Sensitivities, allergies, or gut permeability can be contributing factors to necessitating an elimination diet. If you are successful in following a plan, your body will thank you for your efforts. Be sure and speak with your health care provider about it, also.

In 2016, Dr. Francomano recommended the Low-Histamine Diet due to Mast Cell Activation Disorder, and I have been following, off and on, since June 2016. I also increased Zantac (ranitidine) (as of 2019, Zantac is no longer in production, so I've switched to Pepcid (famotidine)), Claritin, and added Gastro-Chrom (cromolyn sodium) as recommended. Initially, I lost a few inches of inflammation off of my waistline, which was encouraging. My skin is less irritated, and GI symptoms improved.

In 2017, after finding I cannot tolerate statins after my stroke, I began following a vegan diet to lower LDL. It has worked tremendously. In fact, there are many benefits to following a vegan or vegetarian diet. I recommend it for GI, bowel, heart, cholesterol, and vascular issues. 

 

Exercise: It is important to continue movement, regardless of your disease or lack of diagnosis. Pain and suffering can lead to a sedentary lifestyle. This can exacerbate many symptoms instead of helping them. Educate yourself of your conditions and find a PT who is able to specialize for your needs, as needed. If you lack a diagnosis, be aware of your bodies' efforts, and consider what happens when you push yourself. If within a few days you are feeling better after pushing, continue to do so. If your symptoms worsen and you never seem to recover, back off by using less weight bearing exercise and focus on the movement aspect. Again, much trial and error is expected to acheive your goals and have a positive outcome. You may have atypical reactions to certain types of PT, depending on the cause of your symptoms. Look into trigger points and myofascial pain to see if it fits your individual symptoms. Be aware that one type of treatment may work well for one ailment, but not another. (i.e: stretching works well for Chronic Myofascial Pain, but not well for Hypermobile EDS.) Be your Advocate!

I, personally have witnessed amazing results and discovery from being pushed beyond what a patient thought they could do. I have also experienced negative setbacks in pushing forward with a syndrome that I wasn't aware of. Be helpful, but kind to yourself as you seek progress in your illness. Be encouraged in moving forward, no matter how minimal the progress may seem. A short walk or a 5-minute exercise regimen may be all you can tolerate, but your body will thank you for it.

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IV Hydration: Because of the myriad of issues that patients with EDS face, their physical and neurological burden can be such that they cannot utilize hydration through the GI system any longer, and acquiring it through the venous system is a much better option. We could drink water all day long and it will 1) flush needed nutrients and 2) run right out the body without absorbing correctly. Adding salt and electrolytes to water is helpful, but still not always the best hydration technique. When you're keeping dysautonomia and MCAS at bay as much as possible, but you still have too many symptoms to be able to thrive, you may require IV therapy. Getting the body to rest and heal when it is appropriately hydrated can go a long way in keeping many of the symptoms we live with on a daily basis in a better balance.

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Manual Lymphatic Drainage: While the lymphatic system had only really been thoroughly studied for the last twenty, years, there are several doctors and some desperate patients who are heading a movement to unlock the mysteries of it. They've found that some illnesses that are greatly impacted by the newest research include fibromyalgia, lipedema, lymphedema, functional and specific neurological disorders like Alzheimer's and Parkinson's disease, Multiple Sclerosis, venous system issues, inflammatory conditions such as GI issues, dysautonomia, mast cell disorders & allergies, metabolic syndrome that doesn’t respond to normal treatments, cancer, of course EDS and the newest addition, long covid, though this is not an exhaustive list and they are finding more conditions that can be helped by this all the time. The symptoms of these illnesses may seem innocuous on their own but can be overwhelming when they are often overlapping. They include fatigue, brain fog, inflammation and swelling, heart rate unpredictability, a long list of GI issues, and chronic pain in a few different forms like headaches, muscular, or joint pain. Science is continually finding correlations with many of these illnesses and patients with these conditions are often searching for help in non-standard ways just like myself. Many of the treatments that are currently include some kind of surgery, such as liposuction and lymph node transfer. Patients often require a multidisciplinary approach that includes some form of Manual Lymph Drainage, as well. Medications are being studied and compression garments are often recommended. Tibetan singing bowls and tuning forks are being used as tools to find the proper vibration for working, or non-working, lymphatics in the body. Some doctors are creating techniques for home use, and they are helping patients who are stuck in their search for health and healing. These treatment options are not currently studied well enough to be mainstream, however, finding out how involved the lymphatic system is in the body's processes and treatments that can help it is a promising outcome. I'm excited to see what they find next.