My EDS challenge Day 6- Management Strategies in Life with Ehlers Danlos
- May 6, 2021, 5:48 a.m.
I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.
Day 6 of the challenge: Management strategies
❤ Once or twice a week PT with an EDS knowledgeable PT and/ or pelvic floor PT. I do exercises for my central nervous system in the morning. I will sometimes do exercises to remind my muscles and ligaments what they SHOULD be doing in my problemed areas. During PT what has helped me most is visceral manipulation, and myofascial release.
❤ Work- I try and keep my work/ personal life balanced. I realized that I could not work 30-40 hours a week anymore (full time) in late 2018/2019. I knew I would have to give that up because of the surgery I had in March of 2020. Working remotely and part time allows me to set up my own work space that is most comfortable for me, and to save me a lot of mental stress since I cant drive regularly right now. (hoping that changes as time goes on but we will see).
❤ Using tools to distract from the pain such as my back foam roller, accupressure mat/pillows/ rollers, TENS unit, Infrared heating pad, ice packs, epsom salt baths, pelvic floor muscle massager tool.
❤ Diet- I have tried SO many diets in the past but I am currently trying to get my MCAS under control by avoiding certain histamine releasing foods. I also have to be careful about eating too much solid food at once for my gastropharesis. I try and avoid dairy and gluten as much as I can (but am not perfect)
❤ Meds and supplements- Taking extra vit D, Vit C, Magnesium, and B12 for the nervous system and inflammation. I take Valium nightly to relax my pelvic floor and sleep. I also occasionally use medical marijuana if the pain is extra bad and I can’t sleep. I have tried many other nervous system medications over the years but none of them were game changers. I sometimes use ketamine suppositories at night instead of valium when the pain is super brutal. MCAS protocol also includes zyrtec, and managing acid reflux using over the counter stuff. I also need to keep my constipation under control with daily laxatives and stool softners.
❤ Mobility aids/braces- I will sometimes take my cane places I know I might have to be standing for long periods. I will ask to use a wheelchair if I need to walk for far distances mostly in the airport. I will also wear my SI joint/hip belt, and abdominal compressions when I am going for my short walks to keep stabilized. Every so often I will need my elbow braces as those are my most hypermobile joints.
❤ Pillows and cushions- Especially important for people with tailbone/ pelvic pain and Pudendal neuralgia to have something proper to sit on. I have been sitting for longer periods of time now. Sometimes the surface being what it is, is fine for short periods. But many times I need padding between a vibrating surface and my pudendal nerve. No one cushion is a magic fix but you need to protect that area as much as you can.
❤ Mental health- When the pain is very high it is important to have mental distractions. This could be video games, reading, writing, coloring or some type of hobby. Some days I cant think straight because the neuropathic pain is too high, so these things may not be an option. Having a therapist to talk to periodically is important, bonus points if they understand chronic illness. Having a support system for other people with EDS has been a valuable tool for me as well. I am not living the life I want nor ever thought I would be, so finding our place in the world, coping with a “new normal”, and figuring out how we are going to contribute is very important for mental health.
Last updated May 06, 2021