Postural Orthostatic Tachycardia Syndrome:
Ehlers-Danlos Syndrome (hypermobility):
Dysautonomia Centers and Other Medical/Pharmacy:
Laws and Regulations: https://www.aapd.com/movement/
Support Groups (online and in person): Facebook: POTS memes and salty dreams, Ehlers Danlos Syndrome Support, HyperPOTS, Ehlers Danlos Syndromes OFFICIAL Support Group, POTS Syndrome Dysautonomia Support & Community Group, MCAS Mast Cell Activation, Chronic Illness Memes, POTS, EDS, MCAS, and Related Conditions, POTS Support Group, Ehlers-Danols Syndrome Support & Community!, OTSD (Owner Trained Service Dogs), Customize My Mobility Aid, POTS Service Dogs!, That POTS lifestyle - these are just some of the support groups I'm in on Facebook and there are so many more with more specific life identities, I highly recommend searching for them on Facebook. Disclaimer - these are often peer run and supported and should not in any way replace actual medical advice.
U.S. Pain Foundation Support Groups: https://painconnection.org/support-groups/ - many different groups, some just for chronic pain, some for other interests or identities as well as chronic pain (ex. I saw one for readers with chronic pain and one for LGBTQ+ with chronic pain).
Therapists in Northern VA with chronic pain experience (not comprehensive):
US Pain Foundation: https://uspainfoundation.org/https://uspainfoundation.org/volunteer/
Mobility Aids:
- My favorite salts:
- Bouy - a liquid electrolyte add-in. Reason I love it? It's flavor free so I can add it to drinks I wouldn't want to flavor or just have plain water when I get tired of all the fake sweet packets. They also offer 30% off if you have a chronic illness and POTS specific rescue drops. https://justaddbuoy.com/
- The Saltery - they have a lot of fun sea salt blends with some chunky flaky salts, some ground salts, recommendations for what to use the salt with and some salts that are just for snacking! https://saltery.store/
Ehlers-Danlos Syndrome (hypermobility):
- Adhesive Trouble - No-Sting Skin-Prep - small packets (they look like those towelettes/alcohol prep pads) with a wipe you use to coat the skin. It leaves a dry tacky layer of protection that adhesives can stick to. With many types of EDS adhesives like band-aids, TENS Unit pads, and electrodes can hurt the skin - I've gotten hives, my skin has ripped/torn open, welts, you name it! These were gifted to me and when I remember to use them/have them on hand they've been a game changer.
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- EDS Genetic Testing - I looked at a few different genetic testing options, but found Invitae (now part of Labcorp) to be the most reputable, works with the most insurances, and results are reliable and can be used by any doctor who is trained to read genetics testing. https://www.invitae.com/providers/test-catalog/test-02313
- My favorite compression brands/gear:
- Grace and Able - They have a few types of compression garments, though they focus mainly on hand/wrist compression and that is what I have personally tried. I have their everyday wear compression gloves and the arthritis relief gloves (which are also for hEDS, and other conditions that benefit from compression) with the grippy dots and they are my daily lifesaver. https://www.graceandable.com
- JellieBend - Midsection compression. They focus mostly on stomach/torso compression and I live in their original JellieBend which is just stomach compression and their extended JellieBody which goes up over the ribs as well. It has helped both my POTS symptoms dramatically and my rib subluxations. I've tried their shorts which also have the midsection compression and find they are a lighter compression option that works decently and their leggings which is a heavier compression and actually have helped with my knee subluxations, but are a little too hot for me in the summer. https://jelliebend.com/
Dysautonomia Centers and Other Medical/Pharmacy:
- The Dysautonomia Project Find a Provider: https://thedysautonomiaproject.org/find-a-clinician/ - looking through the results for NOVA I have noticed that they are slightly out dated as three of the providers listed have retired. Not sure when/how quickly they update their information. Overall they have great information in general and I would recommend reading through their website.
- Dysautonomia Support Network Provider Map - https://www.dysautonomiasupport.org/healthcare-provider-map/ - this map is made from patient recommendations.
- Dysautonomia International: https://www.dysautonomiainternational.org/page.php?ID=14 - providers listed by country.
- Vanderbilt
- Mayo Clinic
- Johns Hopkins
- Kennedy Kreiger (under 23)
- Walter Reed (military only)
Laws and Regulations: https://www.aapd.com/movement/
Support Groups (online and in person): Facebook: POTS memes and salty dreams, Ehlers Danlos Syndrome Support, HyperPOTS, Ehlers Danlos Syndromes OFFICIAL Support Group, POTS Syndrome Dysautonomia Support & Community Group, MCAS Mast Cell Activation, Chronic Illness Memes, POTS, EDS, MCAS, and Related Conditions, POTS Support Group, Ehlers-Danols Syndrome Support & Community!, OTSD (Owner Trained Service Dogs), Customize My Mobility Aid, POTS Service Dogs!, That POTS lifestyle - these are just some of the support groups I'm in on Facebook and there are so many more with more specific life identities, I highly recommend searching for them on Facebook. Disclaimer - these are often peer run and supported and should not in any way replace actual medical advice.
U.S. Pain Foundation Support Groups: https://painconnection.org/support-groups/ - many different groups, some just for chronic pain, some for other interests or identities as well as chronic pain (ex. I saw one for readers with chronic pain and one for LGBTQ+ with chronic pain).
Therapists in Northern VA with chronic pain experience (not comprehensive):
US Pain Foundation: https://uspainfoundation.org/https://uspainfoundation.org/volunteer/
Mobility Aids:
- The Wheelchair Foundation - A global organization that gives manual wheelchairs to people who need, but cannot afford their own. They do require a brief note from a doctor and they only provide manual wheelchairs, but I sure wish I knew about them when I needed them. https://wheelchairfoundation.org/
- NV Rides - A local (Northern VA) volunteer-run car service for people with disabilities and seniors. I have not used them myself, but have heard positively about them and met someone who has volunteered with them before who was lovely. https://nvrides.org/
Resources
Miscellaneous Resources/Knowledge
Antibiotics - A lot of antibiotics can cause flares for chronic illnesses. Some are shown clinically and most are shown from community experience, to cause POTS flares. However, fluoroquinolone antibiotics should flat out be avoided if possible. USE UNDER EXTREME CAUTION AND KNOWLEDGEABLE MEDICAL PROFESSIONALS OR DO NOT USE. They can cause severe connective tissue damage to those without EDS and are much more dangerous for those with EDS. They can lead to permanent damage, including (but not limited to) aortic aneurysms, tendon ruptures, worsening joint instability and pain, nerve damage, delirium, gastrointestinal problems, and permanent musculoskeletal damage per the article from The EDS Clinic titled Medications to Avoid with Ehlers-Danlos Syndrome: Fluoroquinolones (The EDS Clinic, 2024).
Some fluoroquinolone antibiotics include: Ciprofloxacin (aka Cipro), Levofloxacin (aka Levaquin), Moxiflocacin (aka Avelox), Gemifloxacin (aka Factive), Ofloxacin, Norfloxacin (aka Noroxin), Delafloxacin
References: Medications to avoid with Ehlers-Danlos Syndrome: Fluoroquinolones | The EDS Clinic. (2024). Eds.clinic. https://www.eds.clinic/articles/ehlers-danlos-syndrome-fluoroquinolones
Some fluoroquinolone antibiotics include: Ciprofloxacin (aka Cipro), Levofloxacin (aka Levaquin), Moxiflocacin (aka Avelox), Gemifloxacin (aka Factive), Ofloxacin, Norfloxacin (aka Noroxin), Delafloxacin
References: Medications to avoid with Ehlers-Danlos Syndrome: Fluoroquinolones | The EDS Clinic. (2024). Eds.clinic. https://www.eds.clinic/articles/ehlers-danlos-syndrome-fluoroquinolones