Hello, Zebra Dazzle!
I had no idea my Put-A-Finger-Down EDS TikTok would be relatable to so many of y'all, but I'm thrilled we're all starting to find each other on ZebraTok!
Part 6 mentions OTC product recommendations that I promised to link to so you can save the spoons on searching and start improving quality of life. I'll update this post with further recommendations as new installments go up, so everything can be in one place!
My favorite source for information on EDS in general is www.Ehlers-Danlos.com.
DISCLAIMER: I am an Amazon affiliate, usually for the art supplies I recommend in my micrography workshops, but I figured my link creator could work for this purpose too. Whether you order from Amazon or not is your choice; you're always more than welcome to Google the product keywords for other sources, look for them at your local pharmacy, or see if the manufacturer's website sells the product directly. However, if you do purchase through my affiliate links, then a small percentage goes toward subsidizing my medical copays, which I greatly appreciate! (Don't want to give money to Amazon but want to support me? Buy an art print or greeting card! I even have a Rainbow Zebra micrography print I think you'd love... 😉)
(I'm still compiling this page: thank you for your patience as I comb through all the details!)
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EDS TikTok Series(links coming as they're posted!) - #1/Part 6a (intro + rec #1) - #2/Part 6b (recs #2-3)
Full Transcript with Links:
EDS Awareness: OTC symptom management (no doctors or diagnoses required!)
This may take multiple TikToks to cover properly, and please, comment, stitch, or duet with your own recommendations too: the zebra dazzle is stronger together!
Also, although these tools can be MORE accessible than official diagnosis, two disclaimers: A. They're still not free, thanks capitalism! B. None of this is a replacement for medical advice from a doctor who knows YOUR medical history, please put on your critical thinking cap for ANY TikTok content, not just mine.
For easy access, I've also added a button to the link on my bio with the full list of recommendations I've posted so far and links. Full disclosure, I am an Amazon affiliate, usually for the art supplies I recommend in my micrography workshops, but I figured it could help here too, so buying from my links does help subsidize my copays a little!
Let's start with products for hypermobility, the core titular symptom of hEDS and other hypermobility spectrum disorders: a lot of our joint care relates to the RICE method, Rest, Ice, Compression, Elevation. Rest is its own thang and works a bit different for us, but for the others:
1. Reusable ice packs and heating pads. I'm a HUGE fan of these sheets for coolers, I can cut them down to whatever size I need or use the whole damn sheet on my entire spine or hip. Ice brings down inflammation, always start there. Injuries that need heat usually won't suffer from icing, but injuries that need ice WILL get worse if you heat them first.
2. THEN, after icing, IF the pain is muscular, go to heat: note, if your pain is more arthritic joint inflammation than muscular, you may want to consult a doctor on whether to use heat at all, and if so, when or how long. I have a collection of electric heating pads,
heated blankets that can wrap around my whole torso,
plus both reusable/boilable & emergency single-use instant heat packs, which I use most often while camping. (They also have an instant ice pack version.)
I prefer the electric options if I have access to an outlet, though. If you have any loss of nerve sensation, do NOT use the top settings on the electric ones. We can't always tell when we're starting to burn our sensitive EDS skin.
3. Bandages, wraps, joint braces, just collect them for every joint preemptively whenever you can (e.g. wrists, elbows, shoulders/more shoulders, knees, ankles, hips... the more adjustable and/or multi-purpose and/or reversible, the better.) Make sure you know your size for ones that come in different sizes, like my thumb brace (small/medium, large/x-large), or buy one to figure out your size before investing in other not-one-size-fits-all types. Variety packs of various adhesive bandages are also handy for those with fragile skin, too, and antibiotic cream to prevent infections.
Get a big red bag for all your braces/bandages and make that your EDS first aid bag. Doesn't have to be red, but it's a handy universal-ish signal if you're ever sending someone else to grab it while you're down nursing a popped joint.
4. KT tape, or Kinesthetic Tape. [Or Kinesiology tape.] YouTube has a LOT of great tutorials on how to tape various joints, most methods need more than a minute. I have both a full roll and a precut roll for when my hands can't handle scissors.
KT Tape brand's official YouTube channel has a lot of great content, mostly geared toward the sports medicine audience, but a lot of hypermobility & EDS joint care overlaps.
COMING SOON: OTC Recommendations #5+
5. Compression wear! Compression gloves, compression socks, compression shorts: whatever you can find and afford, start your collection. The socks help me the most with POTS/Dysautonomia, they prevent blood pooling and decrease my dizziness exponentially. I switch between full compression socks and toeless ones. They even make cute ones now: disability, but make it FASHION. The shorts are the trickiest for me, most squeeze my SI joint a little too much to be comfy, but they work wonders for some EDSers' hip stability and pain.
6. Some splints are also available OTC! These metal splints require a prescription from a hand therapist, but these plastic ones can just be ordered online. They also sell a sizing kit, tho my official recommendation is still to get a hand therapist to size you and let you know which joints need bracing, since some EDSers need just the top joint like me, others need both joints on each finger.
7. Mobility aids! I got my first folding cane on Amazon, along with this bad boy, Starsky the Crutch. A PT did recommend him, but the copay for hers with insurance was only $5 less than a pair of these babies, and this way I could get a color besides gray. Forearm crutches, aka eurostyle crutches, are less taxing on hypermobile wrists and shoulders than standard canes if you're using them to support any weight (canes are best for balance rather than weight-support), tho Smart Crutches are usually the gold standard… but they're expensive and more often require a professional fitting/measurement. Rolling walkers can also be a HUGE help for long days out and about, because many also come with a seat. Standing in line has never been my forte. My hips don't like it.
8. Foot bath! Epsom salt helps break down some of the callouses I tend to accumulate (and will soften ingrown toenails, which I get too often) and the heat releases tension in the foot and ankle muscles. Mine has a vibration mode too that I'm not actually a fan of but my spouse loves, so, to each their own.
9. Hands can get a similar treatment with some hot water, washcloths, and some plastic wrap or foil to trap in the steam for a bit longer. My hand therapist does parafin wax treatment but I haven't taken the plunge on my own parafin bath, they're not cheap.
10. Necks too! Strips of ice to reduce inflammation, then heat to release tension. I've wrapped a hot washcloth and trapped the steam in with plastic wrap here too, if you can handle the feeling of plastic wrapped around your throat, def not for everyone. The plastic wrap can also keep pillows etc dry while you lie on them. Does wonders for my neck pain and migraines either way.
11. Topicals like icyhot can reduce some sensation of pain but never treat the source. Use with caution. Topicals containing CBD on the other hand… if you're in a place where that's legal and accessible… now THAT has been highly effective for spot-treatment. Just be forewarned: NEVER buy CBD products from a multilevel marketing (MLM) rep, always buy from a retail or grower source. The MLM versions are often weaker, less regulated, overpriced, and their sales reps often make unethical unproven claims about their products. Save your money, go to more ethical sources.