First Tuesday of every month at my job they have fresh bagels and donuts in every break room. They also have bagel slicers to avoid all the issues that come from letting your employees cut their own bagels. If bagels are a regular thing for you and if your preferred brand aren't available pre-sliced then I'd definitely recommend getting one. Even when my hands aren't on strike I can't cut as nicely as those things do and end up with one half turning into a thin wedge.
And just so everyone knows, I have never paid that much for a pair of shoes ever in my life. If I found something cheaper that looked the same I would have definitely gotten those instead.
So far I do not regret this purchase though.
I don't know if a lightweight vibrator wand would be a good solution for you, but I use this one and it doesn't put strain on my wrists, which are sensitive to weight strain (even from my Nintendo Lite switch). Amazon link below for the one I have.
Other than that for wands, pillow propping might be a great solution for you. Wedge up a bunch of pillows (maybe a body pillow will be helpful to get varying shapes that feel comfortable) in between your legs and in a way where you don't have to brace them at all with your legs (and then affecting your hips), perhaps against the bed rest or wall, then brace your vibrator there.
I also use insertable vibrators with underwear to keep them in, but that's up to you if you're comfortable with that.
In any case, hope you find a good solution for you! I definitely commiserate and I've def injured my wrists/ hands after being too into it, lol. Good on you for seeking solutions!
Amazon link: https://www.amazon.com/Luna-Rechargeable-Personal-Wand-Massager/dp/B088JHY8HD/ref=sr\_1\_1?dchild=1&keywords=Click+to+open+expanded+view+Luna+Rechargeable+Personal+Wand+Massager+-+20+Vibration+Patterns+%26+8+Speed+-+Travel+Bag+Included+-+Perfe...
I'm sorry. I really am. I'm always here for ya guys I promise.
Sit down and really look at your budget. Look at how much you make a month and what your bills are. Then look at what you are spending your money on. Mint.com is going to be your best friend. It'll help you track where you spend the most money and alert you when you go over budget. Then look to see how much you can afford a month to go towards medical expenses. Schedule appts as you can afford them. Your health is the most important and a good team of doctors will get you to a place where you can be a functional member of society.
Your other option is to start the process for filing for disability. If that's what you want and believe is the best option then start now. It's a hard and long process and you'll need an attorney.
Either way you'll get to a point where you're health is either under control and you can support yourself or you can support yourself off of disability. If anything find someone you can talk to occasionally (yes it's costly - but hey you'll meet your deductible after probably 2 visits). This disease is something that you really can't understand unless you are living it and unfortunately many Zebras have unsupportive parents (it being an invisible illness and all). Do what you need to be happy and healthy, even if it feels selfish.
Yikes!!! I get horrible calf cramps and have since i was a kid and they always suck. One thing I’ve started doing recently is cbd lotion followed by using a theragun to loosen the muscle (I have this knockoff and it works great)
Personally I recommend this one, which is lightweight, rechargeable (so no worries about batteries), and very budget friendly if it's something you want to try: https://www.amazon.com/Luna-Rechargeable-Personal-Wand-Massager/dp/B088JHY8HD/ref=sr\_1\_1?dchild=1&keywords=Click+to+open+expanded+view+Luna+Rechargeable+Personal+Wand+Massager+-+20+Vibration+Patterns+%26+8+Speed+-+Travel+Bag+Included+-+Perfe...
We actually bought ours used but they have the same model on amazon.
It is also available at Walmart.
My HR gal told me about askjan.org. It's an amazing resource where you can look up your medical condition and it will suggest accommodations. I was surprised to see the trifecta of EDS and comorbid conditions.
Cooling sports towels are a lifesaver for me. The also make cooling vests to wear. I keep a jug/thermos full of iced water and keep my sports towels in there. I'll wring the out and keep one on my neck and one over my head.
They stay cold for a long time and they don't drip. When they start to feel warm I dunk them back in my little thermos jug thing and repeat.
Amazon link: https://www.amazon.com/dp/B06W9NBRYB/ref=cm_sw_r_cp_apa_i_pLjaDbEXV0TQ0
Have you tried a rolling cart or shopping bag? I know ones like these are quite popular.
If you're looking for good electrolyte solution, I highly recommend TriOral. My doctor specializes in EDS and POTS and says it's the best, plus it's supported by the WHO! It's very plain, slightly salty and slightly sweet.
I have a ton of muscle spasms - it's honestly what causes me the most issue of all my symptoms.
Honestly - the two things that helped me most were PT (Muldowney Protocol) and CHOWING on Magnesium (which helps with muscle relaxation - and pooping!).
I took Gabapentin, Diclofenac, and occasional Tramadol - they all help, but once I layered this stuff on top of it - I had a lot of success. I took 4 a day. For the record - it is elemental magnesium (a little different than what you typically get in a grocery store, but not sure how, exactly) - it was recommended by my doctor who is a huge EDS advocate/ally.
I also struggled to pee - so in addition to all of this, I do a lot of kegels on top of ab work outs. Check out this app - it has really helped!
Can't say if it's just EDS you are dealing with - but I can most certainly relate to a lot of what you experienced.
Let me know if you have any questions - I usually type out a much longer response, but short on time today!
Edit: I noticed someone else mentioned muscle relaxers here - I just had to chime in and say these were not good and made my spasms worse. I relaxed INTO my injuries and it only causes my S-Curve scoliosis to get worse. I had to maintain some of the spasms and work to strengthen my muscles before I could take the muscle relaxers without further injuring myself.
I love Merrells for hiking boots, I've worn through a pair of midheight Moab's (took 2 years) and I'm almost worn through a pair of their hiking shoes, and I have a pair of midheight waterproof Moab 2s for those days when I need my ankles to behave. They give good support, when they say they're waterproof they definitely are, and the price isn't too bad ($135) for something that will last a while; but everyone's feet are shaped a bit different.
If you can make it happen the best thing is to go to a store and try on every hiking boot they have in your size. I love REI for this as they give really good service, know what they're talking about, and have a generous return policy (1 year, even if it's used). I recognize they're not everywhere though.
As for walking sticks, I really like trekking poles! I bought these ones on Amazon a few months ago and I've been using them as mobility aids even when I'm not in the wilderness. They also fold down quite small so I can throw them in a bag when I'm not sure if I'll need them later. I like the option of one on either side, especially while hiking so I can always have something supporting me. The one negative is if my hips don't behave a few days in a row my wrists will start getting really tired from holding weight they don't normally, but the only real solution to that I've seen is Smart Crutches or similar and those are out of my budget currently. They were $30 for a pair. Here's the link: https://www.amazon.com/dp/B08FQYY1H6/ref=cm_sw_r_cp_apa_glt_fabc_HT1PHN7D7T2G7DM7E2T1?_encoding=UTF8&psc=1
I'd call it not super high-tech...kinda shitty but simple / easy, at leastt let me see if i can find it post-COVID-thermometer buying boom(when I wanted to get one for another EDSer)
here's the one -
i paid ~8 less for it back in my early adoption days. it's reasonably accurate.
I totally went to a physical therapist hand specialist for this, and it helped a ton, that would be my best recommendation, but some of the things I did in that pt are squeezing a block of foam between my fingers, sideways and forward, and using... Lemme find some links...
And squeezing a squishy ball shaped thing, but not one of the hard exercise ones, they're too strong, it is more of a kids toy?
The two kids books I’ve run into are My bendy body and Special like me.. EDS but I have no idea if they are at all what you’re looking for. Maybe there are reviews or excerpts that would help determine if they fit your needs.
I agree, you don't need to be nearly so concerned. In fact, I find that EDS may actually be improving my sex life. My bits are rather more stretchy, so if I go slow, I can take a lot more in when I'm into it, and have the right lube. Which is handy, because my husband is very well endowed. Even so, I don't tear. I accidentally took my own virginity at 13 by seeing if I could get a few sharpies in there to see how far I'd stretch. Regardless of that, my first time wasn't great, but I think the first several times being uncomfortable is normal for everyone. Now, with that said, if you're really anxious, you'll be tighter, drier, and have a worse time. A tampon, made of cloth, is not a good indicator, I can barely use them myself. Use a small dildo, and enjoy yourself, by yourself, frequently. Learn what you like, if you don't already know, and use toys (ideally not sharpies ;P ) to expand your horizons. Then, with a partner, know that there's no reason to rush, and share your concerns and talk honestly about it all. Find ways to have a great time with your partner without actually engaging in penetrative intercourse. Practice everything else. Hands, mouths, you get the idea. That way you and your partner learn to trust, learn to have fun, and learn to relax. Then, when you're really eager, do a ton of foreplay, lube up, and go slow, and you'll do fine. And if it goes badly, no worries, that happens to a lot of first timers, try again later, and it will go better. Try not to let fear control you. And now, a link for lube that really lasts, recommend by a woman who is a literal desert down there, and you should be able to get this kind at Walmart or most drug stores, if you don't want to use Amazon.
Special Biofilm Inc Astroglide Gel 4 Ounce (Pack of 5) https://www.amazon.com/dp/B003LZSH6K/ref=cm_sw_r_cp_apa_i_UH-jDb6M5KGPS
I was also worried about this when I started dating again after my hEDS diagnosis. I couldn’t imagine that there was a man out there who wouldn’t be turned off by my disability. I ended up with someone who loves caring for me and even cooks all my meals according to my ridiculous food restrictions.
Here’s the thing: given your recent partner history, it sounds like you are likely to end up with another abusive partner unless you can do a lot of work on your beliefs and expectations. Can you research free or low cost therapy options? Often these look like online groups or books from the library or free in-person group therapy. Al-Anon might be a match for you. I find just reading r/relationships a master class in recognizing abusive patterns. The librarian at your local public library can often help with this and a lot of other things, such as figuring out a physically less demanding job.
The other piece I would work on immediately is treating your POTS so you can drive again. The cheapest way to treat it is drink homemade electrolyte solution with salt, potassium salt, baking soda, and sugar (the sugar is optional but makes it taste better and absorb quicker). I use this recipe, minus the sugar since I don’t like the blood sugar drop I get when I drink sweet stuff:
Drink this instead of water as often as you can and see what happens after a few weeks. If what you have instead is a CSF leak, this won’t work, but it won’t hurt.
Please feel free to PM me for more free resources.
I was on a small dosage of amitriptyline in high school for dysmenorrhea. Honestly it worked pretty well for me, especially since NSAIDs aren't a good long-term option given the amount of pain I was in at the time. (Plus large dosages of naproxen landed me in the ER...) For the record, a small dosage of antidepressant for pain isn't an uncommon treatment. Your doctor probably didn't explain the logic since honestly it goes into "well... we know it works" territory. Here's an article from Mayo Clinic covering the basics of how it works/what we think causes it to work.
Edited to add: forgot about side effects! I was on an ultra-low dosage (10 mg I think?) so I didn't have a lot of side effects. I did have weight gain at the time, but I was ultra stressed (senior year of high school) and was underweight for a bit so honestly... it could've been the stress, it could've been the meds, who knows?
Is side sleeping totally out of the question? I have slept on my stomach and side with this pillow, but on my stomach my head is turned. It is memory foam but I find it comfortable. I don't find it any warmer than a down pillow. But I like a cool pillowcase so I use a cooling pillowcase, that I also got on Amazon.
I'm still new to it myself, but this is the book that everyone seems to swear by. I just got my copy today.
I personally have to use rigid knee braces, compression braces don't stay where they need to be on me.
I use these
I use something like this to very gently exfoliate my scalp. It absolutely has to have soft silicone or rubber points though, I accidentally bought a hard plastic one and my skin was angry for a week! You have to be careful to not damage your hair, I do tiny little circles so that I don't rip my hair out at the root
I haven’t had consistent acne since I stopped using physical exfoliators, such as apricot scrub. Not saying that’s a cause, but physical scrubs can irritate acne prone skin.
I recently started looking into skincare to see what I can be doing for my skin. I have been using Cera Ve’s Salicylic Acid (SA) cleanser for a while, and that actually stopped my skin from having dry flakes because it chemically exfoliates your skin a little bit every day.
Something that surprisingly got rid of any sebum I had on the surface of my skin seems to be Neutrogena’s Makeup Remover Melting Balm. I use this before my regular cleanser at night. You have to wash off the Neutrogena or else it’ll leave too much oil on your skin.
Amazon link: Neutrogena Makeup Remover Melting Balm to Oil with Vitamin E -Gentle and Nourishing Makeup Removing Balm for Eye Lip or Face Makeup Travel (Friendly for On the Go), blue, 2 Count https://www.amazon.com/dp/B08221J29Y/
I went down a YouTube skincare rabbit hole recently, and I came up with a simple routine that has added hydration to my skin and honestly has it smoother than it has ever been. If you have questions, I can share products or link videos. I try to use the simplest products possible, but I know not every product I use will work for everyone. I mainly have watched Skincare by Hyram on YouTube and he goes into details about different skin types and what kinds of products to use. He tends to like gentle skincare without fragrance, which can be irritating to people with MCAS and other allergic-type issues or sensitivity.
If I were you, I would try to find a gentle chemical exfoliator, which sounds scary but it gently gets rid of dead skin cells. There are different types of chemicals that can be used, and some are very gentle.
I used to use a magic wand but it caused numbness and pain in my hand. I am a clit stim person and I found this toy that works incredible. I can use it on the lowest setting and it’s still amazing. I can also use it during intercourse. I highly recommend.
High-Frequency G-spot Clitoris Vibrator - Adorime Powerful Clitoral Vaginal Nipple Stimulator for Quick Orgasm, Splashproof Rechargeable Silicone Mass https://www.amazon.com/dp/B07Z4YTWTQ/ref=cm_sw_r_cp_apip_JJqyphMa7X17K
smol hugs hmm I'm not sure how to minimize bruising, just ice and rest and elevate and maybe don't use the scooter for too long at a time. If possible maybe get different crutches? I think any mobility aid will have downsides, so that is really difficult.
Possibly these would be easier or something similar? I find them harder on my forearms and shoulders, so not ideal but yeah. Sending love and calm vibes!
I got this pillow last month: http://www.amazon.com/dp/B08GHGTGQ2/ref=cm_sw_r_cp_api_glt_fabc_HNKE31E4HTYYNKQ8R72T?_encoding=UTF8&psc=1
So far I have seen a really impressive amount of improvement in my neck pain and morning migraines.
I sleep with the high side towards my neck, personally. The other side doesn’t seem high enough to support my neck, but I’m also 5’11” so that may be a factor.
Spring handle scissors like these are the best! They have saved my hands from so much strain. They open for you, you just squeeze.
I have very similar issues (they believe it’s a disc issue at C6-C7 with some nerve pinching also at C5...getting imaging soon). I would lay in bed at night after taking a muscle relaxer and feel my spasming neck muscles jerk my head from side to side uncontrollably until the medicine would finally kick in. But then as soon as I’d wake up, they’d be right back at it.
My dr actually recommended this neck brace. I was super skeptical at first, but she sent me an Amazon link and told me to try it for a day or two and to try sleeping with it. It has been a GODSEND. I’m getting some neck pain relief for the first time after a decade of it, it helps me have better posture when on my computer or looking at my phone, and it IS comfortable enough to sleep in (either with no pillows or on my back on a normal relatively flat pillow with the pillow under my shoulders and head, not just my head). Also works for sleeping on your side, but I’m more of a back sleeper.
I recommend the “Comfort” version of the brace in medium. I didn’t think it would be stiff enough or big enough (based on my measurements) to make a difference, but it really has. It’s especially comfortable to put it on and lean your head back while sitting. The brace cradles your head and there’s zero pressure on your neck muscles!
The few times I’ve felt pain and thought “this thing is annoying and I don’t know if it’s working,” I’d take it off and WOOSH the pain would come back so intensely. So that tells me it’s working!
Same! Same! Same! I’m literally digging myself out of decades of compensating posture. I think I had torticollis as an infant that went untreated so, knowing nothing different, I twisted myself from the inside out to walk, run, play, whatever. I’ve been in pain my whole life and couldn’t explain why I never wanted to play outside, just lay down and read. I’m currently in a place with no tub and a pretty narrow shower; I highly recommend this doodad I got on amazon. The pumice stone falls off but no big deal
fresh feet foot scrubber doodad.
one thing another commenter has already mentioned is tai-chi, which I agree with and all I wanna add is my geneticist recommended that as well so it's pretty good advice in my book lol.
have you tried recumbent biking? you said you have feet issues, but I feel like a pedal bike shouldn't impact that too badly. you can get one pretty cheap on amazon (example linked below), and it's an awesome way to get exercise from inside your home and without injuring yourself. swimming/water PT is also an amazing option, but as you said all the pools are closed right now so that's not really available right now.
I definitely don't recommend pushups, running, really any sort of physically demanding exercise involving pushing and pulling or putting all your weight on one limb like that. it's just asking for trouble.
bike - https://www.amazon.com/GOREDI-Pedal-Exerciser-Stationary-Exercise/dp/B08CY37RPY/ref=sr_1_1?dchild=1&keywords=pedal+bike&qid=1610485959&sr=8-1
I bought a small storage ottoman off Amazon . It’s a small pink cube that collapses up small if I don’t want to use it, but I store a blanket in it for when I’m cold lol
I get this too but I didn’t realize this was an EDS thing. Twice week I take a long hot shower and then rub myself down with an Italy cloth and it removes layers and layers of dead skin. Seriously its like a snake shedding its skin- so gross by so satisfying. Then I coat myself in coconut oil. When I’m consistent with it, the dead skin problem stays under control. I found out about Italy cloth at a Korean spa- you can buy them on amazon for cheap and they exfoliate better than anything else I’ve ever tried.
Korean Exfoliating Bath Washcloth [4 pcs] (Green) by TeChef Home https://www.amazon.com/dp/B00LGLOKLM/ref=cm_sw_r_cp_api_IAyXAbPZC46JV
I got it on Amazon. I think the brand is elite99. I didn't know if it would work at all, so I just picked the cheapest one I could find ($2 with free shipping). Here's a link to the one I got.
I've also gotten compliments on my manicure just out of the blue. But people are also impressed when I make it change colors, lol. I'm really glad I tried it because I got a lot of good info. I'd recommend it to anybody who thinks they may be dealing with raynaud's.
Ok first there is a great book available as a textbook for PT specific to Eds from a PT with Eds that you can purchase on amazon. https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
I am currently a part of two research studies on EDS. One in Boston run by Dr Matt Holick whom I urge everyone with EDS to contact and join even if only remotely to contribute to the genetic research portion to identify all the markers for the hEDS folks and aid crispr. The other portion is aiding in finding better palliative treatments so our suffering is less. The other study is a PT specific study run by Plymouth state college by an amazing PT who has his whole heart into finding ways to help us help ourselves.
Don’t take my word for it for sure. Don’t take anybody’s word for that matter and dig as deep into it as you can and try to really understand what is going on and what you can do to help make its impact not so heavy.
If you just gave up and gave in and said to yourself this is the card I was dealt and just take it, what do you honestly think will happen to your body? Muscles will degrade and you will legitimately hang off of your extra loose ligaments. Do you know how I know this 💯 because this is me right now. I finally have gotten to the point where my body cannot take anymore. I have disks in my back degenerating and I slipped a disk mushing dye into my hair. I’m pissed and finally got to the point of I’m going to be wheelchair bound again but this time in a power chair because my arms are garbage point in life. I can come back from this I’m sure at least enough to stay out of the chair for longer. There was a girl with EDS on American ninja people we can heal but not by freaking sitting there and taking it.
Seriously though if you don’t want to deteriorate and be taken by this disease then fight man or don’t be surprised when it’s you stuck in a chair wondering how in the fuck you got there.
This made a huge difference for me too. After taking a couple of college chemistry courses and learning what SLS and other chemical detergents do to your mucous membranes, I cut it out of my oral care routine for good (and hair care, face wash, body washes, etc.). This was way before I had an EDS diagnosis. It made such an immediate difference.
A few years ago, I started using this toothbrush too: Nimbus Microfine Toothbrush. I usually dislike using a soft toothbrush, opting for medium in the past. These are actually extra soft, so I thought no way will this work out for me. But I don't think I'll ever use anything else now.
I chose to go with the compact size because I have a little mouth, but there are other sizes available. I suggest just reading the Amazon reviews if you're skeptical.
Absolutely! I bought mine at an Ulta Store. I had not seen the new style of air dryer in person or known anyone personally that had used one yet, Otherwise I would have ordered mine from Amazon!
There was the other brand I wanted to look at too by BabyBliss. The main difference in the two (other than $10-15), was the BabyBliss version had a self-turning button, clockwise & counterclockwise. I was thinking anything more to help, right?!
The reviews were mixed, with the largest complaint being the brush stopped turning. Second complaint was that strands of hair would get twisted into it causing them to be pulled from your head.
All in all, I’m beyond thrilled that I was only able to purchase the Revlon brand at the store!
Best of luck, hope it helps you!
Concentrace drops do the job for me, and can be added to any liquid (or food I guess)
I also use the berry electrolyte water enhancers from Mio and Big Evil (Walmart)
This bottle will last about six months, for me at least
I found that when I feel a bit off it's usually because I'm low on electrolytes. After I take some I feel a lot better for a while. I used Nuun tablets at first but switched to Ultima powder because it's cheaper per dose and not as fizzy. I've found that 1.5 scoops of Ultima is the perfect amount for those big metal tumblers lots of people are using nowadays. Some flavors (like orange and pink lemonade) are a little bit clumpy when I mix them up but since I have a blender it's not a huge deal.
Dude with scoliosis here. I use this OTC brace to help counteract the musculoskeletal effects of my out-of-whack t-spine.
I don't wear them for sleeping but for general use when wrists are hurting I definitely recommend a brace that has (removable) metal bar inside. Ideally if they're made specifically for each arm, I found that to be more comfortable than universal brace. I think the one I have is similar to this but based on your description I'm not sure if that's what you're looking for. https://www.amazon.com/Carpal-Tunnel-Support-Splint-Stabilizer/dp/B07YL644MF
Hand therapist could give you more qualified advice based on what exactly is the problem
I also feel the need to note that the kind of brace I linked will definitely limit your range of movement and make a lot of activities impossible but that's why it also gives the wrist time to heal
So, I just saw a PT that specializes in EDS and she HIGHLY recommended this brace:
I tried the one she had on and when I tell you it was a night and day difference, I was walking completely differently. Like, holy cow. It's also EDS friendly, in the sense that the straps have slots to slide your hands into to pull it on, instead of having to grasp it and pull it!! A little pricey but well worth it for the support it provides.
From the Mayo Clinic:
"Meniere's disease is a disorder of the inner ear that causes episodes in which you feel as if you're spinning (vertigo), and you have fluctuating hearing loss with a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear. In most cases, Meniere's disease affects only one ear."
I hear you and I am here.
I am seven years in to my journey, and I have been where you are. I learned I had EDS through fertility testing—the fertility doctor ran radioactive dye through my system and said one of my Fallopian tubes looked as if it has been chewed. He said that kind of damage was usually only autoimmune. My mom, thankfully, happened to be at that appointment and told him that my brother developed Addison’s disease in the womb, which is very rare. The doctor looked up at me, put down his own, and said, “We need to talk.”
I know those feelings of loss of the future, therefore, very poignantly and powerfully. I remember sitting in my bedroom and staring at my children’s book collection and howling because I would never have a child. By not working, I have left behind a master’s in counseling from one of the best private universities in the US, and many years of post-graduate work, because I simply cannot trust my body from day to day. I now have EDS, fibro, MCAS, POTS, and am being tested for MS in two weeks by a neurologist. I have to use a wheelchair in public. I have been suicidal, I have been desperate to give up.
But I am so glad I am here. I am a podcaster—I often talk about being sick on my podcast, There Might Be Cupcakes, I hope listening to my voice tell you stories might be a small comfort. I am a writer—I am working on completing my first novel and my first book of poetry. I see my therapist every week, and she has saved my life. So has my psychiatrist. If I can help you find a therapist, please message me, and I will work with my therapist to do so where you are.
For right now, Headspace is free for one year for anyone who is unemployed (thank you to my therapist for the heads-up). https://www.headspace.com/unemployed Help for sleep, anxiety, depression, it can be very calming.
Ok. A more serious response…I have these. Maybe I can’t drop being drenched in sweat sometimes, but I for sure can reduce the moisture in areas that leave me feeling unfit for polite company.
They say don’t use after shaving. Don’t test that, lol. It stings.
I have seen definite progress every few months.
There is no end date to physical therapy and Ehlers. We have to do exercises forever to not degrade... I know how hard it can be.
On my last day of my wdw trip, things that helped me the most were: lots and lots and lots of water. My fiancé pushed me in a wheelchair rented from the park when i needed it, it was about $10/day i think. Also recommend getting DAS if you have anxiety / panic / sensory issues. For me needing to go slower in the queues was a struggle and people tend to ride your ass in queues and sometimes try to push around u even so having DAS was a lifesaver. Taking a break back at hotel halfway through the day was great. And at wdw most of the CMs were so helpful and kind at rides in the wheelchair boarding. It was super streamlined. I also had my cane for when i wanted to walk. Supportive shoes. Many changes of clothes for if u get sweaty. OH AND OMG THIS COOLING TOWEL I GOT. NOT THE ONES THEY SELL IN THE PARKS I WILL LINK IT. chill pal cooling towel on amazon all you need to do is wet it. You can rewet throughout the day at the water fountains in the park. Drape over your shoulders and it will regulate your body temp so much better. Seriously this was mind blowing.
I bought one of these. It was super awesome. So awesome that my wife claimed it as her own, and I bought another to replace it.
I've tried huge pillows, small pillows, soft pillows, hard pillows, foam, goose down, synthetic fill, traditionally-shaped, curved, you name it.
That one is the one I'm happiest with. If you do buy it, open it up and let it sit on a flat surface in a warmish room for a couple hours and then chuck it in the dryer for a half hour or so.
They make special handles that have hooks on them for carrying groceries, or large carabiners with foam handles.
For those of us insistent on carrying as much as physically possible in one trip lol
edit: I cannot vouch for this product, this is just a link as an example
I have a contoured memory foam pillow and I love it so much. I sleep on my side with another contoured pillow between my knees.
I’m not at home so I can’t look up exactly which pillow it is, but it’s similar to this one.
I bought one of these and it’s pretty great. Both the height and the angle are adjustable and it’s pretty easy to adjust even when my hands are being really bitchy. I adjust the height and angle multiple times a day depending on how I need to be sitting or reclining in that moment.
I've had blisters within 5 minutes of walking at times, the shoe itself and what sock I'm wearing makes a big difference but even then I'll still find some blisters if I examine my feet, but I won't have horrible painful blisters if I've got a good shoe/sock combination.
I find fluffy cozy socks in shoes give me far fewer blisters than using regular socks, but they're not exactly ideal for the summer. Also very very occasionally I'll find a perfect pair of shoes that doesn't cause me blisters, or more correctly causes very few, small, painless ones (which is why I own 3 identical pairs of the black skechers trainers that I wear for work because they seemed to have stopped making them so I scoured the internet and bought every available pair I could find in my size!!).
Prevention is definitely better than cure with blisters. I often use gel corn toe protector tubes on my toes if blisters there are a problem in that shoe and/or sticking plasters (band aids) or tape on my heels or sole of my foot if needed.
If a blister forms the blister plasters with a 'honeycomb' structure are the best thing I've ever found, they work even better than regular blister plasters. They're ridiculously expensive but I'm willing to pay for the level of pain relief they provide. In the UK they're branded as Compeed sport but I imagine other countries will have the same thing under different brand names. Here's a link so you can see what I mean about the honeycomb structure, if you zoom in on the image of the plaster at the top of the packaging it shows it quite clearly: Compeed sport blister plasters
What does biofreeze help you with? I’m always interested in new help!
I’m not sure what you mean by a reheatable item, but have you ever considered a rechargeable hand warmer? I know they make little ones you can shake to heat up in pouches, but rechargeable ones you can plug into your phone and use alone. I got one for Christmas and it’s been helpful when I’m out and need something to hold me over until I get home. I’ve stuck it in my jeans pocket or side of my shoe before for hip/ankle pains. They’re pretty cheap!
IYING Rechargeable Hand Warmers 5200mAh Portable Power Bank & LED Flashlight, USB Heater Double-Sided Fast Heating Pocket Electric Handwarmer for Winter Camping Hiking, Gift for Women Men Girls Boys https://www.amazon.com/dp/B08JHMPBHX/ref=cm_sw_r_cp_api_glt_fabc_S76T6CNA5HCP542KCAM2
Thanks! I order a pair of:
which I assume are the one's you're talking about. Was eyeing more expensive brands but you convinced me they're at least worth a try.
Really appreciate the walking stick advice too although I've got time to really worry about that I think; the boots I want to have a chance to break in the boots so it's a little more urgent.
This is the one I use and don't hurt nearly as much as using other brands. I can't tell you about ibuprofen because I'm allergic, but it's about the same as meloxicam. Taking both makes a big difference.
I use this when the pain gets worse. I've got the 1800 mg bottle
TenneCBD Formula Black | CBD Isolate | LabCanna CBD
My physical therapist recommended this book to me. It’s a comprehensive guide for ehlers danlos patients and their physical therapists. It outlines an exercise program to reduce pain. If you can find a pt who will work through it with you, it’ll provide the education they’ll need. Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_glt_fabc_WM15B8NE6EPRZM6KXSVR
This is my favorite knee brace. It stays on nice, gives great support, and doesn’t irritate my skin like some others do. Also comes in some variations of color if you like that!
I actually have one of these, that helps me get in and out of the bath:
I'm in the UK so mine is provided free and maintained by Social Services.
This sort of thing would be comfy too:
I got it done on my neck and shoulders and loved it. But the PT copay was killing me. I invested in my own at home PT materials, and it was so worth it. Obviously can’t dry needle myself, but I got the TENS, exercise rolls, and small weights.
This machine was worth every penny!!
This thing is so strong (especially for price and size). Over 6 months of use and I’ve never had to charge it. I only go up just over half way on the strength/power too. It’s a beast of a machine.
have literally nothing to gain (in fact, hoping it helps you lose...) by recommending this, but i bought this like 6 months ago, only started to try it the past few weeks, as i wake up daily w/ a distended belly a la starving African children TV charity ads.
So far, seems to be helping quite a bit. Not changing the C to a D. Don't really notice much else except that the bloating is way better.
I'm doing 1 tsp in full glass of water in AM and PM only.
They offer a full refund, if needed. So $0 risk. If you (or anyone else) try it, I'm curious your results. I'm a healthcare person so my experience is super anecdotal, but may (very eventually) recommend to patients some day if I have very long-term and consistent results.
I actually regularly pummel my own thighs because the pain is so deep in the muscle it's the only way to get to it.
Somewhere in the house I have this amazing device that looks kind of like a belt sander and it's got handles on either side, it's just a massive vibrating rectangle and it really really gets into the muscles deep; I think you would love that thing. I jokingly call mine THE VIBATRON 6000 but it's considered an orbital massager.
Note: the link is not the brand I have but it's the best link I could come up with at the moment just to give you a visual of what I'm talking about.
I bought mine on Groupon about 6 years ago for a third of the price I see them elsewhere.
Thing is a BEAST and saves me a lot of punching. Really gets into those thick muscles that won't otherwise shut up.
I am a bit late, but I wanted to second most of the suggestions that people are making and give my own experience with pc stuff.
One thing is to maybe consider getting a lighter mouse (with a shape that you like of course). I have found it less stressful/painful to have a light mouse and a hard/fast mousepad. Although there is absolutely no need to go this far, I am using an around 55g mouse with ceramic feet on a hdpe sheet mousepad and I think it lowers wrist and finger stress some.
For the keyboard, nice switches and keycaps (pbt) feel better to me. The switches I personally like are linear because you can control the pressure without having to slam past a bump (specifically I use lubed tealios 67g).
If a specific finger or joint is painful from clicking too much or something, I have found that 'finger sleeves' like these are pretty nice, cheap, and convenient to just slip on until the joint feels better.
I have bad hips and have been using this: https://www.amazon.com/dp/B07BDRFMZK/ref=cm_sw_r_cp_apa_glt_fabc_88SNAVMHT8356RVR0NSY?_encoding=UTF8&psc=1 successfully. I don't find it hard on my hips or my knees. I hope this helps!
I found it on Amazon Disjointed
Wish it wasn’t so pricey. I understand why, but I’ll have to put it on the wish list.
I just got a great one from Amazon if you like medium firm. My son has the 8 inch and I have the 10. Both are great.
Person with existing herniated cervical disc here! (On and off for 7 years)
Did they not offer you regular physical therapy (traction) and/or steroid injections? That’s typically the next step after gabapentin and NSAIDs.
I’d recommend a cervical pillow for sleeping. I can’t believe they recommended a collar for sleeping (those things give me claustrophobia bad!).
The most helpful thing I’ve used is this little guy!
It is absolutely amazing and so powerful for its size! Worth every single penny. I haven’t even charged it in countless number of uses and it’s still 3/4 charged. I only need to go just beyond half of its strength. It’s a hell of a little machine.
Edit: omg. I just realized it sounds like a described a vibrator. Both are pleasurable. 10/10 😅
Insoles are a good start, wear really supportive shoes with them all the time for now, even around the house. If the ones you bought don’t work, try others. These worked well for me: Plantar Fasciitis Feet Insoles Arch Supports Orthotics Inserts Relieve Flat Feet, High Arch, Foot Pain https://www.amazon.com/dp/B075YCZTWB/ref=cm_sw_r_cp_api_glt_fabc_BYXM4J1EC6A7G83QDB7V?_encoding=UTF8&psc=1
Also physical therapy! They taught me how to stretch the right way. One thing they had me do is put a tennis ball in a pillow case (so it doesn’t roll away) and roll it on the bottom of your foot (if it’s not too painful)
What about a cookie dough press with a decorating nozzle on it? They are designed to force fairly thick dough or icing thru the barrel. https://www.amazon.com/Ourokhome-Cookie-Press-Maker-Machine/dp/B07L281SGD/ref=zg_bs_678530011_5?_encoding=UTF8&psc=1&refRID=535HME0B685G28FF4CR4.
1 am thinking here lol. What about a tube style cake decorating tube, using the longer tip. I'm only familiar with the vintage metal ones but they apparently make plastic ones now. They have less resistance to start with than a med syringe. Here is one from Amazon
Another person responded in the comments and mentioned the muldowney protocol. Don't hate me if I typed that wrong, don't want to exit out of this comment to reread it. Lol
I was browsing books and this is the only one I found specific to physical therapy so far.
That's a really messed up situation and I'm really sorry you are going through it. Another person mentioned the only doctor who could figure out what was wrong was a sports doctor, maybe that's a route you can look into?
I truly hope you find some relief soon.
I am a serial pillow purchaser. For a long time I went through as many as a dozen pillows a year trying to find one that helped, for the same reason as you. I have cervical instability and had a surgery to fuse C4 through C6 in my neck and still have herniations and bulges above and below. Excruciating. Sleep was never restorative and I would often wake up and more pain in my neck that I went to bed with.
The pillow I’m linking below is the only one I have found that was helpful. It is memory foam with a gel cover and, because of the shape, it keeps my neck from tensing up while I sleep and gives me the right amount of support. Mind you, I have trained myself to only sleep on my back (even though that is not my preference) so that my neck stays in alignment. When I use this pillow I place my head in such a way that the “wings” that come down on either side of my head and sit on top of my traps. This helps keep my shoulders relaxed and helps with the inevitable scrunching/muscle rigidity I get while sleeping. It has been a lifesaver.
Sleep Innovation Pillow
I see that a few other people have brought up MCAS, and I definitely want to echo that. Do you know what specifically your allergist did to test for it? Not a lot of doctors are super knowledgeable about MCAS as it is considered something of an emerging illness still. A lot of doctors will just test your tryptase level and they don't realize that you can have MCAS and still have your tryptase fall in the normal range.
I have had GI issues for years, and have been diagnosed with gastroparesis, IBS, and GERD. I tried so many diets and medications, but nothing got it under control. It got to the point where I could only eat every two or three days, and even then I would usually immediately throw up. I lost 80 pounds without trying. Getting diagnosed with MCAS and doing the low histamine diet paired with the right medication combo has been such a game changer. For the record, that med combo consists of a combo of PPIs, H1 blockers, and H2 blockers, plus four vials of oral cromolyn sodium daily.
I HIGHLY recommend this book to anyone with suspected MCAS. The author is a registered dietitian who has mast cell disease. She's very knowledgeable about what foods and supplements work best for MASTers, and she breaks it down in a way that's super clear and easy to understand:
I have this one that I wear on light days. I have one similar to the second link you sent for heavier days, but the one you found looks better, so I think I'm going to buy that one! I have one that has a bunch of straps and such around the stomach but its meant as a back brace and to brace the core and the posture correction is just secondary (also it's pretty bulky and its expensive).
I can only answer the second question, but sea bands and peppermint are life-savers.
Oh hey no worries! I love this sub.
I actually like the cheap ones best because they're hollow, which means they're really lightweight. The ones I use most often are this multipack from Amazon: https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.amazon.com/Briout-Universal-Screens-Capacitive-Multicolor/dp/B07TWZ94FD&ved=2ahUKEwiclY3w54_tAhWuFFkFHbyvCa8QFjAAegQIAxAC&usg=AOvVaw1km-FX9sJZnzR2OQ-3oTSj
I wouldn't bother with anything fancy or expensive until you know a stylus works for you. Even then, I've been using these for a year and I don't feel the need to upgrade!
I did the same thing, at my PT's suggestion, and it's really helpful. I put the little pillow roll at the bottom of a flat "normal" pillow.
The one I bought is here: https://www.amazon.com/gp/product/B07L8RQTGB/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1
However, the trick with these pillows is to get the right size. The idea is to find out the size of pillow that will put your neck in a neural position.
A lot of them come in 4" diameter but I needed a smaller one (3.5"). The best way to figure out what size will align your neck is to take a bath towel and roll it up tight. Then use it like a pillow roll, and see if your neck is aligned when you lay on your side with roll + bed pillow. If the towel roll feels like it's pushing your neck upward, try unrolling it a bit. Once you have a size that feels comfy, use a ruler to measure the diameter of the towel roll. That should give you the approximate size you need.
I would not recommend sleeping in a neck brace unless you have the explicit ok from an EDS-aware doctor. We (with EDS) depend on our muscles to compensate for our loose ligaments. Wearing a brace can weaken the neck muscles, which will only make your situation worse. Even when I'm having painful neck spasms, my expert EDS PT won't let me wear a soft collar for more than an hour or two.
Another thought. Look at getting a rollator walker. They're fairly inexpensive on amazon and they're awesome. Basically it's a walker with wheels and brakes. They also have a seat and a carry basket, so it's not just a support for walking, but also a place to sit when you need it and something to hold things for you. It's limited how much it can help for the fainting, but nothing is perfect.
Edit: Drive Medical Four Wheel Rollator with Fold Up Removable Back Support, Red https://www.amazon.com/dp/B005S1CHKC/ref=cm_sw_r_other_awd_wJSaxbS2TZWQF
I'm unsure which type I have, but type 4 is one of the suspects. I don't have adequate healthcare, but I research the ever loving shit out of everything. My mom is also a nurse and I went to school with her while she became one (I was a well behaved kid who was home-schooled at the time). Anyway, I'm good at understanding medical stuff and health stuff.
So much of this is about your diet, and getting the right amounts of key nutrients and vitamins. I had horrible endometriosis like symptoms before going dairy free. My older brother was in a wheelchair before he went gluten free. He has chiari and a whole slew of other stuff, including endometriosis before having his ovaries taken out (he's transgender, if you hadn't).
I'm the youngest, so that could explain a lot of the reasons I'm the healthiest, but I also eat like some kind of freak. Gluten free, diary free, mostly vegan, no corn/canola oil, high omega 3, low omega 6, etc etc. Each of these choices are based on hundreds of hours of research. I also recommend this book (amazon link, but I'm sure you can pirate the pdf) to help understand environment. Look into epigenetics if you want to have a little fun. Make sure to drink a ton of water and many people take salt pills too :D
Just opinions. Good luck. Oh! And deff see if you have a group that meets in your area, I've found that helpful in unexpected ways.
I suggest replacing the Pedialyte with Ultima:
This stuff is great, I use it nearly every day. Whole Foods sells a smaller container if you can't/don't want to buy from Amazon.
Ultima doesn't have artificial colors and flavors like Pedialyte (those actually inhibit electrolyte absorption and aren't good for you in general).
Some shaggy soft sherpas I can tolerate but the smoother ones I can't.
I have a lot of hiss for a lot of different textures tho: notebook paper, chalkboard, fabric tags, silk, corduroy, make up, pleather (real leather is fine, somehow I can tell), and, well, clothing in general.
Yes. Clothing. Clothing leaves deep depressions in my skin. Sometimes I look like an actual zebra after a day out because you can see where all the wrinkles and seams were or when I get up in the morning. I tend to tolerate soft cotton and loose fitting clothes better.
Sometimes I wish I was more of a normal zebra and just dislocate a lot.
Scratchy wool in sweaters was my go-to hatred in childhood, and the scratchy fuzzy would always ONLY be on the inside where my skin was of course, and my mom LOVED putting vicks vapor rub on my chest THEN one of those abominations and oh my god talk about the cure being worse than the disease.
Hah! No worries. Btw, thought I would mention using a pregnancy pillow like this from amazon . I have one that I use for my knees, hips, and shoulders... my husband who does not have EDS now has one that he uses because it helps with his back pain by keeping him asleep on his back!!
Overall a great purchase!
Omg the fragile skin is so horrible... I had to stop cutting my nails with a standard clipper trimmer and had to start filing (very carefully at first) with glass files so there's no scraggly or sharp ends as my skin slices easily. I used to draw blood regularly trying to pick up small fiddly things, even pills! I still bump into furniture and find blood on my legs or arms though.
I also seem to have fewer nail breaks since keeping with the filing. A gentle pressure and a good glass file where the filing grit is etched into the glass is great! I also have an older metal file that I find is best for finishing, but I can't find more of that wave surface type. It made the free edge shiny smooth and impossible to catch on things.
Once I get to my PC, I'll edit this once I get links for the glass files I use and see if I can find info on the metal file.
Link on Amazon to the Glass File set
The metal nail file I use for finishing that I wish I could find extras of today
Raising my hand for this problem, as well. Here's what solved my shoulder issues during side-sleeping - buckwheat pillows.
This is what I picked up off Amazon. You can get smaller sizes that are cheaper but I found this to be just right.
Now, these things are heavy. Mine is about 10 or 12 pounds, but it's filled with these small buckwheat shells that help to form a firm groove and offers support throughout the night. There is a slight adjustment period of figuring out how much the pillow should be filled, and how to make it support the right way, but once you find the spot, it's amazing. I no longer have my shoulder slipping or bunching up under my neck. The pillow fills that gap and keeps things in place.
These are not soft pillows, you won't be sleeping on a cloud, but it will be comfortable after a few nights. And because of the filler material, your neck and head and shoulder will stay there all night. The only reason I ever change positions now has little to do with my shoulder and more with lower back pain because of my mattress.
Would ergonomic pens help? I grew up left handed and my teachers made me use those pens. It may help reduce strain on your wrists and the pens I used are refillable with blue or black ink. I can’t even hold a pen in my right hand. I think mine were stabilo ones but I’d have to go and check.
I had a look on amazon and it’s this range of pens. They have easy refill packs, come in different colours and have left and right handed versions.
This was the first thing to come to my mind. I know it can be found cheaper but I figure Amazon is a good a good site to post an example from:
Dromedaris brand Kara boots with really chunky heels. It's good to have about an inch or inch and a half of heel elevation, and broad chunky heels improve stability, plus a medium to large toe box is better for me. Here's an Amazon link of what I wear. They are by far the best I've ever found, but really I'd recommend anything that is a similar shape and that you find comfortable. Just go for broad, stable, and a bit of elevation. It'll save you from flat feet and strained ankles and knees. Good luck!
Dromedaris Women's Kara Boot, Black Print Top, EU 39M https://smile.amazon.com/dp/B0145FWYXG/ref=cm_sw_r_cp_apa_i_lz6UCbBN3EWM8
Absolutely! I’ll see if I can put the amazon links on here because I don’t think I can just put pics up here.
The main shoulder brace she uses right now, after much trial and error, is this one. It really limits her range of motion and keeps her from doing too much to further damage the shoulder. It is a bit bulky and doesn’t fit great under shirts, but she’s kind of gotten used to it, to the point where she can even sleep with it at night, which she mostly does. (We realized she does a bit of joint damage at night when she does half asleep stretches and position changes to get comfortable that she never would let herself do while awake.)
We also have tried this . While it’s not nearly strong enough to support the bad shoulder, she uses it sometimes underneath the shoulder brace to support the “good” shoulder, which hurts sometimes. She says she wishes she’d had it when she was younger, as a lot of the joint damage she did while she was younger was because she did extreme stretches that she could easily do, but didn’t know she wasn’t supposed to. She says the feeling of wearing this thing offers a sort of compression on the joint that makes her feel way less like it needs to be stretched. So if anyone reading this doesn’t have shoulder damage yet and is looking for a way to avoid it in the future, this might be a good option to limit your range of motion without going full-on in the bracing department.
This is the one she has:
The other part is how much are you looking to spend? Because there are some higher quality office chairs that may work better or chairs designed for sitting cross legged?
I don’t like wearing them at night because it makes me feel restricted and claustrophobic, but I have this one for nights when my wrist really bothers me. It’s super cushiony, no bar but tons of support. It’s completely impractical to wear during the day because there is that much cushion, it’s super comfy.
This one has really good support, doesn’t poke, and is great if you have scrawny wrists, but it’s also adjustable enough for wide wrists. It’s the perfect shape for me, I have trouble finding a good fit with most. I recommend it for during the day but I don’t think I’d be able to sleep with any of the ones with a bar, and the others don’t do much most of the time.
For bad pain days and sleeping, I prefer isotoner gloves. The seams on the outside is really nice on sore hands.
For less bad days when I'm trying to type, craft, etc., I prefer these for the extra grip and looking less medical beige.
Back when my light sensitivity was significant I went to great lengths trying different glasses and modifications. The main takeaway was that to be helpful, darker lensed glasses need to be wraparound style. Otherwise there will be unfiltered light getting in the sides, and if your eyes dilate to see through the dark lens it’s even worse getting blasted when you glance to the side or the sun hits from the wrong angle. I tried a few extra dark sunglasses, but the non-wraparound ones were awful. It may be possible to add blinders to create a good seal with other types of glasses.
These are my favorite overall, they are darker than standard but not ridiculous
The other approach I tried was applying window tint film to a regular pair of wraparound sunglasses. This worked fine for making super dark lenses, but it’s really hard to avoid wrinkles. The best application was for migraine glasses that were extra dark top and bottom, but had a strip through the middle without extra tint. Or even to use opaque electrical tape and blackout some of the lens. Again, getting wraparound glasses that make a good seal and don’t leak in light is important. I made a video about the window tint modification
I've had it for about six months. It's pretty firm. You're right a lot of them can be too squishy. I also have this one in the long length: https://www.amazon.com/dp/B075M941F3/ref=cm_sw_r_cp_apa_i_.CiiFb2R60SMM
It's VERY firm, which I like. I've sort of worked in a few places on purpose, but it's very supportive.
I've had this thing saved in my wishlist for a bit. Its "hands free" and had decent reviews, but I can't personally attest to it yet.
I relate to all of this. I just got this pregnancy pillow (www.amazon.com/dp/B07MXQ6MCT/ref=cm_sw_r_cp_api_i_VUneFbA59P99D) a couple of weeks ago and it’s been great. My old body pillow had gotten really flat. I chose this one because of the cotton cover since I have texture sensitivities, especially in my feet, but there are lots of different options out there. This one feels like a soft t-shirt.
I also use a lumbar support pillow (www.amazon.com/dp/B07MZTFBYQ/ref=cm_sw_r_cp_api_i_8YneFb4375XC1) and this combination has really been working for me.
Try amazon smile to donate to a charity of your choice automatically at no cost to you!
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Hey this is random but there are "cut proof gloves" you can buy on amazon. They have woven metal into them so they are harder to cut than regular gloves I think?
I love mine. My hands get weak when I cut things and I slip and after the bad cut I had that didn't seal I got these.
edit: not metal woven, it's something else
>The combination of ultra-high molecular weight polyethylene and glass fibre keeps these gloves light and flexible, makin’ them perfect for all kinds of precision work. If you’re looking for a glove-of-all trades, you’ve found it.
>Our gloves also have an EN388 Level 5 protection rating - the highest resistance rating there is. Outside of wearing chain mail on your hands, these gloves are the simplest way to keep your fingers cut free.
I just bout a desk chair on amazon that has a foot rest that lets me kinda do the same thing, at least adjust my legs and have them supports. They are all gaming chairs and you can get them between 80 and 160 dollars.
Edit; I got this one: https://www.amazon.com/gp/product/B07FCZ696Y/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1It also reclines so it I have have a POTS/Dysautonomia attack it's handy
I change my game choice depending on how well my joints are working and if I have a migraine that day.
If I'm feeling good, I'll play more action-y games like Monster Hunter, Hyrule Warriors, Warframe, Assassin's Creed, ARK: Survival Evolved, or Final Fantasy XV.
If I'm feeling like crap, I'll instead try to be on slow or turn based games like Pokemon or old school Final Fantasy, or games without time limits like Animal Crossing where I don't need to actually hold the controller or system to play since it's an "at your pace" game.
If you like the slower games, coming up with a way to have the system supported so you don't have to grip the system could possibly be helpful.
For example: I use a stand with things like my 3DS on bad days as I poke at it with a big stylus and don't have to hold up the system. This is the exact stand I use and depending on what I'm playing or doing, I'll put my 3DS, phone, or XboxOne controller on it so I don't have to grip the item and can use the device more easily. So far, that's helped with preventing my wrists from slipping out as fast as they want to. I used to put my 3DS on the table, but I also have issues craning my neck down from Chiari Malformation so I've passed out pinching my neck looking straight down before. The stand has been a great option for me and I use it every day.
I haven't tried gloves though since my skin reacts to my own sweat and so having gloves on or using heat packs are huge no-nos with whatever is causing my rash/wounding.
I've got a buckwheat pillow that helps keep head and neck secure and in place throughout the night. It's not soft, and takes an adjustment, but being able to minimize movement in the night makes a huge difference for me.
It's also refillable so I can get it really plump so that my neck is level and the pressure is taken off my shoulders. I usually have a line of pillows running along my back, too, which helps me shift some more weight on them so it's not all on my side.
I've also tried sleeping with a pillow under my ribs before but it was actually really painful for my ribcage. Maybe it wasn't flat enough but I sleep fine without it on my Purple mattress (also recommend).
I got one of these. Between this and a flat pillow under my ribs, I can usually sleep pretty safely. My nightly bed down routine is centered around my crap shoulders :(