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buy her something like this balance disc!
These are fantastic while working from home to sit on - and not too intrusive if the office opens back up!
Biologic medication sounds scary but start asap to get back to living a normal life.
During my diagnosis (combined with stay at home restrictions over the last year) I put on about 10kgs.
I started Humira 4 months ago and have lost it all because I can move again pain free.
Standing instead of sitting
This has been a game changer for me
VIVO Black Height Adjustable 36 inch Stand up
Desk Converter Quick Sit to Stand Tabletop Dual Monitor Riser (DESK-V000V) https://www.amazon.com/dp/B0784HWPN6/ref=cm_sw_r_cp_apip_pgikSGYmRIFHG
I’ve had an itchy eye ball a couple times. First time the optometrist Said I was hours of going blind. So from that point on I monitored it closely. It felt like someone sanding my eyeball. Iritis is the name of what I had. Get to a optometrists to get it tended to. Here’s a link. https://www.mayoclinic.org/diseases-conditions/iritis/symptoms-causes/syc-20354961
I would second the memory foam topper - 3” thickness is the minimum. Memory foam for between the knees too - or a “pregnancy pillow” that is shaped like a big U so you get support for your leg without having to shift a smaller pillow around. I use mine upside down as the top doesn’t work for me as a head pillow. There are many brands. Here’s a link to one.
You might also speak to your doctor about amitriptyline. It’s an anti-depressant but has been prescribed for years to people with pain-induced insomnia. It has some contraindications but worth mentioning to your doctor. It helped me enormously for years.
Hello friends! I've tried making the "bamboo" spine in a xray - not sure how it turned out - but I think it was better then the other one i tried with a man walking with a bamboo growing out of his back ! Anyone got any other ideas for things to make within the medical theme?
I bought this one. It's the only one I could find that reclined in the way you describe. Most chairs simply "lean" back when you press, but they don't stay reclined. This one adjusts and has a pull-out foot rest which is exactly what I wanted.
However, I find the back support severely lacking even though it has a "lumbar support." I ended up smashing a pillow between the backing and the lumbar support to get more support. It also is a little cheapy feeling with all the plastic, but it has held up my fat ass for a few years now. I just have to occasionally tighten the bolts on the arms to keep them from wobbling so much. I put a lot of weight on the arms to help myself into and out of the chair so I am not surprised that they are taking a beating.
Also, if you have short legs you might not be able to sit back enough to have correct posture. The seat is pretty big.
I've found that using a recumbent bike as my chair works wonders. I've been using one for 7 years now. I changed chairs for about 6 months and my pain came roaring back.
This is the one I use, it fits under my standing desk. https://www.amazon.com/dp/B06XD1GQJT/ref=cm_sw_r_cp_apa_glt_fabc_ZC2W2GRKE7XTG996W0KK?_encoding=UTF8&psc=1
I also have these attached to my desk to make up for not having arms on the bike. https://www.amazon.com/dp/B00QMMMFU8/ref=cm_sw_r_cp_apa_glt_fabc_ZN3FV1RS0AADER5FHK7G?_encoding=UTF8&psc=1
I think this anger and frustration is so normal. It's so hard to be in constant pain. I found this book to be extremely helpful with reducing my anger and really being at peace with my pain, to look at it with equanimity (non-judgement): https://www.amazon.com/Live-Well-Chronic-Pain-Illness/dp/1614292485
I bring my tablet, noise canceling headphones Amazon Link, small snack ( I like Hillshire® Snacking, or cut up apple, grapes or etc) and couple bottles of water. Recommend drinking a lot of water before the infusion makes finding the blood vessel a lot easier. Also good apps Pluto TV, Amazon movies, Youtube, download movie, and etc
On Android, Correlate is pretty much designed exactly for tracking like this. It's super simple and doesn't get more granular than the course of an entire day but can still help make some connections.
A standing desk, exercise ball to replace the chair, inflatable seat pad and balance disc have been helpful for me with back, neck, pelvic issues.
The seat pad is great for travel, in the car, and anything really. The exercise ball and balance disc are good for working on posture/core and for staying wiggly while working. (https://www.amazon.com/Therm-a-Rest-040818064344-Travel-Cushion/dp/B00HANW9FY/ref=mp_s_a_1_5?dchild=1&keywords=therm-a-rest+seat+cushion+inflatable&qid=1604792669&sr=8-5) (https://www.amazon.com/balance-disc/s?k=balance+disc)
I started out trying the Trader Joe's brand stuff - it's pretty cheap (in the store, not Amazon). I was taking four of these every morning: https://www.amazon.com/Trader-Omega-3-Fatty-1100mg-90softgels/dp/B004TUYRTM/
These days, I'm experimenting with Krill Oil, as I've heard that it's more efficient for absorption, but haven't noticed too terribly much of a difference from the TJ brand stuff. I'm taking four of these every morning, now: https://www.amazon.com/gp/product/B00L4E5RSG/
I just bought this footrest that you sort of drape over the tray table and it worked amazingly on my 8hr flight to Europe: https://www.amazon.com/dp/B086TXRD3C?psc=1&ref=ppx_yo2ov_dt_b_product_details
I'm pretty short (it might not work for taller folks) -- and although I was skeptical, it actually helped a lot when used with my compression socks!
Achieving Wellness Through Arthritis by Chris Pudlak. Incredibly well documented first hand journey of AS, what worked, what didn't, etc.
These are my favorite shoes for everyday wear, hiking, and everything else that doesn't involve running, hour(s) at cold temps or other specialty shoes. I love them but you might not like them at all and they are not necessarily superior to any other type of shoe regardless of what any website or "barefoot shoe" proponent says. You should buy them if you've tried them on and like the way they feel on your feet enough to risk $100.
I prefer shoes like these because I like super lightweight shoes that are soft and flexible and let me grab the ground a little with my feet. I like these shoes in particular because they fit my feet snugly but have enough adjustment that I can wear them barefoot or with socks and because the uppers are consistently soft/smooth and don't bunch/pinch anywhere and so are comfortable (for me) to wear for hours.
Flying 15 hours to Australia next week and I was petrified about the pain nd that I would land and waste my vacation with a severe flare up. Some $$$$ later and I paid to upgrade. Sometimes it's worth admitting an upgrade is a necessity with certain conditions if you can manage it.
If you can, upgrade to maybe premium economy which gives you a bit more of a recline and wider comfier seats which we all know a little goes a long way with these conditions.
Heated back wraps like this are awesome: https://www.amazon.ca/Robax-Wraps-ThemaCare-Lower-Single/dp/B00GOLTO7Y
Make sure you stretch and take some meds as you board. Get up half way through the flight and walk to back of plane, stretch a bit.
Comfy, loose but warm clothing, compression socks.
For storage, you want all your items to be positioned as much as possible within your functional range (whatever that may be). For most of us, from knee-> nipple height is ideal.
For deep cupboards, you can retrofit in a slider tailored to the expected load you’ll be storing. You can add risers under it, if it is bottom mounted to add a few inches and prop it up too. I find these helpful in the kitchen and they make really funky ones that spin around for those nightmare-ish inside corner cupboards.
I’ve found most important for me is to eliminate the deep reach into cupboards. The reach and twist combined with a bend forward is a no bueno in general ergonomic lifting principles for even healthy humans let alone folks like us.
For low dressers, the easiest solution might be to built a box frame for the dresser to nest within (for the cheap ikea units without feet) raise it up a half foot or so. Or for the more traditional units with 4 legs, put a top on the box frame and let the dresser sit on it with its own feet. Be careful with not reducing the dresser base footprint dimensions as you don’t want to reduce stability of the unit.
Thats about all I have on storage. My wife uses little cheapy plastic organizer towers in our closests for socks and underwear’s, If you dont have room for an independent dresser unit.
This is similar to what I got. It’s about $10 more expensive but I think that’s due to inflation. I have tried a friend’s inversion table and I would say this is comparable although it takes up less space. I’d take it slowly when you start using it and make sure you’re warmed up and and as loose as possible the first time. It gave me this crazy sensation of my head falling off because my neck wasn’t used to it and unlike on an inversion table, there’s nothing to support your neck. It just takes getting used to. https://www.amazon.com/Hammock-Inversion-Fitness-Ceiling-Anchors/dp/B09LQCSXDQ
I take Humira, which worked after 2 days from my first injection. Through supplements I've managed to delay it by 50% - so I take it every 21 days rather than the prescribed 14 days.
I take B12 for fatigue & the hopes it helps with AS/nerves.
Quercetin is a recent addition for anti inflammatory properties
Glutathione has been recommended many times for immune/cytokine function - I'm hoping this can reduce the need for Humira at all
I sit on a Balance Disc which keeps my hips/spine & SI joints engaged and moving all day
I generally try to run 5km every other day. Prior to Humira I could not run at all, let alone put my own clothes on. I get almost no pain anymore, only bad fatigue.
Yes; I used this same cooler when i went on an international trip which took around 34 hours to reach the final destination (including leaving the airport and reaching the hotel). The gel was cool was around 24 hours, and then I used USB power charger to charge for the remaining hours. When I came out of the destination airport, the outside temperature was very high which made my cooler temperature go high, so I went back inside the airport until my ride arrived outside.
https://www.amazon.com/gp/product/B08J6WQZ2P/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1
My work got me a desk which is an adjustable sitting/standing desk, it's fantastic! It sits on top of your desk so you can be seated, and by pulling some levers you can adjust it to standing level so you can have a mixture of sitting and standing (Not sure if this is exactly the same, but something like this to give you an idea https://www.amazon.co.uk/FLEXISPOT-Adjustable-Converter-Tabletop-Monitor/dp/B08CX82N8X/ref=mp_s_a_1_16?crid=3F6UUGREBK800&keywords=adjustable+standing+desk&qid=1653299855&sprefix=adjustable+standi%2Caps%2C273&sr=8-16) I need a better/more supportive chair though so any suggestions welcome on that!
I usually sleep on my side or back. This pillow has worked for me for both. On my side I have another (regular) pillow between my knees. On my back, I put that regular pillow under my knees. This one goes in my lumbar area for either side or back. https://www.amazon.com/dp/B07MTHRVB5/
Nobody believes me but an air bed. Like this: Amazon.
Used to have a Sleep Number Bed but I like this more. Replace it about every 18 months.
Inflate it to however hard you want it depending on how you're feeling.
>this balance disk > >If this link doesn't work - search for balance disk. > >Works wonders for me sitting on it!
35 cm ≈ 41.17647 barleycorn
35 cm ≈ 0.00025 sheppey
^^^[WHY](/r/UselessConversionBot/comments/1knas0/hi_im_useless/)
If this link doesn't work - search for balance disk.
Works wonders for me sitting on it!
I always always without fail out on a posture corrector, or put on my lower back brace as all flares I have are lower back, I got one on Amazon I’ll share the link below. But I do that or apply a heating pad and stretch as much as I can, cause if you stop it before it happens it’s honestly not as bad! And saves you a bunch of pain for a week or so.
Back Support Lower Back Brace provides Back Pain Relief - Breathable Lumbar Support Belt for Men and Women Keeps Your Spine Straight and Safe - Medium Size 32''- 37" at Navel Level https://www.amazon.ca/dp/B01GS08CM8/ref=cm_sw_r_cp_api_i_JFRHJM0PVCCGKYRTJBZY?_encoding=UTF8&psc=1
I got this one it helps a whole lot, but when you order make sure you measure your stomach instead of waist Back Support Lower Back Brace Provides Back Pain Relief - Breathable Lumbar Support Belt for Men and Women Keeps Your Spine Straight and Safe - Large Size 38"- 45" at Navel Level https://www.amazon.ca/dp/B01GS08CK0/ref=cm_sw_r_cp_api_i_PN24SG5MJZE8Z2J9K9XC
I have these style hot/cold packs
TheraPAQ Ice Pack for Injury - 14"x6" Hot & Cold Ice Packs for Injuries Reusable - Adjustable Gel Compress Wrap for Cramps, Back, Ankle, Knee, Shoulder - Help w/ Pain Relief for Athletes and Recovery https://www.amazon.com/dp/B016KZOSB0/ref=cm_sw_r_awdo_MB4V46KM3GTMFPY9943B
You can actually get heated vests like those electric bed warmers that are powered by a power bank battery as well but haven’t tried one myself
Me too, just ordered the same for women Doctor Developed Ladies Arthritis gloves / Compression gloves for Women & Handbook (M) https://www.amazon.com/dp/B07173ZJWY/ref=cm_sw_r_awdo_navT_a_V709MXKYCREGVANN2CR6 still in the first couple of days so breaking them in
Hi I have one of these pads. I have the UTK one that is $200 https://www.amazon.com/gp/product/B072FHBFMT/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
My PT recommended it for me as she felt I was getting relief from the infrared gun she was using on my hips. I had gone for hip injections and the PA said do you know you have burns on your hips? They were not actual burns but discolorations under the skin from turning up the heating pad. I had noticed i needed to keep turning it up. Its called toasted skin syndrome. I had no clue--I looked just like the pics! I used the infrared pad a lot to start. Now I use it occasionally. Sometimes it feels great, sometimes, it pokes me in a sore spot. My therapist had one I could try. Maybe check that out?
I use this one and it's a lifesaver, full charge lasts 4-6 hours if the massage function stays off cueheat
Is it the temperature or the size? Your comments in the thread seem to indicate its about the pad's performance, not its size. I have a 12x24 sunbeam pad and its really great. I mostly only use it on warm to low unless i'm in a lot of layers of clothing.
What IS hot enough for him? Scalding showers? A hot tub? If you figure out what does feel good maybe you can reverse engineer to your solution instead of just getting more and more expensive heating pads.
This is the pad i have: https://www.amazon.com/dp/B00474Z0Q4
This is what I was looking at
UTK Quantum Wave Heating Mat,Infrared Heating Pad for Pain Relief,32 Passive Magnet Stones,40 Tourmaline Stones,148 Natural Jade Stones,Memory Function,Auto Shut Off (Mplus: 21'' x 38'') https://www.amazon.com/dp/B08GH42H8Y/ref=cm_sw_r_apan_glt_i_GGC2ZZN23Z8FA6YWWYDM?_encoding=UTF8&psc=1
This is a very fancy one. But you're after a fitted electric blanket. Mine has a timer for either 1h/5h/9h/12h and then temperature controls from 1-9. The doubles and kings have dual controls so you don't cook your partner.
Exactly, that is what i mean, something like this: https://www.amazon.de/dp/B09F3XQTFV/ref=cm_sw_r_apan_glt_i_TDPVJVQCBDHWJXY40ZB4
Regarding plank- it is one of the excercises I tend to do to relieve the pain, but my general problem is that I don't (yet) have a routine which I would do every day regardless of pain.
THIS! Balance disk that I highly recommend to everyone - regardless of back pain.
It acts like a large exercise ball if you sit on it while working or in general. Its less intrusive and obvious for an office environment & portable to different chairs etc.
It keeps your core engaged and a constant reminder to hold a good posture.
If the link doesn't work, its amazon AU, but search for a 'Balance Disk' for ~$20
I have been vegeterian 30 years, vegan 8 months. these diets help with keeping creatinine levels down helping the kidneys stay healthy and tolerate the crazy drugs we take. https://www.mayoclinic.org/tests-procedures/creatinine-test/about/pac-20384646 https://www.healthline.com/health/how-to-lower-creatinine#eat-more-fiber
I use a giant u-shaped pregnancy pillow and it’s helped a lot. Here’s the one: Meiz Pregnancy Pillow, U Shaped Body Maternity Pillow with Velvet Cover, Adjustable Belt and Detachable Extension, for Full Body Support for Pregnant Women (Grey) https://smile.amazon.com/dp/B08DTCHBLX/ref=cm_sw_r_cp_api_glt_fabc_5740TM57116YNXPFQQR2?_encoding=UTF8&psc=1
> DMARDs
https://www.webmd.com/rheumatoid-arthritis/guide/dmard-rheumatoid-arthritis-treatment
They are used in some AS patients. In fact my rheumatologist has prescribed it for two weeks to me currently. An example would be https://en.wikipedia.org/wiki/Sulfasalazine
Hi. Anything new to report?
Bacillus coagulans (digestive advantage) is recommended by this doctor https://www.slideshare.net/IFSMED/ankylosing-spondylitis-the-gut-and-the-bugs-an-integrative-approach-to-treatment
It's murder on my feet and back. I was looking at canes recently that have a seat attached. There are different brands and price ranges.
this cd...and this pillow.
tempurpedic mattress, and isocool contour memory foam pillow were/are biggies...but i'll also have to throw in carol sinclair's low-starch diet book.
i should disclose that i'm an old dude who has never been pregnant. that i know of.
I've gotten a bit better sleep with this kind of pillow. It's smaller than it looks, keeps the hips more straight and as it can be strapped to your leg, it moves with you, less need to fully wale up to replace it.
I have sesamoiditis too. I pretty much only wear tennis shoes. Make sure the toe box of your shoe is wide enough. You don’t want any extra pressure from a too small toe box. Try a wide if you haven’t already. I also kind of like memory foam in my shoes. Right now I’m wearing these and they are surprisingly comfortable. New Balance Women's FuelCore Nergize V1 Sneaker https://www.amazon.com/dp/B08VCFTCVM/ref=cm_sw_r_cp_api_glt_fabc_DC84KC0RE3Q0WSKWQ5JA?_encoding=UTF8&psc=1
Very interesting! I have a small pillow for travelling (similar to this one https://www.amazon.com/Aeris-Support-Headrest-Adjustable-Portable/dp/B00ZIBZ73Q) that I also use in between my knees to sleep on my side as I didn't adapt well to thicker pillows (I'm a light sleeper and wake up for changing positions so it's not a problem to put it or remove it during the night) and honestly it makes a WORLD of difference. I also love my electric shiatsu pillow to death, it untangles aaaall the knots in my upper back when I use it daily.
hi, not OP but I got this one. The gel handle is great. (last one was wood and was starting to hurt my hands)
I use this EPABO contour memory foam pillow and enjoy it—I didn't want to pay an arm and a leg for an orthopedic pillow and for me, this one helped a lot and was a reasonable price. It took a while to get used to since it cradles your head/neck, but ultimately it did relieve most of my neck pain from sleeping. It worked best for me to take out the extra padding.
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Pillows that are too fluffy are the devil so I was sleeping with a super flat pillow or no pillow at all, until I got this.
I foam roll and lay on this nightly.
There are gentle stretches you can do too first thing and before bed search neck pt on YouTube.
Not sure if it's an option for you, but I've found an adjustable bed frame to be very helpful for my back, SI, and hip pain.
I got this about 4 years ago on Jet.com: https://www.amazon.com/Vibrance-Adjustable-Bed-Articulation-Finish/dp/B00K7G8M34
I've used a kinda-pointy generic foam roller that looks about the same height as that. Rolling didn't really do anything for me, but using it as something to lay on to stretch my back did. I don't see why stretching on this specific thing would be different than stretching on anything else, even just laying off the edge of your bed.
I use this on my neck and it hurts a lot but works pretty well.
I'll also mention that my main issues seem to revolve around chronic muscle tension mostly focused on my back/neck so whether these can help would also depend on your symptoms.
I second this - it takes time to get used to, but I love mine. this is the one I have and I have the queen sized one. It's a bit on the edge of too big for me, but It almost feels like you're floating on it. It also doesn't get hot at all
This one has been fantastic: Xtreme Comforts - Slim... https://www.amazon.com/dp/B014E9UO12?ref=ppx_pop_mob_ap_share
I’m a stomach sleeper so I needed one that was thin (so that my head wasn’t lifted up too far misaligning my spine) but supportive (for AS reasons, and because those memory foam ones where you sink in a lot get in the way of breathing)
I got this mattress and it is under $450 for a King right now. Honestly, I liked it so much I bought the same one when we got the king instead of the queen.
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https://www.amazon.com/gp/product/B007GMS0BG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
4% lidocaine patches and a cushion that prevents SI joint pain when sitting.
I have this cushion, and it looks like they have less expensive ones now too. I think the curve of the seat reduces pressure on SI joints compared to a regular chair seat. https://www.amazon.com/dp/B01LYO93WD/ref=cm_sw_r_cp_apa_fabt1_B1HSFb5MAP7DK?_encoding=UTF8&psc=1
TENS unit very useful for relieving pain， it’s soothing and distracts your brain to take away the pain response for awhile.
I have a Dison Care cooler I bought on Amazon that is essentially a thermos with a specially-contoured ice pack, which will keep your medication cool for at least 30 hours. It's intended for insulin shots so their graphics don't tell you capacity for biologic pens, but you should be able to measure your pens and get a pretty good idea of whether they'll fit. I bought the smaller size cooler because I couldn't imagine needing to travel with multiple pens, but they do make a larger version.
This is what I got - I lucked out because it works, but I expected to play Princess and the Pea (like I do with most pillows). https://smile.amazon.com/dp/B0000635WI/ref=cm_sw_r_cp_apa_i_4VWMFbJPTG172?_encoding=UTF8&psc=1
Your link looks comfy as HELL! Except I'm sweating just thinking about sleeping in it 😫
I've had a lot of luck with a starch-free diet...you can find some great info about it here...
There's some good info about why dietary starch can be problematic for AS patients.
It's a lot like the paleo-diet, the theory being that we evolved as hunter-gatherers, and that's the diet our bodies are optimized for.
There's a book, available on amazon, by a woman named carol sinclair, the ibs starch free diet.
Carol had been diagnosed with ibs, irritable bowel syndrome, and found from her own experience and trials that dietary starch was a big cause of her pain, so she wrote this book for other ibs sufferers.
As it turned out- carol actually had/has ankylosing spondylitis, and had stumbled onto the starch-free diet on her own.
I use one of these, and a regular body pillow. Again, a little pricey, but if you buy through Amazon you can return it without any problem.
https://www.amazon.com/gp/product/B074JF99PR/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
Do you mind sharing where you got yours from and the weight on it? I was thinking of buying this one on Amazon. I'm also worried about it being too hot for summer.
Of course! I actually got mine on amazon (as with most things in my life haha)..
ZonLi Premium Weighted Blanket (60'x80'', 20lbs for 170-230 lbs, Light Grey) for Adults Women, Men, Children | Premium Cotton with Glass Beads https://www.amazon.com/dp/B075W9CL88/ref=cm_sw_r_cp_api_i_1tYSCb4YBX36C
It is the 20lb weight. I believe the weight of the blanket is related to your weight, the heavier you are the heavier the blanket. I went with this one because my brother has one and he recommended it. The size is great for one person too.
I think you’ll be okay in the summer.. as long as you have AC. It is a warm blanket but I don’t think it’s any warmer than our down type comforter.
Good luck!!!
Backpacks are absolutely the way to go. When I'm in a bad flare up, there's no way I could handle uneven distribution of weight, even from just a purse. I bought this off Amazon a year or so ago, and it has held up really well for being so cheap. It's very slim, though. You can't hold too much beyond a laptop, a portfolio, and maybe a few other small items.
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Good luck!
I have this one and love it, to the point where when we upgraded the bed size I bought the same.
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https://www.amazon.com/gp/product/B007GMS0BG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
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I do also have a heated mattress pad that I keep on all night to help
At first, I was using the Trader Joe's brand at my local grocery. It was the first one that I experienced a drop in NSAID usage with after six week. But they've stopped carrying it, unfortunately. Instead, I did some research on LabDoor.com and settled on this one by Viva Naturals: https://www.amazon.com/gp/product/B014LDT0ZM
I've been taking it for the entirety of 2020 and it's been real good to me.
https://www.everydaybattle.com/fish-oil-and-ankylosing-spondylitis/
I got this thing a bit over a year ago, and while I can't actually roll on it, it definitely works. It also hurts quite a bit, but that's the price you pay when normal foam rollers do basically nothing. Definitely wouldn't use it if you were fusing though.
I've had this for about 6-8 years and it's been amazing for neck support. It just slips in front of your pillow inside the pillowcase. It's great for travel too (when it's safe to do so again).
https://www.amazon.com/dp/B007G4TVI0/ref=cm_sw_r_cp_apa_i_asSxFbC785EFN
Going through this right now. I don’t have the cure (otherwise I wouldn’t be in the same boat). But I have some things that help.
Normally I would go for a Trager session (very effective, gentle form of bodywork well-suited to AS sufferers), failing that a Shiatsu massage. But COVID-19 removes that possibility.
Muscle relaxants help a lot. Icy-hot stick on patches can keep blood flow to the tight muscles. A good soak in a tub with 2 cups or more of Epsom salt is soothing too.
An exercise that helps is lying on the floor with legs hip-width apart, then bringing one leg up and putting your heel on the floor about 8 inches from your other leg at about knee height. Push off from the heel so your knee drops over your body. Keep doing that move rhythmically, repositioning you’re heel if needed. If you get it right, you should feel some movement in your upper spine and some gentle loosening in the neck.
Lastly I have a Backnobber. Great gizmo. It lets you find and exert pressure on trigger points in the muscles in your upper back and shoulders. Incredibly effective!
So ever since I've been diagnosed, I've worn my back or neck braces in public in situations like this to help others cope with my disability.
I used to actually need the braces a lot more when I had a lot more pain, but now it helps shield me from any pseudo Karens/etc while still offering good support. This one in particular has served me well both medically and visually: https://www.amazon.com/DDS-MAX-Cervical-Traction-Collar/dp/B00ECIH7OI
I still get harassed occasionally, so I carry my rheum's card and hand them out and encourage them to visit the office and do a thorough investigation of my medical history.
Absolutely. I use this one from Amazon when my foot is acting up but any type of dorsal splint in your budget should help. I struggled for years with plantar fasciitis and such bad Achilles tendonitis the doctor thought it was a tear before my AS diagnosis.
https://www.amazon.com/dp/B002767BIY/ref=cm_sw_r_other_apa_i_5VEWEb30TCPRV
I have a zinus foam mattress that I ordered on Amazon. It was incredibly affordable and the 8 inch mattress gives enough firm but soft combo that I'm incredibly comfortable on it. Highly recommend but know that the inches of the mattress directly affect how soft or firm the mattress is.
Hey, I actually just bought a different kind of belt last week and it's awesome. It's stretchy and grippy so you can even wear it with pants that have no belt loops (like leggings that won't stay up when you bend over). No notches, either, you just adjust it before putting on, like a bra strap, and it fastens with a slide. I have very stiff, swollen and clumsy hands most days but I can manage this all right. I'm losing weight so I definitely need something to hold my pants up between sizes (plus I have no ass lol). Anyway, it's called Tights Up and I got it on Amazon for $11. Best belt ever. I don't know how durable it will be since the fastener is plastic, but for the price it doesn't have to last that long. Because it's stretchy it doesn't dig in when I sit down or bend, so no pain there, either.
Oh, and I thought I invented the figure skater workaround! LMAO
I personally like to write and use highlighters and am an organizer. I ordered a really nice pain journal off amazon. It has where you rate your pain, mark it on the body, write notes about the day and some other features. Here’s a link to the seller if you want to check it out. I just took it with me to the doctor. They have all different cover styles for men and women.
Pain Journal: Portable Notebook Journal. Helps Pain Management. Track Pain Daily. 2 Pages Per Day Layout. Log Pain Location, Symptoms, Triggers, ... Notes & More Paperback - August 27, 2018
https://www.amazon.com/dp/1726291812/ref=cm_sw_r_cp_api_i_QQLjEbD6XRDM9
As a female who wasn't diagnosed till I was 43 because of medical bias, tell her to stay strong and be her own best medical advocate - and if it feels like a doctor isn't listening or dismissing her, to just move on and find a new doctor. Never be afraid to fire your doctor. (unless there is only 1 rheumatologist in town)
It's very important, especially as a woman, to keep track of symptoms - so that she can show the doctors patterns and data. I use this tracker from amazon, but she could make her own too. As others noted, nothing will happen till she gets to a rheumatologist, everyone else will just hem and haw and avoid a diagnosis to avoid being wrong.
Massages are freaking awesome for my AS, unless my hip is messed up. Then it’s super uncomfortable to lay on the table.
These things help me so freaking much. I use some oil and glide them over bad spots. It’s the only thing that relieves my sternum pain, other than NSAIDS.
But if she has fragile skin or is on blood thinners, these would not be good a regular massage would be better. As long as she is comfortable with strangers touching her.
This is the one I was looking at getting. It has pretty good reviews.
I just checked out what Amazon had. They have everything ��
Absolutely! The brace is on Amazon, here. My daughter is almost 19, and has AS, a winged scapula, and scoliosis, and she wears one as well. She is better about wearing hers every day, probably because I bought it for her when she was 12 or 13, so she's just used to it. Like I said, I checked with her orthopedist, her rheumatologist, and my rheumy, and all of them said that if it works to help the pain and support good posture, they were in favor of it.
Also, you may want to get a thin, silky cami or undershirt to wear over your bra and under the brace, as it hooks right where your stomach starts below your bra line, and that can be somewhat irritating. I do not sleep in mine, but my daughter sometimes does.
I just realized that if you aren't a girl, this isn't going to be helpful for you. Sorry!
Read this book if you want all the details on the diet:
https://www.amazon.com/Paleo-Approach-Reverse-Autoimmune-Disease/dp/1936608391
Basically, to stay fully compliant, in the elimination phase, avoid all grains, dairy, nightshade vegetables, added sugar, processed foods, artificial sweeteners, coffee, alcohol, nuts and seeds as well and seed based spices (like cumin).
I did this combined with a handful of supplements (fish oil, Tumeric, ginger, Boswelia, vitamin D, L-glutamine) and saw some solid improvements. I was down to needing a meloxicam about 1x a week.
Once my doctor prescribed Sulfasalazine after my diagnosis, I’m basically pain free unless I cheat on my diet.
The second phase of the diet is reintroduction. Slowly, one food at a time, add things back to see if you have a reaction. I’ve now found I can tolerate small amounts of cheese and almonds.
Nope.
And, if I have flare up, take 8-10 capsules before going to bed. Some will say the capsules are bad way to take Kratom, but for me, it works perfectly.
Well, the fish oil may or may not help; there was a point in which I was desperate enough to try everything, and I can't say it really helped for me.
The probiotics could probably be any brand, as long as it provides a variety of bacteria. There was some research I read that suggested that Klebsiella dominates like a weed, so you need a variety of gut flora to keep it under control. Here is what I took: https://www.amazon.com/Garden-Life-Formulated-Probiotics-Acidophilus/dp/B010M98UTG
Can be as low as ~$24 when on sale at Whole Foods, etc. Amazon will ship it to you in a cold pack, I think.
And with regards to antibiotics - it can kill your gut flora and leave a lot of Klebsiella behind, which also happens to be generally antibiotic resistant.
Disclaimer - YMMV - I'm not a doctor - :) but if you can afford it, I would try to take at least 4 weeks of the probiotics and see if you feel better. Take probiotics when you aren't full of food, as the digestion acids can kill some of the bacteria. A cup of water + the probiotic pill on an empty stomach aids the quick journey to the intestines.
Thanks for mentioning UC II, I was going to order some but was skeptical. I just got some "multi collagen protein types 1,2,3,4,5 " Would the addition of the UCII supplement be necessary?
Just look for Paleo Approach. It's the diet I picked up at the end of last year and it's given me the best results, and is a good framework for starting to test what might specifically be causing your problems.
http://www.amazon.com/The-Paleo-Approach-Reverse-Autoimmune/dp/1936608391