Best products from r/ankylosingspondylitis

I know this is a bit late to the party but my friend just got diagnosed as well and we went on a day long researching binge. I tried to consolidate everything we found to reference later, so for you and any one else interested here is a wall of text. I hope it helps.

The http://www.spondylitis.org website has some good background information with a useful guide on where to start. But I was surprised how there was no emphasis on the importance of diet. I found another website called kickas.org which focuses on diet and the findings of an English doctor named Alan Ebringer. Here's a quick summary of his findings which I haven't found refuted anywhere:

"Ankylosing spondylitis is considered to be a form of "reactive arthritis" following an infection of the terminal ileum and ascending colon by the bowel microbe Klebsiella. Specific anti- Klebsiella antibodies in AS patients have now been reported from 17 different countries: England, Finland, Germany, Sweden, Netherlands, Scotland, Spain, Belgium, Slovakia, Japan, China, Australia, Canada, USA, Mexico, Argentina, and Turkey.
Over 95% of AS patients possess the HLA-B27 antigen whilst it is present only in 8% of the general population. The Klebsiella microbe has molecules which resemble HLA-B27 and this is the reason why AS patients generally belong to the HLA-B27 group.
In addition, the pullulanase molecule of the Klebsiella microbe crossreacts with type I collagen found in tendons and bone and also with type IV collagen found in basement membranes of retina and uvea, thereby explaining the pathological sites of AS."

We all have trillions of bacteria from thousands of different strains in our gut and I bet most everyone has that Klebsiella bacteria. It's only a problem in people who also have the HLA-B27 antigen who then experience an overgrowth of that particular bacteria. Since that bacteria feeds on starches, you can alter your diet to essentially "starve" it out. This is the London AS diet

As you can see, you may have to cut out additional things like dairy, eggs and even some veggies like onions if you don't get relief by sticking to the middle column. As you starve out the Klebsiella bacteria you'll want to actively replace it with beneficial bacteria (probiotics) like the ones found in yogurt(get the plain, unsweetened greek yogurt), Kefir, kombucha or probiotic pills like these.

Additionally, as you cut sugar and other carbs you'll also be starving out the candida yeast that lives in all our bodies. In some people, too high of a candida population can cause a host of issues ranging from hives to arthritis. You may not have any issues with candida, but if you did, they'll start dying out as well (bonus!). Having so many yeast and bacteria dying off can cause problems on their own unfortunately, they release toxins when they die and their little dead cells have to be cleared out by the body. The body can react to this sudden die off and it's called a Herxheimer reaction (or just "herxing"). Herxing can feel like a whole body inflammation/hives/the flu. You're body can normally process the dying organisms along with the toxins fast enough, but drink plenty of water to help yourself out, your kidneys and liver will be working hard and they'll need the water(some tea can't hurt either).

Another interesting thing I came across is leaky gut syndrome. The basic idea is that the lining of the intestines can become too thin, thin enough to allow large, not-yet-fully-digested proteins and other molecules to permeate the gut and enter your bloodstream. Then, your immune system attacks these unknown molecules and the result is a host of inflammatory responses like arthritis and IBS. Incidentally, frequent use of antibiotics can cause work to thin the lining of the intestines, as well NSAIDs.

This stuff is so increadibly complex and interrelated! but also fascinating. The health of your gut and the kinds of bacteria living there can even influence your mood and determine your obesity risk as well.

Fasting also fits into this puzzle. Humans have fasted for religious and health reasons for all of recorded history. Juice fasts and such even had a pop culture resurgence. One of the benefits of fasting is that you starve out the yeast and bacteria since only your own cells have access to any energy (your own fat stores). This allows you to essentially reset your body and repopulate your gut with healthier bacteria. This article references a few scientific studies that seen to back up that idea. A less appealing way to repopulate your gut bacteria would be... However, IBS and colitis are often comorbid with AS so it might be worth considering. It was for some on the kickas.org forums.

Inflammation seems to be at the intersection of all this. In many ways, inflammation is at the root of all illness. In a sense, you aren’t just your human self, but an ever changing proportion of human cells, bacteria, yeasts, and viruses as well. For long term health you have to keep your non-pathogenic guests in balance lest they bloom and become pathogenic AND maintain an immune system strong enough to evict the active pathogens but not attack your own cells. At the risk of redundancy, I think it’s useful to include this book that covers the importance of that balance and the risk of antibiotics.
A final resource I found was on the Specific Carbohydrate Diet, which isn't must different than the London AS diet but the website was very helpful and had a lot of information that was free even though they're trying to sell a book.
AS can seem daunting, maybe I should have led with a positive testimonial from someone who managed to control his AS
Dotyisle’s AS story

Oh, one final thing, exercise as much as you can! I have a book called "The Exercise Cure" and for Arthritis (closest thing in the book to AS) he says those with severe pain should at least do stretching, yoga/swimming/strength exercises like air squats and lunges.

TL;DR: A low/no starch diet will lower the number of harmful bacteria, reduce your inflammation response, and increase the effectiveness of traditional medicines at smaller (easier on the body/less side effects) doses.

You're certainly right that some exercise is better than none. Some form of biking is probably a good thing. I was extremely active before my injury so this very passive situation I'm in is very frustrating.

As for insurance I live in Sweden so we have a different system. A doctor can prescribe almost anything that has proven medical merit and the government pays almost all of it. So before the summer I tried acupuncture for ~2 months. It worked pretty ok for the rest of the back so that's good but the upper trapezius wouldn't budge. It felt like starting over from 0 every time she put the needles in there. I don't mind the needles but it felt a little pointless when the problems in trapezius didn't get better. I hope your wife gets better effect from the acupuncture than I did. I've had nice effect from it in the past where things just started to subtly get better without one being able to point to a specific thing.

Perhaps a good massager would be better for me since I could use it some every day. This looks like nice and heavy duty toy. :)

Another things that I have been contemplating is to get an injection of (I don't even know what it's called in Swedish) a muscle blocker. It's something that prevents the muscle from contracting and lasts for ~2 weeks. I haven't checked what the doctors think about that idea yet though but it has helped me in the past when other muscles weren't cooperating. But I'll try the massager first and will remember your advice on giving it some time to relax.

Thanks a lot!

i've had my tempurpedic for over 20 years, and i swear by it. but not
at it- it hates that. i also use a memory foam "neck" pillow like this one. it's great because it cradles your head, and supports your neck.

also- as a side-sleeper, i always had a pillow to support my "top" arm. a good body pillow is great because it can be between your knees, and also support your arm in the same way, and at the same time.

sweet dreams.

​

I work in construction and have to wear steel toe boots. I found some side zip that are a god send I can just slip my feet into the with no issues and if I want a tighter fit I just zip them up. Since I found the side zip boots I've looked for similar kinds in dress shoes with some pretty good luck. I love converse also and they can be tricky. I'll also wear some Van slip ons.

​

For socks I only really wear them when I need to. I can't stand to walk around in just socks so I usually go barefoot around the hose. I have seen some sock holders that you set up and slide your foot into:

https://www.amazon.com/dp/B07285V3VW/ref=sspa_dk_detail_1?psc=1&pd_rd_i=B07285V3VW&pd_rd_w=Su0id&pf_rd_p=8a8f3917-7900-4ce8-ad90-adf0d53c0985&pd_rd_wg=xwKX5&pf_rd_r=N1QW4W4GTKKXHDP9VN4A&pd_rd_r=e8ddf36a-a5c9-11e9-888e-11c74a3a8f49

This is what I found.

​

For toe nails I go to get a pedacure every other week to maintain. As a man in construction it is one of the better things I have done for my self. You need to take care of you feet after all.

​

I like to wear button up shirts so if you are having elbow issues I would suggest leaving them buttoned up and only leave like the bottom button unbuttoned and maybe the top three so you can just slip it on over your head with only having to button minimal buttons.

​

Check out this site for show scrubers

https://www.arthritissupplies.com/bathing-aids.html

​

Sorry for lenthy post in Short added some links for a back scrubber and a sock slider device and other, hopefully, helpful ideas and work arounds.

Yes you can. Just spend 30 minutes every day for a month:

• reading this book http://www.amazon.fr/Allen-Carrs-Easy-Stop-Smoking/dp/0615482155 many people managed to quit effortlessly and happily with it. It's been translated in many languages if you're not native english speaker
  
• this website has plenty of resources: http://whyquit.com/
  
• reading this sub helps too: http://www.reddit.com/r/stopsmoking
  
  Becoming a non-smoker is going to be one of the best thing which happened in your life. This is especially true for those who have AS.
  
  Good luck, stay strong.

I have a book by Sarah Ballantyne. She’s the founder of the diet. The book is called the Paleo Approach: Reverse Autoimmunity Disease. It’s designed to help all autoimmune diseases, and the book gives you the science behind the diet and what to eat and avoid.

https://www.amazon.com/Paleo-Approach-Reverse-Autoimmune-Disease-ebook/dp/B00I44JHTE/ref=mp_s_a_1_3?keywords=paleo+aip&qid=1558054697&s=gateway&sr=8-3


She has another book that has a lot of recipes, but I don’t have the time or patience to cook a full meal for my family and a separate one for myself, so I basically just do meat and veggies with some fruit (berries or an orange) for dessert.

My breakfast usually consists of sausage, Tiger nuts, and some dried fruit.

Mid morning snack is a coconut milk shake with added mct oil, collagen protein, and cinnamon.

Lunch is a salad (romaine and spinach with diced carrots, cucumber, onion, turkey, and bacon) with a homemade dressing (extra virgin olive oil, Apple cider vinegar, garlic, lemon juice, ginger, oregano), celery and slices of cucumber and carrots with honey (some people have issues with carrots FYI even though they’re allowed on the diet).

I snack on pork rinds or toasted coconut chips in the afternoon.

Bananas and sweet potatoes are allowed starches but my symptoms were flaring more when I was eating them, so I stopped based on that and how starches are generally not great for AS.

After 1-6 months (when you’re symptoms are better - if they’re better) you can try to reintroduce foods one at a time to see how you react. She does state that some people with high inflammation may take over a year to get back to an acceptable level of inflammation. She also recommends avoiding NSAIDs as much as possible because they aren’t great for your stomach lining, but somethings you need to take one.

Supplements I take are:
Fish oil
L-glutamine
Turmeric
Boswelia
Ginger
Probiotic
Calcium/vitamin D
Multi vitamin with a lot of B vitamins for my fatigue

Turmeric and ginger are slow acting anti inflammatory. They eventually build up enough to act like a daily NSAIDS without the side effects. Boswelia after a month or two builds up enough to act like a mild TNF blocker apparently. Only been on them for a month, but all the above seems to help quite a bit. I’m not on any DMARDS or biologics yet.

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!!!

Give this a shot. Works pretty well. I'm also a resident and there is a good amount of scientific validity to this product. Take it twice a day with food for better absorption. It should really help.

Life Extension Super Bio-Curcumin Turmeric Extract 400mg, 60 Vegetarian Capsules https://www.amazon.com/dp/B000X9P5GM/ref=cm_sw_r_cp_apa_i_uzW6Cb7N0G5ED

The one exercise I can always do is chair yoga, seems silly but it helps, http://www.amazon.com/Healing-Aches-Pains-Charles-Matkin/dp/B00006JDS0 I do some section of this video. I also lay on the floor with my legs on a yoga ball in a seated type position and do a very slight spinal twist for a few min which brings relief.
In my 18 years I have been unable to find a maintainable exercise routine- (tried everything from yoga, pool ex, kick boxing, co ed sports and yes foolishly tried running a marathon) currently I am trying 3 days of exercise to include one day with a long walk, 1 day with 10 min cardio and 20 min lower body weight machines and 1 day 10 min cardio with 20 min upper body weight machines. I am also in a pt routine with 10- 15 min stretches to strengthen and stretch my neck due to cervical headaches. On a side note I am currently the heaviest I have ever been since being diagnosed, (160/ 5'5") the least active and have the fewest amount of arthritic flares- tell me how that makes any sense? best of luck to you.

I wear bra size 30F and have found wire-free Gloria Vanderbilt sports bras to be great. They provide needed support without causing rib pain (even when I have costochondritis!) The bras have adjustable straps and a back clasp, which makes it easy to remove.

If you do not want to wear a bra, DON'T!!! It's your life and nobody else's :)

Link: https://www.amazon.com/Breathable-Seamless-Removable-Gloria-Vanderbilt/dp/B07C5Q59DJ

Turmeric curcumin has been my best friend I take 2-3 of these in the morning and night before I go to bed. Drink at least a half gallon of water per day.

Turmeric Curcumin - 2250mg/d - 180 Veggie Caps - 95% Curcuminoids with Black Pepper Extract (Piperine) - 750mg capsules - Most powerful Turmeric Supplement - by Doctor Recommended https://www.amazon.com/dp/B00WT4D57K/ref=cm_sw_r_cp_api_pHYmybRJMMJ7B

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!

Epsom salt is a life saver! The best deal I've found is here

Also, I grew up in East Texas and now live in DFW...screw our weather (:

Your symptoms do sound like AS to me.

• X-Ray evidence can take a long time to appear, especially in the early stages. By the time X-ray evidence does appear, there is often irreversible damage. You want to be diagnosed as early as possible.
  
• Blood tests are often no help in diagnosis but can be used to rule out other diseases.
  
  • Over 30% of patients with AS will NOT have raised ESR value in blood tests, even when they have active inflammation.
    
  • A negative for Rheumatoid Factor (RF) means you do likely have it.
    
  • Many AS patients test negative C-Reactive Protein as well.
    
    Because of this, it can take 6-10 years to be diagnosed with AS. That's too long! Because of this, try to read and learn as much as you can about the disease so you can help guide your doctors.
    
    I found these two books to be very helpful:
    
    https://www.amazon.com/gp/product/0192632825/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1
    
    ​
    
    https://www.amazon.com/Ankylosing-Spondylitis-Michael-H-Weisman/dp/0195399102/ref=pd_bxgy_img_3/144-6520311-3143741?_encoding=UTF8&pd_rd_i=0195399102&pd_rd_r=67ca7118-73da-4683-9c85-004740e7f2ec&pd_rd_w=N8wVF&pd_rd_wg=LomRf&pf_rd_p=a2006322-0bc0-4db9-a08e-d168c18ce6f0&pf_rd_r=N367XZKSVJ5PFEQD1Y7H&psc=1&refRID=N367XZKSVJ5PFEQD1Y7H

After turning my headrest backwards, I have to layer two to give me enough bulk:

ZHUAIMAO Car Neck Pillow with... https://www.amazon.com/dp/B07CZFMP3R?ref=ppx_pop_mob_ap_share

EXCEL LIFE Soft Auto Car Neck... https://www.amazon.com/dp/B0183FFQRK?ref=ppx_pop_mob_ap_share

The first one is firm and thick, giving most of the bulk. The second one is thin and fluffy, providing a softer surface to actually rest my head on.

I got this pillow for myself and it helps at least some with sleeping... https://www.amazon.com/gp/product/B07C5BTS5Z/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1