Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How do you cope?

Well here I am with yet another bad flare up. I thought my rib was out again but its not. It's been almost a wk and its so bad that I cant really use my right side or move my neck. I cannot find relief and Im starting to go somewhat batty.

So I guess what my question is today is How do you all cope with flares? What are some tips for relief? Stretching is not an option right now I have tried with a great deal of pain. Ive used heat/cold presses, pain meds Im at a loss and just want to crawl under a rock and die at this point

Any input would be greatly appreciated thanks
Nat

I just take it day to day. What meds are you taking? If you are in this much pain, you need to see your Rheumy. Obviously what you have been doing isn't working. I take long, hot showers, use ht packs and ice packs. When things get really bad, I call my Rheumy or GP and ask for a short course of Pred to stop the flair.

You need to get your AS under control. Are you taking a TNF blocker? They don't stop all flares, but they do cut down the number you have. After I started Humira, I went months between flares.

Right now Im only taking diclofenac and tylenol 3 with codeine. I refuse to take any sort of perks. I am curently waiting for approval for remicade my rheumy is hoping to have word by april-_-

I have tried most nsaid to date with no help. Also was on sulphasalizine but those made me violently ill and he told me to stop them. I dont react well with prednizone and steroid shots are great for pain yes but very bad for your bones.

Has anyone tried acupuncture? and did it work?

I know what you mean Nat!, I'm in so much pain today and so sick with IBS, I'm at work but not functional! i so wish I could go home and lay down!

Something that has helped me so much over the last week: How to be Sick by Toni Bernhard. This author has chronic illness and she writes about practical and inspiring ways to cope. Even if one is suffering in one's body, one can alleviate the suffering that arises in the mind, is what I'm learning about.
I hope you feel better soon. Connecting with others online, talking to a friend who really understands, watching funny videos, reading a *can't put it down* kind of book, playing gently with my dog--all of these things help me during days when I'm not feeling good.
All the best to you!

After I had to stop taking anti-TNF (Enbrel) due to the nerve damage it caused, I stayed in a constant state of dibilitating pain. That's when I started NSD, and it brought me back to a good level of functionality. I only flare now when I do too much heavy lifting and twisting while working around the house and yard (from aggravating exisisting damage). So, don't just cope: try taking a more proactive approach, whether it's medication or NSD.

Im slowly getting into the nsd but finding very hard (im a pasta junky..lol) i dont eat sugars in any form so im one up on that one :-) right now im trying to find a good gluten free pasta, any suggestions? Ive switch alot of foods to gluten free already only starch i have is my yummy whole wheat pastas -_-

urghhhhhh............down with pasta........bring on the cheddar........wow, yum..!

For me, any starch is too much. In contrast to LSD, NSD means absolutely no starch: no wheat, corn, rice or any other grain. Also, no peanuts or potatoes. There's a lot of NSD info on this site. Gluten is actually a protein found in some grains, so it is not a problem for AS by itself: the problem is the wheat in which it's found.

Also, sugar and dairy in moderation have not bothered me, but that varies much from person to person.

--Greg

lots of ice, hot showers, as much sleep as i can get, lots of fluids, ultrasound (used to do it through PT, now i have my own at home), PT in the past but chiro now. a short course of pred. gentle exercise but only if it seems to make me feel better, not worse. so if its my upper back, going for a walk seems to help, but if its my SI joint, then sitting or laying with ice packs is a better plan for me, as any being up on it just makes it worse when its in a flare.

but really trying not to have flares, that is the secret i think. my LDN and supplements have me feeling better between flares.

my rheumy thinks allergies might be putting me into flares (as my worst flares are each summer), so my next area of exploration is to talk with an allergist. wondering if allergy shots could help me avoid the next big flare.

as for diet, i'm very sensitive to casein and a little to egg. so avoiding dairy and egg. for me, i didn't test sensitive to any of the grains, but i am on a low starch diet. i focus on eating fish/chicken/turkey/seafood/ a little red meat, fruits and veggies, nuts. i drink a lot of herbal tea, some green tea.

i also consume a lot of ginger, take my fish oil, anything considered "antiinflammatory" i try to do day to day.

i think the best way to deal with a flare is to try to prevent them from ever happening. but while in one, i just try to minimize the damage done and get out of it as fast as i can. and make myself as comfortable as possible when in one.