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.

Naps when I don't sleep! Stretching when I can. Walking daily, even if it's to the end of my block. And swiming if it's only lower back (with googles and mask so I dont have to turn my head).

Heat, and sitting my O gravity recliner, Chiro if something is out, and Physio if it's more to do with the joints or ligaments.

Lyrica at nite to help with sleep. Enbrel and Methotrexate.
Meditating, breathing. Remembering this too shall pass.

Dont crawl under rocks, I crawled under a rock one time, its not all its cracked up to be. Especially in the winter, the summertime is better to crawl under rocks, so give it a few more months.
Some one had posted here once, Sue or Mig. I can't remember but they were telling a story at a time when they were in severe pain and riding an elevator and yelped out in pain. As the people were gawking she said " its ok its just pain " sad but yet funny, sometimes you got to just laugh. Sometimes you just have to cry.
sometimes you just need to talk.
I think you are coping fine.......

haha Elmer thank you so much I needed that laugh and you know what they say "Laughter is the best medicine"

Hi Nat, I'm sorry you're in such a bad way right now.

You can get good gluten free pasta. Brown rice pasta is OK, but don't over-cook as it goes horribly mushy. Also, heating it up the next day will do the same thing. You can get corn pasta, which is very good, tastes 'normal' and can be reheated the next day. You know it's cooked because it stops tasting like corn!

Going gluten-free is a good way to ease into low starch. I'm on a restricted starch diet; basically, low starch, but mostly no gluten. It has helped a great deal; especially in conjunction with my biologic.

And even tho stretching and exercise are out right now, try to walk every day and do very light range of motion to keep your joints lubricated. I mean very light. Do the movement only as far as you comfortably can, don't push it. And do deep relaxing breaths. You might find that this will keep your muscles a little looser, which might help them let go their strangle hold on your joints.

Why the six week wait on biologic approval, if you don't mind me asking.

Hugs,

Thank you for your reply Kat. I do alot of range of motion excersises when I can. I am fortunate to be a pilates instructor or use to be

My doctor submitted all my info to the government for approval why? Im not to sure but it is what it is I guess.

As for the pasta I have heard that the corn pasta is the best going to go buy some hopefully it compares lol I love my pasta. Im a vegetarian so this diet is extra hard for me as most of my diet is starches, not sure I will be able to pull it off...lol

Sorry to hear that your struggling at the moment, I've been there too.
The best pain relief I've achieved is from Anti TNF. Had 5 good years on Remicade, now onto my third with Humira.
Prior to the Anti TNF I was taking voltarol, like yourself. I found it quite good with pain relief, not so good on my stomach. That's the main reason I went onto Anti TNF.
I'm also taking 3x 1000mg Omega3 supplements every day. Up from 1000mg per day. I also try to eat oily fish & a generally healthy diet. Not all the time Not sure whether the Omega 3 actually helps me, I take them none the less.

I have found a hot water bottle directly onto the affected joint can ease the pain. Whilst trying to stay as relaxed as possible, when possible.
Hope you find some pain relief soon.
George.

Yes George I have to agree my diclofenac is hard on my stomach. I can only tolerate one pill a day,I take the the two when Im flared. I take alot of supplements I have no choice being a vegetarian. I take omega's but in a plant based oil. I have no meat, poultry or fish in my diet whether it be direct or indirect.
I too love my hot water bottle not too sure if it help with the pain but it does relax me so ya i guess it does help lol. But I will be happy to update that my lovely flare is starting to go away I can now move my neck and feel 80% better.

Thanks to everyone who has left comments it all helped

Nat

Wow, then you know full well how phenomenal pilates is for us! I'm a complete convert. Still do the home routine my teacher put together for me 10 years ago. (You do know not to roll like a ball because our spines are too delicate, right? - I'm sure you do.)

Your rheumy may have had to show that you meet the criteria. I think in Ontario you have to tried and failed with 5 NAIDS/or several DMARDS, or have got ulcers from them (or other health issues). I got ulcers. Yay me. However, that was back in 2005. Not sure if anything's changed.

Just do the best you can with the starch. Really, I do know that there are vegetarians here who have managed to pull off no starch, but proteins and other nutrients can become an issue. So, I don't know. Personally, low starch is the way to go. But that's me. You'll find your own way through.

Hugs,

By the way, what's stopping you from teaching pilates? Just curious and nosy. My teacher sometimes did the exercises with us, sometimes she didn't. Mine you, her work was purely matt based. Don't know if it makes a difference, but I've found that even when I'm in a bad way (not a horrible way, that's a different beast altogether), just doing a tailbone series, bridge prep, mermaid prep and swan prep can be really helpful (not to mention cat and dog). And then, I don't do anything requiring strength, more the lightest stretch possible and ROM.

Hugs,

Here in ontario you have to have tried 3 nsaids and one dmard. I am on my 4th and dmards make me ill. I can no longer teach because i find it very difficult to bend to constantly adjust people to proper form. I still practice at home but now so more posture correcting stretches then advanced moves and no rolling and i dont do much flexion moves. I miss it though .

Nat,
Hope you get the Remicade approval soon. Worked very well for me, took no other meds whilst on it & gained good pain control. Never needed a hot water bottle, whilst on Anti TNF.
I try to eat generally a balanced healthy diet. Not personally a fan of eradication diets. By that, don't mean eating a vegetarian diet. My wife Iis vege too, has been for 10 years now. No meat or fish, basically. No gelatine either Myself, I eat meat & as much oily fish as possible. Yet I cook for my wife at times too, so use to a vegetarian diet, as well.
Have you tried any quorn products? My wife loves them.

If you really have to have pasta, then do you have any asian food shops around where you can get bean thread vermicilli? Its not quite the same, but might be a bridge to cutting it out completely. Gluten free isn't no-starch necessarily, so finding a gluten free pasta won't help with no or low starch. I did find that on a low starch diet I can tolerate a bit of rice, and you can get rice noodles (though they are highly processed and refined, which isn't good).

Really though, I suspect that if you want to give low starch or no starch a go, you are just going to have to go cold turkey off the pasta. My hint would be to immediately increase the protein and good fats at the same time as cutting the grains and starches, and that should take care of most of the carb. cravin

I have been experimenting with cabbage, thinly sliced so it is in very skinny strips, and then quickly blanched. Very good with a meat sauce one would put on spaghetti.

I got over pasta pretty quickly. It hurts too bad. My birthday sandwich reminded me of the evils of starch. Try the cabbage as a pasta sub. At least once. You get to twirl it, and it's nummy and good for you.

If you add a little cream to the water when you boil the cabbage, it will take away most of the cabbagey taste. I also take a peeler and shread up a crookneck squash or a zucchini, it will be good as a pasta substitute. I put spaghetti sauce on it or butter, herbs and cheese. Sometimes you have to be creative. Add in some cooked chicken, ham chunks or shrimp, tasty.

When I am in a very bad flare, I take antiinflammatories, pain meds, baths (gentle stretching in the water) then ice, and put Tiger Balm on my sore joints.

Also, I cry it out, which always helps.

I am finding eliminating sugars, except fruit and cutting out wheat has helped too.

The flare will settle down, hope our advice helps you feel better soon!

i'm changing my answer:

this time, instead of doing all those thousands of things mentioned in the above post, i did a pred taper instead. marvelous! i went from really awful to really terrific within a few days. i know this can't become a common practice, but more than anything i think it has clinched it for me that i'm done trying to do it without antiinflammatory drugs.....this experience has pushed me to the next phase.....in a pinch, on a rare occasion, pred can work wonders. it was a lot easier and a lot more effective than the ways i used to try to cope.

Yea Sue!!!!!! You made a decision and a good one. I'm proud of ya'sister! You don't have to use them often, just for huge flares. If you could find something to maintain at least a level 4-5 that would help but nothing like a taper to get rid of the biggies. Way to go!

have you tried Tramacet?? or Tridural? i find it helpful for pain and take Tramacet (tylenol and tramadol) extra as needed as well as the 2 Tridural 100 mg slow release i take during the day.

also for me at least flare worst is only a day or two then i can start plainning do gear up to recover.. right now.. planning on getting to local pool to sit in thier big hot tub and stretch and gently excercise in this warm safe environment

also i have finally given in and hired help for every month to keep cleaning up. and when i am flared i contemplate asking for more help

hope you ar efeeling better soon

have you thought of chiro regularly as regularly as excercise. i always forget to mention CHiro.. cause its part of my week. every week i get checked. any subluxsation puts the body in stress regular checking and gentle chiro using activator and the table really helps to keep me healthy. i credit it for alot of how well i have coped for so long.

Also RMT... find the$$ and go.. a gentle well trained one can do wonders. if its a bad flare.. go as often as you ccan

I am very interested in your Chiro appts. My rheumatologist told me "no Chiro" and "no hands on PT". My PT was trained by a DO and does hands on type therapy. I did quit going because of the what the dr. said. He told me my spine is so bad that it could be dangerous for me. ??? What does yours do?

Blessings to you all.
Possi

thanks pea

took my last pill this morning, and can already feel the effects of not having it. so long as i don't go back into a flare........

I think corn is one of the worse starches around, especially when it's processed a lot, such as in pasta. Again, gluten-free is not starch free. Gluten is not a starch. If you are eating any bread or pasta, then you are probably not going low-starch. You need to avoid all grains (corn is a grain), potatoes, bananas, puddings, and anything with starch added (which includes most processed foods).

Yes, it sounds like a lot of trouble, but it's worth the real effort to have pain levels greatly reduced. I went from getting ready to apply for disability, due to the pain, to now functioning quite normally with only an Aleve each day.