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#498853 01/01/14 06:12 PM
Joined: Dec 2013
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Hi all,

Quick question. This idea that exercise helps relieve the pain of AS- I totally get the "move it or lose it" thing but it just doesn't ring true for me... The more active I am throughout the day, walking/bending/lifting the more it hurts! It hurts to bend etc but it also hurts later in the burning/aching/inflammation kind of way.

So when you say exercise helps what do you mean? You work out and to feels better WHILE you're exercising? Just after? Or does it keep symptoms at bay a bit more in the long term?

Right now I'm not exercising at all outside of daily activities working and chasing a toddler but that's because my pain is totally out of control right now. I'm starting celebrex soon and hopefully that will help enough that I can get moving again.


23 y.o. Female, diagnosed with AS in 2009 at age 19.
Currently in unbearable pain but starting Celebrex soon, just waiting for drug coverage to come through.

Proud mom to a sweet 15 month old girl who keeps me very busy.
Joined: Dec 2008
Posts: 5,231
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Posts: 5,231
Hi Micheline,
As a rule, inflammatory arthritis pain is worse at night, first thing in the morning, and during periods of inactivity. It's one of the aspects of the illness that differentiates it from osteoarthritis which generally gets more painful with use. My doc described it to me years ago as the 'inflammatory proteins pooling up in the affected areas'. When you get moving increased blood flow helps to thin them out. This may not be scientifically correct but it gave me a good picture of what was going on.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Nov 2012
Posts: 97
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I never experienced pain relief from exercise, if the pain is from inflammation. On the contrary it made things worse.

But if the pain is mechanical, like stifness or loss of ROM(range of motion) after an inflammatory period, it helps.

So, for me, contrary to what Wendy told, exersize doesnt seem to help the root cause, pain-wise.

Never the less, i try to move it, to postpone fusing.


Diagnosed at July 2012 after 8 months of pain. HLA-B27 negative.
NSAIDS don't really work. I can't use Anti-TNF because i had tuberculosis years ago.
Wish you all best health, M. Sami Kuzey
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Originally Posted By: Micheline
Quick question. This idea that exercise helps relieve the pain of AS- I totally get the "move it or lose it" thing but it just doesn't ring true for me... The more active I am throughout the day, walking/bending/lifting the more it hurts! It hurts to bend etc but it also hurts later in the burning/aching/inflammation kind of way.

So when you say exercise helps what do you mean? You work out and to feels better WHILE you're exercising? Just after? Or does it keep symptoms at bay a bit more in the long term?

Right now I'm not exercising at all outside of daily activities working and chasing a toddler but that's because my pain is totally out of control right now. I'm starting celebrex soon and hopefully that will help enough that I can get moving again.


Looking back, when the spondy symptoms were mild, exercise definitely helped. The hallmark stiff back often responded well to heat and to movement.

However, when I was in a vicious flare, any type of exercise or strengthening activity made things worse. I often felt that I was very susceptible to joint or muscle injuries. I did everything that the PT instructed me to do, but every exercise seemed to make things worse. As the disease tightened it's grip on me, it was pretty depressing.

So like you, I have had poor results with exercise when I was in full flare. Now that I am managing the disease successfully, I can do any physical activity that I used to without concern of injury or pain.


"But I also have to say, for the umpty-umpth time, that life isn't fair. It's just fairer than death, that's all." -- from William Goldman's _Princess Bride_
Joined: Feb 2011
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Hey - a fellow 'Squamptonite' clap , small world!

Exercise and inflammation is quite the conundrum...
When I have my inflammation levels under control (in my case, via diet) I am able to do a fair bit these days, as in two decent mountain bike rides in a one week period (that's a good week).

Before I got my inflammation under control, when things were at their worst, I couldn't do anything active, absolutely nothing, without setting off even more inflammation (pain, swelling, and stiffness). No vacuuming, not carrying groceries, etc.

So for me the key is to have overall control of the inflammation, and then carefully exersice to 'match' where I'm at. I definitely need 'rest days' in between active days, so things can calm down, since a lot of physical activity can flare me just as much as food can.

I sent you an FB message Micheline wink
/Kristine


B27+, 2nd Rheumy: 'inflammatory backpain'.
IBS + SI/lumbar/thoracic/cervical/knee/elbow stiffness & pain.
Managing inflammation very well with diet since Jan 2011.
Slow but consistent reduction in symptoms year by year.
Haven't seen a physician in years.
Took LDN (4.5mg) between 2013-2015, 2018-2019.
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Thanks for your responses, everyone! Kristine, I think I am a lot like you. When my inflammation is well managed, I'm able to exercise as long as I listen to my body and take appropriate rest. I've just never found it to relieve any symptoms which is what I find confusing about all the literature about AS that says it gets better with activity.

2 years ago, before I got pregnant I had been running and doing CrossFit quite successfully. I had a bad flare right before getting pregnant and I think things have just progressed from there. My daughter is now 15 months old and I'm currently in the middle of the worst flare I've ever had. I'm at that point where I can't do anything without pain- not household chores, walking the dog, or working. So of course I can't really exercise either.

I am going to do my best to get this under control and just think back & remember the good times where I was able to be more active. I know I'll get back to it one step at a time.


23 y.o. Female, diagnosed with AS in 2009 at age 19.
Currently in unbearable pain but starting Celebrex soon, just waiting for drug coverage to come through.

Proud mom to a sweet 15 month old girl who keeps me very busy.
Joined: Oct 2008
Posts: 895
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Quote:
I've just never found it to relieve any symptoms which is what I find confusing about all the literature about AS that says it gets better with activity.


I never found that my AS got permanently better with exercise, but I could get temporary relief with exercise if I could get past the initial pain and stiffness. After I warmed up from exercising, the pain levels would go down drastically. But the pain would quickly come back when I cooled down. When playing sports, It would take a while to warm up, then I would have to keep playing hard, for as soon as I would slow down, the pain and stiffness would come back.

I believe this is typical for AS, thus the "the literature about AS that says it gets better with activity." It's only temporary.

Otherwise, exercise seems to help slow down the progression of AS, especially careful stretching of the back.

--Greg


AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Getting good results with no-starch diet since 2011.
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That's how I understand it, Greg. For most inflammatory arthritis, exercise will temporarily relieve stiffness and pain and may slow down some of the damage. But the pain and stiffness return, particularly at night and at rest n


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Sep 2001
Posts: 2,192
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Exercise has been my life saver. I am a runner, and I can tell a big difference if I go a week without running. I run, and do a little weight lifting.


Steve Orchard, Running from AS & MS
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Originally Posted By: FormerFoodie
Originally Posted By: Micheline
Quick question. This idea that exercise helps relieve the pain of AS- I totally get the "move it or lose it" thing but it just doesn't ring true for me... The more active I am throughout the day, walking/bending/lifting the more it hurts! It hurts to bend etc but it also hurts later in the burning/aching/inflammation kind of way.

So when you say exercise helps what do you mean? You work out and to feels better WHILE you're exercising? Just after? Or does it keep symptoms at bay a bit more in the long term?

Right now I'm not exercising at all outside of daily activities working and chasing a toddler but that's because my pain is totally out of control right now. I'm starting celebrex soon and hopefully that will help enough that I can get moving again.


Looking back, when the spondy symptoms were mild, exercise definitely helped. The hallmark stiff back often responded well to heat and to movement.

However, when I was in a vicious flare, any type of exercise or strengthening activity made things worse. I often felt that I was very susceptible to joint or muscle injuries. I did everything that the PT instructed me to do, but every exercise seemed to make things worse. As the disease tightened it's grip on me, it was pretty depressing.

So like you, I have had poor results with exercise when I was in full flare. Now that I am managing the disease successfully, I can do any physical activity that I used to without concern of injury or pain.


This is most similar to my experience.

For me, exercise is a delicate balance. Most times, gentle exercise, like walking is good for me. But if I'm in a flare, even walking is out. So I walk on the good days and avoid it on the bad days.

I used to swim but that always bothers my SI joint now.

And anything that causes me to "rotate my hips" is bad for my SI joint:

so, no: vacuuming, sweeping, mopping, raking, snow shoveling. I suppose many forms of dancing would also be out, but I was never a dancer so it doesn't matter.

I do feel pretty good after a good bike ride, but only if not in a flare at the time.

and like Former Foodie, my enthesitis was so bad, that in a flare, I could easily tear a tendon or ligament. The LDN hasn't helped everything, but the one thing it did for me was prevent me from tearing tendons and ligaments and improved the tendinitises a lot as well.

So, exercise for me is a delicate balance. Gentle exercise is good (walking and biking and some yoga poses are ok, swimming and excessively moving the SI joint and some yoga poses are out) most of the time, but when in a flare, I have to sit on ice and wait it out….



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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