Help me with this pain please.. - Mothering Forums

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#1 of 6 Old 02-23-2013, 11:48 AM - Thread Starter
 
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Ok so I've been scouring the internet about ankylosing spondylitis and SI joint pain and it seems like everyone is saying "Eat this diet, do yoga, get chiropractic care and your pain will be gone!" So I've been doing it all and I still can't walk some days! Even right after a chiropractic adjustment. I'm so upset because I'm 25 years old and in all reality I should have a cane because simply walking has me in tears some days. So what am I missing? What else can I do? Is this just the nature of the disease? Is there no hope? And even more importantly, if I'm this bad at 25..what will 50 look like? 60? Beyond? How can I avoid being crippled?


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#2 of 6 Old 02-23-2013, 05:45 PM
 
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I'm sorry. I have chronic nerve pain (not debilitating even like you're experiencing except when it's in my feet). It kills quality of life to a large degree and I feel for you.

I've found Livestrong to have current supplement information about various conditions that is "up" with what I find when I do pubmed searches myself. http://www.livestrong.com/article/314837-natural-supplements-for-ankylosing-spondylitis/

Have you tried acupuncture? I saw a lot about NSAIDS and physical therapy. Are you getting that standard medical side of pain control?

Are you resistant to a cane? It might actually help when pain is acute, right? I'm so sorry you're suffering.

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#3 of 6 Old 02-23-2013, 06:15 PM
 
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I just googled the name of that disease and it says it's a form of arthritis.  I know many people have had success finding pain relief from arthritis with the Paleo diet.  Go to robbwolf.com, type in ankylosing spondilitis in his search, and you will find lots of info.  Good luck!

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#4 of 6 Old 02-23-2013, 06:17 PM
 
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Hello, I have a friend who has AS
the. He finally had to get Humira. It has helped him immensely.

Dee
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#5 of 6 Old 02-23-2013, 06:23 PM - Thread Starter
 
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Quote:
Originally Posted by sbgrace View Post

I'm sorry. I have chronic nerve pain (not debilitating even like you're experiencing except when it's in my feet). It kills quality of life to a large degree and I feel for you.

I've found Livestrong to have current supplement information about various conditions that is "up" with what I find when I do pubmed searches myself. http://www.livestrong.com/article/314837-natural-supplements-for-ankylosing-spondylitis/

Have you tried acupuncture? I saw a lot about NSAIDS and physical therapy. Are you getting that standard medical side of pain control?

Are you resistant to a cane? It might actually help when pain is acute, right? I'm so sorry you're suffering.

I'm due to give birth soon so I haven't started anything except chiropractic because my SI joints were fusing and that's not conducive to birth. I have never tried acupuncture but I totally will as well as PT.

I know a cane would help but I guess I struggle with the idea. I don't want to draw attention in public and I don't want my family to think I'm "milking it". Lame right? Sigh.

Thank you for your encouragement, I'm making a list of things to try!

 

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Originally Posted by 2babies2kidsmom View Post

I just googled the name of that disease and it says it's a form of arthritis.  I know many people have had success finding pain relief from arthritis with the Paleo diet.  Go to robbwolf.com, type in ankylosing spondilitis in his search, and you will find lots of info.  Good luck!

I was actually looking at the primal blueprint diet which is supposed to be similar to paleo, I will surely do more research on that, thanks!


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#6 of 6 Old 02-24-2013, 07:05 PM
 
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I'm sorry you are in such pain at such a young age, and, given that you are in pain, you're lucky to have a diagnosis.  Many people with AS go years and years not knowing what's going on.  Here's a typical story, in the news today, from Great Britain:  http://www.walesonline.co.uk/news/welsh-politics/welsh-politics-news/2013/02/25/mp-i-felt-i-d-been-through-10-rounds-with-mike-tyson-91466-32871598/ 

 

A few thoughts: 

When modern science cannot find a cause (such as autoimmune diseases), even with all the microscopes in the world, then they must not be looking in the right places.... 

 

There's a thought that AS is hereditary, because of the HLA B27 gene, but not everyone with AS has the gene, and not everyone with the gene has AS, so liberate yourself from any thoughts of a hereditary fate (in case you had any).

 

The paleo diet can make a difference for many people with inflammatory conditions.  Very often the central issue is gluten, but if you are not allergic or intolerant to gluten or you don't have celiac disease, then the paleo thing may not be as effective.  What you need to know is what foods you are allergic to and remove them.  This gives your gut a chance to heal.  That's a given:  Your gut needs to heal.  Paleo or not, lots of cultured & fermented foods are needed.

 

Learn about the gut.  It's more than just the gut, it's a brain, it's deeply wired into our nervous system.  It needs repair not just from foods, but from internal stress.

 

Difficult to address autoimmune things with only diet and supplements and physical adjustments.  It has to be changes in physical diet, mental diet and spiritual diet. 

 

To get started understanding the mental diet please read "When the body says No" by Gabor Maté MD.  As you read the book you'll get a picture of yourself, he'll put you on the map.  Typically rheumatoid arthritis, such as AS and many other autoimmune things are the realm of "nice" people.  Nice people don't want to milk it (as you put it), don't want to make a fuss, they bend over backwards to get out of the way.  Lou Gehrig (of the disease by that name) was a really nice person, he'd always go the extra mile, never made a fuss about himself.

 

Check this out:  http://scienceblog.com/59167/mindfulness-meditation-may-relieve-chronic-inflammation/  Mindfullness meditation as a way to reduce the inflammation.  There is a "Mindfulness Based Stress Reduction" class, taught across the country.  It'll make a difference for you.  You have to become aware of the internal stress.  Not stress from outside, my job, my boss, my spouse, that kind of stuff.  Internal stress, what I'm saying, or feeling internally in response to the minutia in my life.  It's been there so long that it's pretty much inaudible, invisible, out of reach.  But it's there, and it needs to become conscious so that you can make decisions about it.  This doesn't happen in a weekend, but you can begin anytime...

 

Another step in a good direction is to find a laughter yoga class nearby.  It really helps to loosen up inside, not take yourself so seriously.

 

Finally, Spirit.  Autoimmune things can have a parasite component.  A food component.  Possible genetic (I don't think so) component.  Lots of components, lots of ways to approach it.  And, at the heart, at the core, it's an attack upon oneself.  It's about not being oneself (in order to please someone else).  Repressing myself, my genuine self, in order to get along as best as possible.  (We implode rather than explode, act in rather than act out.)  It may be a good strategy in infancy and childhood, but in adult life it has to change.  As we become more genuine, more authentic, more the person we were born to be, the inflammatory process will decrease.  (Need to stop the internal inflammatory chatter).  Spirit is the more subtle, more elusive part, but it's the real healing.  We have to be authentic.  It may take years to begin grasping this part, but the seed has to be planted.....

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