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#469461 - 05/12/12 03:31 PM Re: Hi! New here. [Re: NinaG27]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19181
Loc: Upstate NY
the first person to really help me was a PT. the first person to suggest AS was a PT, back in 2002-2003. turns out she wasn't far off. finally dx'ed with undiff spondy in 2010. PT and physiatry (doctor of physical / rehab med) got me back to functional in 2003. took a turn for the worst again in 2006, but now doctors and such have me doing better once again. i find i'm a constant work in progress. but am also finding a lot we can do to feel better. but we're all a bit different too.
_________________________


sue

USpA
Humira (no more methylpred or Aleve?)
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
chiro
walk, bike
no dairy (casein sensitivity), limited eggs

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#469463 - 05/12/12 03:35 PM Re: Hi! New here. [Re: NinaG27]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19181
Loc: Upstate NY
i've never had imaging done while in a flare, so only mild inflammation has shown up in scans. but some "arthritic damage" to the SI showed up in a CT scan. some bone spurs / osteophytes, etc in my cervical spine showed up with MRI. a few other "disc disease" type things in my lower lumbar, where it attaches to the SI. but not "enough" to classify as AS, thus undiff spondy.

but i don't really care anymore what they call it, because i have an excellent rheumy more interested in helping me feel better, than i getting hung up on "waiting for more to show up". he's just treating me based on the symptoms i do have.
_________________________


sue

USpA
Humira (no more methylpred or Aleve?)
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
chiro
walk, bike
no dairy (casein sensitivity), limited eggs

Top
#469465 - 05/12/12 03:43 PM Re: Hi! New here. [Re: SJLC]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19181
Loc: Upstate NY
Originally Posted By: SJLC

Aside from complex carbs (starch, lactose), eating foods that you're "allergic" to also promotes gut inflammation, which makes the arthritis worse. I put that in quotes because I'm really referring to food intolerances, which are a different type of allergy than the kind most people think of -- instead of an immediate hives-and-trouble-breathing acute reaction, it's a more subtle reaction that keeps your gut inflammed[1]. There may not even be obvious digestive symptoms. If you have any strong food intolerances, avoiding those foods can have a big improvement in your health. It's good to know even about mild food intolerances -- I'm mildly allergic to egg whites, which means I don't notice anything when eating a small amount (e.g. baked into a low-starch almond cookie) but eating multiple boiled eggs a day for days in a row made me feel *bad*.


A quick way to tell whether the food you're eating currently contributes to your pain/stiffness is to do a brief fast. For me, one whole day of water-fast was enough to tell the difference. The next morning was an unusually good one. Some people have blood sugar issues and can't handle even one day of fasting, in which case it often takes a month or two of diet experiments to be able to tell for sure.

[1] http://ibstreatmentcenter.com/ibs/food-allergies-a-cause-of-ibs/more-about-food-allergies (explanation of IgE vs IgG and IgA reactions)


i'm one of those people who can't fast. and my food insensitivities weren't obvious to me. so my naturpath had the testing done for me. i'm severely sensitive to the casein in dairy. and a little sensitive to egg. everything else came back ok, including gluten. and i've been tested for gluten 3 other ways as well. in hind sight, the casein sensitivity makes sense as too much would always make my gastritis flare. and staying clear of dairy just might be helping me feel better between flares and hoping fending them off as well?

from what i've been reading, casein sensitivity is very common, as common they think as gluten sensitivity perhaps. not sure if its just cow casein so want to get further testing done. being able to eat goat and sheep dairy products would open up a whole new world of food. and am finding almond milk in my tea and coconut ice cream to be fine substitutes. i never ate a lot of dairy anyway since i developed the gastritis and it bothered it. but now, trying to have a zero tolerance for it. yesterday i had chicken wings without the blue cheese dressing!

anyway, i highly recommend the food sensitivity testing.

you can do trial and error, keep a food / symptom diary, but the testing is a nice supplement.
_________________________


sue

USpA
Humira (no more methylpred or Aleve?)
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
chiro
walk, bike
no dairy (casein sensitivity), limited eggs

Top
#469472 - 05/12/12 07:22 PM Re: Hi! New here. [Re: NinaG27]
naj Offline
Platinum_AS_Kicker

Registered: 10/04/07
Posts: 1627
Loc: U.S.A.
Hi Nina, no, I have not ever had an MRI. For a while I was kind of obsessed with, "well do I officially have AS or not??" Now, after seeing an AS specialist at UCSF I feel more accepting and at peace with the whole spondy spectrum. Some people have fusion, others don't...I've kind of let go of that (mostly) and try and take it a day at a time. So I just say: spondylitis instead of saying pre-AS or something else, usually, though, as I said my officially dx for what it is worth is axial spondy...etc lol! But...that's just me. : )
What you were writing about people having plans and you needing to find your balance with being comfortable and expressing yourself on what will be painful for you-- I can really relate to that and understand. I've learned to be more centered and clear within myself and then be able to communicate that, but it is a learning process for me. I wish you the happiest mother's day, a day that works out well for you and doesn't leave you tired and achy! : )
_________________________
______________________
Jan
(naj)

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#469475 - 05/12/12 08:11 PM Re: Hi! New here. [Re: NinaG27]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
Originally Posted By: NinaG27
Especially since I worry so much about my spine fusing & how that will effect my quality of life.


One more reassurance on that point: IF you fuse (which is a big "if", since you're already *28* and don't notice any, while I had fusion that showed on an x-ray by age 17) but manage not to fuse crooked, it will NOT have a big impact on quality of life unless you're totally hooked on certain athletic pursuits that require flexibility (no more rock-climbing, walking on hands for me...) or a huge travel buff (driving for more than a few hours in a row is painful). Keeping straight does help a lot though, because that lets you avoid a rather extensive surgery to get back upright.

When I meet someone new they still don't notice that I have a chronic illness; an observant person assumes I woke up with a stiff neck. This is after my whole back is pretty much fused, and my neck is mostly fused. I am able to commute to work, do my job as a programmer, go on an occasional vacation including plenty of walking, and have a pretty fun life overall. I am SO lucky compared to a friend with Lupus for instance -- there is just no comparison. My beloved other half has a chronic fatigue thing going on, and that's also worse than having a spine fused straight.

So keep going to your physical therapy, switch to sleeping flat on your back (if you don't already), but don't let the future scare you.

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#469476 - 05/12/12 08:17 PM Re: Hi! New here. [Re: NinaG27]
Farinelli Offline
Silver_AS_Kicker

Registered: 08/14/07
Posts: 1489
Loc: Pennsylvania
Hi Nina!

I am glad you found us! I am sorry to learn of your health issues. I am also sorry to hear of your father's passing. My mother passed away at age 55 from cancer and she had AS as well. My AS started in my SI joints and has spread to every joint in my body. My SI joints are still good on x-rays though so I am good with that.

Craig

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#469520 - 05/13/12 03:40 PM Re: Hi! New here. [Re: NinaG27]
NinaG27 Offline
New_Member

Registered: 02/08/12
Posts: 5
Loc: IL
I am SO glad I finally decided to write in here! You guys are great! So many things I want to respond to but I'm in a bit of rush (going to see Beauty & the Beast in 3D with my daughters) I will get back when I have more time. Just wanted to say thank you all for taking the time to respond! All of reassurances & advice are wonderful to hear!!!

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#469620 - 05/15/12 07:46 AM Re: Hi! New here. [Re: NinaG27]
Dotyisle Offline


Registered: 03/07/02
Posts: 8336
Loc: Rosario, Argentina
Hello Nina,

One more item, many supplement with folic acid as well when on these meds. Did not read all the replies to see if anyone responded with this advice....

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking


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#469758 - 05/16/12 11:11 AM Re: Hi! New here. [Re: NinaG27]
Pea Offline
Gold_AS_Kicker

Registered: 02/24/11
Posts: 1568
Loc: Pacific Northwest
Yes, Tim is right, you need to be on Folic Acid if you take Sulphasalzine or Azulphadine or Methotrexate.

I am affected a lot by the weather and we want to move further south. We have tried to sell our house for 4 1/2 years now to no avail but we are leaving by the end of summer. My father just died and my mother needs help so we are moving to Kansas to be with her. While not perfect weather, it is a lot more dry, warmer and sunnier then the Pacific Northwest. You were asking if it makes a difference and there are some on here along with me that say that the barometric pressure has a lot to do with it. I've watched it for 7 years now and it absolutely does, even the slightest up or down. I have Fibromyalgia too and so the weather affects both. Hope some of this info. helps.


Edited by Pea (05/16/12 11:12 AM)
Edit Reason: spelling
_________________________
Pea
Diagnosed with A.S. 26 year's ago.
Diagnosed with Fibro 9 year's ago.
Sulphasalazine, Folic Acid, Remicade

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