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Joined: Mar 2011
Posts: 22
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susanna Offline OP
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I just need a place where I can vent and be understood. I'm feeling so discouraged, sad and in pain today. I'm on the fourth day of NSD with no dairy and feel almost immobilized with pain in my shoulder, collarbone and thoracic spine. I'm 23 and have had AS diagnosed for 3 years, psoriasis for 13 years and IBS for 2 years. I have tried a variety of NSAIDS and methotrexate. The next step would be biologics but I don't want to be someones science experiment. I need to know that I have exhausted all natural ways of treating my symptoms. I just want to LIVE my life. I feel that I have so much to experience. I just moved to a new town and feel so much pressure to get a job, to apply to school, to take care of my health. Money is seriously dwindling. I feel so tired and so very desperate. My doctor suggested I try the Paleo diet which I am doing (very similar to NSD). It's my last hope before I try biologics. I just feel at the end of my rope today. Any words of experience, encouragement, wisdom would be much appreciated. This is the only place where I feel totally understood and at home with AS. Thank you to everyone who posts.


24 years old, diagnosed with psoriasis at 11, AS at 20, and IBS at 21. HLA B27+. Have tried NSAIDS, oral and injectable MTX. Currently experimenting with diet.

Love the support that this website offers. You are all warriors!
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Veteran_AS_Kicker
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Veteran_AS_Kicker
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Hello,
I am not sure what to say that may encourage you other than " These times will surely pass" meaning you will somewhere, sometime have a peace within you. Moving is very stressful, stress and AS do not mix well. Things will settle down, you will eventually have a smile that comes from the heart.

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Ninja_AS_Kicker
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Hi Susanna: Welcome to KickAS. Sorry to hear of your pain. I hope you find some relief soon. I hope you are able to settle into Vancouver and live. It is such a beautiful and vibrant city. Get well...Tom

Joined: Mar 2012
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Hey susanna, sorry to hear you're not feeling the best. Are biologics the things that are possibly effective but also possibly come with a lot of side effects? If it's the thing i'm thinking of i'd leave it til every other option has been exhausted. Have you heard of methyl sulfonyl methane (MSM)? It's an easily assimilated form of sulphur that's been said to be effective for relief of pain and inflammation. http://www.all-natural.com/msm.html or silicon or glucosamine? http://www.lef.org/magazine/mag2003/apr2003_report_silicon_01.html
Other than that all I can recommend is try and keep active. Inflammation can be made worse with rest sometimes so if you're able for some gentle excercise I always find that helps. Hope this helps ^_^

Joined: Sep 2009
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Susanna, don't forget that the process of moving to a new town is quite stressful even if you don't have AS. And stress makes me flare.

And like elmerfudd said, This too shall pass. It just really sucks right now.

hugss


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
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Very_Addicted_to_AS_Kickin
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if you're like me and flare every few months but can be pretty ok in between, then the things i've listed below my name might be things that you could consider.

the supplements and vitamins along with diet, exercise, and chiro have me feeling pretty good at times in between flares.

but i still flare and that is a problem. this last flare, i was able to nip it in the bud with prednisone (just a 6 day 4mg dose pack).

so for me, the stuff listed below my name for in between flares and maybe prednisone for flares.

if that's not good enough, i'll try sulfasalazine first, then humira. i'm not afraid to try the humira, but if i can do it with the other stuff, then i'd rather do that. but i've heard a lot of people say how wonderful the biologics have been for them, along with others who couldn't take them. we're all different, so i figure the only way i'll know how i respond is to try it; if i need to i will.

also, i'm a big fan of LDN (low dose naltrexone - google it smile ) its dramatically improved my enthesitis.


Last edited by Sue22; 03/29/12 09:18 PM.


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)
Joined: Jan 2004
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Hello Susanna - I see you are from Kelowna. Know that place - see that photo? The fruit orchards up above Kelowna, winter 1995 - it was -9 and on a prior ride out I froze down into the saddle. So, buy a pr of Sorels, Ahhhh. Beuts. So, clad in heavier winter cover-ups and Sorels on feet (look like Michelin man <LOL>) had a great winter riding out every day up in the hills and orchards.

Sorry you are feeling so desp and under par. As you have only just started the diet mebbe a few more weeks might begin to start giving good results. I am LSD, and now-a-days, somewhat intermittent with it as I 'seem' to have fairly well healed my gut. Have been testing it with starches recently to 'see' what happens (!) - doing good (x'fingers!)

Good luck with the diet - hope everything works out for you -

Molly C (France)
Keeping on Keeping on (as we all do)


MollyC1i - Riding OutAS
Joined: Apr 2009
Posts: 1,595
Gold_AS_Kicker
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Hi Susanna,

First tings first:

hugss hugss hugss

I have been in the place you are now, both mentally and physically.

Take it one day at a time....... don't set the bar too high with all that meet n' greet, get a job etc - too much pressure when you're hurting so much! eek

The NSD gave me part of my life back that I thought I had lost forever - persist, persist, persist, that's all I can say. Have faith that it might do wonderful things for you too, but it did take a l-o-n-g time for me to feel much. I was kept strong by so many here before me who had benefitted from it.

Can you try all those natural alternatives? Fish oil (does a reasonable job on the background aches for me...), MSM, Boswelia (aka: frankincense - must be good - the wise men gave it to Jesus, so they say....). Oregano oil to kill the bugs in the gut.

Keep moving gently, ice packs to the really 'ouch'y bits, a couple of warm showers a day....

Come here and moan and vent - that's why we're here.

Remember - take it one day at a time, and set your goals to be achievable. No need to flog yourself with a wet noodle when your body is punishing you enough already! :facepalm:

P.S.: 3 cheers for your doctor for suggesting the paleo diet as part of a possible solution!
cheerleader cheerleader cheerleader 1cup

Last edited by inkyfingers; 03/29/12 10:59 PM. Reason: added the PS

Louise

Happy to be a physio by day, not happy to be a Spondy 24/7! wink3
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Very_Addicted_to_AS_Kickin
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Louise - 'wet noodle' <LOL>

Boswellia - known also as Loxen (in America). Was well remarked on (in some publication or other) by a rheumy over here as being a possible potent antiinflammatory - he'd been on sabbatical in the US for some time and came across it over there. Here's some info :-

ISRCTN35444380 - Comparative efficacy of Boswellia serrata ...
www.controlled-trials.com/ISRCTN35444380 - Similarto ISRCTN35444380 - Comparative efficacy of Boswellia serrata ...
Comparative efficacy of Boswellia serrata extract and 5-Loxin® in the treatment of osteoarthritis of knee: a randomised, double-blind placebo-controlled clinical ...
[PDF]
5-LOXIN (AKBA) Boswellic Acid
www.plthomas.com/system/pdf/5-LOXIN_Data_Sheet_10-08.pdf - Similarto 5-LOXIN (AKBA) Boswellic Acid
(AKBA) Boswellic Acid. 5-LOXIN. ® is presented in alliance with Laila Nutra, India . p.l. thomas & co. inc. 119 Headquarters Plaza. Morristown, NJ 07960 ...
5-LOXIN - Origin - Boswellia serrata
5-loxin.com/?page=origin
5-LOXIN is a new joint health ingredient - awarded in India and Australia, with patents pending in North America - deeply rooted in the ancient history of ...
Boswellia / 5-LOXIN - the NYC NF2 Support Group
nf2nycsupport.org/boswellia.php
Boswellia has been used to treat inflammation causing illnesses for thousands of years. For NF2, research is already underway of Boswellia, in Ohio State ...

I was going to try it out but, it can be hypertensive and as I already suffer from horrible hypertensive spikes then, sadly, will have to side step using it.

Another one you can try is the low dose Naltrexone. It has been most efficacious for me. Lots of info here on KA, see alternatives forum - several of us are using LDN to good effect. Also see the LDN Newsletters that are posted to the alternatives forum. It is a bit of an orphan drug for AS but if unable to get a script for it, then it is available on-line.

Hope this has helped. take care -


MollyC1i - Riding OutAS
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
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Hi susanna and welcome to KA!! hugss Vent all you want and we're definitely here if you need anything... grin2 Big hugs and again...welcome to KA!!! hugss


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
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