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Little_Katy #501474 03/16/14 09:40 PM
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Sorry folks but AS will definitely win the war. The battles you win will become less and less. Take it from one who is just about defeated.

Eddy #501477 03/17/14 12:02 AM
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Originally Posted By: Eddy
Sorry folks but AS will definitely win the war. The battles you win will become less and less. Take it from one who is just about defeated.


I'm sorry to hear you're going through a hard time, Eddy. There are definitely times when it's hard to remain positive, but here's some things that help me, and hopefully they might be of benefit to you as well. I like to put my suffering into perspective and when I do that I realize I'm just one person out of billions and we all suffer, just differently. This is just how my life is unfolding and it's just part of the human condition, but I can still be happy and thankful for all the good in my life. Even though the people on this board have arthritis and it's hard, many things are worse and so in a way we are lucky that this is the illness we got and not some other worse one. I like taking walks when I can, reading interesting books, watching television, listening to music, making my house more comfortable through little projects, catching up with friends, playing with my dogs, and just enjoying time outside when the weather is good.

Good luck to you. I hope you can find your happiness.


Everything is okay. Trust yourself, and do not live from a place of fear.
Little_Katy #501478 03/17/14 12:32 AM
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Hello Katy, and welcome to the house of pain....
I enjoyed your introduction. I did not get any whiny " vibes "
it was well written, informative and you should be a teacher.
It is hard to express in words at times, we hold hands in this manner.
that's what the SHOUT board is for!
just out of curiosity, have you ever been in a car wreck, or any other type of trauma when you were younger?

Little_Katy #501485 03/17/14 04:52 AM
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No never any type of trauma. I got a wicked stomach bug in 7th grade. Right after that I ached for weeks. Then I had a flare with ankle pain, I had xrays and everything. Soon after the raynaud showed up. Things kind of settled for a while, then came back unrelenting in my 11th grade year.

When the ultrasound technician was doing my shoulders he asked that question in various forms at least three times.

Thanks for the encouraging words. My whiny post was under inspirational stories ( yes I do see the mismatch) what I wish I had the guts to say thread.

Little_Katy #501486 03/17/14 05:04 AM
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Eddy my battle is new compared tp your so I do not pretend to truly understand where you are coming from. I justed wanted to give you an encouraging word and say keep on fighting. Don't let AS win.

Little_Katy #501493 03/17/14 02:01 PM
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This is a borrowed phrase that I live by.
" I cannot defeat you, but I will never let you win "
Most of us spondylitis people have wicked gut problems at some point.
And where most of the immune system is located. A wicked stomach problem is something your body could perceive as trauma. Even a surgery could be traumatic.
look up klebsella, it's a bacteria within the gut, many find relief with diet.
You can learn more here about AS than any other place that I have found.
I haven't read up on your syndrome yet, but was diagnosed with frozen shoulder syndrome. They call something a syndrome because there is no rhyme or reason, no cure and no cause. Keep your chin up!

Eddy #501503 03/17/14 05:01 PM
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Originally Posted By: Eddy
Sorry folks but AS will definitely win the war. The battles you win will become less and less. Take it from one who is just about defeated.


Hello Eddy,

Sounds like you are on a rough spot right now with AS, hope and pray it turns around for you.

AS may win many battles, but we need to keep battling on. My father when he was finally diagnosed in late 20's was told by his doctor he would be in a wheelchair by early 50's. His neck and back fused... but he still lived a good life and finally retired from teaching at 65 he loved it so much.

Trying to "win the war" may start with the battle inside first and it is not an easy one when dealing with chronic pain. That is the perspective my father gave me. Take one day at a time.

Best to you,

Tim

Last edited by Dotyisle; 03/17/14 05:03 PM.

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

KONK - Keep ON Kicking
Little_Katy #501505 03/17/14 05:58 PM
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Eddy, I am so sorry you are having such a hard time. I saw a rheumatologist in my 20's and I was in a wheel chair. He said, "You might as well get used to it because this is about as good as he gets." I told him that I was moving on because I didn't know that I would get better but he certainly didn't know that I wasn't and that I wasn't going to let him take my hope from me.

Bottom line, I got out of the wheel chair within the year and close to 50 years later I am still going. Pain? Fatigue? Surgeries? Discouragement? Yes, but I will keep going.

You will get through this bump or maybe it's a hill in the road, but you can do it.

Hugs and Blessings.




Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

Little_Katy #501529 03/18/14 04:54 AM
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Raynaud is more of a nuisance than anything, but I must admit it probably is what got me diagnosed. When it was first diagnosed my doctor basically said it was nothing to worry about. Later my mom learned that if you have pain with an episode that means it is probably associated with an autoimmune disease. That is what made her push so hard for a referral.

Rheumatologist also said it was more serious than doc first said. Yes now it is no big deal but if I do not avoid attacks and therefore damage, then in my old age I could face more serious problems with circulation.

Having to stay warm all the time is a pain because even air conditioning can cause an attack. It is also hard to have allergies and asthma and not be able to take decongestants. I have tried them all and they all cause an attack. And the biggest annoyance is no ice packs to help with pain or icy sensation creams.

Little_Katy #501533 03/18/14 09:26 AM
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Not being able to use ice sounds like a major inconvenience!

Hot showers and heating pads do help with the muscle spasms, but too much heat, I find, flare the flares worse if I'm not careful (with the heating pad for instance).

If you can't use the icy or ice hot gels, wonder if you can use capsaicin? I can't, it causes my skin to break out in a first degree burn: bright red skin and skin that feels like its on fire. When I tried it on my hands early on, I had to go to the pharmacy and they had to give me either a steroid creme or antihistamine creme, can't remember which, to fix the problem, plus lots of ice to get the inflammation down. But a lot of people respond well to capsaicin; either ask a doctor or do a tiny spot test first; I had no idea I'd have such a severely negative response; don't think that was typical.

Why can't you use a decongestant? Can you use an antihistamine? Decongestants raise my BP too much, but antihistamines are fine for me; I use zyrtec every day and it does help.

I will apologize ahead of time if I suggest ice to you in the future, but too if you put that you have raynaud in your signature along with some other facts, you could avoid that sort of thing.

I know someone with raynaudů.it does seem like another major challenge to have. She spent a year up in Rochester MN at Mayo; that was a real challenge for her, til she then went further south.



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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