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#207939 - 05/14/11 09:00 PM Re: [Sticky] Women Only Forum [Re: Mama_Quay]
iviary Offline
Registered Visitor

Registered: 11/30/10
Posts: 2008
Loc: North Texas
Quay, I assume they've already checked for kidney stones and such? Short of when I have bladder infections, I haven't experienced anything like what you describe. I would suggest starting a new topic with your question so that more people see it. smile I would be surprised if it's anything directly caused by AS, but there's always the potential for additional autoimmune/autoinflammatory issues to pop up when you already have one- AS/ReA.
_________________________
Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol

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#208013 - 05/15/11 09:22 PM Re: [Sticky] Women Only Forum [Re: iviary]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Hi Mama - sorry to hear of this ongoing problem!! I agree with Mary, start a new thread. Also, read through the old ones as there are a couple of women with ongoing bladder/urinary tract issues. I believe interstitial cystitis has come up here in the past. Good luck finding an answer! I hope your AS/ReA is under control, anyway.....
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#212812 - 07/19/11 10:46 AM Re: [Sticky] Women Only Forum [Re: Mama_Quay]
Meme4girls Offline
Registered Visitor

Registered: 11/12/10
Posts: 6
I had the same thing and it took months to get it under control so I feel for you. I do have the interstitial cycsitis and ostitis pubis (deterioration of the pubic bone) and they finally called it "painful pelvis syndrome". I got two Interstim devices implanted and it has helped the pain tremendously. They are much like a pacemaker for the heart but stimulate the nerves to help relieve the pain. I hope this info helps you.

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#220419 - 10/28/11 04:29 PM Re: [Sticky] Women Only Forum [Re: Meme4girls]
kimmeebeemee Offline
Registered Visitor

Registered: 10/27/11
Posts: 55
Loc: California
Hello All,
I'm new to this board. I was diaganosed with AS about a year ago. It was fairly easy getting diaganosed as my sister had just been and we have many of the same symptoms. For a long time we both just felt like we were crazy with all the different things that were causing us pain.

Can't wait to chat with people who feel the same way I do. I talk to my sister but sometimes its tough even with family and someone who has the same condition.
_________________________
Kim,
AS diaganoised 2 1/2 years ago, and Fibro. Remicade every 4 weeks, Oxycodone PRN, Zanaflex, nexium for reflux, trazadone & amitripilyn for Migraines, Maxalt. 35 years old Married for 15 years to my best friend and biggest supporter Jason, mother to Nathan 15 and Samantha 8.

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#220427 - 10/28/11 07:05 PM Re: [Sticky] Women Only Forum [Re: kimmeebeemee]
WoreSlick Offline
Registered Visitor

Registered: 10/28/11
Posts: 23
Loc: Pacific Northwest
I hear you on that. I believe my sister has it as well but she has no insurance to look into it. She also has Lupus. Our symptom's are so similar but I choose to treat it and she chooses to ignore it until she has to go see a Dr. I don't even think with insurance she would follow through. I am glad to see someone feel's the same way I do about having a family member who has it (possibly).
_________________________
WoreSlick
Ankylosing Spondylitis for 25 year's.

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#220754 - 11/03/11 06:58 PM Re: [Sticky] Women Only Forum [Re: WoreSlick]
kimmeebeemee Offline
Registered Visitor

Registered: 10/27/11
Posts: 55
Loc: California
I was the one who ignored, but now am choosing to educate my self and she just kinda hangs out in pain.
_________________________
Kim,
AS diaganoised 2 1/2 years ago, and Fibro. Remicade every 4 weeks, Oxycodone PRN, Zanaflex, nexium for reflux, trazadone & amitripilyn for Migraines, Maxalt. 35 years old Married for 15 years to my best friend and biggest supporter Jason, mother to Nathan 15 and Samantha 8.

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#226474 - 01/31/12 04:46 PM Re: [Sticky] Women Only Forum [Re: Mama_Quay]
youngatheart Offline
Registered Visitor

Registered: 01/31/12
Posts: 12
Loc: Folsom, California
Hi. I'm new diagnosed, in daily chronic pain for months. The rheumatologist who disgnosed me with undifferentiated spond has me trying sulfasalazine. I can't take NSAID because of my stomach. I'm on tramadol for pain. What I'm wondering is if you all work, if you're able to get up and go to work/jobs? I haven't worked for 9 months. I don't have a life anymore either. I apologize if I am in the wrong forum. I don't mean to offend anyone, I am new to the forum and not sure how to properly use it yet. thank you!
_________________________
61 yrs old, female. Diagnosis: AS 1/2012. Current meds: Methotrexate, Simponi, Folic Acid, Prednisolone drops for Iritis as needed. Love Aleve, but not good for my liver.

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#226685 - 02/03/12 09:52 PM Re: [Sticky] Women Only Forum [Re: youngatheart]
rulingthepain Offline
First time visitor

Registered: 02/03/12
Posts: 1
Loc: Alabama
Hi Youngatheart!! Welcome to AS it is a world of challanges that can be managed. 1st read all of the information you can get your hands on relating to your diagnosis.
Now, get plenty of rest and restful sleep is the key. Be very honest with your Dr. about which meds work and don't work. I am sorry to hear NSAID upset your stomach try natural herbs, massages and anti inflammatory diet. I was diagnosed at the tender age of 23 and now 20+ yrs later I have learned to rest, work/play within my limits and take my meds religiously. You can still have a life but now every moment is planned to your specifications. This is my first post I hope this helps!
_________________________
Managing
Rheumatiod 36 yrs
AS 27 yrs

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#249793 - 03/17/13 02:07 AM Re: [Sticky] Women Only Forum [Re: ]
CarloZBT Offline
First time visitor

Registered: 03/16/13
Posts: 1
Loc: Texas
Greetings!
I'm a "newbie" here. I was diagnosed with AS in 2004 but lived with AS reeking havoc on my body for years. AS would attack my right eye (never my left eye), iritis would ensue and I'd get sick and would be treated and healed before I could get in to see a specialist who maybe would have been able to determine what was wrong. For a long time I lived with the pain, and thought I was crazy - mentally causing it to happen, bringing on the different things that were going on in my body.

I look forward to the communication and camaraderie that I see taking place here. I have a cousin that I was told has AS but I honestly don't really know her and don't feel comfortable talking to her about it. So, at this stage of the juncture, I feel better about talking to strangers than I'd ever feel about talking to her.

PS I'm African-American, Choctaw, and Welsh and was told that not many women of color have been diagnosed with AS. I'm open to communicating with anyone. But, if you're a woman of color, I'd be excited to eMeet you and to hear your experiences living with AS too.


Edited by CarloZBT (03/17/13 02:27 AM)
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HLA-B27 positive. It took years to get diagnosed. Painful, chronic iritis led to my diagnosis. Finally, I vowed the next time I had an attack, I would demand more tests. A go-getter opthamalogist, Dr. Scott Vandenbelt, located in Bay City, MI, is who had me tested.

AS is frustrating. Unless it attacks my eye, it's invisible. So, people don't believe me and have called me "crazy" and a "liar". A rhuematologist told me to keep my stress level low, to cut down on having flare ups.

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#249808 - 03/17/13 02:54 PM Re: [Sticky] Women Only Forum [Re: ]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Hi and welcome! There is not a ton of active chatter here in the women's forum - post your intro again as a new thread in the main discussion forum so more people will see & reply to it smile

I don't know about the racial/ethnic make-up of our members here - I don't remember it coming up in discussion - other than the fact that descendants of some Native tribes definitely have much higher rates of AS.

A point of clarification - iritis is not AS attacking the eye. It is its own auto-immune/inflammatory condition. A significant subset of spondies do deal with iritis; people with other inflammatory conditions like RA and IBD can also develop iritis. I'm glad you have gotten yours under control with good treatment! What are you taking for your spondylitis?
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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