Spondylitis Association of America Forums General Discussion Women Only Message Board [Sticky] Women Only Forum

Hi All,

This forum is for women. Although these are public forums, we asked that you respect the nature of this forum.

That said...I am not here.

Regards,

Chris

I'm not sure if you get this a lot, but how do I just post something where anyone can reply? I was recently diagnosed with AS and would like to hear about other's stories. Please help.
Thanks
Becki

go to the general message board and click 'new topic'

Becki, the general message board is here:
http://forums.spondylitis.org/ubbthreads.php?ubb=postlist&Board=1&page=1

Or you can start a topic here in Women's as winelover described. "New Topic" is a button with blue text at the upper left above the threads/topics.

The root name of my physical pain has been a mystery for years. I didn't even know there was one until this past Wed(Nov. 10). My doctor has been working with me for 18 mo. (the age of my youngest) and reviewed my case again this week.
My symptoms: so so tierd all the time, foggy head, unable to do 2 simple things at once, pain in my spine, shoulders, low back, SI joints, the dry eyes, nausea, and vomiting (pain related)
The Dr. said they all point to "Spondylitis" and diagnosed me with "Seronegative Arthritis". Then suggested I look them up online at the Mayo Clinic [i]and The Arthritis foundation[/i]. I had no idea...he could have handled that with more tack. Frankly, it has been an emotional coaster seeing all the different types and now knowing if I have AS or USpA or something else I have not yet read.
I have family support and a fantastic husband- I am so glad they don't know 1st hand what this feels like! I do feel the need to find someone who does understand. Guess that is why I am here.
I know God will see me through this and that relationship is undoubtedly the one thing keeping me from being completely depressed. My kids are not even in school yet and at by mid-week I need a break because I am so spent physically and in such pain it keeps me on the couch and my babies go to Grandma and Grandpa's till Daddy gets home. It just makes me cry and pray we have finally found out WHY! I am hopeful that I have seen some treatments beyond just narcotics. My heart goes out to all who have this. We all just take it one moment at a time. God Bless.

Hi there, oh man i feel your pain! Sorry you are suffering, my lack of support at home brought me here and i am glad i did cause there's tons of helpful folks on this site. Some history on me, 1 miscarriage due to cervical cancer, 2 surgery to correct cancer, another miscarriage, 2 premature live births, ovarian cysts, and irregular periods. Currently periods are every 3 weeks and my paps come back normal and so does my blood work except for the high inflammation levels in my blood. I worry that my heart is being squeezed to death cause of the missed beats i get when taking a deep breath. I also feel like i am in a fog and simple tasks sometimes make me cry. The big issue for me is my 225 lb body, i am 5'-10 and boobs are 36ddd! Nursing i was at a bra size of fff. These things are pulling me to the ground. I started an eating regiment yesterday and trying to walk more, i will hope this helps me. I will keep everyone posted on that. Good luck to you i am sure you will find someone here with the same issues.

Welcome to our group. The best way to get involved with our forum is to post an introduction on the main page. That is where most people go to. Just click on the "New Post" on the upper left side of the page.

You will find that SAA is one of the best, most supportive sites there is. Take you time and read a bunch of the folders. You will learn so much. May God bless you as you search for answers to your problems.

Crazed mom,

If you are trying to safely loose weight with diet and low impact exercise check out "clean eating" Tosca Reno is the author, but in addition to the book there is a magazine, and a web site. it's not a fad diet, it's not an "exclusionary" diet like atkins, but it is a very clean simple way of eating that works very well. I have lost over 50 pounds since I started having the AS pain and I eat clean, do yoga, pilates, and cardio on a stationary bike or "run" on an elliptical, as well as using my wii fit.

Good luck, and feel free to PM me if you want any other info.

Thanks for the info asgirl, I will check it out. I just like to eat a lot of crappy snacks that aren't good for me. I am hiking and bike riding for exercise. Do you know if drinking 2 tbsp of olive oil every day will help with the inflammation?

I have not heard anything about drinking olive oil. That doesn't mean it won't help. I was a junk food junkie myself until I started seeing results. Suddenly I became very okay with turning in my candy bars for Kashi granola bars, and my ice cream for full fruit smoothies I made at home. My starbuck carmel macchiato became a soy latte no syrup, and a gallon+ of water a day became my norm. I have noticed a difference in how I felt, because I began expelling the toxic junk from my body, and replacing it with things that could help me. I also found that the amount of weight I carried (I'm 5'2 and weighed nearly 200 pounds)in excess was a big trigger for inflamation. The following website has a list of foods that help reduce inflamation. You might find things on here to trade out for your current faves.

www.metabolismadvice.com

Good luck!

Just an update on me, I went to the link asgirl recommended and printed a ton of info out. This was 6 days ago,I have been eating much better, who would of thought healthy food can taste good too, lol. I have noticed an increase in my metabolism cause i am not falling asleep so early. The Olive oil is pretty awesome too, although my grandmother is diabetic and she tried a tbsp and her blood sugar was through the roof. For me it just seems to lube up the works and no straining anymore if ya catch my drift. ;-) I haven't noticed any pain difference yet but as of last night my "aunt flow" showed up so right now isn't a good time to judge. That link had much helpful info, thanks!

Crazed,

I am so happy to hear that you found the site helpful. If you stick to it you might find as you clean out more and more toxins from your body you might feel better and better. Also, if you ever need any other resources, let me know, or if you find a best practice or a fave recipe, add it to my thread in the alternative/diet section. I am hoping that we can all find things that help us cope.

Beware of the flax seed, too much too fast and you will regret it, I started with 1/2 tbsp each day. As for the no more straining, keep this up, and you will also be as regular as clockwork, with no strain at all.

Happy eating!!

Well I can say i am doing good, down 10 lbs for the first month! I have a little more energy, unfortunately no relief for my AS yet but I know everything I am doing is great for my overall health.
I had Iritis through Christmas in one eye and as soon as it ended it started in the other eye, and of course my back flares up at the same time so...Not a party, but I am heading down the right path now.Thanks for caring. :-)

Ok down 20 lbs, 2 sizes, 2 bra sizes (not happy about the bra thing) and my AS has cooled off a bit as well as the Iritis, but that could be coincidence. Also when i started it took me 1 hour and 30 minutes to climb up 1000 feet 3.75 mile dirt hike and i did it yesterday in 48 minutes! I am moving right along.. Just had to share cause I know my AS peeps care.

Wow, that is an awesome change in just 2 months! You go girl! I had to look back at your first post in this thread, if you were a DDD before and a D now, that is nothing to be bummed about, your back (AS or not!) will thank you through the years! So which dietary changes have you stuck with?

Awesome congrats!! Keep it up!

Thanks ladies, I have stuck to not eating after 7,that is my biggest weakness. And for a snack I eat coco roasted almonds ( almost no salt in these) or raw nuts, fruit or veggies. I also have been eating a ton of beans. And of course nothing fried, I made non-fried chicken enchiladas and they were Sooo delicious!
The size d would be nice Jen if they weren't pancakes, lol.

LOL @ pancakes! do you have kids? if so, blame them!!!!!

I'm very impressed with you sticking to such good choices, I know from experience it can be done but it is HARD and you have to be motivated. Keep up the awesome work!! And make a trip to Victoria's Secret

Thanks Jen, yes 2 kids, already blamed them hahaha. Victoria's secret sounds fun, never purchased from there before cause they don't carry over size 14. But soon i hope to be a 14 or lower!

Hi, Ladies,
I have both Spondylitis and Reactive Arthritis or Reiter's Syndrome and have had unbelievable bladder and urethral issues for the 2 years. Since starting Simponi, it is much better. And the urologists cannot seem to decide if the feeling of the porcupine living and squirming in my bladder is the AS/Reactive Arthritis or if it is Interstitial Cystitis. I am wondering if any of you ladies have similar bladder and urethral issues if pain like a porcupine squirming around ... Or perhaps a jellyfish stinging the inside of the bladder and sending stingers down the urethra. Please respond if you have any input. I would greatly appreciate any.
Thanks,
Mama_Quay

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. 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.

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.....

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.

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.

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).

I was the one who ignored, but now am choosing to educate my self and she just kinda hangs out in pain.

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!

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!

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.

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

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?

Frivolous Question: I was diagnosed with AS this past December. It's all new to me. I'm having an incident in which I have minor symptoms of a cold:stuffy, scratchy throat, intermittent aches and exhaustion. I'm going on vacation tomorrow. Is it safe to color hair with a semi-permanent product?

Why would it not be safe and how is it related to AS? Hope you had a good vacation!