Ankylosing Spondylitis Community|
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Below are the 20 most recent journal entries recorded in
Ankylosing Spondylitis' LiveJournal:
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|Tuesday, May 21st, 2013|
Just been diagnosed with AS questions to you guys
so I really dont know much about this. My doctor said I can't play heavy sports at all and Boxing is probably the single thing i love the most in the world and i have to give that up?
would ice or heat to my back relieve the pain?
Coffee and green tea effects on it?
Which stretches should I do?
What is your way of preventing or relieving pain?
EDIT: My doctor told me to use voltaren pills twice a day and there was another one but im only using voltaren now since the other one is giving me insane allergies
|Sunday, January 6th, 2013|
New Year: new diagnosis/new medication
Over a year ago I was diagnosed with PMR, which was later changed to Fibromialgia, then back to PMR.
I started the new year by visiting my rheumatologist who promptly informed me that I had tested positive for a the gene HLA B27; Which means that I might have; ankylonosis spondylitis which is a form of arthritis of the spine, never mind that it is most prevalent on males and the onset is in the early twenties and that I am the wrong gender and a few decades over. She thinks that might be the reason we have not been able to wean me off the prednizone. So off I go with an order for X-Rays of neck, shoulders, lower back, and hips; and a new prescription for Sulfasalazine with the instructions: lets see if you tolerate it. It appears the major side effect is not being able to tolerate it. If I can keep it down, we will try to remove the prednizone in due time.
So off I go to educate myself on a new problem, and new medication.; And you know what?; I think my dr. is off her rockers. Just saying. At this point I don't know what else to believe.; I guess I have to wait for the X-rays .and see what they show.; :(
Anyone familiar with this medication? or with anylosis spondylitis in general?
The positive thing is that the Dr is very sure that it is not fibro, (well we knew that) and is not convinced that it is PMR after all. Current Mood: apathetic
|Sunday, September 9th, 2012|
Hi..I'm a new LJ user
Hi I'm a new Live Journal user and am desperately seeking info regarding a specific condition in a specific community. I was diagnosed with AS (Ankylosing Spondylitis) about 3 years ago after having it for probably 20 years. Currently I am having GI problems/crisis very often. I'm finding that this is an issue with all AS diagnosed persons......finding a good doctor, managing diet...I just have a load of questions and would be stoked to find someone or many to talk to....if your out there....help! Current Mood: confused
|Thursday, April 1st, 2010|
Angry..just diagnosed after suffering 35yrs
I am so angry at the moment just recieved a letter about a blood test that got taking & it is HLAB27 pos, after years off agony and many hospital visits, injections, pain killers, physio etc you name it i have been on every pain killer anti inflammatory & am sick off swallowing drugs
I have probably made my condition much worse by choosing the profession that i went into (geriatric nursing) which i had to leave on health grounds due to the pain i was in.
So i have been unable to work, depressed, financially challenged due to not been able to work, been told i had back problems etc, my first Q when i get to Rheumatology will be how could this not have been diagnosed years ago .
I have over the years pushed myself, got angry with myself for not being fit, felt lazy because i was so unfit and fatigued to do things other people were doing, my social life as well as work life has suffered tremendously.
Its all fallen into place now since i got the letter yesterday telling me the diagnosis
Constant flu like symptoms, just getting over colds , having bursts off energy ( well thats what they were to me but probably just normall for anybody else without the disease ) & feeling well for a cpl off weeks then wham something else.
Been plagued my whole life with something or another, but being the fighter that iam i never lay down to it ! dont know if that was a good thing in hindsight but i seem to have battled on for so long that i just broke down and cried lots off times then told myself to get a grip !
Pushing myself when i really should not have been doing so but trying to convince myself that i must do this i must do that ! kinda fright or flight mode...then palpitations which i was told was due to some irregular heartbeat thing ( forgotten the name now ) but will be querying that too , maybee its related as might the constant sinus infections, colds, fatigue, the depression, the stress.
Oh and iam rhesus neg , dont know if that is a common denominator but i read a post here and somebody mentioned that ?
Well iam angry but at last i know what i have
|Wednesday, October 7th, 2009|
Coffee and tea?
Hi everyone....I'm new here and thought I'd jump in with both feet. I, too, have AS, which has completely changed my life and brought it to a screaching halt. Does anyone have experience with eliminating coffee and tea from their diet? I notice that when I drink caffeine, my IBS flares up, then comes the horrible lower back and hip pain. Any other diet ideas?
|Saturday, March 29th, 2008|
"Hey, guess who's visiting me this weekend???"
Your right! Mr. Arthritis and he's all over the place. ouch! Not even the stupid celbrex is having an effect. Feels like a tooth ache in my neck. This is supposed to be spring???? yeah right.
Hope you all have pain free weekend.
|Tuesday, February 19th, 2008|
I was diagnosed last week with AS and Sjogrens. I really didn't NEED another illness but oh well! So, seeing as I had never heard of these two illnesses until last week, I'm bumbling around the internet trying to read up and learn about them.
I have been started on some medications (Planquinil/Hydrochloroquine) and Lodine plus Restasis and Vitamin D (RX).
I am 34 years old, I have a husband and 2 kids (3rd and 4th grades). I also have rabbits and a dog.
I also have some pain which makes getting all the things I do each day somewhat difficult however they do get done (Thanks to my OCD!). Current Mood: chipper
|Thursday, January 3rd, 2008|
cant believe i found this, i was beginning to think i was the only one....
anyway iam a 17 year old AS sufferer from kington nr. hereford. i've had it all my life, well as far back as i can remember.
the first time i actually went to a doctor about it i must have been about 8 or 9 i went to see our gp about hip pain and i got refered to a "specialist" at hereford hospital. no tests were done and i just got told it was growing pains and to be honest i think they thought i was putting it on.
a few years later the pain got worse and i went back to our gp, again sent to a specialist and an x-ray and MRI scan later i was diagnosed with AS, which was nice. too bad that by then i had already lost a significant amount of back, hip and neck movement.
the hip pain isnt as bad as it was and only affects me once every few months or so and when i run down concrete stairs or other high impact activities, back pain is always here and becomes unbareable after being on my feet for a long time, i dont take any pain relief either because i drink a lot.
i also have iritis which i understand is linked in some way to AS, that flares up a few times a yaer and sends me off to hospital for some steroid drops. my iritis was also misdiagnosed my my local GP as conjunctivitis (sp?) and i was given drops that just made it worse, when i finally got to see a proper eye doctor my lens had completely stuck to my something (cant remember the details) and they had to inject something directly into the eye to dislodge it. that has to be my worst experiance with a needle.
nice to find people to talk to,
|Tuesday, November 20th, 2007|
It has been years since I had any bother with the old AS......low and behold two weeks ago I had a flare up. The worst thing is that I had forgotten how painful the whole thing is..... Anyway, I thought that I would throw in my tuppence worth and say that my caffeine is defiantly not helping it. I have cut back on it, and the pain seems to be subsiding..... It would be fab if there was some sort of ‘regular’ cure but everyone seems to be different……..I will continue to swallow the Arthrotek 75’s down my gullet and see it will help….CYA Current Mood: working
|Thursday, July 26th, 2007|
|Saturday, July 7th, 2007|
"Hello out there"
I can't believe I actually found a AS community on LJ. Thanks for creating it. I'll post later. Right now, I'm doing laundry. yuck.
|Thursday, May 17th, 2007|
a letter to the professionals
first off i want to say hi to everyone. i'm new and also kind of new to livejournal in general!
this was originally posted in my personal blog but i think it fits here as well. lots of love!
a letter to the healthcare professional. now don't take this the wrong way but this is going to get ugly. we have tried the 'productive' method of talking with you but it was not received. so we are just going to spell it out here, what so many of us need when we come to see you in all your forms, be you doctor, nurse, therapist that deal with matters of the body to matters of the head, case managers/social workers, really any form of 'care' provider, to just name a few. now we the patient, the client, the self, hereby resolve to do our part, we will even do more if it means we can find a middle ground. but you have to do your end. somehow despite your desire to do so, the ability to give the patient what she needs has oft been lost in the process. it is also acknowledged that some of you far exceed expectations and we are grateful beyond words. we sing your praises to our peers. but to the rest of you, what keeps you from even meeting our expectations. and you cannot say it's just insurance company demands, although we do see you struggling under that heft, but together we can make the most of those 5, 10, 15 and rare 30-45 minutes. so here are some points you might want to consider.
patients everywhere Current Mood: weird
|Friday, January 5th, 2007|
~ AS is very common amoung those of WASP heritage, Celtic heritage, and probably the Druids, too...
~ AS is super common for persons with Rh-negative blood..... (striking mostly O-negs and A-negs)
~ Egyptian Pharoah RAMSES II had AS. Google his mummy's autopsy details.... he had B-neg blood, too.
~ TRUE FACT: because AS strikes a very small part of the world's population (mainly Caucasian people), the money needed for the research & resolution of AS is not exactly rolling in...... and even if it did, I truly believe that science would try to create more drugs for us to take, rather than eliminating the AS problem via prevention and correction.
Believe me, I know what happened to you people is the exact thing that happened to me.
One day in year 2000, I started having non-stop uveitis. Two years later, I tested HLA-B27+ positive, and was given a diagnosis for autoimmune RA/AS. Not one doctor even thought to test me for food allergies. They wanted to keep me on RX drugs, which almost killed me (Methotrexate and Remicade are life KILLERS that landed me in the hospital 3X- I've ruined my DNA from taking these toxins). I still had uveitis, and finally quit going to modern medicine men; no longer am I subject to their science experiments on my body. Instead, a friend to me to a homeopathic chiropractic guru that took one look at me and said "food allergy."
I'd never had an allergy test in my life, and sure enough, wheat, gluten, GM soy and food additives were just a part of my test results. I quit eating such foods, and 1 year later had the Celiac blood test (they couldn't do an accurate upper intestinal biopsy, since I had refrained from eating gluten for over a year). And guess what? I am Celiac. Great..... I also get that nasty-looking Dermatitis Herpetiformis all over my face if I eat gluten.
The ONLY way to make all of my health problems stay away is to NEVER, EVER touch/consume anything with gluten, do not eat non-organic foods, accept the fact that YOU CANNOT SAFELY EAT OUT in restaurants ever again, and get over the fact that for the rest of your life, you will never be able to eat food at someone else's house. You are Celiac with AS, and if you want to stay alive, you WILL NOT let people talk you into "Oh, just a little bite" of whatever it is they've cooked.
This is not like a Weight Watchers diet, where you have room to "cheat" a little.... this is your life. You either eat correctly, or you don't live well, if at all.
By The Way, REMICADE caused me to develop a fungus infection (candida, et al) all over my body! I had fungus festivals happening in my sinus cavities, ears, gut, all over my skin, and in my bloodstream!
More later. Thanks for listening.....
|Tuesday, December 13th, 2005|
Holistic therapies; Gluten Intolerance
I'd been on Proxicam/Feldene (an older generation NSAID) for close to a year
when I got tired of the constant pain associated with AS. I asked my
rheumatologist what he recommended as next steps to reducing my pain level and
his suggestion was disheartening: discontinue the NSAID since it wasn't
effective, replace the NSAID with a heavy duty pain reliever since last year my month
long stint of taking over the counter pain medication did little for me, and
increase my massage and physical therapy appointments. Basically, his
suggestion was to do exactly what I had done for the two years my AS had been
raging out of control and I'd been forced to use crutches because the joints
most impacted by AS were stressed too much while walking. I was stunned that
he would suggest such a thing and decided that I would have to find the
solution for myself.
I had a false start, but eventually I found Dr. Drew Karp, a holistic
chiropractor and acupuncturist operating out of Fort Lauderdale. Using
Applied Kinesiology to read my body's non-verbal language and Electro Meridian
Imaging (EMI) to measure the level of energy traveling throughout the twelve major
acupuncture meridians he was able to determine the acupuncture sites and
nutritional modifications that would encourage my body to heal my problems.
He indicated that my AS was showing itself as a viral strain related to
rubella residing in my spine and that he could encourage it to become dormant
using his various therapies.
Each week his therapies changed based on what my body communicated to him.
Nutritional supplements came and went as my body got the jumpstart it needed
to correct deficiencies.
The EMI results each visit enabled me to easily see how my life choices
impacted my body. I noticed that up to four days after consuming a couple of
servings of alcohol my EMI results showed imbalances and energy spikes in my
meridians. Using Applied Kinesiology, Dr. Karp also diagnosed gluten, the
protein in wheat, and dairy intolerances. Both of these were confirmed by the
homeopathic nutritionalist that I was seeing at the time. Under their
guidence I erradicated all sources of gluten and dairy in my diet and was
amazed to see the difference! My EMI results were more balanced than they'd
ever been! Abdominal pain that had been increasing also went away.
Eventually I realized that not only had Dr. Karp reduced my pain, but he had
minimized it to imperceptible levels, if it even remained at all! My
rhuematologist was amazed and immediately asked for his information so that he
could refer other similarly-situated patients to him.
I continue to see Dr. Karp every week for ongoing maintenance and assistance
with malnutrition related to my gluten intolerance.
Speaking of gluten intolerance, I've read that untreated gluten intolerance
can lead to immune system impairment, which makes me suspect that my AS was
triggered by it. Does anyone here have celiac disease or gluten intolerace?
Or have you heard anything about it in relation to AS?
|Wednesday, November 16th, 2005|
Prednisone drops for Iritis
I've had a flare-up of iritis in both eyes lately and after returning to work, this has got me thinking about the uniqueness of living with this eye problem and especially of the treatment: there are few diseases which require us to dialate our eyes and use prednisone drops this often (every 1-2 hours).
Many people talk about the annoyance of using dilating drops because of their cosmetic effect. The big black saucer eye and the disturbance to vision. But since getting things under control and returning to work, I've come across another issue. I have decided that there is no way to do a drop of PredForte and not look like a freak unless you are in the safety of your own home. The 'invert head, plug the tear duct and hold for 2-3 minutes' deal pretty much makes it impossible to do anywhere without someone seeing you--especially if you do each eye seperately. I'm not even going to go into the lovely white sauce running down your face.
I actually used to go into the parking garage to 'do it', but the 'stranger' the location the more chance that people would think that I had a coke problem or something. (I see a lot people at work and I can't possibly tell everyone about the eyedrop thing... especially when my head's inverted, tear duct plugged, holding for 2...hey! you! come back!)
Seriously though, if you are in a washroom and do the drop in front of the mirror, where it's nice and convenient, people start looking at you or asking if you have a nose bleed (because your head is tilted back and seems like you are plugging your nose.) If you go into a stall, it almost is worse because inevitably in the 5-6 minutes someone comes in and thinks 'why are you just standing in there?' If you sit, it's just awkward leaning back--and what do you do with your pants? It seems time-consuming to go to all the trouble of dropping one's pants to do an eye drop...not so cleanly either. And then there is all that shaking of the bottle beforehand... people are bound to start talking if you're in a bathroom stall, 2-3 times a day, vigorously shaking things... you get the idea.
If you do it in the office or at your desk, inevitably the phone will ring or someone will drop in (pardon the pun). If you do it in the stairwell, it's 'J's got a coke problem' again. The only thing I can think of is to just do the drop with a sign around my neck saying 'Iritis...look it up' or pawn it off as a new religion.
Anyone found a better way to do this?
(X-posted to Arthritis)
|Wednesday, November 2nd, 2005|
Hi folks, just wanted to introduce myself. My name is J and I've been on Live Journal for awhile but I decided to move a lot of my old LJs from another blog into this new blog, dedicated to iritis. Iritis as you probably already know, is a complication of ankylosing spondylitis.
I don't seem to have a lot of the manifestations of anky-spond but I am HLA-B27 positive, pretty sore and I have had a bunch of iritis episodes. Currently being evaluated for it by a rheumatologist. I invite you to take a look at my blog at http://www.livejournal.com/users/eyeblog
|Wednesday, February 23rd, 2005|
Over the past two years (which have been the most inflammation-active years of
my disease to date) I've noticed that when I minorly cut or scrape the skin on
my hands the injury is slow to heal and the skin around the injury is senstive
and inflamed for half of the obvious healing process.
Also, I'm on Piroxicam and ocassionally the levels of it in my body will dip
low enough that I'll feel signs of inflammation beginning throughout my body.
My rheumatologist told me to double my dosage for three days to bring the
levels of the drug back up to an effective amount. When I do this I feel as
if I'm fighting off the stirrings of a strong cold.
Have you heard anything about these two things? Has anyone experienced anything similar?
|Friday, January 7th, 2005|
My rheumatologist has suggested that I use UltraInflamX
a "medical food" specially designed to assist in inflammation management and
gastrointestinal function. It, combined with a special diet (which seems to
be cutting out all possible immune system irritants and popular sources of
food allergens), is reported to have fairly dramatic results in reducing
overall inflammation. He likens the program to "rebooting" the immune system.
The dietary modifications are fairly challenging (What?? No CHEESE?!), but
not impossible. So far all I've noticed after two doses is nasty NASTY gas.
Really. Pity my poor boyfriend who has to share a bed with me! Supposedly
that symptom will subside with time. Also, the powder mixed with water is
disgusting, but I've found that mixing the pineapple banana flavored mix with
1/2 cup of water, 1/2 cup of diet V8 Splash Tropical
, and ice (blended for a
smoothie consistancy) isn't terrible. I'm a low carber and the powder has
fructose in it which is BAD for low carbers, but thankfully I'm in the last
stage of low carbing (lifetime maintenance), so having a healthy serving of
protein with the shake mellows out the high carb reaction in my body.
Has anyone else ever heard of this product? Have you tried it? What have
been your experiences with it?
|Thursday, November 11th, 2004|
Who is taking or has ever taken Enbrel? What drugs were you using before
Enbrel? Did you stop taking those drugs when you got on Enbrel or did you
change them for something else? What are your general feelings about Enbrel?
Do you know of any concerns with using Enbrel for 6 months to a year? Will
Enbrel be less effective if you use it, stop for a long while, and then use it
I've been anti-Enbrel because it compromises the immune system to what I
consider too high of a degree, but I've read that if I take it I can stop the
other drugs and I really would like to give my body a chance to recover from
two years of anti-inflammatory medication.