Hi Jaye

welcome to kickAs - you will find a lot of great information here and loads of support.

with regard to your Q's of iritis I think that has been well covered and you know if you have it and get to an opthomolgist quickly when you have it.

I have 2 small kids 2 1/2 and a 17 month old and I have started to do some yoga in the morning after they have breakfast - I started with just a few stretches and am building a little longer each day - of course they climb on me over me and under me depending what pose I am doing but they are getting used to me doing this and I find it is the only time of day that I can spare 20 - 30 mins to get something done for me; come the end of the day, forget it I am done so i find the am works.
I am 41 and so far my symptoms are mild so that I have only needed medication for my iritis and I see the rheumy a few times a year for follow up - It would be very bad luck for both you and your husband to have AS but it does happen. As for your kids it could increase their risk but that is out of your hands and you know what symptoms to keep an eye out for, worrying unfortunatly will not change that - I was also diagnosed after I had my kids.

Good luck with everything

Kylie

Hi there Jaye - a warm welcome to KickAS. Think most of your questions have been addressed but perhaps some small input from myself might be useful? (Or not!) I am near to 70yrs old, my (now ex) GP gave me an AS dx during a huge flare, and my first big all-time scary flare, when my neck conked out on me, couldn't lift my head without support from my hand - and the pain...not good. Went on for a few months, got a reprieve then went into another flare. At the same time was throwing eye wobblies. From burning pains to brilliant blood infused eyeball - very pretty - and then to blurring vision and finally double vision when looking at lines - that made driving interesting, not. During all this the various meds gave me endless gut problems, until it got to the stage where if I had eaten I was terrified to leave the house (got caught out too many times). My GP kept just changing the meds, did nothing about a referrel and I continued to go downhill. Then other parts of the ole body started to play up: feet like walking on glass shards; hands with trigger finger; knee and couldn't walk properly; elbow accompanied with painful movement; shoulder and pain with loss of ROM (range of movement). Just went on and on. All the niggles that had been creeping on up over the past 40 odd years took a huge bound and broke out the corral together...

Thank God I was directed to this group. About the only thing that my ex GP did was to suggest checking out the internet for AS forum groups. I will give him credit for that. And of course, I found a wealth of information including the LSD diet. And has that been a help. Yes maam. Saved my gut, mobility and sanity!

Changed my GP. Got me to a good opthalmic surgeon - cataracts. Bliss, I can *see*: still do get blurring but now have ?? early Sjogrens Disease - not a cause for a death certificate, it is incurable but can be managed. Saw a good gastroenterologist: he found ademomas, removed them and opined that my GP and he (!) had saved me from certain cancer of the bowel (my grandfather died of cancer of the bowel and now my first cousin - on that side of the family - is experiencing problems). Shoulder went into a big time humdinger - but that is quite another story, and one waiting to be told here (but irrelevant at this time).

Was referred to a really bloody useless rheumy, (needn't go there, yawn) then located a good one who left the country - great, don't weaken, am now searching for a good rheumy, but that can wait awhile. Have X-Rays various showing changes in the hips and sacroiliac; have a sternum that has gone real strange (forget what it is called!); have a khyphosis on the right side of my back; have what appears to be a possible start to fusing on the right ribcage; have severe degenerative arthritis of the shoulders and severe degenerative disc disease C3-4/C4-5/C5-6 (or whichever, not important)

I try to keep off the big meds but do have to have recourse to NSAIDS, take Celebrex as it does not have the side effects of the other anti-inflammatories and take pain meds, have a small selection that we find do not cause (me) side effects.

I do take a variety of supplements and try as far as possible to keep off, away from, the pharmo meds. Will be posting some info on that later.

Do my stretches. Just sitting up properly at the computer, straightening out the scapuula, doing sideways stretches; standing up from time-to-time, sideways stretches, lifting legs and a stetch. Standing tall against a wall trying to get as flat against the wall as possible. Arms overhead (well, not now, no ROM, but 'did' a few months ago) so one arm Touching toes, don't matter that you don't succeed, that aint the point, 'trying' to is the point, getting the s-t-r-e-t-c-h is the point of the exercise!!

Pilates is excellent, but you'll need to join a class for Pilates and have a real good instructor. Yoga is good. Again, a good instructor is a must. Stay well away from aerobics, they could well cause damage. You are not looking to puff an pant, no-pain no-gain idea - that is counter productive, could lead to torn muscles and untold damage. Gentle stretch: hold, relax, stetch is the answer. Especially those sideways rib expanding stretches. One of our members posted a whole series in the Forum here, only a few months ago now. Let's put out a call to locate em. Will make up a separate post. OK?

Walking can be good, so long as you keep the core body muscle, that is the abdominals tightened (takes practice), good abdominal muscles helps the back and the hips, very important especially for women: saggy abdominals means saggy spine which can only lead to back pain! And keep as good a swing to the hips as possible. And shoulders back, head up. Swing along. Does not have to be fast fast, but aim for a good rhythm. It's the rhythm that does it. I swing out with a small hand held radio, can hear soe nice music as well as any traffic - me and dogette go swinging out, up into the fields. Good stuff. We both enjoy it.

Good diet, keep it fresh foods and organic where possible. Learn to read labels and eschew ALL ready made shelf meals and leave ALL sugar substitutes well alone - they are toxic: i.e. Aspartamine, Sucraloose etc etc. If you want sweet, honey is good, pure molasses is good, brown cane sugar, and Stevia - a very sweet herb, brilliant as a sweetener, no calories and non-toxic! Good recipe section right here on the Forum. Can also start to collect your own recipes, keeping an eye out for recipes in mags etc. Oh yes. Sodas. Chuck em all out - full of aspartame. Get yourself a juicer. Good for all the family.

Don't know IF this has helped you any at all. The big AS family is here - and one of the very best families that you could ever meet. Tell ya gal, it's a good place to be with this AS thing, so a big 'welcome'.

You take care hon - be good to yourself. Your body strength and inner strength is needed for your wee family, so be kind to yourself an give yourself 'you' time, every day. Go well - and here's a cyber {{HUG}} -

Keeping on Keepin on (you bet)

Welcome to KickAS Jaye. This is a great place with so many wonderful friendly people full of knowledge and eager to help one another.

I am sorry you are having to deal with this. It is not a fun hand to be dealt but it "can" be played successfully. You can have a good full life.

I have multiple diagnoses; AS, RA, OA, Fibro, SLE, chronic Iritis, Hypothyroidism. If it is autoimmune, I have it. I was diagnosed with JRA when I was 14 but was sick for a long time before that. I am 63 now. We raised 3 beautiful daughters and I had a wonderful career until I had to go on disability at age 43. Life goes on.

My hubby suffers greatly with RA. His back is more fused than mine but he has never been checked for the B-27 gene. I am positive but he/doctors see no reason to check him. Bottom line is treating symptoms. I asked my dr. how he knows whether it is the Fibro, the RA, the Lupus or what that is flaring and he said he can tell by where I hurt. I particularly don't care which it is as long as I can feel better.

We have a son-in-law with AS and of course I have been concerned about my grands with it on both sides. My daughter says, "Mom, don't worry about it. There is nothing that can be done about it one way or another and we aren't even thinking about it unless something bothers them. The plus side is knowing the family history and knowing what to bring up to doctors if the need ever arises." Smart daughter we have there. Their daughter (early teenager) has back pain a lot and has had MRI's, etc. but no blood work. She is into Western Horse shows, scuba diving, LaCrosse, etc. and they choose to think she has hurt it with all of her activities. They aren't going to plant into her head the chances of disease.

You will know for sure if you have Iritis because you won't be able to stand to open it in the light, it hurts so bad. I can tell mine is flaring before it even starts getting red. I have been treating it since I was 30. I am on 5 mg. oral Pred. daily and 150 mg. Imuran daily to protect my eyes. That is the only thing that holds my Iritis/Uveitis.

I have occasional heart palpitations. It feels kind of like a long pause or that your heart skips a beat which it doesn't; it really is a long pause and then a couple of fast ones. I was on meds in my 20's for arrhythmia but have been off of it for many years. Caffiene aggravates mine.

As far as worrying about the meds, I have chosen not to be on the Remicade (at this time). I go back to the rheumie tomorrow and I may go on it. The only reason I am not already on it is because of the Lupus. The Imuran is a chemo drug with some pretty potent side effects and the Pred is potent too. I have been on very high doses of Pred in the past. My suggestion is to "not worry" just be as educated as you can be and make a decision and think positively.

No, AS doesn't come from STD's. I do know that you can have a false positive reading on Syphillis tests for Lupus anyway. I don't know about AS but it is a gene not an STD.

I try to exercise. The pool is the best exercise I have found. As far as your kids, I would keep them very active but I wouldn't have them stretching "just in case" because I wouldn't want them even thinking about the "just in case". Just keep them out of the front of the TV and computer and active as children should be.

You didn't ask too many questions. Come back and ask all you want. I do think you will get different answers from different people as we have all learned our own ways of living with chronic illness.

Listen to your body. If you need to rest, rest. My hardest time was with a very responsible job that entailed long hours but I loved every minute of it. I didn't listen to my body or my doctors about slowing down until I cratered and ended up in the hospital and in bed for over a year. THIS WAS FROM LUPUS NOT AS. Now I do listen to my body. I do get up early and get out with the dog and water flowers, etc. before it gets hot and then I stay inside and sometimes I go back to bed. I know it is not as easy when you are still raising kids. Been there and done that too.
Don't hestitate to ask for help "if" and "when" you need it.
When you need to lie down, just get the kids to lie down with you and read a book to them especially at naptime for the 2 year old. Just take one day at a time and you will learn what will work for you.

I wish you the best and blessings for your family.
May you have a glorious relatively painfree day.

Possi

Hi Jaye, welcome to KA!

I'm sorry you needed to find us, but very glad you did. As you can see, the folk here are very knowledgeable. We have all asked the same types of questions as you at some point or other, and each of us has (to some degree anyway) found the answers that work for us. If not, we're still searching.

I encourage you to try the diet. Alot of people have had very good results with it. It doesn't work for everyone, but it's definitely worth a try.

Also, regardless of whether or not the diet works for you, please make exercise a key component in your treatment plan. It is the one thing that will remain beneficial no matter what you are doing or taking to bring down inflammation (ie. diet or drugs). Just remember to start where you are now. If you can only do one minute at a time (because of pain, or because of lack of exercise to this point), then do one minute, 15 times a day and build up to 15 minutes at a time. Start with stretching/flexibility. This will ensure that your joints stay mobile and will also help your tendons and ligaments (which play a part in AS). Once you can do 15 minutes of stretching in one shot, add strengthening/weight training of some kind. This will help your muscles do their job of supporting your skeletal structure. A bottle of water is a great substitute for weights. When you can do your 15 minutes each of stretching and strengthening, only then add cardio. This is because by this time you will have toned your muscles and joints to the point that they can do their jobs properly as you get your heartrate going. Cardio can be swimming, walking, whatever turns your crank. If you have difficulty with full body cardio, sitting in a chair and moving your arms like an orchestra conductor will do as a substitute until you can do full body. And, again, if you can only do one minute at a time, start there and work up. Stretching and cardio can/should be done every day, once you've worked your program up. Strengthening should be done on a rotation so that different muscle groups are worked on different days. This gives the muscles a chance to recoup.

You mention that you homeschool your kids? Perhaps you could make stretching/exercise a part of their school day. Something fun that you can all do together. And if you are having a particularly bad day, back off of it. Just do gentle stretches and breathe your way through them. You will find your own pain limitations as you go. Just listen to your body.

Any med you take is going to have side effects to some degree or other. All I can say about Enbrel and the other biologics is that they have been miracles for some of us. I started Remicade a year ago and every day I am blown away by the changes in me since starting it. Do your research, ask questions and make the right decision for you.

The doc that said AS is caused by STDs should be shot, by the way. What an idiot.

It would be weird in the extreme if your husband has AS too. I hope it isn't the case.

AS presents extremely differently in women than it does in me. It doesn't generally progress as quickly in us and we don't usually have the severe spinal curvature that men can get. Every case is different, of course, but that's the way it is generally. The latest ratio of men to women with AS has now been upped to about 3:2. Dr. Mohammed Khan (world renowned expert who has AS himself) feels that this is the actual ratio because women are so often misdiagnosed.

Unfortunately, sometimes you have to keep living your life, no matter how horrible you feel. On those days, long relaxing breaths can be a big help (so would a punching bag for that matter). Be patient with yourself and others, and just do what you can.

Hugs,

I was surprised to see all the responses this morning as I logged on...wow!

After looking over more info I am realizing how fortunate i am to have been diagnosed so quickly for me it felt like an eternity...but now i realize 8 mo after a flare up really isnt bad! It gives me hope as far as playing this game on the offense rather than the defense!

My rheumy was awesome I walked in the first visit, we talked and i handed him three pages of symptoms/frequency and a whole lot of other info...he sent me to lab, called a week later and sent me for a c.t. of the s.i. joints..I walked in the next time, he tossed my chart on the table, said i know what is wrong with you, you were right something was very wrong, you listened to your bady and fought for answers. you have a.s. and then explained what he thought we should do...he is very familiar with a.s. and a dr. that shakes your hand when he walks in and takes time to be sure to answer all your questions. He encouraged me to look on the interent for more info, and that is how i found kickAS...I have an appt on mon. and get to pick up a "medical assist card" that will help on the financial front to get me started on the enbrel...im sure i will be posting many more questions when that happens...I hate shots

Possi>>>>your daughter is very wise, that was some very good food for thought...thank you!

Dragonslayer>>>i will check out the nsd forum next time i get a bit of time, thank you for the info on that...i was thinking the nsd was like the atkins...you set that straight...thanks!

To the rest>>>I am still reading and thinking over your information...thank you for replying!

As for the info on the palpatations, sometimes it feels as though my heart jumps...and it scares me...ive mentioned it to the dr. before, but not really firmly...that is why i asked for more info...thinking i should mention it to the rheumy on mon.

Caffiene was cut out of my diet a year or so ago...i miss my morning cup of energy...but now i just drink hot water, or caffine free/herbal tea...i hate soda always have, in fact it has been very interesting to see what i have cut out of my diet all on my own just out of what i like/dont like or what makes my tummy hurt...during my last pregnancy I started this love for fruits and veggies, and meat just wasnt that great...i eat it but not as big of portions as i used to. Which was one of the reasons i was worried about the nsd because i survive on carbs...ill have to work on that.

The biggest thank you for the reminder to sit/rest when i need to...I am a fighter and have a tendancy to push till something is done...not till im tired...and usually i push myself too far. It was a good reminder as I start to homeschool my oldest and have taken on a b-sit job of a 3 yr old boy to help cover med. expenses...sit...rest...lay down...those are odd concepts : ) just kidding! they are EXCELLANT reminders...THANK YOU!!!

Blessings on you all
Jaye

Hi Jaye. I am new too, I haven't been diagnosed yet but I think I have Rhematoid Arthritis {RA} and AS.

I wanted to share a little with you about my eye. I'll try to make a long story short. My first attack was Dec 2004, I woke up and my eye was very red, sore, painful, and sensitive to light--I ended up at the opthamologist and he said I had iritis gave me drops, I used the drops for about 2 months, the opthamologist sent me to get a steroid injection in the eye [ahhhhh!!! I hate needles!!!]well I guess that worked somewhat as I could see and the eye wasn't too painful. However, I still had the iritis in the eye it was just kinda dormant [I thought it was gone!]. This july I had another attack of iritis [but it wasn't painful, I just recognized the symptoms] I went to my optician to get an eye test done, she wouldn't give me a prescription she wanted me to go immediately to the opthamologist. Well, I didn't, I went to my GP first, then he told me to go immediatley to the opthamologist! Well I couldn't! I had to go to Children's Hosp. with my almost 3 year old daugther for testing [related to another matter!!] for a week. So long story short, I finally made it to the opthamologist yestereday! More drops, etc. However, he said to me with how my eye looks to him I should be in a lot of pain! That is why I am replying to you. I have iritis but it is not painful!!! Did your doc say you have iritis? It is quite common with AS [from what I can gather in my research] and can be very serious! Just because it isn't painful to you that doesn't mean it isn't doing damage! Make sure you are taking care of it.

Also, the steroid drops you need to put in your eye can cause cataracts over time that may or may not need to be operated on. BUT, steroid use does NOT cause AS!!! Go to a different doc!

From what I can see/research there are lots of women with AS perhaps our 'higher pain tolerance' is a factor in diagnoses!!??? After all we do manage child birth!

On another note, I am 39, and have three children as well James, 11, and Adrian, 9, and my daughter Elisabeth, almost 3 [Sept 7]. I also homeschool, kinda crazy, hey??? but I wouldn't have it any other way!

I am currently not on any meds [besides the eye drops and ibuprofen]. I don't have any real pain, just what I would call discomfort!

I hope you get lots of replies and that the replies help you to feel easier and to be able to cope with your daily duties as wife/mother!! Do you work outside the home? I will assume not as you are homeschooling!

Anyways, hope you have a good day today!
Rita

https://www.kickas.org/ubbthreads/showflat.php?Cat=0&Number=231403&page=&fpart=1&vc=1

https://www.kickas.org/ubbthreads/showflat.php?Cat=0&Number=203614&an=0&page=2#203614


AS exercises

https://www.kickas.org/ubbthreads/showflat.php?Cat=0&Number=201342&an=0&page=1#201342

Here you are jaye - Promised to post the AS exercises. Cindy, a forum member and a physiotherapist, very kindly put em together for us. They are excellent. Now there are other exercises and when I have a stretch (!) of time to dig em out of my opencast filing system I will post the links to em here.

Just wanted to mention that your doctor must be a first class prize prat to state that AS comes from STDs... That just really beats the band. (Can't wait to relay that one to my GP - he'll fall off of his chair with amazement, and roars of laughter! ) Has to be the best in a good number of years! Help... What I suggest you do is check around and get the fella a nice booklet on AS - they are available. Present it to him with your very best regards then dump him pdq

Heart palpatations. Yes. Mine has periods of going wild. Thrumps around all over the place, wakes me up, stops me going to sleep, makes a darn nuisance of itself. Wore a thinggie for 24 hours, nowt! Go figga. Yes. I do drink coffee. And certainly have a glass of wine every night. For the past couple of months it has behaved itself, until this past 48 hours. Think it could be stress levels, dunno.

But if you are concerned, you can get it checked out. Will have to wear this contraption for 24 hrs - yr kiddoes will find that quite amusing...can't operate a microwave whilst wearing it BTW, otherwise you'll strip the input clean! Oh yes, what do they feel like? Thruuump-thrump tthhhruuump-thru-uumph-thrump thhhrummmph-th-rum-ppp thrump thrump t-rr-th-rump etc. IOW uneven and someimes like your heart is literally in your mouth or dancing a rather wild Irish jig Weird, but everyone will be different.

Hope this has helped a tad - but above all, get some you R&R time. Veryeee important. Cyber hugs from across the ole puddle -

Molly
Keeping on Keeping on (s-t-r-e-t-c-h-i-n-g ya)

SOME CLARIFICATION!!!!!!
it wasnt my gp it was my husbands...I guess i didnt make that paragraph very clear. My husband went in to HIS GP to ask to be tested for AS, HE was told that it could be caused by std's...so when he got home and told me that I didnt laugh i was FURIOUS! How dare someone who obviously knows nothing tell someone a line of crap like that! About his wife....Needless to say I had to go through all the disease info again and that no one knows what causes it...but these are possiblities...but NONE of the possibilities are stds...and i dont have one and never have...
I put that paragraph in two fold...1)as a question if i should have my husband get tested by my rheumy (his aunt has A.S. and he has had hip pain since he was 13) and 2)
I like to laugh at things and figured you all could use a good laugh too...I dont think that dr. is going to be a popular one...
Jaye

Hi Jaye - Your poor husband he must have felt devastated: Hmmm, reckon he could possibly sue that doctor for saying that, should have got it in writing from him Not happy for you either having to counter such an allegation...ho-hum. But the other side of the coin is sheer hilarity. The guy needs some educating methinks. Get that booklet, available from - http://www.spondylitis.org/ Go present it to him personally with a note to advise that he's VERY lucky not to find himself with a court case around his neck!

Hope you found the info on the stretches useful. Take care -

Molly
Keeping on Keeping on (s-t-r-e-t-c-h-i-n-g)

Howdy and welcome !
So glad you found a good doc, that's part of the battle
I too suffer form palpitations, mine are extra upper chamber heartbeats, and I have had them since I started having problems which eventually led to my diagnosis.

Docs aren't worried about them, so I won't either... I have enough on my plate, just wanted to let you know you're not the only one !~

hugs,
fishy

Hi Jaye

I would also add, with regard to your homeschooling, it's a good idea to get your kids to take a break every 20 minutes and stand up, wriggle round and have a shake - this is something they suggest with training days and I use it with my adult learners. It actually helps them concentrating. You can have a good old move, wriggle, stretch yourself at the same time. Then, before everyone sits down, you can get each person to ask a question of someone else about what they have just been learning.

And get your kids involved with your care - I only have the one son, he's now 19 and I'd had AS for 11 years before he was born. If I was really hurting on my neck or shoulders or rib cage, even as a little boy he would give my back/neck/shoulders a little rub with his tiny little hands to help it and you know, it did - I just think it was the love that helped. Good luck, Louise