Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Just received news

I am 23, female. Yesterday I was told that I have AS. I have the gene and
they did the bone scan.

I got health insurance last year because I was having trouble going to the
bathroom and my back was hurting often. I went to the doctor as soon as I
received health insurance. I told them about my problems.. they put me on
IBU and stool softeners.
I told them it was not helping and they put me on more stool softeners and
told me to go to a chiropractor. I started going to the bathroom but only
with the help of the Stool softeners. They put me on an anti inflammatory.
Didn't seem to help.
They ordered an MRI.
The MRI came back with 2 herniated disks. They said that even though I have
those I should not be in as much pain as I say I am in. My bowel problems
continued and they ordered a colonoscopy. That came back clean.

I was being shuffled to several doctors.. all the time I am telling them
that I hurt a LOT and sometimes worse then others, I am tired all the time,
I have a low WBC count, they tried a few anti inflammitories, and gave me
viccodin. They both did NOTHING. They gave me Flexirol to sleep at night,
that does help me sleep most of the way through the night but I still hurt,
I'm just asleep.

So I finally went to a specialist in a bigger city. He ordered a lot of
tests and one came back positive. HLA B27. And he did the bone scan. He told
me today that I have AS. I am relieved as well as scared as all heck.
I am 23!! I am not suppose to get sick .

So all these symptoms seem to fit together now.
The bowels, the tired, the pain in back and randomly in legs, the feeling
like I am sitting on something sometimes, the WBC count, .. all of it! Im
not crazy! I was beginning to think that I was just going nuts.

So I also have a question. I work with a little boy that has cerebral Palsy.
He is 4 1/2 and about 35-40lbs. He is held 24/7. I have to sit in a
wheelchair and hold him. This KILLS my back!! Thats what I thought the
problem was this whole time but it didn't always add up. I am wondering if I
should change jobs if I want to have my back the best it can be later in
age? What should I do? Please.. any help on any of this would be wonderful!!
And tips on pain control?
I need a new bed.. I know that..
Thank you for reading this.. I am so lost right now and just need ANY advice
on anything..

So things that I wonder if are connected with this are
-a month ago my left arm hurt and when moved in a certain way feels like the
muscle is pulling and ripping off bone.
-Constipation
-upper back aching-feeling as though its one fire when sitting certain way
for any amount of time.
-Lower back/leg PAIN.. sometimes REALLY bad.. sometimes okayish.
-Feeling need to move a lot
-low WBC
-feeling like I am sitting on my tailbone
-cold hands and feet
-Eyes feel dry often
-hands starting to dry and crack
-Im sure there is more but thats all for now
Thanks!

Hi,nice to meet you!
Have you checked the NSD forum?Sounds a lot like me...the gut symptoms along with the pain.Diet has helped me tremendously but it's hard and takes a lot of time and effort!
Whatever you decide,Good luck!I wouldn't think you should quit your job if you can get suitable treatment.
Shauna

Cryssfriend - Yes to all of the conditions that you are presenting.

Dry eyes, possibly Sjogren's (rotten this one)
Dry skin, possibly Sjogren's (please get this checked by rheumy)
Painful shoulders - a common problem with AS
Gut - common with AS (many of us here can relate to this)
Cold hand and feet - Reynaud's (wretched in cold weather)
Sitting on tailbone - quite common
Upper back on fire - inflammation, enthesisis
Lower back - common
Leg pain - often found, painful shins
Lower back pain - yes
Left arm - painful on movement, could have a rotator cuff tear
or could be associated with cervical (neck) problems. Run
this past your rheumy, may need to 'also' see an thopaedic
specialist
Fatigue - yes

Heigh lass, the list can be, errrrmmmm, sort of long'ish !

N.B. Please do be aware of eye problems with AS. There is a nasty one, iritis, that requires *immediate attention of a opthomologist... Might *never happen to you, but, always good to be aware.

Lots of information here on site. Put in a search. Also, look at the diet section of the forum groups and also at the alternatives. Lots more information there.

Remember to keep stretching. There are stretches posted here by our physiotherapist member, Cindy. You will also find stretches posted on the NASS site, that is the National Ankylosing Spondylitis Society (UK association). Key Words: Use it or Loose it!

Heigh, but, WELCOME to the KA family. Great that you found us - just sooo sorry to learn of the need. To make you feel a tad better, there are many here around your own age group.

Ask questions and pile in. Others will be along presently to welcome you. Hope to speak again soon. And yes, congrats on finding a rheumy who 'did' the necessary, i.e. getting that bone scan done (presume a nuclear bone scan?) He did well by you.

Now take care lass -

Molly C (France)
and about to go to bed, cause it sure is late - trois heure dix minute: 3.10 a.m. !

Cryssfriend - forgot to say about dry eyes: IF dry eyes, artificial tears, preservative FREE. There is also Dacudoses, an eye wash and for night time LacriLube - an ointment. These are all pretty good for dry eyes.

Don't leave your job, is there any other way you could manage the child? IF not, any other child that you could go help with? Am 'sort of' presuming that you are involved with an assistance programme? Hope you can sort summat.

Take care -

Sorry to say that most of that sounds quite familiar. You certainly aren't nuts and you have the right attitude about your healthcare - you are in charge and you hire specialists to give you good advice. I like to imagine I'm the CEO of the most important company on earth...me.

Being hit with this so young is certainly a terrible and frightening thing but this also gives you the advantage of learning about your disease and how to prevent or slow the degeneration over time. There are incredible advances that older members never had a chance to benefit from. Biologics have been wonderful for the majority of people but there are potential problems that your doctors will explain to you when you get to that point.

Whatever treatment program you choose, mild stretching and mobility exercises will benefit you. It's also important to remain as active as you can for as long as you can.

I often wonder if it is better to learn of your condition earlier than later and I just don't know. On one hand, I lived a very full and active life that most certainly would not have happened had I known of AS. My condition is also worse than it would have been had I been educated at a younger age...I really don't know ...I suppose fond memories are small comfort when the pain is raging out of control.

You have the opportunity to live a full life AND protect your body from the ravages of later years. That would be one possible silver-lining in an otherwise rotten, black cloud.

As others have pointed out, there are many forums in here on diet, sports, medications and all sort of stuff - check it all out and try not to freak out too much. Many of our members have found ways to cope and live with AS and everyone has something useful or interesting to offer. Hopefully, you'll learn some things that really help you out.

I'm sure you'll love it here,

Take care

Chris

Hi Cryssfriend - just wanted to say, welcome to KickAS. I think you'll find most of the answers you're looking for here.

Thank you all so much for your information and support.

about 14 months ago I joined a group called FA (Food addicts). I was 234 lbs. I am now 131. I don't eat flour and sugar and I see that the no flour is recommended. yay, got that one down!

I will be starting PT up again next week, I go to the doc 11th of March so until then I continue to live with the pain but its just a couple more weeks until we can start the journey of figuring out how to control this.

Does anyone have suggestions on bed? Tempurpudic?
Thank again everyone. I look forward to getting to know you all!

And here I thought you were gonna mention my "I pretend that I'm a CEO..." comment.

Chris

One possibility for the bed is get whatever is not super expensive and buy a separate memory foam layer. That's what I've got, nice and thick. There is a drawback though, with something that squishy -- it makes it even harder to get out of bed, which is already challenging enough when you're stiff and in pain. The trick is to carefully roll to the edge onto your stomach, then carefully lower your feet down...

P.S. congrats on the diet, excellent that you already cut out the flour and sugar

Also one comment about pain control: try to avoid using NSAID on a regular basis since you've already got digestive problems. I thought of myself as having perfectly good digestion (though probably that was not really the case) and went with my rheumatologist's recommendation to use Aleve daily (instead of the prescription naproxin). He thought it would be no problem because it wasn't a real strong dose, but within about a year I started getting heartburn

Now my standard anti-inflammatory is herbal stuff such as fish oil pills and 5-loxin (potent form of boswellia) while Aleve is reserved for occasional worst days. Heartburn be gone! Unfortunately, 5-loxin is one of those things that works very slowly (I think it took weeks to even notice) and does NOTHING for the pain you've already got, so it does help to have something else for bad days.