Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I am new to this site and to AS, and Im not coping

PS the food network is showing a special on ice cream!

LOL that makes me laugh. And thats a good thing.

Ok whats with the 7's. Im member #7000 and I just made post number 70 here.
Might have to look up what the number 7 means I think.
Anyone know?

Sue's definitely right about feeling useful.
I joined this site because I really want to help and encourage others who are far worse off than me.
I realise that I am very lucky to have had a quick diagnosis and respond well to the No-starch diet.
Having a flare up after 10 years (almost forgetting I had AS) has really been a wake up call for me. I am quite ashamed at not taking my disease seriously and humbled by peoples suffering on here.
Thanks for your nice comments about being a positive preseence, Sue, but it takes one to know one!

HI and welcome Aussiegirl (from another ex-Banana Bender)

I had Sever's Disease (in the heels) and my now 14 yo son had it when he was 10-11 y.o too. Some days when he gets up off the couch he staggers a bit and when I questioned him he said "I feel a bit stiff" so I worry about him too.

It's up to you if you get him tested for the HLA B27 marker. If he was shown to have it, there's no guarantee that he will get AS, but it certainly increases his chances... I would just keep him away from water and ice cream for the time being! Seriously though, if he happened to need a blood test for anything else, I might be tempted to ask to have a HLA B27 done as well. That way you can keep a closer eye on him, and a diagnosis could be made much earlier and he might not end up in the sort of state that you (and I) are in now...

I do the NSD and I know it would be hard for my carb-loving growing teen, but the choice is simple - terrible pain or a restrictive diet - a No-Brainer for me *most days* (never easy, though...)

What part of wet Queensland do you live in?

Louise

I am at Bribie Island and flooded in atm I think with all this rain.

My son is happy to start the NSD that I am on. Personaly I have gotten no relief from the paon from it, but as proven here, everyone is different and I figure its worth a try.
My boy has gone from a cross country champion to not being able to run at all without a limp. Realy bad when he wakes up or sits down for too long.
Hope you son doesnt get too bad.
And hugs for you also.

Side note, flights to Melbourne from QLD were only $49 the other night can you believe that?

Oh no!!! Bribie Island?!?!? All that water around you and plenty of ice cream outlets as well. I would be putting floaties on this kid before I let him leave the house!!! Or maybe get a couple of those cheap flights to (dry) Melbourne...

I spoke to my sister in the western suburbs of Brisbane a couple of hours ago - certainly a tad damp in that there part of the world...

It took a while for me to get a turnaround from the NSD - nothing spectacular - just slowly, slowly, things stated to change - waking later in the night from the unbearable pain, feeling slightly less stiff first thing in the morning, and taking less hours to 'get going' fully, then I started to notice that I wasn't desperate for the regular pain relief - I was like "Oh yeah, must swallow some pills soon...." and so it went on.

I'm now 11 months into really strict NSD, and just the other day I ventured into the unknown territory of the LSD (low starch) and have lived to suffer and regret my adventure...

However, I am no longer addicted to codeine, and have halved my other pain meds. Soon I want to start weaning more and see how I go. I gotta tell you though, I am no longer a grouchy (well, perpetually ANGRY, more like....) ogre of a wife and mother. I work as a physio, and some days I just wanted to scream at the patients to shut up and stop moaning!!! (not good for one's professional reputation and would somewhat harm the 'return rate' of the patients... )

The Osgood-Schlatter's and Sever's diseases tend to run a 2 year course, during which time you just have to stop aggravating activities, and use loads of ice, maybe some anti-inflammatory creams, and some gel heel cups in your boy's shoes.

My son's Sever's has completely resolved, but I am just watching him like a hawk. He has just started Roacutane treatment for severe cystic acne (after being on antibiotics for 6 months...) and one of the side effects of that is 'joint and muscle pain' so I do worry... At least he has been taking Klebs Killers for the past half year...

Hope you get a good nights' sleep - I get them occasionally, as I have been a light sleeper for as long as I can remember, so it doesn't take much pain to wake me... I treasure those mornings when I wake when it's light and I remember waking <6x through the previous night.

Sorry Molly, you are correct - I was tired and confused the mrem amounts of xray and ct scans. Oops! Thanks for catching that.

Still, if a ct is warranted, I wouldn't panic about one scan. The benefit might outweigh the dangers - ie. if it means it leads to prompt diagnosis and treatment if queues for MRI are way too long. But I too would question the safety of many repeated ct scans if they're not 100% necessary. Agreed that MR imaging is likely the safer route.

Hope I'm making sense this time around. lol

Hi Aussiegirl

Welcome, to the best family of friends

I am still going back and forth with AS and PsA. I did notice yesterday that my Rheumy, referred me back to the Arthritis Society for PsA (Psoriatic Spondylitis Arthritis).

I am like you and Tinkerbell, I know I am falling apart. I can't take drugs for pain, because of my severe and many allergies and severe sensitivies, that continue to grow. I can't follow the NSD as I may have Porphyria (AIP), and must follow a high Carb diet. I am celiac, and have other diets I must follow. I think the worse I am dealing with is the neurological symptoms, that could be MS or Porphyria. The lesions on my brain, hopefully not growing in number.

Like you if it weren't for my family of friends here, I would have given up. They have been here through depression, not so nice doctors, and my constant complaining. I love them all.

Hugs - And thanks for the lovely Birthday wish yesterday.

Gerri

Hi Gerri, Hope you had a great birthday.

Have been on NSD for a little over 2yrs and no pain relief but hoping it will help with my boy.

Sorry to hear you have had such a rough time Gerri.

my plan worked then!

hope between your doctors and this site, you just start doing better and better