Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group new here!

Hi everyone, I am new 2 kickas, am a 26 year old lady. I am finding it difficult to manage my AS, I was only recently diognosed with it about 5 wks ago, so the medications i have been put on haven't yet kicked in. My husband is really supportive, but some days i get down because i am doing my nursing course and am feeling like will i still be able to do my passion. Any ideas on how, you just get threw the painful days! Many Thanks.

hi! welcome to KA

for me, i have undiff spondy, and it fluctuates as i definitely have flares. so for me, the way i get through the rough spots is partly knowing i'll recover in between. my biggest problems are my SI joint, ribs, and tendency to tear tendons and ligaments during flares.

i started having problems when i was 35 in 1998. back then, i didn't have the knowledge, medical team, tools to help me out and so i went from one flare to another and was bad in between. my body was a mess back then. but then i found some good doctors and PTs and they helped me get things under control.

now i take the muscle relaxant zanaflex, use the nsaid flector patch over my SI joint, and use LDN (low dose naltrexone) because at the time the rheumy i was seeing wouldn't try any other antiinflammatories and i wanted to try something. all of these things are very helpful, though i'm currently in search of a better drug with my current rheumy.

i also have a home ultrasound machine that helps when a tendonitis really flares.

and i've used a lot of ice for inflammation and ice and heat for muscle spasms over the years. that was my main solution til we came up with better ones.

it always seems to be a moving target. once i get one thing figured out, its time to figure out something new. but 13 years later and i'm still working, still managing. and i remember just a few years into this, my stepfather asking me, "if you're like this now, how will you be when you get old." and i remember telling him, i'm just taking it one day at a time. i think that's the best thing. plan as much as one can, but at the same time, take one day at a time. though i think my disease has progressed since i started having problems, think i'm better at managing it now, largely because i've got a pretty good medical team, and because i pay attention to what my doctors, PTs, etc teach me and can largely help myself.

anyway, if you are in nursing, i'm sure you'll learn ways to help manage your disease. plus there are some very good meds out there these days that do help a lot of people.

good to meet you.

Hi Toria, welcome to the board. How close are you to your degree? As someone who never finished school (yet!), I would encourage you to plug away as much as you can before any kids come along. Plus you may find certain fields easier on your body. The great thing about nursing is the flexibility. I know a nurse who moved to the psychiatric area because it was better for her back.

Good luck!

Hi Toria and welcome to KA.

I'm so glad you found us and that you are going for your nursing degree. Well done! You will have an unique perspective on patients and pain that other nurses might not.

As for the painful days, sometimes it's one moment at a time. Learn deep/relaxation breathing techniques to try to relax your muscles. Meditation can ease your mind, which will also ease the tension in your muscles, which will help them release their strangle-hold on your poor joints. I have a wonderful popcorn bag (literally, a cloth bag full of popcorn kernels) which I heat up in the microwave for about 2 minutes. It's wonderfully soothing on the tense areas. Icepaks take up an entire bin in my freezer.

And keep stretching and doing range of motion exercises every day. Don't push beyond what your current pain threshold will allow, even if it just means you only do a partial movement (ie. a head tilt - ear to shoulder - you might be able to get truly good range of motion one day, but the next, only be able to get that ear a quarter of the way to your shoulder).

That's all I can think of right now.

Hugs,

Very good advice, Kat.
I like what you said: "You will have an unique perspective on patients and pain that other nurses might not."
It's always great to try (if you can) to turn negatives into positives somehow, it helps to keep your chin up

Nice to meet you Toria, it must be a bit of a shock to you to get your diagnosis and be finding out what it's all about. Know that everyone here will try to help and support you in anyway they can. I hope your drugs kick in soon and bring you some relief.

Take care, Tink

Hi mom2many, I am in my 2nd year, and i do have 2 children, but no more for me now, lol.. I didnt finish highschool, but now im over 25 im classed as muture aged and didnt need my year 12, I was able to go straight in2 nursing degree. My husband is really great and the kids are at school, so it is working out well. I just get a little bit down sometime, when i have flare up days, and all i wanna do is clean the house or study. And yes you are right, even if i find it difficult working in a hospital i can always work in a doctor surgury. Thankyou .

Hi everyone, and thank you for all your wonderful advise, it is nice to find somewhere to talk to people and they know exactly what you are going through.

That relaxant sounds great sue, I might ask the doc about that, now just taking one day at a time is all i can strive for and lots of positive thinking, and with fingers crossed i get on the right meds, I don't know what it is like over where you are, but over here in Queensland Australia, it is like trying to get blood out of a stone with our doctors. Thank you again so much. Toria

Hi Toria,
Welcome to Kickas.org. I can't really offer any advice on the work related question, but I did want to welcome you to the forum. I hope the medication kicks in for you soon.
Take care,
James

Hi Toria,

welcome to KA, but sorry you had to join this great community - you will find it all here - info, support, humour, BTDT stories - you need it, somebody here will have an opinion or an experience that you can relate to!

I'm a fellow banana-bender waving to you from down south in Melbourne!

I am late 40s and a physio - I started getting spinal pain when I was in 3rd year at uni - over the ensuing years I have moved into areas that are easier on me physically.

As the others said - take it day by day and don't spend too much time worrying about how you'll get to your "use by" date!

In terms of getting appropriate meds - where are you? In Brisbane, or elsewhere? There must be a specialist spondylitis clinic run through the RBWH or PAH (? or both?)

OK - did a bit of googling - looks as if it is at PAH: Hey, I know that guy who heads the unit - he was in the same year as me at UQ!

Head of Unit: Dr Phillip Vecchio

Contact Details:
Phone: 07 3240 2296
Fax: 07 3240 7131

Have you seen a rheumatologist yet? You can always see somebody privately. Be assertive - do your research and ask loads of questions of your doctors!

Here's a few places to get started if you need a rheumy:

http://www.rheumatology.org.au/otherpages/search.asp

http://www.rheumatology.org.au/community/rural_services_displaystate.asp?State=QLD

Hope you find help locally as well as here at KA. (OK - it's a new harlequin smiley - just had to use it!)

Hey Louise

Thank you.
I have seen a rheumatologist in Maroochydore, i am in Gympie so Brisbane is about 2hrs drive south.
I guess i am a bit overwhelmed of what to expect, I have res school for going to the hospitals @ end of this mth, so am looking 4ward to that, everyone here is so nice and helpful, thanks again, it is nice to be able to talk to other people about it.
I read a post about magnesium, think i might go and get myself some of them..

Once again

Thank you I will look into a spondylitis clinic.