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

Hi everyone. I was refered to this site from a member of a completely unrelated site and so happy I am here.
I have been reading through some topics here, both last night and today and it has actualy helped me feel a little better.
I will try to keep this short but sorry if I can't.

Ok here I go.
I am a 30yr old lady and only 2 days ago was diagnosed with AS.
I am realy struggling with the pain right now. I had to go to hopistal last night and they gave me morphine wich made me very sick.
Some past medical history. What is related to AS and what is not I dont know. I though you all may be able to help me with this.
As a young child I was diagnosed with osgoodschlatters disease in my knees. This is an inflamatory disease.
I then developed arthritis in my knees. I also have a lot of problems with my hips and my right hip often dislocates.
during my teenage yrs I had numerous joint problems and back pain. At the time I out this down to being an athlete and living on the farm. I also spent a large amount of time each yr in hospital with croup an inflamation of the airway. I have endometriosis(sp) I had 5 miscarrages but have 3 beautiful kids. When pregnant with my eldest daughter I had toximia and almost died. Then with my youngest I had symphis pubis disfunction, an inflamation of the pelvis. And 3 weeks after she was born I had to have my apendix removed.

In 2002 I was diagnosed with disc disease in my back, arthritis, 2 curvatues of the spine and a tilt complex.
I have been on pain meds and antiiflamatories ever since with times that flare up realy bad.
I have IBS, reflux and other stomac problems from all the medications. I now take somac for this.
Last year I had to see a cardiologist as I have developed heart pulpitations and have quite low blood pressure.
And I have tarigiums on my eyes and get very red and swollen eyes that are sensitive to light.

I recently had another CT scan and found numerous problems with the discs in my lower back and now also my upper back. I have stenosis and lesthesis in the s1 area.
For the last few days I have been in extreme pain. In my lower back, mid to upper back, left shoulder, neck, knees and legs. And my chest aches so bad. After seeing my ct scan my doctor sent me for blood tests and then 2 days ago confirmed the diagnosis of AS.
I have been doing a lot of research in the past 2 days and I guess what I am experiencing now is a "flare up" I don't know what of the medical problems I have are contributed or caused from AS.
All I know is I am in so much pain and just cant take it any longer. I try to sleep and think if I die in my sleep it will be good. But I cant get to sleep I have had insomnia since I was about 14. Even when I do get to sleep, I wake up from the pain.
Sorry to bore you with all this. I am just so lost and so sick of this pain.

Back, shoulder, chest, neck are very common AS pains, and I heard of other people with knee involvement as well, but WOW that sounds like an awful flare!!!

I know my inflammation is bad when I can't sleep, but you might have as much inflammation going as my friend who has a serious case of lupus.

In the long run the NSAIDs do cause additional illnesses that contribute to your inflammation, but you could use something strong to get inflammation down before worrying about that. Maybe a blast of prednisone or something, which also causes lots of damage in long-term use but can help for a short term. Hopefully your doctor will help you get out of this flare -- at least he got you a diagnosis which is a huge start.

I'm starting to forget how bad the pain used to be, now that mine is less flared up, which has happened gradually after getting diagnosed a couple years ago. At first I did NSAID but stopped several months ago when I noticed heartburn starting up; now I'm on another type of anti-inflammatory ("5-loxin" boswellia) and switched to the low-starch diet. Recently the only time I flare badly enough to have problems sleeping is after I goof on my diet. Hope that's inspiring, things can start getting better now that you've been diagnosed...

Hello aussiegirl,
Welcome to kickas.org. I hope you will like it here as much as the rest of us do. I'm not sure to what to say about your conditions, but I can say I have multiple conditions too, some of which might match yours a little. I have A-Fib, a heart rhythm disorder, born with some scoliosis (it's not very apparent though), and I have some stenosis and bulging disks (but in my case they came after the fusing processes got well under way).

You might want to have a ophthalmologist have a look at your eyes to make sure you aren't having iritis or uveitis problems.

You have come to the right place. Have a look around and you will see that there are alot of treatment options discussed here, including meds, alternatives, and even a diet that works for a lot of people here. The diet is called the No Starch Diet, or NSD for short.

Take care,
James

hi and welcome, No Starch Diet is working for me..most of my pills got flushed down the toilet. It might work for you if you can be strict to begin with.gl https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=101430#Post101430

Thanks for the replies.
I saw the Doctor this afternoon and he has put me on oxycodone for the pain and Prednisone starting on 6 tabs for 2 days and then decrease every 2 days. I have had prednisone on and off for yrs.
Doc also prescribed hydrocortisone ointment for my eye.
I already feel a lot better than I did earlier today.

James, I have been on a low starch diet for a while now it seams to help with my IBS also aviod processed meats as they tend to upset me also. And try to not have sugar.
From what I have read here, this is a wonderful site and thanks again for the replies.

Hi again,
I have problems with extra sugars and dairy too. If something is high in total sugars, I can expect pain to come along in a short time. Any more than a single serving of dairy starts fighting me back too. I saw your other post a minute ago. It's good to see you diving right into this forum. Good to know.

Personally, I have trouble staying on the NSD diet, but if I think if it might help someone, I will try to mention it.

Take care,
James

Hi Aussiegirl,

Welcome to KickAS. The sad thing is that when someone finds KA, it's usually because they're suffering and in pain so it's hard to say "I'm glad you're here". At the same time, given this is what you are experiencing, then I'm truly glad you're here because this is such a supportive place.

I'm glad to hear your doc has given you something strong for the pain and something like prednisone to bring down the inflammation while you find a treatment that will work for you. I spent several months last year on fentanyl patches for pain management plus oxycodone for breakthrough pain. I was trying to avoid prednisone but, in the end, gave in and went back on it and was very relieved that I did because I got rapid relief.

From your post in the other thread, it sounds as though you've been giving NSD a good try. What meds have you tried? You mention prednisone but now you have a diagnosis, you may be offered sulphasalazine, methotrexate, various biologics etc. Most people agree that regular NSAIDS are too dangerous to your intestinal system. I take celebrex which is less damaging and also take rabeprazole for GERD (reflux). I have rheumatoid arthritis, rather than AS, but they're pretty similar. I've been taking methotrexate for a while but it doesn't seem to be working yet.

You'll find lots of ideas and experiences on the site as you browse. If you feel you have women's issues to deal with as well, there is a women's forum but you will have to apply for access to it as it is highly confidential and not accessible by non-members. If you are interested in that, send a message to Mig. You can send private messages through the "My Stuff" menu.

The best of luck - I hope you begin to experience some real improvement soon and find a treatment that will give you back your quality of life.

Just noticed, Aussie Girl, that you are privileged to be member # 7000! Hopefully, that's a good sign and KickAS will bring you lots of luck and postive changes in your life.

Hi Wendy,
I have been on so many over the years to treat the varried medical problems and for my back. The latest one was naproxin from memory. I have been on Tramadol 200mg for the past 8yrs but it does nothing for the pain and only upsets my tummy so I stopped taking it. I was meant to be having a historectomy (sp) in a couple of months but I dont know if they will go ahead with it now.

That has to be a good thing.